Lyra’s Eyes at Three

Whoopsie Piggle can be found on “Down syndrome Blogs,” a site that aggregates Down syndrome blogs by category. One of the categories where Whoopsie Piggle is listed is “Dual Diagnosis” because Lyra was born with congenital cataracts in both of her eyes. Since her birth, the idea of my child being blind has been far more worrisome for me than her diagnosis of Down syndrome and while I hope this essay appeals to a variety of readers, I most wish to share what we have learned with parents of children who have both Down syndrome and vision impairment issues. 

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This past fall I finally gave up. And when I did, my relief surprised me.

“You know, even in kids without Down syndrome, somewhere between 18 months and four years old they typically stop tolerating contacts,” said Lyra’s ophthalmologist more than a year earlier when we started having problems keeping contacts in Lyra’s eyes. When she was a baby the same doctor had said that he would prefer to keep Lyra in contacts for as long as she tolerated them. The word “tolerate” when used in a medical setting sounds like a biological event over which there is little control, such as when organ transplants are tolerated or rejected by the recipient’s body. But in the case of contact lenses “tolerate” is a euphemism referring to behavior.

Lyra began wearing contact lenses when she was six weeks old. Because she was born with cataracts in both eyes, her natural lenses were surgically removed. Unlike when an adult has cataract surgery, however, synthetic lenses were not swapped in where the natural lenses had been removed. That’s because Lyra’s eyes continued to grow for at least another year after her surgeries. When her eyes were done growing, transplants were theoretically an option, which one of the younger doctors in the ophthalmology practice suggested.

“Young doctors love to operate,” said Lyra’s surgeon, who is the head of the practice, “but when you get older you recognize it is sometimes better to wait. Now if she comes to me at eighteen and says she wants implants, I’ll do them. But if she can do fine with contacts, it’s better to wait.” I agree for three important reasons: First of all, intraocular transplant surgeries in children under the age of five have far more complications, resulting in additional eye surgeries up to 72% of the time. Secondly, accurately determining what strength to give a surgically implanted lens on a child who is preliterate and unable to perform the typical acuity tests (Which one is clearer? A or B?) is never ideal, and, finally, I believe by the time Lyra is eighteen the field of intraocular lens transplantation will only have improved, perhaps significantly.

But back to tolerating contacts. The first two years Lyra wore them, I occasionally found one of her eyes nakedly free of any contact. Usually when this happened, the lens was ready to be replaced, which we did with the staff at the ophthalmologist’s office every three to four months. A new lens is shiny and clear, but over time protein accumulates, dulling the surface. I’m sure as they get dirtier, the contacts are less comfortable and I was not surprised when Lyra rubbed them out from time to time. This started happening more frequently after Lyra’s second birthday. Then this past spring, a few months before Lyra turned three, the pollen count rocketed higher than in most years. Lyra and everyone else in the house became sneezing snot buckets. Contacts disappeared weekly and at roughly $150 per lens, replacing them is not something to sneeze at. “It’s time,” said the doctor, “she’s spending too much time wearing only one lens and it’s too stressful putting new ones in this often.”

Two things in Lyra’s life have never been easy and have only gotten harder as she’s become bigger and stronger: quarterly blood draws to monitor her thyroid levels and contact lens changes. When she was a baby, I sat with Lyra on top of my legs with her head on my knees as one nurse put the speculum in her eye while the other one removed her old lens and put in a new one. The speculum was always necessary because Lyra clamped her little eyelids closed so tightly it was impossible to keep them open using fingers alone. When she was larger, I held Lyra sideways in my lap while one nurse held her head, another operated the speculum and a fourth nurse conducted the lens change. Always, Lyra screamed herself hoarse and became slippery with sweat. After doing this weekly for a month I lost all determination to keep her in contacts.

“Many kids love glasses and stay in them for years,” said the doctor when they removed her final contact lens. Even though there was only one lens to remove, afterwards Lyra remained upset and refused to wear her new glasses in the doctor’s office, wanting nobody and nothing near her eyes. I tried again later that day when we were home and she promptly pulled them off her head and flung them across the room. Now what? I fretted. She can’t go around with absolutely no correction. Her prescription is +19 in one eye and +20 in the other, qualifying her as legally blind (for comparison, I am quite nearsighted and my prescription is -3.75 and -4). I contacted the vision impairment specialist who used to come to our house with Lyra’s county caseworker. She sent me a list of tips for getting kids to wear their glasses, which assumed you could get them on the kid in the first place. I went to bed that night believing we might need implant surgery after all.

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Lyra loves her glasses and kitties. This is inarguably her favorite shirt.

The next morning when I got up and went to the kitchen for coffee, Max was sitting at the table. “Look at Lyra,” he said. Because she sits at the end of the table, her back was toward me when I entered the kitchen. I came around and there she was, wearing her glasses while eating her breakfast. With the exception of the following day when she hid them in a pot inside the oven of her toy kitchen, Lyra has willingly worn her glasses ever since. In fact, when she gets up in the morning she often says, “Hi! I want axes.” Which is how she pronounces “glasses.”

Why was I so resistant to abandon contact lenses? What I told myself was that Lyra would not be able to see as well in glasses as she could in contacts. For anyone who has worn both glasses and contact lenses, it is often the case that contacts give a more precise, if not significant, correction. In part because the lens is directly on the eye and not a few centimeters away. But it was Max who hit on the larger reason. Max, who took Lyra’s diagnoses in stride since the very beginning and never grieved over Lyra’s Down syndrome because, as he told me, he just loves her so much as she is. That hasn’t changed, but with fierce love comes the desire to protect. “I wish she didn’t have to wear glasses because it’s one more thing that identifies her as different,” he said to me about a week after Lyra switched to glasses.

Though variation is substantial, people with Down syndrome, unlike other conditions, bear identifiable physical features. Chief among them are almond-shaped eyes due to epicanthal folds of the upper eyelids and flatter facial profiles. In the morning when she sits on my dresser in front of the mirror where I brush her long blonde hair, Lyra looks glamorous. But she cannot work with hair in her face and she cannot see without her glasses. Once her hair is smoothly secured in colorful elastic bands, I place her glasses over her head and around her neck like a necklace, then pull her hair over the safety band that connects the stems. Quickly Lyra grabs the frames and perfectly positions them on her face. “Hi!” she then says every time, looking me in the eyes.

Her glasses are so thick they feel almost like marbles when I rub them clean with soap and water, as I do many times a day. In contact lenses, Lyra often squinted, making her eyes look small. The magnification of her glasses is so powerful her eyes appear owlishly big, drawing attention to her face. Her vision impairment is now as patently obvious as her Down syndrome. More than before, in public people comment on how cute Lyra is. Like three-year-old boys in ties and sports coats, glasses on such a small girl looks endearingly adult. But what happens when Lyra is a teenager and, later, a woman? I have long felt more at ease with Lyra having Down syndrome than I do with her vision issues. And here’s why–Lyra is healthy, a social extrovert and very bright. Understanding that Down syndrome effects cognition, at three-and-a-half years old Lyra is no longer an enigma. She will do well in life with the right support, which we give her and will do so for as long as we can. Beyond us, Lyra is blessed with four adoring brothers whom I have no doubt will look out for their sister when Max and I are dead. (It happens and we don’t pussyfoot around in talking about it.) But my daughter as someone who is legally blind? What that means long term is not so clear.

In Ohio, services are provided at the home by the state, through the county of residence, until a child is three years old. Then the child is eligible for public preschool and it is there that services continue. Lyra is fortunate to have as her classroom teacher a vision impairment specialist. We have long heard that children with Down syndrome have strong visual memory but after raising two kids with severe dyslexia, I was not expecting Lyra to read before five as do many other children with Down syndrome, including our pediatrician’s daughter. Yet today Lyra recognizes and verbally identifies almost the entire alphabet, numbers one through nine, and at least five colors. For now, the letters and numbers she looks at are quite large, certainly not as small as the print in a typical children’s book, which leads to what comes next. When we recently saw Lyra’s ophthalmologist for the first time since her last contact lens was removed he was thrilled with her vision and said, “Somewhere between 12 and 18 months from now we will make the switch to bifocals. I want to wait a while because it’s a difficult transition, the kids fall a lot and it takes a while.” On the other hand, he also told me it would take two to three weeks for Lyra to adjust to glasses and that only took 24 hours.

Meanwhile, Lyra’s teacher is exposing her to braille and signed her up with a non-profit that sends us braille books every few months. The ones that are typical toddler books with clear braille stickers overlaid upon the text we keep at home. Others are simply white 8.5 x 11 pages covered with bumpy dots. We put those in Lyra’s backpack and send them to her teacher.

IMG_3333Like so many changes resisted in life due to fear of the unknown, I wish we had switched to glasses sooner than we did. We would have saved Lyra several traumatic contact lens changes. She still drops to the ground in an unfamiliar setting if she is unable to discern the topography of the ground or floor but otherwise seems to see as well as most other three year olds. An added benefit is her glasses have transition lenses, meaning they get dark when exposed to sunlight. In contacts, I could never get Lyra to “tolerate” sunglasses. Now sunglasses are just part of the package and she looks pretty cool.

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Mid-century Mark

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“You belong to AARP?” I asked my father twenty years ago when he mentioned a discount he’d received due to his membership. A man who never refuses assistance, I figured he had pulled one over on the retired people’s lobby. But that wasn’t the case.

“Yep. You only have to be fifty to join,” he said. While fifty is still the official age of enrollment, AARP is happy to confer senior status as of January 1 of the year someone turns fifty. Born at the end of 1965, I had just turned forty-nine when I received my first membership card last winter allowing not only me but also my partner to become members based solely upon my age. Just one more benefit I can offer to Max as an older woman.

When I was in the fifth or sixth grade, the staff and faculty of my elementary school went all out to celebrate the fiftieth birthday of our principal, Mr. Tomlinson. A sturdy man who spoke only when necessary and never needed to smile, it was hard to imagine his younger self. In his defense, our regular visits together in his office were not to congratulate me for any achievements. Half a century, that is really old I thought looking at him from across his desk. A classmate who occasionally joined me in Mr. Tomlinson’s office wrote in his birthday greeting, “Fifty looked a lot older when we were younger!” And by younger, fifty looked pretty old just ten years ago.

“When you are in your forties, your children are older but you still have your looks,” a much older friend told me when I was pregnant with my first child in my late twenties. She also had aphorisms for the other decades of a woman’s life, but I only remember the one. When my forties arrived, I found some truth to her words as there was a freedom in having older children while still relatively young myself. That is until I had my fourth and fifth children at ages forty-four and forty-six. People tell me my littlest children will keep me young, but more than once have I thought, Whew, Im too old for this, these two could be my grandkids in which case I could send them home to their parents. Fortunately their father enjoys the routine of getting the two Littles, as I call them, ready for bed each and every night.

Doll HandWhile I may have looked much the same as I had the previous decade, when I turned forty, I began to notice wrinkles in places I never imagined. Like the tops of my wrists where lines appeared seemingly overnight giving my hands a doll-like quality. You know, the kind that a child can turn in the plastic socket. Or pull off altogether revealing a small ball at the end of the palm and the hollowness of the entire arm. But it’s not so gruesome as I once imagined, this aging of the body. On most days, it feels like puberty only slower, watching what you assumed was the way you would always look slowly shift and change.  And, just like puberty, it includes acne. For years, I have noted women in their fifties who look fabulous not because they look young, but because they no longer seem invested in pleasing anyone but themselves with their appearance. Carefree short hair, fun earrings and bold eyeglasses on faces both weathered and softened by the elements and time. Today my hair is short, my earrings are fun and my glasses (when I can find them) are colorful. It is not as though I am unconcerned with my appearance. I still love make-up, jewelry and more shoes, boots and coats than any one person has need to own. But I am content with my physical form, even as it is softer in substance, rougher in texture and more lined than it once was.

Like seeing numerous cars the same color as your new vehicle, as my forties wound down I noticed these lists written over the years by people turning 50. Sprinkled with humor, the thrust is Hey, I’m wiser at 50 than I was at twenty. Or thirty. Or even forty. Last spring I read an article in the Atlantic that defined those possessing wisdom as “satisfied, calm and grateful” and that studies show this is more commonly found in older people because they are less reactive to negative stimuli. But beyond learning to regulate emotions, at around the age of 50 many people begin to have more realistic expectations of themselves than they did, say, in their 20s when life looks for many as though it will go on indefinitely. As expectations realign with reality, disappointments in life are understandably fewer.

I don’t have a big list of things I’ve learned after trotting around the earth for half a century. In fact, pretty much all the elements of most of those lists was best summed up by Andy Warhol in a single quote:

When people are ready to, they change. They never do it before then, and sometimes they die before they get around to it. You can’t make them change if they don’t want to, just like when they do want to, you can’t stop them.

I have been both the person futilely trying to change others and the one who has changed in spite of great resistance from the very people I previously had tried to change. At fifty, the friendships (and acquaintances) I have with people I have known from every decade of my life, going back to elementary school, constitute the sauce of a rich life. But just as importantly, I learned in the last decade to let go of relationships that were either toxic or continuously draining including a spouse, two parents, and a number of people I once considered friends. I wish none of them ill, but like a house with termites, no long-term good can be expected in keeping such company.

I am a fifty-year-old mother of five children and therein lies the other truth I have come to know: You are only as happy as your least happy child. Nineteen years and one week before my fiftieth birthday, I gave birth to my second child and since then there has been a round-robin game of who sits in the hot seat of maternal worry. At this moment, and for the first time since my eldest child began kindergarten, all of my children are flourishing. Claude, once diagnosed with severe dyslexia, has spent four successful years at the University of Michigan and will graduate this spring. Hugo, who might never have gone to college given his recalcitrant procrastination and misplaced priorities, is thriving at one of the best music programs in the nation. Jules, my other dyslexic, has taken to high school and its workload with aplomb. Leif, whose fiery temper gave his senior citizen parents a run for their money for three long (long, long) years, began kindergarten at the local public school this fall and *presto* became a boy who now delights in most things and happily goes to bed each night at eight o’clock. And then there is our Lyra, the bright star of our family show, who also began public school this fall and has had an explosion of speech and skills in the past three months. Best of all, my children have concrete, loving relationships with one another, which includes disagreements, misunderstandings and arguments. But they always work through it because there is, for now, nobody else with whom they have a closer relationship. Which is what I wanted for my grown children from that first moment I was a mother of more than one child.

All those years of worrying now seem unnecessary. Sure, it’s easy now to see that everything worked out beautifully. Yet I do not doubt future episodes of difficulties will befall my children, along with my attendant concern, for in every life a little rain must fall. Until I was in my mid-twenties, I said I would never have children. Nobody, therefore, is as surprised as I am that I am a mother of so many. Yet here I am and with the three Biggins – that’s what I call them – there is little else that gives me more delight than seeing all the years of raising them come together and finding I now have these (tall, handsome) adult men in my life who are as engaging as anyone I have ever met.

However, raising children and running a household is only a portion of who I am and my greatest frustration in life has come from putting my career and personal goals in the back seat while bringing up my babies. And there I find my only regrets. Many things would I tell my younger self to do differently if I could: Don’t drop out of graduate school, give up your assistantship and move to Boston in a fruitless attempt to save your marriage. Don’t let your husband talk you out of good job offers time and time again. But most importantly, don’t think you can ever change anyone other than yourself because you can’t and you are wasting precious time trying.

Then again, we are who we are because of the experiences we have had. And at fifty, my little corner of the world is better than I ever imagined it might be even just ten short years ago when I was too young to join AARP.

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By All Means, Do Presume

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Two years ago when Max and I attended our first National Down Syndrome Congress (NDSC) convention, Lyra was 11 months old and I was panicky. I felt we had a small window to engage her mind, teach her body to move optimally, and lay the groundwork for speech intelligibility. We left our first convention with lots of information and a plastic box from Talk Tools filled with straws, horns and bite sticks. Once home, we promptly bought a tumbling mat for gross motor exercises and began weekly sessions of physical, occupational and speech therapies at Akron Children’s Hospital. Because of these and other early interventions I have (mostly) abandoned my fears over what we may have missed.

Now three years old, Lyra walks, talks, feeds herself, helps get dressed, is potty training and does most everything expected of a preschooler. Meanwhile, Max and I have largely hurdled our Down syndrome learning curve by reading books, meeting doctors and therapists, attending programs, and getting to know other families. But just as important is Lyra herself. Not only can we now see the relative impact Down syndrome has on her abilities (not so much as we thought on the day she was born), but over the past three years, her personality has unfurled—she’s plucky, sweet and, yes, smart. Lyra is our music-loving, temper-throwing, messy-eating girl. She adores her brothers, her dogs and her cats and refers to each by name. She loves going to preschool and daycare but fights like a greased monkey when getting her contact lenses changed, her blood drawn or her teeth brushed. A daddy’s girl, she cries when Max leaves for work and eats all her food when he sits next to her at the table after defiantly refusing to try a bite for me.

Lyra is not Down syndrome; Lyra is fully human. A human who has Down syndrome.

The Long View

As our focus on Lyra shifts away from the acquisition of basic life skills, the only therapy she needs, for now, is speech. We confirmed this in Phoenix this past summer at the NDSC convention. For three years in a row physical therapist Pat Winders has evaluated Lyra’s gross motor skills at the convention. This year Lyra walked and ran for Ms. Winders, both in her braces (and shoes) and barefoot. “She’s doing great!” said Ms. Winders. “Her heels look straight, her feet are bending and her thighs are moving behind her as she strides. Keep her in Sure Step braces for a couple more years and then switch to an orthotic insert like Chipmunks. Remember, we don’t want our kids in physical therapy forever, she’s doing everything she should right now.” (Whew!)

As we explore educational options for Lyra and how we might advocate for her, we are no longer panicked. Currently she is thriving in preschool, and there is time to research what comes next. After three years of what sometimes felt like a graduate program on Down syndrome and early interventions, we can now look up and consider the long view of life for Lyra. And there is no better place to observe what her life as an adult might be like than at the NDSC convention.

Down Syndrome Self-Advocates

“Oh, look, there’s Aaron!” I said to Max. After a leisurely breakfast on the opening day of this year’s convention, we walked to the hotel hallway reserved for the self-advocates’ events, which include elections to the NDSC board. Each year we are greeted by Aaron who introduces himself, shakes our hands and asks that we help him get elected.

For you see, as much as the annual NDSC convention is a place for parents of children (of all ages) with Down syndrome to gain valuable information and make meaningful connections with other families, the convention is equally significant for teens and adults who have Down syndrome. The NDSC’s mission is to improve the world for people with Down syndrome through an organized collaboration of families of people with Down syndrome, the communities in which they live and, importantly, self-advocates. And their board of directors reflects this composition. Each annual convention has rooms dedicated to the board elections and self-advocate committees.

“How old do you have to be in order to vote in board elections, Aaron?” I asked, wondering when Lyra could participate. Aaron did not know so we approached a young couple walking toward us with supplies to decorate a table. Like so many self-advocates at the convention, they promptly introduced themselves. The four of us chatted about where we were all from when suddenly the woman poked the man’s side with a shrink-wrapped package of cardboard containers. “Don’t just stand there talking, help me open these,” she said teasingly. Both in their twenties, neither could remember when they first participated in the NDSC elections as they have been voting for many years.

We turned to a delicate woman working on a nearby table, her salt and pepper hair swept up in a Gibson Girl bouffant. “I don’t know remember when they can first vote, it’s been so long ago for my son, maybe fifteen?” She said and then asked, “How old is your daughter? Three? Are you working on speech? It is so important to work on speech. Have you met my Tony? You haven’t? It seems like everyone knows my Tony. He’s 27. Oh, you must meet him, where is he? Well, I’m sure we’ll run into each other again and I’ll introduce you.” We ran into Tony’s mom repeatedly over the next three days, but never managed to meet Tony. He was always off with his friends squeezing the most out of a weekend where Down syndrome is the rule, not the exception.

Seeing Myself in Sarah

What was once new is now familiar. After leaving the self-advocates’ hallway, we walked to the exhibit hall to find our friends. We hugged the founders of Down Syndrome Diagnosis Network, an organization that does such important work nationwide it is hard to imagine it has been in existence only a few short years. From DSDN we went to another young non-profit named for the daughter of founders Tim and Liz Planchta. Ruby’s Rainbow grants scholarships to people with Down syndrome for post-secondary education, whether it be college, job training or enrichment programs. Once unheard of, post-secondary education is becoming as common an expectation for people with Down syndrome as it is for all high school graduates, and with good cause. Many more adults with Down syndrome are living independently and post-secondary education maximizes their employment options (um, you know, like it does for everyone). I regularly hear from adults with Down syndrome how important it is to them to be productive members of their communities.

After visiting friends, Max and I strolled through the exhibit hall. Writer Sarah Savage Cooley was selling her books at a table. In Of Love & Loss Poetry or Tears? she uses poetry to tell her story of falling in love, getting married, difficulties, divorce, and continued feelings of loss post-divorce. Writers commonly process major challenges in life, like divorce, by writing about them (I wrote a 300-page book about the end of my marriage). Ms. Cooley, who has Down syndrome, is no different. But it was The Selected Essays of Sarah Savage Cooley that rooted me to the floor in front her table. In “Following My Dreams,” she rails against her treatment as a child in a special education program:

When I was going to school I was normal like everyone else, but I was put into special education to get special help. Wherever I went I had an aide in each class. I am a hard worker, wanted to be independent. Instead I had an aide who helped me with the class work, the aides talked to the teachers. I even had special homework assignments. I always left the classroom with the aide for special help. I wanted to stay in the classroom to do regular classroom assignments like everyone else…When I had an aide in each class I felt so uncomfortable. I wanted to be an individual who goes to high school with her friends, goes to classes. But in each class I went to there was an aide who was with me, who didn’t want me to have my own space.

Wow. I heard Sarah’s voice, husky like Demi Moore’s, the rest of the weekend as we attended several sessions on education. Will I make decisions that Lyra will resent? Undoubtedly. I have with all of my children. But nobody should discuss her in the third person when she’s sitting right there as Sarah’s aides and teachers did. Lyra will be as empowered as all of my children.

In “Found Out What My Future Will Be,” Sarah describes her frustration over the job she has instead of the career she wants:

I just wish everyone could stop treating me special and let me grow up and go my own way in my life and let me focus on my dream… It’s important for me to become a book author. That’s all I ever wanted to be in my life, and it’s the one thing I want to do for my future…I wasn’t planning on working at the Disabilities Rights Center for the rest of my life…I want to be in one place that I love, to go to college, study writing, work at a place of my dreams that comes true for me, be who I want to be, become a book author, and explore the world around me.

“You know, Sarah,” I said as I closed her book, “I am a writer and all I want to do is work on my book. But I have another job because I need to make money.”

“Me too!” she said, looking up at me through her wire-rimmed glasses, “All I want to do is write my book!”

We bought two of Sarah’s books, signed for Lyra. Moments later, we met a medical fellow from the Thomas Center for Down Syndrome at Cincinnati Children’s Hospital who researches depression in people with Down syndrome. I told him he should meet Sarah Cooley and read her books, poignant writing about the interior life of a person with Down syndrome. “Oh, I know her work,” the young doctor told me. “It’s required reading at the Thomas Center.”

I am writing a book on Down syndrome for people who do not know someone with Down syndrome because I want to eradicate the misperceptions of what it means to have three twenty-first chromosomes. Sarah Savage Cooley, using the same means of expression as me, the written word, has achieved this. Her books, in the hands of those who guide the research on and the care of people with Down syndrome, are changing perceptions. Sarah’s life has not always been easy, but she’s channeled her misery and frustration into her craft, thereby positively affecting the lives of countless people she will never meet. There is not much more a writer can hope to achieve.

Wait, Was That Who I Think It Was?

I think I saw Don’t Limit Me Megan! I texted to one of my oldest friends, Mariko.

Huh? She wrote back.

The video you sent me, girl with DS talking in classroom!

On my way to the ladies room, a young woman with long dark hair glided by me in a linen dress with black piping. Several minutes later it clicked: That was Megan Bomgaars! Many months earlier Mariko, who has a niece with Down syndrome, sent me Ms. Bomgaars’ YouTube video, “Don’t Limit Me,” which reminds me of my parenting mantra: “Push and support.” All children have limited power in society and need adults to advocate on their behalf. I have done so for each of my five children. But children are not pets or, as Bomgaars says in her video, mascots. I talk with my children when making decisions that directly affect them or when facing difficult circumstances and what they tell me is given weighted consideration. Then, I roll up my sleeves and push my kids and when necessary, for my kids. In her video, Bomgaars underscores the importance of holding the same high, but not impossible, standards for my daughter with Down syndrome as I do for my other children while also supporting her when necessary, which for Bomgaars included a school aide. (Yep, people with Down syndrome are not a monolithic group and can have different opinions.) Every educator should watch “Don’t Limit Me” and listen to woman with Down syndrome insightfully describe what is needed when educating children with Down syndrome.

The Awesome Tim Harris

WithTimHarrisParents at the NDSC convention often reminisce about the self-advocate keynote speakers they have heard over the years, which I attribute to two things: One, these keynote speakers are first-hand, living examples of people with Down syndrome leading rich, full lives. Secondly, in a weekend mostly spent listening to the trained experts on Down syndrome, including health care professionals, educators, researchers or lawyers, it is as important and so rewarding to listen to the true experts on Down syndrome: Adults with Down syndrome.

I arrived in the grand ballroom just as restaurateur Tim Harris danced onstage to Pharrell Williams’ song “Happy.” Speaking to over a thousand people, Harris was as commanding and infectious a keynote speaker as I have heard at any conference or convention, including those not related to Down syndrome. Here are a few snippets from his speech:

I am Tim Harris, I’m 29 years old and I am living my dreams! When I say “Oh, yeah!” you say, “Oh, yeah!”

Oh yeah! (Tim Harris)

Oh, yeah! (Audience)

I serve great food and lots of hugs. I have hugged over 70,000 people. The world needs more hugs. I’m doing my part, are you doing yours? Stand up and hug the people next to you!

Oh yeah!

Oh, yeah!

Believe in yourself. Fifteen years ago, Tim’s Place was only an idea. Today, it’s a tourist destination.

Oh, yeah!

Oh, yeah!

People ask me and my family advice and I did what any awesome person would do: I started a non-profit, Tim’s Big Heart Foundation, to help other people with disabilities start their businesses. Matt Cottle is here tonight to tell you about the bakery he started with the grant he got from my foundation.

(Mr. Cottle, who has autism, stepped up to the podium and spoke with the deadpan delivery of comedian Steven Wright as he described the hundreds of scones and other pastries his parents patiently let him produce in their house as he mastered baking. On the website for his business, The Stuttering King Bakery, Mr. Cottle points out that 91% of adults with autism are unemployed and his mission is “to impact the autistic world and serve as an inspiration for other autistic people to be productive, active members of the community.” Mr. Cottle hopes to one day open a brick-and-mortar bakery where he will employ others who have autism.)

I want to thank not only Matt for opening his bakery, but his family for supporting him and his dreams. (Matt returned to his seat with his family.)

I am a superhero. My super power is love.

Be the light. When I was born, people told my parents they were very, very sorry I had Down syndrome. I guess they didn’t know how awesome I’d be. I’m sure it was scary for my parents but they always saw the light in me.

Use your light to help others. Everyone can be awesome.

Oh, yeah!

Oh, yeah!

Meeting Mr. Awesome

On the last day of the convention, I ran into a man in the lobby as I was turning with Lyra in my arms.

“Are you Tim Harris?” I asked.

“I’m Tim,” he said.

“You gave such a great talk the other night!” I told him.

“Thank you. But, but, tell me, is this your daughter? Do you know she is awesome? She is going to grow up and do awesome things and my foundation is going to give her a grant to follow her dreams. Don’t ever forget she is awesome!” And then he was gone, ushered out by his family who, perhaps more than everyone else, struggled to stay on schedule.

“You know, I heard he didn’t used to be so good at talking with people, that his success has really propelled him into everything he is now,” said one of our friends when I told him Lyra and I had just met Tim Harris.

It’s an upward spiral: the more Tim Harris accomplishes, the more he can accomplish. Do people like Tim Harris, Megan Bomgaars and Sarah Savage Cooley have the support of their families and friends? Certainly. But is that not true of most, if not all, people leading genuinely successful lives? Imagine, however, if their parents had believed that a child with Down syndrome would not read, write, do math—let alone write books, make films, own restaurants and start foundations? Sadly, that misconception is still widely held among people who do not know someone with Down syndrome and even a few who do. Yet these three adults and others with Down syndrome are not only succeeding personally, it is far from hyperbole to say that they are making the world a better place for others. Who among us can say the same?

Just as Lyra teaches us at home, these adult self-advocates teach me more than any session I have attended at the NDSC convention. When I talk with someone like Sarah Cooley or watch Megan Bomgaars’ video or listen to Tim Harris speak, I am inspired by them to live my life better, fuller and kinder. They are models not just for what my daughter can aspire to become, but what I can aspire to become too.

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Lyra’s Meme: People-First Language

In case you missed it on the Whoopsie Piggle Facebook wall, here is the meme created with the help of my friends, photographer Shane Wynn and text-adding queen Tiffany Stafford. Since October 1, just five days ago, it has been seen by more than 70,000 people and shared countless times.

We created this meme as part of our contribution to Down Syndrome Awareness Month in the United States, which is every October. But all year we encourage everyone to use “people-first” language. Lyra has Down syndrome, she is not Down syndrome. What seems a minor shift in speech has enormous impact on how people with disabilities are viewed and treated.

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A Year After a Painful Week

It has been a year since I wrote “A Painful Week in the Down Syndrome Community,” about three toddlers who died. Two left suddenly: a boy who contracted meningitis, unrelated to his Down syndrome, and a girl who suffered complications from a second heart surgery. Both of their families have created non-profits in honor of their children, T21 Ryder’s Foundation and Fiona’s Hope Totes. The third baby, Annie Wojtowicz, died slowly of heart failure in the arms of her family.

11699b0256fc7c39525a3d41267d538aI learned of Annie two weeks before she died while I was preparing to travel in Europe with my eldest son. I cried every day as I watched, via Facebook, this small girl grow weaker, her face more swollen, her eyelids red and puffy. My children asked me why I kept returning to Annie’s Facebook page when it made me so sad, they told me to stop, but I couldn’t. In her and her family I saw Lyra and our family, two daughters with Down syndrome born months apart, both with dual diagnoses, but only one of which was fatal. Annie died a year ago today and her family has shared their grief with the world on her page, Annie Golden Heart. In the days after Annie died the page was taken down, but then it returned and many people, including myself, continue to follow Annie’s family. As I traveled Spain with my son, I carried with me these three families while on Annie’s page I saw her funeral, her freshly covered grave, the unbearable sorrow in her parents’ eyes. I lit candles at every La Pieta station we found at every church we visited.

On Father’s Day 2014, Ryder and Fiona were only days gone while Annie had but three days left to live. The day before, I cashiered at World Market, where I work a handful of hours each week. It was busy, as it often is the day before a holiday, with people buying last-minute gifts and I felt cheerfully distracted from the sorrowful week. Then a woman my age bought a Father’s Day card with a photo of a child’s tiny bare feet atop a pair of leather oxfords, clearly dancing with her daddy. Tears suddenly rolled down my cheeks.

“I’m so sorry,” I said to the customer. “My daughter has Down syndrome and there have been babies her age who have died this week. Your card makes me think of their families.” People who have a relative with Down syndrome often speak of the uncanny coincidences that are seemingly commonplace in this community.

“I had a sister with Down syndrome who died when she was a baby because they couldn’t fix her heart back then,” said the customer as she held my eyes with her own. “My parents never got over losing her.”

Grief is a foreign country that makes citizens of all who travel there. Only previous visitors can fully understand the experience of those who find themselves suddenly dropped in the place that changes everything forever. While the only way through grief is to grieve, no two journeys are the same. But often the loss of a child is described as the most intense grief. The natural order calls for children to bury their parents, not for parents to bury their children.

In the year since these three children died all in one week, several other babies have gone too. The stories of children succumbing, often to heart or respiratory conditions, are shared and then these families disappear from the closed Facebook groups concerning Down syndrome. Our pediatrician, Dr. M., whose own daughter has Down syndrome, gave me a big hug in her office last summer. “I can’t do Facebook groups because I see so much loss just practicing medicine. We can each handle only so much.” Annie’s family continues to openly share their process and in so doing are, for me at least, something of a proxy for all those who have lost a child with Down syndrome this past year. Her parents and sisters regularly visit and decorate her gravesite and when the groundskeepers clear off the toys and tchotchkes, it exacerbates the pain of having had Annie herself taken from them. It seems to me that cemeteries should have special allowances for the decorating of children’s graves, particularly in the first year after the child has died.

Last August bioethicist Richard Dawkins tweeted to an expectant mother who asked him what she should do if her fetus was diagnosed with Down syndrome, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later claimed his position was humane as seeking to avoid suffering. The response was terrific. Articles appeared in places like the New York Times questioning the use of the term “suffering” as it relates to having a child with Down syndrome given the significant scientific research that proves just the opposite, something I, too, wrote about in “What Suffering? The Down Syndrome Advantage.” People with Down syndrome are overwhelmingly happy with their lives, their parents’ marriages are stronger than the national average (based upon divorce rates) and most siblings cite having a brother or sister with Down syndrome as a highly positive experience.

Annie’s family has observably suffered. The other families who have lost children with Down syndrome understandably, if not privately, have suffered too. At times, Annie’s father has posted a depth of suffering that is concerning. Suffering that is so great because the love is so deep.

Today, it turns out, is also an anniversary of a different kind. It is the fifth birthday of a little boy with Down syndrome in our local community. In a post that includes several pictures of the two of them together, his father writes, “Thanks for helping find my why, buddy!”

With any child comes the risk of unimagined suffering. But also the greater likelihood of immeasurable love and joy.

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That Which Doesn’t Kill the Kid

No one saves us but ourselves. No one can and no one may. We ourselves must walk the path. ~The Buddha

That which does not kill us makes us stronger. ~Friedrich Nietzsche

Hoping to nap for fifteen minutes in the middle of an afternoon in late March, my eyes snapped open at the sound of the bedroom door smacking into the wall. Hugo had flung it open and was bouncing towards me with his arms and legs bending and twirling at every joint like Ray Bolger as the Scarecrow.

“Guess who got into Eastman?” he asked, his voice pitched high and squeezed, nothing like the resonant baritone he’d advertised to several colleges during winter auditions.

“What?” I asked as I sat up in the middle of my bed.

“My phone just rang and it said ‘unknown’ so I almost didn’t answer it, but it was the admissions director and, ohmygodohmygod! I’ve been accepted to Eastman!” I leapt out of bed, embraced Hugo, who picked me up and twirled me around before we began bouncing up and down while spinning round and round.

“What about the money?” I asked when we stopped moving.

“They’ll send me an email with my financial aid package in a couple of days and so will the University of Rochester because I registered for a dual degree, but I can’t combine the packages.” At the time, neither of us really understood what this meant, nor did we care. The Eastman School of Music accepted Hugo, O-M-freakin-G!

Okay, so until last October, I’d never heard of The Eastman School of Music because, frankly, I know squat about preparing a professional musician. “Eastman is the Harvard or Yale of the music world,” the artistic director of an arts performance organization in the Cleveland area told me. I cannot imagine the scenario in which I would encourage one of my children to apply as an undergraduate to an Ivy League school, institutions of learning that were solidly branded before PR firms existed to encourage branding, because there are plenty of fine colleges without the high cost and pressure of an Ivy. As for the top-tier music schools, repeatedly Hugo and I have heard that these places give their undergraduates limited time with, and little attention from, faculty. In other words, they charge a premium price to receive training from a graduate students. Except, however, at Eastman. Still, given all the hoopla about Eastman, we had low expectations when we drove to Rochester for his audition on a snowy day in January. Then, within an hour after arriving, we just knew: Eastman is where Hugo belongs.

Well, Maybe

Then that proverbial other shoe dropped. Eastman offered Hugo a generous financial aid package of $41,000 a year. It costs $65,000 a year. “Hugo, I cannot advise you to take out nearly $100,000 in private loans for any degree, but particularly a degree in music.” The other offers had also come in—two universities offered Hugo a full ride, ironically both my alma mater, Ohio State University, and his bio-dad’s alma mater, Miami University of Ohio. Two other schools, Baldwin Wallace and Capital University, offered him packages that would have cost only $2,000 a year. Capital University in particular made it very clear that they wanted Hugo in their program. Being wanted feels good, and Capital has strong faculty and a well-regarded music education program. Then, in April, when competing at the National Association of Teachers of Singers, which is open to both high school and college-level students, Hugo observed a camaraderie among the Capital students that is not necessarily commonplace among vocal performance students.

“I’m okay with going to Capital, in fact, the idea of it makes me happy,” he told me sometime during the week before May 1, the national deadline to commit to a college or university.

Money, Money, Money

Lynne Twist, a co-founder of the Hunger Project, an organization with the lofty mission of eradicating world hunger, wrote in the The Soul of Money that money is like water—we need it to live, but it must flow. If we do not allow it to flow, it becomes like a stagnant pool. But more importantly, Twist encourages aligning finances with values and recognizing the falsity of what she calls “the myths of scarcity,” which are: 1) There is never enough; 2) More is better; and 3) That’s just the way it is.

Looking back, my basic needs have been met throughout my life. From time to time and by necessity, expenses are problems that need creative solutions. My belief that my needs will be met through hard work and creativity was never so challenged as when I left my ex-husband. Throughout our marriage, he had discouraged me, both directly and through subterfuge, from pursuing a career (even telling me in the months before I left him that he feared I would meet someone else should I become gainfully employed). When he quickly withheld money after I had told him I wanted to separate, I applied for food stamps and Medicaid. I cleaned houses with a friend and took out student loans while finishing my MFA. Times were lean, but my boys and I were fine. In the second year of our long divorce when my ex-husband refused to contribute ever again to Jules’ education, the Waldorf school provided financial aid for his tuition and his tutor for his dyslexia reduced her fees. As their father believes the child support garnished by the state from his paycheck is his contribution towards the boys’ college education, a belief he has steadfastly held and often reiterated, Claude received a non-custodial parental waiver for the purposes of calculating financial aid at his college and receives, based upon my income, the highest need-based package available.

My mother’s constant refrain when I was growing up was, “We don’t have enough money.” Yet we always lived in nice, if not expensive, houses bought in public school districts with good reputations. We had newer cars, plenty of food and clothing. Though not deluxe, and often combined with work-related conventions, there were vacations. “I don’t know how I’ll pay the bills,” said my mother each time a paycheck arrived. Perhaps a function of her generation more than her obsession with control, I was forbidden from looking at any bills and, therefore, had no sense of what it cost to run a household. Of all the things that made me anxious as a child, worrying about how the bills would get paid was not high on my list but her continual cries of the wolf at the door added warp and weft to an already stifling pall of stress.

I wanted something different for my children. When each has turned three, I gave them jobs and money. For years I deposited their weekly allowance, determined at the rate of a dollar for each year of their age, into their bank accounts. By the time they were ten years old, Claude and Hugo had saved enough to purchase a $500 certificate of deposit. And when they turn 13, I show them my online checking account statements. “Here’s the deposit, and here are the expenses,” I explain as we scroll line-by-line through two months of entries. I’d like to say all this has made my kids equally thrifty, but personality is a powerful determiner of behavior. Claude and Jules, who may as well be identical twins born six years apart, sit on enviable nest eggs. While not skinflints, they use their money for purchases that are considered. Hugo, on the other hand, better make a ton of money. Magnanimous by nature, he spends whatever cash he has rapidly and generously. As a result, he’s usually broke. Sometimes when he’s in a financial pinch, he’ll throw his guitar on his back and head to a bustling area to busk, playing guitar and singing so passersby will toss cash into his open guitar case. It works. For now.

Walk the Talk: Turning Over Every Rock

I wrote the Eastman School of Music and asked for more money. They upped Hugo’s financial aid package to $45,000. While generous and far more than the full cost of all the other colleges to which Hugo had applied, it was not enough, even if Hugo won every private scholarship for which he has applied this spring. That’s when Hugo determined that his number two choice, Capital University, was more than fine. But also we investigated the University of Rochester’s package, learning two important things. First off, the UR paperwork mistakenly had listed Hugo as not interested in financial aid and to correct that error, I spent two days filling out and emailing documents needed to process Hugo’s financial aid application for UR. It was like doing my taxes five times over. What we also learned was the reason Hugo was listed as a dual degree is because on his application he wrote that he wanted to pursue a bachelor of arts degree, or BA. We did not know at the time that the degree the Eastman School of Music gives vocal performance majors is a bachelor of music, or BM. (Remember when I said I know squat about preparing a professional musician?) At 3pm on April 29, we learned that Hugo’s UR financial aid package requires us to cough up only $6275 a year. However, it also requires Hugo to enroll as a dual-degree major—vocal performance and something from the University of Rochester, like history or English.

It was no slam dunk and we had 48 hours to make a decision.

The Challenge of Talent

I practice because I think I’m making progress. ~Cellist Pablo Casals at age 90

More than any other person or topic, Whoopsie Piggle essays are frequently about our daughter, Lyra, and how her dual diagnoses of Down syndrome and bilateral cataracts have and have not effected who she is, repeatedly underscoring that Lyra is not the syndrome she has nor is Down syndrome an illness. She is fully human and deserves the same rights and privileges as all other humans. But her Down syndrome and vision impairment undeniably influence her identity. And for both diagnoses, Lyra has teams of professionals, including doctors and private therapists who work with her at Akron Children’s Hospital and state-employed therapists who visit her at our home. Beginning next fall, Lyra will have a new team of therapists working with her at an integrated public preschool. I also have a local support group, a national Facebook support group, aggregated by the age of our children with Down syndrome, and Max and I attend the annual National Down Syndrome Congress’s convention. If I have a problem or question regarding Lyra or her Down syndrome, I have multiple resources at my disposal.

IMG_2563Undeniably, the second member of our cast of characters about whom I most write is Hugo. He is simply the hardest child I have had to raise primarily because he is someone who excels easily. And for that there are no squadrons of professionals to help guide my parenting. Hugo the second born who, unlike his first and third-born brothers, has encountered but one significant challenge in his life: simply himself. Claude and Jules, both dyslexic, required years of remediation to learn to read. Hugo picked it up in the first weeks of the first grade. Claude and Jules struggled with the coordination to play baseball, while Hugo is a natural catcher and, to a lesser degree, pitcher. Claude, who is three years older than Hugo, forced himself to ride a bicycle when it looked like five-year-old Hugo was going to do so first. Along the way, and seemingly because of their struggles, Claude and Jules developed incredible self-discipline and strong work ethics in all that they do. It is how they overcompensate, something Hugo, who succeeds at whatever he attempts, never needed to do. That is, until he wanted something he could not possess merely by desiring it to be so.

Music is for Hugo what water is for those with gills, what air is for those with lungs, what jet streams are for those with wings. Every instrument he picks up, he soon plays well and he went to the Akron School of the Arts at Firestone High School as an instrumentalist. Before long, however, he knew differently. Hugo is a vocalist whose voice, with time and training, has become rich, his phraseology clear and engaging, and he takes the stage with the pleasant confidence of someone who enjoys performing. I suppose it was always there, this unpolished vocal talent. But he did not stumble upon it. Another young man, someone Hugo grew up with and who was his teammate throughout eight years of Little League baseball, was the star vocalist of their class the day they entered high school. This needled Hugo’s competitive side and he worked his freshman year, his sophomore year and his junior year to surpass the other singer. Their senior year, Hugo was named king of the madrigal choir, a role that is not just musical, for together the king and queen manage the choir from booking gigs, collecting fees, arranging transportation, calling for additional rehearsals and whatever else comes up.

Great. This kid does one thing well. With most everything else, however, his modus operandi is a devil-may-care attitude. My parenting mantra is “Push, Support; Push, Support” push them to strive for what they desire in life and then support them to reach their own goals (and, sure, a few of my own). Instead for Hugo, and only for Hugo, the mantra is “Push, Push, Push, Dammit, PUSH!” Consider:

Chores: For most of their childhoods, the boys had Saturday chores that included floors (vacuum and Swiffer), bathrooms (scrub sinks, toilets and tubs, wipe mirrors and counters) and dust (wipe all furniture surfaces, lifting and dusting under objects). They rotated these three jobs each fall so they all learned how to keep house (their one-day partners can thank me). Do the job right and you can be done in less than an hour. Do the job poorly and you get to do it again. Three times over was the average for Hugo and I came to dread Saturdays.

Homework: “Hugo, how is it you had an A in math last term and an F this term?” I asked him when I received his final report card for the fifth grade. “Well,” he told me without a drop of irony, “the teacher just started assigning too much homework.”

True confession: Through grade school and middle school, I received mostly As in language arts and social studies. In math and science, Ds and Fs, but mostly Fs, were not uncommon. And I did not care. Nor did my mother. My freshman year in high school, my Latin teacher changed that. But nothing has happened to Hugo to make him determined to succeed in courses that do not specifically interest him. Yet. But the truth is in college, unlike high school, coursework is primarily in the student’s areas of interest and all required courses have multiple options.

Big Picture

Waldorf educator and author Jack Petrash once said that it is the job of parents to get children to do their work and it is the job of children to get out of as much work as they can. All kids dawdle, make excuses and cut corners when presented with chores or homework in a subject they don’t love—at least all my children do. And when a child is clever, so too are their methods. When Hugo was about six years old, I remember stopping mid-sentence in a tug-of-war talk with him. “Why am I negotiating with you?” Somewhere between the acquisition of speech and that day when I suddenly realized what was going on, Hugo had been riding me to town and back, requiring me justify my demands of him. I stopped negotiating (mostly), but he continues to ask me why.

No, Hugo is not the bean counter, he’s not the detail guy—except when he is. He prepares, over-prepares even, in all his musical endeavors. And Hugo is a leader. He responds positively to sound leadership and, particularly in his last two years of high school, he provides strong leadership, whether as section leader in marching band, leading the madrigal choir with his partner, the queen, or working with the students in the intermediate choir at the request of his choir director. He wants to start coaching Little League baseball next year when he comes home from college. Can he be self-absorbed? Sure–after all, he is a teenager. But he also easily gives his time and energy to help others, including me. He is far more willing, in fact, to rearrange his schedule when I need help with errands or picking up the little kids than Claude ever was in high school.

Supporting Hugo

I have pushed Hugo to do his best. “No matter how talented you may be nor how much a music school wants you,” I told him, “with bad grades you won’t get into a university.” I hired a tutor to help him with math and prepare for the ACT. I have paid for many years of music lessons, which he cared about so deeply that at times I stopped sending him when he was not turning in homework. It was the only consequence that felt punishing to him and got his attention.

I also support Hugo when he gets lost in his ambition and needs reeled back. Last fall he was so overcommitted, he became ill. I told him he would be better off doing less, but did not force him to quit anything. He came to that decision on his own. I went with him when he resigned from marching band, saying only what was necessary when the band directors became jaw-droppingly inappropriate. (Marching band is currently off the table for Jules, Leif and Lyra.)

Now life has handed Hugo something he wants dearly at the cost of facing what he knows are some of his weaknesses—time management and prioritizing multiple demands made of him. He will, in essence, need to excellently serve two demanding masters. It is a path most anyone would find daunting. The Buddhists (and probably all great teachers) say that when you must make an important choice, choose the harder path. The harder path will likely cause discomfort, thereby disrobing you of your delusions. The harder path is the path of transformation, choose it and you may become the person you wish to be. Avoid it and you will never know the true value of your potential or even, perhaps, who you truly are.

His Choice

“What do you think I should do?” Hugo asked, lying on the floor of my bedroom. It was the day before he had to commit to a college. We spent the afternoon together. Nobody else was home.

“It is not for me to decide, Hugo,” I said, lying on my bed. “In order to go to Eastman, you must do a dual degree, which means by default you’ll be overscheduled. You’ll either learn to manage your time and prioritize your work or you will flunk out, probably in your freshman year.”

“Yeah, I know.”

That same day, Hugo talked to four Eastman vocal performance majors who are in the dual-degree program. They all said it was hard but worth it. The reason Hugo put down a BA on his application is because I have always told the boys to get BAs and not BFAs because a liberal arts undergraduate degree is a buffet of learning and an opportunity that comes only once. Graduate school is the time for specializing and professional degrees. And Hugo, like Claude (and me), enjoys history, art and foreign language. He also loves chemistry.

“Mama?” Hugo called as he walked down the hallway first thing the next morning. He walked into my bedroom still in his bathrobe, a cup of coffee in his hand. It was May 1, national college commitment day. “I’ve decided I’d regret it the rest of my life if I didn’t go to Eastman.”

“Ok. Call the admissions director at Eastman and let her know. I’ll send in your deposit.”

Thrilled and scared in equal measure, and also relieved to have the college admission odyssey behind him, he chose well.

 

 

 

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Raising Voters

As a mother I sometimes parent by fiat, with no negotiation. There are small things–such as We never, ever buy items displayed in the check out line at the grocery store. But most are big things related to how we treat others and the earth. If I were put in charge of the United States, I have another small list of items that mirrors my mom-as-dictator list. Most of these items are civil rights issues. For example: treat all humans equally and, in the case of criminals and drug addicts, work for rehabilitation and not simply punishment (while also recognizing that certain crimes and criminals necessitate life in prison). But also near the top of my list would be compulsory voting as voting is inarguably an essential component, if not the most essential component, of a healthy democracy. Since 1948, the highest turnout of eligible voters in the United States for a national election was 65%. That was in 1976 and since then, the numbers have been under 60% except for 1992 (61%), 2004 (61%) and 2008 (63%). In non-presidential election years, the turnout hovers around 40%–far lower than the turn out rate in most other established democracies. This is in spite of a number of non-profit organizations working tirelessly to increase voter turnout. One such group, Rock the Vote, is a non-partisan organization that for over twenty years has worked to get young people registered and committed to voting. Their current work targets the so-called millennial generation, or millennials, the largest generation in the history of the United States (yep, bigger than the boomers).

Visiting our legislators in DC (and the Smithsonian).

Visiting our legislators in DC (and the Smithsonian).

I do not know who reads this blog, but given that I write largely about family issues, including raising one child who has Down syndrome, I suspect a number of you are parents. So for those of you with young children, let me tell you this: You have far more power to influence your children to vote than any non-profit does, no matter how many cool young celebrities they employee to talk, sing and dance in their commercials. But, like pretty much everything else, you have to model the behavior you wish to see. Yes, I often took my kids with me when I vote on Election Day at our polling station. Due to progressive (read: excellent for democracy) changes recently in Ohio voting regulations, I generally vote at my county’s board of elections in the weeks prior to Election Day. But in many years voting is not an annual one-day event; it is the culmination of weeks, if not months, of work on all our parts. In both local and national elections, my children have gone with me on leaflet drops, canvassing for candidates and Get Out the Vote (GOTV) campaigns. When they were younger, I never asked my kids if they wanted to join me, I just packed them up and brought them along. (Truth be told, as a complete stranger it is easier to get someone to open their door when accompanied by children.)

I know going to the doors of the homes of complete strangers is not something that everyone is comfortable doing. Heck, I’m not comfortable doing it, but I push past my comfort zone and walk up to houses in neighborhoods where I know nobody. Like any positive endeavor that causes a little nervousness—public speaking, asking your boss for a raise, giving a heartfelt apology—the feeling when finished is satisfaction. And when they join in the effort, even passively, that satisfaction is not lost on the children.

In the general election of 2008 Akron Public Schools were closed on election day because many of the polling stations were located in the schools. As a result, my son Hugo, who was 11 years old a the time, was home alone. I worked at my job, my eldest son, Claude, was at the University of Akron and Jules was a second grader at the Waldorf school. “I’m going to the Obama headquarters today,” Hugo told me over breakfast. A few blocks from our house, Hugo walked himself to the headquarters and was promptly put to work rolling posters. I cannot tell you how proud I am that Hugo worked on that historic day for our soon-to-be president, particularly because it was his own idea. And in recent years, as they have become young men, my three oldest boys are civically engaged. Claude regularly works on local campaigns when he is home from college (and grouses with me about our deep dissatisfaction with the leadership in the Ohio Democratic Party, which despite having replaced the chairman after last year’s series of bone-headed mistakes seems to remain same-old, same-old. Shouting out for younger blood and fresh ideas, O, party of ours!). Hugo worked with me on GOTV on Election Day 2012 and we were giddy with the positive reception we received. And Jules travelled with me in the winter of 2014 to Washington D.C. where we met with our senators and representatives to encourage their support for the ABLE Act, which subsequently passed ten months later.

A family that votes together...

A family that votes together…

For most of their lives, I believed that when each of my children turned 18 I would march them straight to the board of elections to register to vote. And with Claude, I did. I plucked him out of school, took him to the BOE, snapped a picture of him with the county worker who helped him with his form, and then took him out for a nicer than usual lunch. Last November, Hugo turned 18 and while I could make many excuses, the fact is I did not prioritize getting Hugo registered. I deeply regret this because next week we have a special election in our county with just one question on the entire ballot: Do you support the levy for our county library system? Yes or no? With the decline in housing prices due to the recession, the funding for our library system has commensurately dropped. Yes, this is a local issue, but supporting library systems is invaluable nationwide. Carl Sagan once said, “Frederick Douglass taught that literacy is the path from slavery to freedom. There are many kinds of slavery and many kinds of freedom. But reading is still the path.” Today, however, libraries also have become de facto public after-school programs for latchkey children nationwide.

imgresWhen Hugo was in middle school, he walked most days down a hill to the adjacent library in a transitional neighborhood (the direction in which it was transitioning was not clear). I had three kids in three schools all far from one another and because he was safe in the library, I picked up Hugo last. Filled with children from 2:30 until they closed at 6 p.m., I saw librarians taking their non-funded mission seriously, providing extra programming, leading book clubs, holding craft events, game days and, once a week, showing a movie. Today, our county library system works with the local food bank to provide nutritious snacks for the kids, some of whom eat their school lunch at 10:30 in the morning. If our levy does not pass next week, this phenomenal public resource will cut its staff in half, from 400 to 200 employees countywide. Hours will also be slashed. They start with the weekend hours, but with such drastic cuts, I imagine after-school hours and programming will also shrink.

With my newly-minted voter

With my newly-minted voter

In our family, we do not passively observe and discuss government. Sure, we talk about what we do and do not like in local, state and federal government. But then we work for the values we hold important, particularly equal rights. Because I have seen too many elections, especially in the spring, decided by just a handful of votes, I deeply regret my inaction. Even though I long ago learned the library levy would be on the May ballot, I failed to have Hugo register in time to be eligible to vote in next week’s election. Instead, he accompanied me to the board of elections earlier this week. I voted; Hugo registered and we had lunch at a restaurant across the street from the main library in downtown Akron. Mea culpa, by complacency, I screwed up.  And so, dear readers, if you have an election next week, please vote (yes, Democrats and Republicans alike, go and vote). Readers who live in Summit County, Ohio, the jobs of two hundred people in our community depend upon your vote. As do all the citizens served by our libraries, including the children who safely work on their homework, play games and read books after school when nothing else is available.

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Why My Children Are Now Fully Vaccinated

With winter’s departure, the long-dormant mud in the meadow of the K-8 Waldorf school my youngest sons attend is back. So, too, is whooping cough. Six years ago when there was an outbreak at the school, my son Jules, who was then in the second grade, caught it. A dreamy, lithe child with large eyes, I watched for three months as his body convulsed while he coughed for minutes at a time, leaving his ribs aching and his eyes floating in tears from the exertion. Unlike his two older brothers, I had not vaccinated my son for pertussis, commonly known as whooping cough.

Lately, after several outbreaks of measles in the United States, there has been renewed media attention given to the anti-vaccination movement, much of which would leave any reader thinking that anti-vaxxers are either ignorant of basic science or sociologically indulgent, willing to coast on the high vaccination rates of others. I am neither.

When my first child was born in January of 1994, many societal constructs were being questioned with some Americans opting out of what had seemed inviolate institutions just a generation earlier. While not all practiced equally by the same groups of people, things such as co-habitation before marriage, homeschooling, homebirth, organic and local agriculture were no longer unheard of and, at least in the case of premarital co-habitation, were well on the way to becoming a new norm. It was in this milieu that I gave birth, at home, to my first child. I had medically appropriate prenatal care throughout my pregnancy and after my son was born, the midwives administered a PKU test, pricking his heel and filling dots on a card with his blood to be sent to the local health department to screen for about 40 possible disorders. I also received a Rhogam shot to prevent my negative blood type from creating antibodies lest any future fetus have positive-typed blood. Circumcision is not religiously significant to me but was another previously accepted protocol for all infant boys with many hospitals often performing the procedure as a matter of course. I read all I could on circumcision and found no compelling reason to cut off my infant son’s foreskin.

syringeChoosing whether and when to vaccinate, as well as what vaccines to give my child, was not so simple for me as choosing homebirth or foregoing circumcision. After reading everything I could find, I decided to follow a middle path of my own. Japan, hardly a backwards country, was at the time initiating vaccines for children not at birth, but at the age of two. With the exception of Haemophilus influenza Type b, or Hib (which is most harmful to children under the age of five, but especially babies), I decided I would begin vaccinating my son at the age of one, when his immune system had developed. I believed, with good reason, that as an exclusively breast-fed baby for nearly nine months, he was benefitting from my immunity.

In the 1990s, I was hardly alone in struggling with concerns about vaccinating my child. At the time, many educated parents questioned several important things about vaccines. The vaccine for DPT (diphtheria/pertussis/tetanus), for instance, was often cited as being mixed in dirty solutions. This was confirmed for me when I met with my son’s pediatrician to begin vaccinating him in the winter of 1995. We were living in Boston at the time and she told me that Massachusetts had created its own batch of DPT, available only in that state, to avoid using the tainted batches found in the rest of the country. However, that same pediatrician was incredulous when I insisted upon strictly giving my son the killed polio vaccine because it was possible, albeit a very small risk, to contract polio from the live vaccine. “You have to give the live vaccine in the first dose because it has to go through the gut, which is how the disease enters the body,” she told me. When I mentioned that diphtheria was also contracted through the gut but the vaccine for that disease was not given through the gut, she had no response. I stuck to my guns and four years later, in 1999, the United States abandoned the use of live polio vaccines.

There were also issues with other vaccines in the 1990s. In 1998, the rotavirus vaccine was introduced and recommended by the American Academy of Pediatricians for all infants. It was pulled the next year when several children required surgery for intestinal blockages directly linked to the rotavirus vaccine. It was eventually reintroduced in 2006, which means it took seven years of research to resolve the issues with a vaccine that for one year had been recommended for all infants in the United States.

And then there is the thimerosal controversy. A derivative of mercury, which is highly toxic in certain formulations (but not in elemental liquid mercury), thimerosal was still abundantly used to preserve vaccines in the 1990s. At the same time, autism diagnoses exploded to what felt like epidemic proportions. A diagnosis that was rare, though not unheard of, in my childhood became so common in my early years as a mother that it felt like an inevitably with each pregnancy. So significant was the increase of autism and Asperger’s (which is now seen as part of the spectrum of autism) it seemed implausible to think the increase was simply due to improved methods of diagnosis. Thus, it is not surprising to me as someone who lived and bore children in the 1990s and early 2000s that parents were susceptible to claims that thimerosal in vaccines caused autism. Eventually, in 2011, an article in the British Journal of Medicine thoroughly discredited any connection between thimerosal and autism. But by then my firstborn was seventeen years old and my third son, Jules, had long recovered from his pertussis.

Neither out of stupidity, nor out of entitled indulgence did I vaccinate my children differently. I struggled to find the best way to protect my children from disease and from the risks in vaccinating. Sure, the chances of contracting polio from the live vaccine were very slim, but if it is your child who is the one in a million, the results are no less devastating because 999,999 other children did not contract the disease.

My third son was born in the summer of 2000 and like his brothers I had him immediately vaccinated for Hib. When he was a year old, I began his regular vaccinations. But then we moved and I did not complete the cycle. Today, I struggle to recall why that was and I do not believe I simply had forgotten to complete the booster schedule; there was an element of choice. A choice made in part due to continued distrust of less significant vaccines. I read several articles in non-mainstream publications that cited the inefficacy of the annual flu shot. Then, in November of 2009, The Atlantic published a comprehensive article on the flu vaccine that pretty much agreed, across the board, with the non-mainstream publications.

My oldest son is now twenty-one years old and many of the issues I had with vaccines when he was an infant have been resolved, which may be due in part to the fact that a small percentage of the population began opting out, thereby putting governmental light on their concerns whether real, as in the case of polio and rotavirus, or not, as in the case of thimerosal and autism. But when I watched pertussis debilitate my son Jules for three months in 2009, I had what I call a “Coming to Jesus Meeting” with myself in which recognized the following:

  • None of today’s vaccines come with the risk of developing the disease for which the vaccine is being given such as it was with live polio.
  • Not only has the thimerosal/autism theory been thoroughly debunked, since 2001 thimerosal has been removed or greatly reduced in nearly all vaccines.
  • Furthermore, with cleaner, safer vaccines it is important to consider the collective benefit of herd immunity. I worry about infants who are exposed to the pertussis that is now roaming the halls and playgrounds of my children’s school.

I reviewed my three sons’ vaccination records and had them all brought up-to-date and inoculated for things I had chosen to forego in the past, such as Hepatitis A and B. I went on to have two more children in my forties, both of whom have been fully vaccinated on schedule in part due to the approach of my pediatrician. An M.D. PhD, our pediatrician is never condescending when she talks candidly with me about the latest research on vaccines. My fifth and final child, who is also my only daughter, has Down syndrome. People with Down syndrome can have suppressed immune systems and my pediatrician told me that studies of children with Down syndrome have shown that vaccination not only protects these children from the specific diseases, it also improves their immune systems overall.

Where there is a need, vaccines should be improved and gone are the days when physicians can talk to most patients or the parents of patients in a patriarchal, top-down manner and expect unquestioned obedience. Medical personnel owe it to their patients to give them accurate, up-to-date information without any trace of condescension. For the history of vaccination, inarguably one of the greatest scientific advances in human history, is not uncomplicated. But today, more than ever, the benefits far and away outweigh any risks and I hope that one day soon pertussis, measles and mumps can go the way of small pox, which has been eradicated through vaccination. (The same would be true of polio but extremists in parts of the Middle East have gone so far as to murder health workers in order to prevent the administration of the polio vaccine in their regions.) Because no child should unnecessarily suffer, as my son did, from a disease that is entirely preventable.

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Seen as Sick: Conjuring Illness to Deny Full Humanity

“Is there a vagina?” I asked the midwife.

After a summer of crop-killing drought, rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning, opened our windows and a soft breeze cleared out the re-circulated air. Sitting on my side of the bed, I looked out the screen door to our veranda while I waited for each contraction, watching the soft rain, breathing in the fragrant storm. When I began to push, just a couple of hours after hard labor had begun, the storm seemed to move with me. Still falling in straight lines, the rain grew heavy and splattered noisily on the heat-hardened ground. Fifteen minutes later the baby emerged, the rain stopped and, as unbelievable as it sounds, the clouds parted just enough for a shaft of sunlight to settle onto the soaked lawn.

My fifth child is my first daughter. Or so the doctors had told me during a level II ultrasound exam eighteen weeks into my pregnancy. But reading an ultrasound is a subjective art and there are no guarantees of the analysis. We knew this.

Because I was 46, I underwent many prenatal tests while expecting my last child. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and that beautiful is better than good. Having decided we would not terminate a pregnancy if the fetus had Down syndrome, my partner and I passed on an amniocentesis. Furthermore I believed, whether intuitively or superstitiously, I would lose the baby if I had an amnio. That’s because my grandma, who mothered me unlike anyone else, had four boys because her only daughter died at birth. Grandma had a negative blood type and the blood of her baby girl, her second child, was positive. At the birth of her first child, Grandma’s blood had created antibodies against his positive blood type, which remained in her body and later killed her daughter. Since the 1970s there has been a remedy for this. After each of my babies’ births, for I too have negative blood, I was given a RhoGam shot that prevented my body from building antibodies to positive blood.

Grandma kept trying for a daughter, even when my grandfather did not agree, but only boys came. When I learned my fifth child was female, I believed an amniocentesis would cause me to lose my baby just as the Rh factor took Grandma’s daughter. It isn’t logical, I understand, but I felt very strongly about this connection. I still do.

Bluish and slippery when the midwife handed her to me, the baby screamed long and loudly. Her eyes remained closed as I began nursing her. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect. When she finally opened her eyes, I mentioned that they looked “Downsy.” I saw a bulk of skin on the back of her neck, and then the ghostly pallor of her pupils. I mentioned these things to the midwife, who had listened to Lyra’s heart the moment she was born, and she told us she’d fully examine the baby in a bit, to just hold her for a while. In the middle of our bed, Lyra’s father and one of her brothers huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.

My daughter has Down syndrome. And, when she was born, she was blind. The murky white of her pupils, the color of breast milk in a glass bottle, was bi-lateral cataracts. All of which left me to revisit what I thought I desired in a daughter, what it is to have Down syndrome and, ultimately, what it means to be fully human.

The first days of Lyra’s life were filled with appointments: pediatricians, a geneticist, a genetics counselor, two ophthalmologists, and several lab technicians. I did not cry when Lyra’s diagnoses of Down syndrome and cataracts were explained to us, her father and I just pragmatically, if not numbly, proceeded with what we needed to do for our infant. On the weekend after Lyra’s birth, we finally stayed home. Our midwife came to check on us and during her visit my partner drolly mentioned that he had to change all the diapers while I just lazed about. After she left, I told him how embarrassed his stupid diaper joke had made me feel, how I could not believe after a week of traipsing from one specialist to another when I had just given birth that he would call me lazy, even in jest. Anger suffused with pain until hot tears rolled down my face when my rational brain stopped driving my mouth, “And I don’t even have a daughter who will want to do the things mothers and daughters do, like, like go shopping! And what about a wedding? And all those things, school, books, what will we have?”

Right then, just days after her birth, I did not know how having Down syndrome would affect Lyra and nobody could tell me because people with Down syndrome have a wide range of abilities. But only after my bubble of grief had popped open and spilled all over our bedroom could I look at the contents. First of all, what were all these sexist stereotypes I suddenly felt were taken from me? I don’t even like shopping. I’m what I call a “surgical shopper,” I’m in and out, zip-zap, going to the same stores where I know things fit my family. The idea of spending a day shopping makes me glaze over with catatonia. Why did I care about a wedding? I never thought about weddings when my four sons were born. That episode in our bedroom was the first of many installments in which I would question whether I felt a certain way or, later, if Lyra behaved a certain way because (unlike all my other children) she is a girl or because (unlike all my other children) she has Down syndrome. If Lyra had 46 chromosomes, would I have thought, shortly after her birth, about shopping and a wedding? I will never know.

What I do know is that with each newborn a family is reinvented and there is a period of adjustment for all its members. First, a couple becomes parents of an only child. If they carry on and have a second child, the family has an adult to child ratio of 1:1. Should they continue further and have three or more children, the parents are outnumbered and in a whole different league of parenting. Also, with each baby the sibling order is reconfigured. But as both our first girl and a child with multiple diagnoses, I questioned things with Lyra that I had not encountered with my previous newborns. How would having an extra chromosome affect her? How could we make sure any disadvantages or discrimination Lyra might face, as a woman with Down syndrome, not be compounded by the limitations of her vision? The truth is, we have no way of predicting the long-term significance of Down syndrome or bi-lateral cataracts on Lyra’s abilities. In some ways, that has been more unnerving than the diagnoses themselves, a sentiment echoed in one of the first books I read on Down syndrome in which a mother of an older child writes, “I wish I had worried less about who my daughter would become and enjoyed the baby she was.”

Our first two years with Lyra were as though I woke up to find myself unexpectedly enrolled in a graduate program on Down syndrome and, to a lesser degree, vision impairment. Lyra’s father and I have read (often not the same) many books, articles, and blogs on Down syndrome. We began attending different meetings of local support groups, as well as the annual conventions of the National Down Syndrome Congress, conventions that function much like academic conferences. But as a writer, I process life by writing. So, when Lyra was three months old, I began a blog about our entire family, with Lyra as the inevitable focus of most essays. There are now more than fifty of these essays and when I read back I see not just a record of Lyra’s first years, but also my own evolution in understanding Down syndrome.

In one of the first essays, I describe learning about Lyra’s diagnoses and, while we loved her immediately and perhaps with even more ferocity than with our other children, feeling unsettled about how her diagnoses, especially her Down syndrome, would manifest. Months later, I re-read that essay and cringed at two terms I had used, one of which I promptly removed. It was the word “healthy,” which I had used to describe what I had wanted my daughter, in fact all my children, to be. Webster’s defines healthy as “enjoying health and vigor,” with “ill” as the antonym. Webster’s also defines health as “the condition of being sound in body,” with the antonym of “illness.” It is true that anywhere from 40% to 60% of children born with Down syndrome also have heart disease, ranging from holes that close on their own to multiple, severe defects, and we have known far too many children Lyra’s age who have died in their third year of life due to heart conditions. But most children with Down syndrome who have heart disease do not die and instead their hearts are permanently repaired either naturally or surgically. Fortunately for us, the pediatric cardiologist who performed Lyra’s fetal echocardiogram was correct: Lyra’s heart is beautiful and beautiful is better than good. She had a post-natal echocardiogram that once again revealed a perfectly healthy heart.

The other term I cringed at, but left in that early essay, was “milder symptoms,” which I had used to describe what I wished for Lyra. “Milder symptoms” is a legacy of the terms “mildly retarded” and “severely retarded,” both of which were commonly used to discuss people with Down syndrome when I was growing up in the 1970s. Rather than remove the words “milder symptoms” I left them as an example, which I discuss in a separate essay, of how the language regarding Down syndrome has changed rapidly in my lifetime, paralleling all the other changes surrounding the housing, health care, education and integration of people with Down syndrome. In the past twenty years, the word “retarded” has been deemed derogatory in any context. The same needs to happen to the words milder/mildly and severe/severely, comparative words that are routinely assigned to the symptoms of illness including fever, pain, nausea, and rashes (just look to the previous paragraph for an example). They are also used to describe outbreaks such as the annual flu and epidemics of disease. But having a mild or severe case of an extra chromosome is akin to having a mild or severe case of pregnancy. You either do or you don’t; you either are or you aren’t. There is no degree of Down syndrome, just a wide range of abilities exhibited by people with three twenty-first chromosomes. And really, how is that any different than the wide range of abilities exhibited in the population with two twenty-first chromosomes, i.e., “typical” people?

Yes, my daughter has an extra twenty-first chromosome, which certainly has causal impact on who she is, but my daughter is not ill; she is one of the most robustly healthy children I know. At two-and-a-half years of age, Lyra had never needed antibiotics, never had an ear infection, though she had contracted a reasonable number of snotty-nosed colds. She eats, sleeps and energetically plays. When left to her own devices for even a minute, Lyra gets into cupboards, the dog water bowl and, her personal favorite, the bag of paper to be recycled. Just like any toddler. Furthermore, the Ohio government does not consider Down syndrome to be an illness. Since birth, Lyra has had six eye operations (three on each eye). She wears highly specialized contact lenses (charitably made by Bausch + Lomb who make no profit on her rare lenses) for aphakia, or eyes without natural lenses. Her natural lenses were removed when she was six weeks old to eliminate the cataracts and allow her brain to develop as a sighted person. She sees an ophthalmologist on a regular basis and presumably will do so for the entirety of her life. The Ohio Bureau of Children with Medical Handicaps (BCMH) has helped us with the costs related to Lyra’s vision, but they do not cover any expenses related to Lyra’s Down syndrome specifically because it is a condition that can be remediated with interventions. While I can argue that it is in the state’s best interest to insure that early interventions for children Down syndrome, including physical, occupational and speech therapies, occur regularly and with accredited providers, the state has categorized Down syndrome as a disability, not an illness. While they do provide modest, at-home interventions in the first three years of a child’s life, the state primarily uses the public school system to provide services to children with Down syndrome up to the age of twenty-two.

Re-reading what I wrote two years ago, I see the subtle belief I held that Down syndrome was in essence a form of illness, a false belief that is pervasively held. While undeniably used to withhold the status of full humanity to both men and women, the false application of illness has a particularly misogynistic history. Certainly as far back as the Victorian era, illness has been used to depict an idealized form of an adult female. The consumptive woman with luminously pale skin shown reclining, her limp body nearly lifeless, was a mainstay of fin de siècle art and literature. How better to deny full humanity to half of the population than to enlist its complicity to behave as wan and powerless beings in order to attract the other, dominate, half of the population? Nor did that misogynistic cultural norm disappear as each and every wave of feminism washed over society. Like racism, today misogyny is often hidden from open conversation and behavior, only to be expressed in subtler ways. Seeing Lyra’s full humanity requires overcoming not just perceived medical limitations, but deeply rooted social and cultural perceptions too.

If Lyra is not ill, what is she? In the past two generations, children with Down syndrome are experiencing previously unknown levels of intervention, education and rich social lives. This has resulted in an explosion of new statistics. One of the most dramatic is that life expectancy has increased in the past thirty years from 25 to 61 (and continues to rise). Meanwhile, life for people with Down syndrome is radically different than it was in the 1970s. Today, children with Down syndrome go to school, graduate, and some continue on to college or other post-secondary programs. Many adults with Down syndrome are successfully employed, an ever-increasing number are getting married and even, the most surprising to me, driving cars. Living independently as an adult with Down syndrome is now the norm, not the exception.

IMG_1954So are people with Down syndrome different from the rest of us with just 46 chromosomes? Yes, and no. What I have observed in my own child, who is two-and-a-half years old at this writing, is her development is delayed, but in consistent measure. Due to hypotonia, or low muscle tone, a hallmark condition of Down syndrome that is entirely unrelated to cognitive function, Lyra first sat up when she was ten months old. Her brothers all sat up at about six months. She also crawled, and later walked, when she was a year older than her brothers when they achieved these milestones. Hypotonia can also affect the muscles of the mouth. Not unlike trying to speak after being shot up with Novocain, so too can the speech of some people with Down syndrome be harder to understand. And because people commonly assume that poorly articulated speech signifies low cognitive function, it is important to us that Lyra work with a speech therapist, which she has done since she was three months old. An extroverted child who loves to talk, everyone in our family understands Lyra’s speech while other people understand most of what she says, which, again, is little different than most two-year-olds. As Lyra has acquired, one-by-one, the basic skills of living, my fears about my daughter’s abilities have, in equal measure, begun to dissipate. With time, I have come to see that she will get there—“there” being a fully autonomous person—at her own pace, but she will get there.

Yet no matter the successes of Lyra and others liker her, she lives in a society that overwhelmingly treats Down syndrome as an illness, which many people believe should be avoided at all costs. The pervasiveness of this false belief was driven home in the summer of 2014 when evolutionary biologist and ethicist Richard Dawkins tweeted his response to a mother who had asked him what he thought she should do if she discovered the baby she was carrying had Down syndrome: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later defended his tweet by saying to do so would avoid suffering, revealing his utter lack of knowledge about Down syndrome. Clearly Dawkins not only sees Down syndrome as an illness, but he holds the view that people who have an extra twenty-first chromosome are less than fully human. Exposing the tremendous amount of work that needs to be done to educate, well, basically the world. For if an eminent researcher like Richard Dawkins is unaware of the scientific evidence regarding Down syndrome, it troubles me to think what is required to disseminate these facts within the general population.

And, yet, Dawkins’ ignorant tweet was a gift. The response was thunderous and substantial and, as a result, the controversy that ensued reached people who previously knew little or nothing about Down syndrome. Op-ed pieces appeared in newspapers and bloggers wrote about “The Down Syndrome Advantage,” a phrase coined to describe not anecdotal stories, but the scientific evidence regarding Down syndrome, including the following facts:

  • The divorce rate in families with a child with Down syndrome is lower than in families with a child with other congenital abnormalities and in those with a non-disabled child.
  • In a sibling study, 88 percent of the respondents reported feeling that they themselves were better people for having siblings with Down syndrome.
  • Researchers have found that people with Down syndrome have significantly higher “adaptive” skills than their low I.Q. scores might suggest.
  • 99 percent of people surveyed with Down syndrome (284 respondents), including people who are categorized as “medically fragile,” stated that they were personally happy with their own lives.
  • 96 percent of people surveyed with Down syndrome liked the way they looked.

Before I had Lyra, there were things I planned to do if I ever had a daughter. Unlike my own upbringing, which implicitly stressed marrying a financially successful man over all other considerations, I would urge my daughter to find a career path that brought her joy, a sense of fulfillment and financial security. That making a commitment to someone who is financially successful is fine so long as that person truly loves her and makes her happy. To never let someone tell her she could not do something she wanted to do because she is female. That true beauty is derived from respecting and nourishing our bodies, minds and spirits and not to let anything cripple any part of her beautiful being.

The realization I have come to since the early days after Lyra’s birth is that her diagnoses need not change how I have long planned to raise a daughter because there is little, if anything, that Lyra will not be able to do or have simply because she has an extra twenty-first chromosome. What needs to change is the pervasive and radically false notions about Down syndrome that prevent my daughter, and others with Down syndrome, from being treated as fully human.

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Hiking, Dogs, and Fading Angels

“Oh, Lily, someone else is in our park!” I told my bi-black sheltie after a woman attempting to jog on the icy path startled me from my thoughts. Winter’s grip is finally weakening here in northern Ohio, evidenced by emerging populations. Last week I was awakened by the cheer-eeee of a red-winged blackbird announcing his return, causing me to smile before opening my eyes. Later that day, I did not smile at all as I saw ribbons of tiny ants marching on our kitchen countertops and around the trashcan. The Ant Spring Ball occurring inside our dishwasher was abruptly concluded with what must have seemed to the participants like a previously unpredicted tsunami.

10926241_10152923121570660_93094696278365792_oAnd now the humans have returned to our park. My life thus far contains two constants: hiking and dogs. Our side of Akron is nestled into an expansive county park system that rolls into the even larger Cuyahoga Valley National Park. I have several favorite trails I hike a couple of times a year, including those in O’Neil and Hampton Woods, but day in and day out, I hit the same trail in the same park. And for the better part of three months, when the temperatures are well below freezing, I rarely see another person on the trail, which I curmudgeonly feel is my reward for being undeterred by the cold or as the Germans say, “There is no bad weather, only bad clothing.” A forest muffled by deep snow where even the animals are quiet is a stark reprieve from the sensory clutter of modern life.

I am not as good at getting my butt on my meditation cushion each day as I am at getting my feet on the trail. In sitting meditation the focus is on the breath, training the mind to stay put, both in the moment and in the room, with the practioner. On the cushion, my mind wanders and bolts like a feral mustang refusing to be captured. And while not exactly a trained Clydesdale when hiking, repeating the same steps on the same path over and over I observe the same plants, the same ravines, the same coves and, thus, notice the slightest changes. Lately, I’ve been working on a list of things to stop beating myself up about. One is my poor attendance on the cushion. Instead of I really should sit everyday for at least 15 minutes I now think I am cultivating my mindfulness training with each step I take on my hikes. Check. And carry on.

As I hike the same path, most days I am preoccupied with things that have happened or things I need to do. Somewhere along the way, however, the chatter in my head often stops, if only briefly. Creatures capture my attention, be they large deer springing up the hillside, their white tails bopping with each leap, worms coating the leaves after a fall rain or those intrepid little spiders on the vast slicks of ice. And for a moment, I am in the moment. And that is all there is.

The first two months of this year, the mercury never rose above freezing. Each of the many deliveries of snow was stacked upon the previous one. I start my hikes by crossing an open field, which was easier when I could find my boot prints from the previous day. But many times either new snow had filled up my prints or the wind had covered them over. Like walking through wet concrete, trailblazing in knee-deep snow is hard work. “Yeah, but you get a better work out,” I’d hear in my head. It was the voice of my eldest son, Claude, a distance runner, who accordingly dismissed my complaints on a hike several winters ago.

Fading AngelsOn the weekends, Max joins me and my hikes are different because we talk. But as the snow grew deeper and deeper, the trail narrowed like a river valley, forcing us to march one-by-one and speak less. In late January, in the middle of the open field, Max stopped, turned and threw himself back onto the soft, fresh snow. Sliding his arms up and down and his legs in and out, he made a snow angel. With temperatures struggling to reach 20 degrees, his snow angel lasted for weeks. Every few days I photographed the outline as it became muted, while the peaks pushed up by his arm movements rounded into what looked like the globes of a soft bosom. When most sections of the angel’s outline finally disappeared, only I recognized the few remaining ripples in the otherwise flat snowscape as lingering evidence of my man’s body.

Yesterday, the fourth day in of our first thaw in months, the snow had compressed down in the daily melt, which then hardened into ice at night. But as I had all winter, before starting my hike, I slipped over the soles of my boots the unfortunately named “crampons.” A slipper’s skeleton made of silicon, crampons suddenly make any shoe or boot like the adult punch at a holiday party: spiked. Helpful all winter, right now they are essential. Without them, going down the ice-slick hills would be dangerous while going up them would be impossible. And yet, ice be damned, spring is certainly coming for the spiders have joined me, as they always do in early spring, on the frozen trail, their dark, spindly bodies high-contrast and out of context on the snow banks. I wonder where they erupt from as the ground is still seemingly sealed in the white snow and grey ice as though restricting for just a little bit longer the advent of mud season, when I will also need my crampons to keep from sliding into ravines.

I used to bring both our shelties, Hoover and Lily, with me on my hikes, but stopped the year we moved into our house. It was a wet summer and the long hair of the dogs, who resemble small collies, would get so muddy I had to bathe them, or at least hose them off, when we got home. Besides, at about an acre, our back yard is big enough that the dogs seemed to get plenty of exercise chasing each other and the squirrels. Then this past November Hoover nearly died from pancreatitis and though, at nearly 14 years old, his recovery was remarkable (thank you Metropolitan Veterinary Hospital), Hoover’s energy has not fully returned. He has instead slid into his old dog days, preferring sleep to all else other than food and affection. While that’s fine for Hoover, Lily is only four and not at all interested in a geriatric lifestyle. And so Lily has joined me and for the better part of the past three months, and on most days she and I have had the park all to ourselves. For Hoover’s sake, I sneak Lily into the car, which is not terribly hard. The silver lining of Hoover’s now near-complete deafness is that he does not hear me call for Lily when we leave, so there are no hard feelings.

Before Lily, there was Greta, a shepherd mix who loved best of all long hikes. Unlike the shelties, Greta hunted on our hikes. When she was young, she could pick off a squirrel or chipmunk running up the side of a tree and shake it dead before I could even holler for her to stop. Even when she was past her prime and no longer a rodent-killing machine, Greta followed along on hikes, darting after creatures then returning to me over and again. As the years passed, our hikes became walks as Greta moved more slowly. At the end of my daily hike is a steep hill and one summer as I slowly made my way up I noticed only Hoover was with me. Turning to call her, I saw that Greta had lain down on the trail a good 25 yards behind me. I called her and she looked at me. She was a smart dog and if you have ever had a truly smart dog, you know they look at you differently than other dogs do; they look at you knowingly. I hiked down to Greta and helped her up. She ambled a few paces before dropping back to the ground. Not as heavy as she’d been in her prime, she was still easily 40 pounds. I picked her up like a calf, my arms around the tops of her four legs, her body on my chest. I walked as far as I could and set her down, she walked as far as she could and then I picked her back up. We repeated our turns until we crested the hill. Though she lived another year that was her last big hike. From then on, Hoover alone went with me. And now he is the old one, staying home on his bed in the kitchen, happy in the warm fray of the family.

While spring, of all seasons, heralds birth and beginnings, death never withdraws. For one thing, as the temperatures rise and the snow melts, all the carcasses created in the winter thaw too, a dog’s delight. Until Greta was so old she no longer darted off, I kept her on leash for weeks after the big thaw began, lest she come back smelling of carrion. People also die and on the second day of spring a few years back when the peepers were in high concert season, I received a text message that a friend had succumbed to cancer the day before. The death of that friend, whose youngest children are twins just three years older than Claude, seems to be the first of many people around my age to die at the hand of the Emperor of All Maladies. Tomorrow my son Jules, who is fourteen, and I will be attending the funeral of a classmate’s mother, the second parent in his small Waldorf class to die of cancer. His classmate is the oldest of five children. As a Buddhist, I have no god to rail against for the existence of cancer and its affliction of people who have so much life left to live. And even if I did, what would that change?

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Where There Is Love

“I don’t buy cartoons for Valentine’s, you know that,” I said, standing in the kitchen. Hugo snatched up my hands in his and lifted them up as though he were going to kiss my fingers. Instead, he began running in place, giving my hands little squeezes to punctuate his points.

“No, but wait, wait, The Book of Life is both a love story and a musical. And…it’s really, really good, and you loved it too!” he said in the little-kid voice he uses when he wants something from me. “Please, please, please? Oh, and, uh, guess who’s never seen it? Go ahead, guess!”

“Oh, that poor girl,” I said knowing exactly whom he meant, “What has she seen? Anything?”

“Nope, nothing important. Not until me.”

Hugo, who might categorize such things with different criteria, is in his first serious relationship. Soon after he and his young lady became an item last fall, Hugo started steadily showing her all his favorite movies, many of them past Valentine’s gifts, including Across the Universe, Seven Brides for Seven Brothers, and last year’s mold-breaker (because it’s not a musical but, oh, so wonderful), About Time.

I took Hugo’s argument under serious consideration, as I have in the past, but perhaps more so this year. For next year, with any luck, Hugo will not be here; he will be off at college training his already lovely baritone to perform on professional stages. Yes, our Valentine’s tradition of giving the kids a DVD of a (usually classic Hollywood) musical will continue and, as has been the case with his older brother, Claude, I am sure Hugo will return home each year and view the latest love story. But it’s different when they are living mostly away at school and this one, Hugo, particularly needs to go to a college somewhere far enough away that he can’t pop over and do his laundry on the weekends. Or beg me to do it for him.

Time Turns

IMG_1955But it is not only Hugo who will transition this year. Max and I try to find ways to bind our two little children’s experiences with those of the big boys, which isn’t always easy given the nine-year gap between Jules, the third child and Leif, the fourth. That is why we decided, among other reasons, to send Leif to the Waldorf school when he was three (and had finally potty trained), the earliest the school accepts preschoolers. For two years, Leif and Jules have been schoolmates, sharing the same rituals and traditions, including making Valentines for all their classmates and teachers.

Jules was six months old when I first enrolled Claude and Hugo at the Waldorf school in January of 2001 and we began making the 70-mile round trip drive from our home in downtown Cleveland to the school, doing so for three school years before moving to Akron. Rather than drive 140 miles each day by going home and returning, I stayed in Akron most days, often volunteering at the school. With Jules in a baby backpack, I helped prepare and serve the once-a-week hot lunch. When he was older and could walk and follow instructions, toddler Jules was my assistant, passing out napkins and silverware to the “big kids” in the preschool/kindergarten class.

At our Waldorf school the students stay with the same teacher from grades one through eight. Now in the eighth grade, Jules and all his classmates have been together since kindergarten, the only exception being a child who joined them at the beginning of first grade. Next year, as we do not have a Waldorf high school, these kids will enroll in at least five different schools with only one child possibly joining Jules at Firestone High School. Rather than making his Valentines as he has always done, this year Jules bought a box of notecards. He wanted to write something to each of his classmates because Jules has recognized, somewhat suddenly with this sweet holiday, that a large part of his childhood, really his entire life thus far, is formally ending.

Knowing When Love Is Real

There I was, all last fall I telling Hugo, Research schools and apply now. I cajoled him, Just think of all the cool places you could go next year! I explained ad infinitum the benefits, If you start applying now we can have this all done by winter break! And I threatened punishment if he did not apply to some freaking colleges already, with absolutely no results. Then, in late November, his vocal coach told him to apply to the Eastman School of Music. For those of you who don’t know, like me until a few months ago, the Eastman School of Music is on the same level as music schools such as Oberlin, Indiana University, and Juilliard; it’s a “reach” school. Yet once some other, non-related, adult told Hugo to apply to this vaunted college, he was like, “Oh, sure, no problem, I’ll get right on that.” Thanksgiving weekend, while the rest of us were with Grandma and Grandpa in northern Michigan, Hugo stayed home and recorded a DVD with the help of his vocal instructor, filled out the application, wrote the essays and sent it all off to Eastman. A month later, we learned he had passed the pre-screening and was invited to audition. And somehow this also inspired Hugo to go ahead and apply to five more schools over the holiday break. Note to self: This boy always pulls important stuff out of his butt last minute. Your adrenal glands will thank you for not worrying next time he procrastinates.

I drove Hugo to Rochester the night before the audition in the midst of a severe snowstorm. With much of Interstate-90 down to one lane, I stayed behind semi-trucks when I could because, in the rapidly accumulating snow, they laid down a set of tire tracks I could follow. What should have been a four-hour drive took more than six even though we did not stop once until we arrived at our hotel. In the quiet disorder of the unplowed parking lot, the cars looked tumbled about as though tossed like fistfuls of dice. I stepped out of the driver’s seat of our car and when I pushed on my spine and twisted, it sounded like someone opening a tent’s heavy-gauge zipper.

“Look,” I told Hugo while we were still driving through Pennsylvania, “It’s a long shot, both getting into Eastman and getting the money we’d need. But here’s the thing, it’s your first audition, so you can tell the rest of the schools that you auditioned at Eastman and they’ll know that meant you made it through the pre-screening. And besides, it’s good practice auditioning at a place like that.”

The next morning, the drive to the audition was as dismal as the night before. Snow still fell heavily and we were running late. Two minutes after I pulled onto the freeway outer belt surrounding Rochester, a cop pulled me over. And gave me a ticket. The Eastman School of Music fully occupies one city block in downtown Rochester. I pulled up to the main entrance and Hugo jumped out of the car. The moment he walked into the auditorium, he told me later, the dean of the school began speaking. By the time I had parked the car, walked over and found Hugo, the dean was gone, replaced on stage by a jazz quartet. When they stopped playing, the applicants were separated from their parents.

When did we each first feel it? I can’t say. Maybe immediately. Certainly when we met for coffee an hour after he had left the auditorium with the other students. Eastman is the place for Hugo. Nowhere else have I ever seen this boy—the one who daily pounded on the window of his daycare while sobbing when I dropped him off, who was horribly misfit in his Waldorf class only to feel abandoned when he transferred to our city’s public middle school for the arts and who eagerly wants to be done with high school—completely in his element. And although he was giddy, he remained centered, if not surprisingly relaxed, when his ability to read music was tested and faculty members interviewed him. More excited than nervous, Hugo took me with him to warm up in a small soundproof room with a piano. I rubbed his neck and shoulders and listened to him go through the three pieces he’d prepared. Then we waited in the green room.

“Can I see him perform?” I asked a graduate student after Hugo had been led onstage.

“No, but you can hear him through the crack between those doors,” he told me, pointing to a set of doors that were an exit from the first row of the auditorium. I pressed my ear to the crack only to jump back when the woman who had introduced Hugo pushed the door open on her way back to the green room. And for a brief moment, seconds only, I saw Hugo onstage, smiling and singing as if there was nothing he would rather be doing, which, on any day, there isn’t. How did he do? If he does not get into Eastman, then it was not meant to be for there is nothing he could have done better at any moment that day.

And This Year’s Movie Is…

Each year before purchasing my Valentine movie for the boys, I check for a film I love so much I have (without their knowledge) never let them see the more famous remake. And while I have a few, this film stars one of my all-time favorite actresses, Irene Dunne. She of crackling wit with Cary Grant in the films The Awful Truth and My Favorite Wife, both of which are said to have been largely improvised. Not a comedy, however, the movie I have sought for years, with no luck, as it remained unavailable on video or DVD, is the epic musical, Show Boat.

poster-show-boat-1936_01-1A success on Broadway, the Kern and Hammerstein musical boldly deals with issues of race, who can legally marry, and single-motherhood and is as timely today as when it was released in 1936. Reviving the role she played on Broadway, Helen Morgan, with her dusky voice, plays the “passing as white,” mixed-race star of the show boat. Morgan’s own life was no less tragic than that of her most memorable role and she died of cirrhosis five years after the film was released. But if that is not enough to invite anyone to watch this early film version of Show Boat, the chance to listen to actor Paul Robeson sing “Ol’ Man River” should be enough. Unfortunately, for a number of reasons, including Paul Robeson being blacklisted for his affiliation with communism, the original Show Boat was entirely unavailable from 1940 until 1983. I have only seen it twice myself at special showings in repertory theaters, the last time being many years ago. But with love comes faith and as I again looked up this film last week on Amazon, I hooted with delight to find it is now available on DVD. I ordered it immediately.

Not only to please Hugo, my next fledgling, I also ordered The Book of Life for even though this Guillermo del Toro production is a cartoon, like last year’s film, it is as much a movie about the love of family, friends, and place as it is about lovers.

Now, please, go find someone to hug. Or watch movies. Or both. Happy Valentine’s Day!

 

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Two Years This Daughter

 

The first two years with a baby with Down syndrome are a lot of work, but then it all gets easier.

I have repeated that sentence, spoken by the caseworker from our county’s DD Board when Lyra was only a few months old, many times over in my thoughts. Lyra turned two years old in August of last year, and for the past six months, I have considered where Lyra is now, and also how our family has transitioned and developed with this fifth child, our only daughter who has Down syndrome.

Yet I have struggled in my attempts to write about this pivotal place where we find ourselves after long anticipation. Two months ago, I wrote “Two Years This Family” intending to immediately follow that essay with “Two Years This Daughter.” And I tried, writing two lengthy drafts that I promptly shelved. Instead, I found more enjoyment writing other pieces, which are also about Lyra, the reality of Down syndrome today and how our society, by in large, remains misguided in its understanding and treatment of people with Down syndrome. Those essays, like all my writing, did not come easily, but were the products of days spent at my desk, writing and re-writing until my brain, as it does after a long day of writing, would buzz like a nest of agitated hornets. That’s when I know to step away from my computer, consider a shower and head out for a long hike. A missing sentence or section or elusive phrasing will sift up, time and again, when I am deep in the woods, breathing hard as I hike up the hills of a two-mile trail in the metropark near our house, not concentrating, but lightly holding the piece of writing, as though it were floating like a cartoonist’s thought bubble, just above my head. It was good, hard work, resulting in essays that I submitted for publication rather than post on Whoopsie Piggle.

The problem with my previous attempts to write about Lyra at the age of two is the essays were boring to write and, thus, boring to read. It is my job, as a writer, to make the material engaging. But describing therapy sessions that began, in the case of speech, when Lyra was a few months old became a dry litany in my hands: we did this, and then this, and some more of this with a little added that, until here we are today, still doing some of the same, but not all the same and trying out some other things as well. Let’s skip the process for now and get to the results:

  • Lyra walks and
  • She talks and
  • She feeds herself and
  • She plays with toys, but more often disappears in the house and takes everything out of any cupboard, dresser drawer or laundry basket she finds within her reach that has been left unsecured. “I see it has been raining baby clothes,” Max says after Lyra has shoved, yet again, several of her shirts or Leif’s pants through the railings of the balustrade on the second floor of our home. Clean clothes purloined from the dressers in the adjacent bedrooms only to be flung onto carpeting coated in cat hair. Thanks, kids.

Yes, Lyra’s acquisition of early childhood milestones came later than for most typical children. But not all that much later and now, at two and a half, Lyra is pretty much like any two-year-old.

The difference lies less with our daughter than with us, which is what Lyra’s caseworker meant by “a lot of work.” Before Lyra, I had never broken down the mechanics of a baby learning to hold up her head, sit up, crawl or walk (gross motor skills). Neither had I considered that my babies picked things up by first using their fingers as rakes and later developing a precision pincer grip with their forefingers and thumbs (fine motor skills). Nor had I worked to train a baby’s tongue to move into the mouth and not rest on his lips (important for speech). I know how to drive a car even though I don’t know the first thing about the mechanics of automobiles. Similarly, I have long understood how to raise small children but my focus was on behavior and education, not how their little bodies went from infant blobs to motoring and motor-mouthed toddlers. They took care of that part of development themselves.

This begs the question, for me at least, how would Lyra have developed without interventions? I have no doubt that she would have learned to sit up, crawl and walk, but perhaps later. More importantly, I believe many of the interventions have helped Lyra learn how to move and use her body correctly, minimizing any overcompensation for her low muscle tone, or hypotonia, a hallmark complication of Down syndrome. And as a socially extroverted child, there is no question Lyra would be talking even if she had not had any speech therapy. However, she would be harder to understand. That is because we have spent over two years helping strengthen Lyra’s tongue and train it to stay, for the most part, in her mouth. The importance of tongue placement for speech was explained to us by Talk Tools founder and speech therapist, Sara Rosenfeld-Johnson, at the 2013 National Down Syndrome Congress convention. She told the audience to sit back in their chairs and lift up both legs so that they were parallel to the floor. She then asked us to move our legs, in tandem, from side to side, around in circles, up and down. After that, she asked us to scoot forward on our seats and try to do the same thing with our legs. What was simple when sitting back was nearly impossible when sitting on the edge of our seats. The same is true with tongues and speech. When positioned on the lips, a tongue is far harder to control and speech less precise than when a tongue is positioned inside the mouth.

There are many subtopics and nuances to Lyra’s interventions, such as the significance of music in Lyra’s learning or long-term breast feeding, that are important, sure, but those are perhaps best described in separate essays.

I wish I had worried less about the person my child would become and just enjoyed the baby she was.

I also regularly think of this quote, which I included in the essay, “Learning About Lyra,” more than two years ago. When I first read those words, just weeks after Lyra’s birth, in a book about children with Down syndrome, I knew I should do just that—stop worrying. And I also knew I could not. I had never had a child with Down syndrome. Before Lyra, I knew only one other child with Down syndrome, the daughter of an acquaintance, whom I met once, when she was a baby. After Lyra’s birth, I began to meet other families in the area through our local support group, The Upside of Downs. But equally as helpful has been a closed Facebook group for mothers of children with Down syndrome who were born the same year as Lyra. These support groups helped in the early days as we learned what we could expect for our daughter both immediately and as an adult. Yet I would be lying if I said I have not found myself, on occasion, comparing Lyra to other babies with Down syndrome who acquired developmental milestones before she did.

It turns out what has most helped me to stop worrying about Lyra is Lyra herself. As she moved out of infancy, her personality revealed itself, as any baby’s does. She’s an outgoing, curious child who loves music, dogs, cats and her brothers. Five-year-old Leif now complains that Lyra tackles him and all too often Lyra yells when he pries toys or cookies out of her hands. It’s no different than the way my first two children interacted when they were five and two.

Lyra, my youngest child, is my girl. And she’s Max’s girl. She’s her brothers’ sister and a friend to her mates at daycare. Two years after her birth, all that Lyra is has normalized. Her Down syndrome, her aphakia and contact lenses are no longer novel to us. Just as having a fifth child who is a daughter (a daughter!) has become routine. (Okay, so maybe the daughter part still tickles me like getting a long-desired present.) The point is we are a family of seven, each of us having different personalities and abilities. Claude, who is quiet and steady except when he’s excited, now writes fiction with content more intense than expected from someone so young. Hugo is confident, if not self-absorbed, demonstrably affectionate and sings like an angel. Jules, whose name means youthful, has the oldest soul of us all. He cares for everyone and everything while quietly carrying deep hurts and anger. Leif is like Hugo: bombastic, demanding and sharp-witted. Max, with his implacable patience, may have missed out on the thing he does so well, being a dad, had we not tumbled into his life when he was in his early forties. And I, who spent much of my childhood alone and lonely, never lack for company. Or love. (Could we queue in a little Sister Sledge here, please? You know the tune.)

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Two Years This Family

Two years ago, I wrote about our Thanksgiving with family in northern Michigan. As has been the case for more years than I can remember, last month we again made our biennial pilgrimage up the mitten-shaped state, our van loaded with children, a dog, a fresh-killed organic turkey, presents and everything else needed for the long weekend. Usually, it hardly seems as if two years have gone by since we all sat down to our favorite meal ever: Grandma Liane’s holiday spread. But not this year.

Much has changed in these past two years, particularly because of Lyra. Two Thanksgivings ago, she was still a freshly made person on this planet. Born in August of 2012, we were all still readjusting to the new family order. And really, more than Lyra being our only daughter, and perhaps even more than her diagnosis of Down syndrome, having five children radically changed life as Max and I knew it. In the past two years, several of my essays have described our struggle to find balance and calm, but only recently have we had the perspective to realize why our equilibrium feels constantly challenged: Parenting five children, unlike four, kicks our butts. If our home were a dollhouse with the back wall removed, those who peered inside would find a house as full of frantic activity as any Keystone Cops film, with a commensurate amount of efficiency. But just as the slapstick cops of the silent film era eventually managed to get where they needed to be, so too have we continued to find our children (if not always ourselves) fairly functional, one even fledging.

Besides little Lyra, the person who has changed the most in the past two years is the eldest child. In the fall of 2012, Claude was a freshman at the School of Art and Design at the University of Michigan. That October, he eagerly returned home for autumn break. Orange bled pink in the late afternoon sky that silhouetted Claude’s profile as he sat in the passenger seat on the drive back to Ohio, questioning out loud his choices. Months later, Claude determined he was just in the wrong major, but those first few months of college, he felt vaulted into an existential crisis. That he felt pressured was not unreasonable, the university was receiving nearly $50,000 a year, largely paid by scholarships, grants and loans, for Claude to be there and he was not sure it was worth it.

IMG_1565The experience echoed his kindergarten year when my bright little boy hated school because, as we later learned, he was severely dyslexic. But just as remediating his learning disability cured his academic low self-esteem in grade school, after switching to the College of Literature, Arts and Sciences at the University of Michigan, Claude eventually felt he was were he belonged. Initially resistant to becoming an English major because, as he told me, he didn’t want to do what his parents did, he’s no longer much interested in anything else. Unlike me, however, his focus is poetry (I have an M.F.A. in creative writing, but then again, Max has his Ph.D. in English Renaissance poetry). While what he does with his life is still an unfolding story, Claude came to Thanksgiving this year looking more like a person comfortable in his own skin than I have ever known him to be. He also came in his girlfriend’s car. And, yes, she came too. He tells me that he and his girl might not go home for the summer this year, they may stay at the co-op where they both live, and work on things that are harder to do during the regular school year. My boy, a man now, who was so unsure of his life two years ago, isn’t launching. He’s launched.

Next to launch, hopefully, will be Hugo. Every year, either Hugo’s birthday or mine falls on Thanksgiving weekend. Our birthdays are exactly one week apart and at the end of November. Two years ago, Hugo turned 16 the Friday after Thanksgiving and we spent the day driving home because the Saturday after Thanksgiving Hugo was scheduled at his then-job, grooming dogs at a canine salon (read: washing scared, furry creatures who frequently bit and defecated on said “groomer”). Even though nobody wanted to leave Grandma’s that soon and the only reason we did so was to get him to his job, Hugo was disappointed at how his sixteenth birthday turned out and he sulked about it. For several months. So last year, in order to acknowledge Hugo’s feelings, however misplaced, we took the entire family to Kalahari, a ginormous indoor water park, the night before and the night of Thanksgiving. For three months, all the big boys talked about how excited they were with this plan. We had over two days of aquatic fun (though, honestly, I would rather have been in the toilet bowl ride with the biggins’ than in the kiddie pool with the babies) and a Thanksgiving meal that, while not as good as Grandma Liane’s, was pretty spectacular with all the traditional dishes plus a prime rib carving station and tables of desserts that would make Willy Wonka drool. Then, on the morning we were packing to leave, Hugo told us, “You know, I realize I’ve pretty much outgrown water parks.” Oh, that kid.

Lily & Hoover, 2012

Lily & Hoover, 2012

This year, we left him at home. No, not to punish him. His vocal instructor strongly encouraged him to apply to a specific music school, which had a December 1 deadline. While we were working our way into food comas in Michigan, Hugo was videotaping three songs for his pre-screening, filing out the application and writing the essays. We left our younger dog, Lily, with Hugo to keep him company. Our older dog, Hoover, however, went with us. Of all the dogs I have had in my adult life, it is only Hoover who has indiscriminately loved everyone he meets. “Boy, your dog sure does like me,” is a refrain we have heard countless times from innumerable mouths. Not pesky, Hoover walks slowly up to each guest, wagging his tail in greeting. If a guest is seated in our house, Hoover will lie by his or her feet, not requiring anything, but always grateful for a scratch of the head or belly. Last month we thought our sweetheart Sheltie was dying of kidney failure. Then, after nearly 72 hours of IV fluids and penicillin, Hoover made a marked recovery from what is now believed to have been pancreatitis. Still, the day we left for Grandma’s house, Hoover had yet another full week of antibiotics to take and, let’s face it, my confidence that Hugo would consistently remember to give the dog his pills was non-existent. Besides, from now until the day he takes his last breath, which at over 13 years old could be any day, Hoover is on the deluxe pampering plan. I frequently imagine, unfairly, I’m sure, that Hoover is milking his recent medical crisis: You know, I’m a sweet, but old, old dog. I could go at any time. Those scraps on your plate might be the last I taste. Rub my belly today, for tomorrow I may die. Well, even if he is milking it, nobody minds spoiling the old boy, who was loved up by many hands all the holiday weekend long.

Two years ago, my essay on Thanksgiving considered the constituent ingredients of family, blood not necessarily being one of them. Cooking in two kitchens in side-by-side houses, which really is one of the best ways to have all the dishes of a good Thanksgiving spread come together at once, Leif and Jules traipsed back and forth collecting and delivering whatever ingredients were needed at the other kitchen. Other than these errands and the big dinner itself, I hardly saw Leif. Unlike his older brothers, all of whom clung to me like marsupial offspring until they were in grade school, Leif’s independence is at once surprising and refreshing. Perhaps it is because he was only five weeks old when we first packed him off to daycare three days a week so I could finish my master’s thesis. Or maybe having so many older brothers, who all seem like adults from Leif’s perspective, along with a father who parents all the children as much as I do, his needs are always tended whether or not I am available. Or it may just be the way he came into the world. Whatever it is, Leif abandoned us in the guesthouse and remained his Grandma’s constant companion, both day and night, for the entire weekend. I am not sure who this pleased more: Max and me for a lessened load of child duty, Leif for the indulgent treatment his grandma gave him (we, who have no cable TV, found her serving him hot breakfast on a TV tray while he sat in Grandpa’s recliner, watching cartoons), or Grandma who loves nothing more than to take care of someone, especially if they are little and a little difficult, both categories to which Leif qualifies.

In ways I had not yet considered two years ago, I see the transitory beauty of family. More people will be welcomed into our eccentric complexity, which may be unique in substance, but no less eccentric or complex than most families. From time to time, one or another of us will ask or be asked, and may choose, to formalize our relationships to one another, as recently was asked of me. No, not what you might be thinking. Max and I are content with our arrangement.

“I want to ask you to consider doing something before I die that I have wanted to do for over forty-five years,” said my stepmom.

“Wow, now there’s a way to set up a question!” I said, laughing. Although she giggled at my comment, when she next spoke I thought my stepmother, who came into my life shortly after my third birthday, sounded a little nervous.

“Would you consider letting me legally adopt you as my daughter?” she asked.

Of course.

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Correction: Older Moms Are Having More Babies. Period.

In the essay I posted yesterday, “Some Words About Down Syndrome,” I referred to the long-cited statistic that while older mothers have a higher chance of becoming pregnant with a baby with Down syndrome, most children with Down syndrome are born to younger mothers because the majority of babies are born to women in their 20s and 30s. While this was certainly true up until recently, the tide has changed. Since the 1970s, presumably as more women pursue advanced degrees and careers, so too have they postponed childbirth. Now, it seems, the numbers have tipped. Women having children over the age of 35 has skyrocketed, having tripled between the years 1975 to 2000, and this 35+ age group now has slightly more than 50% of the pregnancies of a child with Down syndrome. But, as has been brought up in previous essays, younger moms are slightly less likely to abort a fetus diagnosed with Down syndrome than older moms. This fact leads me to suspect younger moms are still having more babies with Down syndrome that older chicas like me, but I do not have any statistics, one way or the other, on live births.

This interest fact was pointed out to me this morning by Mark Leach, whose blog, “Down Syndrome Prenatal Testing,” is one I regularly rely on for accurate statistics and information. The link provided here will take you to his article on the change in maternal statistics in the past 40 years. I highly recommend to anyone interested in issues related to Down syndrome and the ethical concerns surrounding prenatal testing to visit his blog.

This correction underscores the point of yesterday’s essay: There is always more to learn.

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A Few Words About Down Syndrome

lyrarword1Dear Young Mamas of Children with Down Syndrome:

As you all probably know, it is more likely for a woman my age (46 when I had my daughter Lyra) to have a baby with Down syndrome than it is for those of you in your twenties or thirties. But because more women are having babies in their twenties and thirties than in their forties, most children with Down syndrome are born to you younger mamas (even now as more women in their forties are having babies than ever before). This explains why I have so many Facebook friends who are ten, fifteen, twenty or more years younger than me. We are all mothers of little ones with Down syndrome.

You younger mamas inspire me. In the two years since my daughter Lyra was born, many of you have created non-profits with valiant missions: to educate medical professionals about Down syndrome, to support families who have children with Down syndrome, to reach out and help families with medically fragile children both with and without Down syndrome. But mostly you mamas ask questions of each other, using this tool of your generation, the Internet, to find support and guidance as we all navigate the stages and attendant issues of raising children with Down syndrome.

Your passion for your children reverberates in your posts and pictures. Any one of you would bare-knuckle your way up weather-worn peaks or ford valley rivers rushing with spring snow melts to find what your children need and implement what you’ve determined makes sense for them and your families. You also get mad, furious sometimes, when someone says something that seems, if not hurtful, then downright tone deaf. And, yet, time and again, you calmly respond to comments and questions that I know upset you. You give accurate information but, more importantly, you share your stories and the stories of your children. And in these exchanges, as much as it may sound like hyperbole, you are changing the world for our children.

I, as a mother of a child with Down syndrome, am guilty of saying the very things that so upset you and I offer you not an excuse, but an explanation. You are right, language is very important. I raised all of my children to know that there are police officers, fire fighters and mail carriers even though I did not grow up in an environment that was thoughtful about much of anything, let alone language. As a young woman, particularly after I finally enrolled in college at age 21, I recognized the subtle, yet potent, harm caused by sexist language and eschewed it from my own speech. In my twenties, I caught on quickly.  All people, regardless of gender, race, religious beliefs, sexual orientation, national origin or age, should be treated as the full human beings they are and given equal opportunities to participate in society. That they are not has motivated most, if not all, of my political activism for nearly 30 years. Yet a fool I may well be because until I was 46 and held my infant daughter, I had not considered language as it relates to Down syndrome. It had to be directly pointed out to me.

12096046_1018159554872799_1299163800322496535_nThe first or second time I met with our local support group, I recall stopping myself as I said to the coordinator “Down syndrome child.” I apologized and she graciously told me not to worry. People-first language, i.e. a person who has Down syndrome as opposed to a Down syndrome person, is so easy to understand. However, this took a few weeks for me to consistently remember and apply a simple turn of a phrase that identified my daughter as a person, not her condition. Lyra was probably three months old before I had habituated people-first language in my speech.

A few months after Lyra was born I wrote the essay, “Learning About Lyra,” describing how we learned of her diagnosis only after she was born. I reread my essay a few months ago and realized I had used the word “healthy” in opposition to a Down syndrome diagnosis. Lyra, thankfully, is one of the most robustly healthy babies I know. To confuse a diagnosis of Down syndrome with poor health is incorrect. But books and articles concerning pregnancy and childbirth still make that mistake. You young mamas recently rallied a national parenting magazine to remove language from an article that referred to expectant mothers “wishing for a healthy baby but maybe having one with Down syndrome.” Lyra taught me, simply by being the baby in our house, that the word “healthy” used in opposition to Down syndrome makes no sense, which is why I removed it from my essay.

But because the essays in Whoopsie Piggle are about our journey, I did not remove from that essay my covert wish in the first days of Lyra’s life that she test positive for mosaic Down syndrome because of the possibility of “milder symptoms.” It’s a simple phrase that most people wouldn’t notice, but one I would not use today because, again, it connotes illness. I might instead state that my desire for mosaic Downs was implanted by the hope that, in the wide range of abilities children with Down syndrome have, my child would have the highest level of abilities possible. Part of that was my very real grief at the diagnosis, a grief most parents go through only to discover the child they have is perfect because he or she is a real child who is as lovable and as frustrating as any other child.

“Milder symptoms” is a legacy of the terms “mildly retarded” or “severely retarded” and, as harsh as those words sound in our ears today, they were once widely used phrases, certainly as I was growing up and, notably, in much of my adulthood. Consider, for example, that until 1992, The Arc, one of the oldest American organizations supporting parents of children with Down syndrome as well as the children themselves, had the word “retarded” as part of its name. Their website has a thoughtful explanation of how their name changed over time and why it no longer includes the word “retarded.” Closer to home, it was just five years ago, in October of 2009, that the State of Ohio and all its counties were required to remove the word “mental retardation” from any governmental agency or board. Around the City of Akron, billboards went up stating that Summit County MRDD was becoming Summit County DD. That was just six years ago.

If you are 25 years old, five years is pretty much all of your adult life. But at nearly 50 years old, well, things that happened five years ago seem on par with things that happened last month, it’s all so recent. I cannot recall when I no longer thought it was acceptable to refer to a person with Down syndrome as “retarded,” and assume it was after my dad and stepmom began working in a group home in the 1980s. But it wasn’t until a few months after Lyra’s birth, while listening to a performance by comedian Rob Snow  at an event for new parents of children with Down syndrome, that I understood that the word “retarded” is an unacceptable pejorative in any sentence. Again, once pointed out, I absolutely agreed. However, as embarrassing as it is, I have since caught myself on two occasions saying “retarded,” once referring to a cash register where I work and the second time referring to myself when talking with, of all people, Lyra’s occupational therapist. When I did, I immediately slapped my hand over my mouth in horror as though I’d just burped up a vile part of myself. Please, understand, young mamas, rewiring brain pathways is a process, especially the older and more calcified the brain. Yes, I believe everyone needs to recognize the hurtfulness of this and other derogatory words and make every effort to change and all of us can do so—it’s just that some of us have to unlearn habits that younger folks thankfully never learned.

So back to those people who use inappropriate words to talk about Down syndrome or your child. If they are asking questions with earnest curiosity, please continue to listen to the heartfelt intentions over the deeply flawed words. For those of us over forty, few of us had positive opportunities to know people with Down syndrome when we were growing up. If we ask a sincere question with clumsy or even hurtful words, gently point out to us how other words are more precise and not hurtful.

Sometimes all you need to do is listen.

There is a woman who is very important in our lives. Just a year older than I am, she tells me Lyra was put in her life to teach her about Down syndrome. “There was this mongoloid boy in my neighborhood,” our friend said to me when Lyra was still an infant. She then paused and looked over at me uncomfortably, “that’s what we called him.” She had brought him up to tell me a story about finding him alone, at age three, sitting on the street curb, partially dressed. She had not thought of him in years, perhaps even decades. But when she spoke of him, the word she had always used for that boy popped out, as though attached by mortar. I did not have to tell her the the once commonplace word “mongoloid” was wrong both for people with Down syndrome and people from Central Asia. When she heard the word come out of her mouth, I did not have to say a word. In an instant our friend witnessed for herself that word’s impropriety and knew she would never abide anyone calling Lyra “a mongoloid girl.”

More recently this same woman told me, “When I was in college, I worked with these young women who were retarded, they didn’t have Down syndrome, but they were, you know,” and she paused, not knowing how else to describe the condition these women had, before awkwardly saying, “retarded.” She was in tears recalling how these women had been treated. I told her the women were what we now call developmentally disabled, and she said, “Oh! Okay, developmentally disabled.” Our friend does not tell me these stories in order for me to correct her language, she tells me because in knowing and loving Lyra, she sees how unfairly people were treated whom she knew decades ago. And that she bore witness to their treatment and did nothing about it is cringingly painful to her, even though her complacency was based upon her understanding at the time. She did not know what she knows now. Motivated by a compassionate curiosity to discuss Down syndrome using the only language she had known, our conversations have changed the words she uses just as knowing Lyra has changed her understanding of Down syndrome.

The hardest comment to respond to is, in my opinion, They are all so sweet, these children with Down syndrome. This monolithic categorization is a stereotype that denies the full range of human emotions, as well as the expression of those emotions, in people with Down syndrome. And while it is statistically true that higher percentages of people with Down syndrome claim being happier with their lives than the typical population, calling them “all so sweet” is simply a stereotype. What happens when someone does not behave in accordance with the stereotype they have been labelled by the dominant members of society? In January of 2013,  three sheriff’s deputies in Maryland brutally murdered 26-year-old Ethan Saylor over a movie ticket when he did not behave like a “sweet man with Down syndrome.” But now I am just preaching to the choir. You mamas know this story, and too many others like it. It is our shared fear that one day this and other widely held misconceptions of what it means to have Down syndrome will cause our children to suffer and possibly irrevocable harm.

NPR’s Ted Radio Hour had an installment on stereotypes in which the last two pieces, while both about racial stereotypes, could just as easily have been about Down syndrome stereotypes. Jamilla Lysicott compares complimenting a black person for being articulate to complementing an elderly person for being lucid. I can easily imagine a person with Down syndrome being “complimented” for being both articulate and lucid. Paul Bloom digs into the history, the science even, of stereotypes. We know, he says, not to ask a toddler for directions or an elderly person to help us move heavy furniture. Those are both stereotypes that are usefully accurate as they have been developed over the entire span of human existence. Not so with racial stereotypes, which are far more recent in human history (until a few thousand years ago, people stayed put with their own kind), and wildly inaccurate. The solution to breaking down harmful stereotypes? Not surprisingly, it’s meeting individuals from the group being stereotyped.

And that’s where we come in, mamas, and papas too, of children with Down syndrome, we all have a duty to educate those who do not understand Down syndrome, changing societal perceptions one-by-one. Look, if a world-renowned researcher like Richard Dawkins can be wildly ignorant of the facts of Down syndrome in this day and age, most of us “regular folks” deserve a pass for our ignorance and a hand up in becoming informed. Please take advantage of every opportunity to share what you know, even when queried with bumbling and outdated language. Continue to hear the intentions over the poorly-worded questions. A few short years ago, the person asking the poorly-worded questions could have been me. And, as hard as it might be to believe, in a few years that person may be you as our society continues to evolve past where we are now. Or, as my very well-read, open-hearted grandmother once told me when she was in her seventies, “The more I know, the more I realize I don’t know.”

Thank you, Mamas, I am continually grateful to walk on this journey with all of you.

Holly

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Degrees of Difficulty: Little and Big Kids

Little Kid Hard

Once upon a time, I had three little boys each born three years apart. Even before the third boy arrived in the summer of 2000, many a day I could not remember when I last had taken a shower or even brushed my teeth. That is because small children, particularly those under the age of five, have constant, immediate needs. Many involving body fluids, both the voiding of theirs (pee, poo and vomit) and the consuming of mine (breast milk). While I do have fond memories of that time, particularly when we were outdoors, hiking in the Hocking Hills in southern Ohio or the Cuyahoga National Valley Park up north, for the most part, I recall that time in my life in darker tones. In a few short years I’d gone from being on a PhD track, in which I took stimulating courses, had vibrant conversations and certainly did a whole lot of work, to, well, minimal adult conversation and an abundance of body fluids.

Of course I loved my small children, none of whom walked before fifteen months, which I believe was because I carried them so often. And even though the first few days that I nursed my first baby, I repeatedly told myself, If I can just make it through six weeks of this, it’ll be good, I ended up nursing all my children well past two years of age. Once I had the hang of it, I found nursing to be lazy-easy—it’s always ready, perfectly warmed, and quiets a crying babe in a New York minute. But also, I love the feeling of my children nestled into my body knowing that while they nurse, they possibly feel as content as they ever will.

Candid shot in 1998 with Hugo and Claude

Yet no matter how much I enjoyed listening to my three little boys learn to talk or saw how their faces lit up whenever they first saw me in the morning, the resignation from my adult life felt woefully permanent. And then, not infrequently, some sadist would observe me in a harried state, perhaps nit-picking lice in Hugo’s hair in a park while trying to keep the other boys from wandering off, or dashing into a children’s store to buy something off the sale rack because one of them (yeah, probably Hugo) had exploded a volcano of poo out the back of his diaper, all the way up and past the collar of his outfit, reaching the hair on the nape of his neck. Sigh. And this is when a woman (never a man), maybe an acquaintance, but often a stranger, would cackle her unsolicited opinion:

It doesn’t get any easier when they get older, trust me, honey, they just have different problems.

I now know that is just plain bunkum. And cruel. Yes, big kids can bring on bigger problems like school work, sex, drugs and college applications (maybe not in that order), but let’s be clear on what else big kids can do:

Feed themselves

Brush their own teeth

Bathe themselves

Dress themselves

Wipe their own behinds

Put themselves to bed

Dishes

Laundry

Think abstractly and have rational conversations

Big kids, hands down, are easier. Life with our two caboose babies, Leif and Lyra, underscores this point for me each and every day. So when I see little children with a mother whose hair is kinda greasy, spit-up marks on her shoulders, bra askew from nursing, and patience straining in her voice, I make sure to tell her:

It gets easier. So. Much. Easier.

The Low Down on the Big Kid Hard

Here’s the scoop: what your little kids do day in and day out may have a cumulative effect on what kind of people they will become, but there is little to mess up. Love them, feed them mostly nutritious food, make sure they get plenty of sleep, and odds are your kids will turn out just fine. Even throw in a few days of eating all garbage food, not getting enough sleep and a some less-than-perfect-parenting moments and still the odds are that your kids will turn out just fine. But when they are older, a child’s actions can have immediate and long-term, even lifelong, consequences. Unprotected sex can result in disease and/or pregnancy. Experimenting with drugs and alcohol can be a distraction from what is important, can effect brain development and, worse case scenario, can lead to addiction. Less than optimal achievement in high school can result in fewer options after graduation.

My approach has been to push and support my kids from the beginning. People think my children are polite because they say “Yes, please” or “No, thank you” when offered something. This training began simultaneously with speech development, which is why it is routinized to the point of seeming innate. The hard work of parenting is in sticking to your choices. Again, and again, and again. Or as Waldorf teacher and author Jack Petrash says, it’s the job of parents to get kids to do their work and it’s the job of kids to try to get out of their work. It’s not that any one moment of parenting is arduous, it’s providing consistency, staying in your seat as the parent even as your child endlessly challenges you. Pick your coat up off the floor and hang it on your hook, Go back upstairs and make your bed, Put your dishes in the dishwasher, thousands and thousands of times over. For years I would ask Hugo every night before bedtime if he had brushed his teeth. He always said Yes to which I always replied Let me smell your breath prompting him to answer Just a second before he dashed off. Whether he actually brushed his teeth or just swished some minty toothpaste in his mouth, I never knew unless I followed him to the bathroom, which I rarely did. (For the record, once he was of an age where kissing might occur, Hugo developed high oral hygiene standards.)

Beyond my ability to control, because it is part and parcel of my personality, and therefore my parenting, is that I talk openly with my kids, starting at a young age, about life choices, including sex and drugs, and the consequences. And I do so well before the important events or choices are at hand. So, for example, I bought a large box of condoms years before they were necessary and placed it in the hall closet, letting the boys know I wasn’t encouraging sexual activity, but should they or any of their friends become sexually active, to use protection and why. Mostly this has been a successful approach, though on at least one occasion my openness backfired. I had read accounts of men recalling how horrified they were, some even thinking they might be dying, when they began having nocturnal emissions because nobody had told them it might happen. Oh, my, I didn’t want my boys to have such fears and I told them about wet dreams when Claude was about ten and Hugo seven. Thereafter, and for a long, long time, neither boy accepted invitations for sleepovers for fear it would happen at a friend’s house, which, of course, it never did.

As for drugs, I grew up in the seventies with marijuana in all my parents’ households. In my dad’s family, marijuana was openly acknowledged. My mother, however, repeatedly responded like a child caught in an illicit activity: she would tell me the joints I found in her wallet, bedroom, car, etc. belonged to a friend who had asked her to hold on to them for a few days. Though I never pressed my mother as to why her friends designated her the keeper of the joints, some on roach clips and partially smoked, I was as unconvinced of her explanations as, well, any parent might be. What I tell my kids about pot, which is the drug they have regularly been exposed to in their peer groups, is that in high school they are too young to smoke it. If I hear they try it at college, I won’t be surprised, but please, I urge them, wait until your brains are fully developed. So far, as far as I know, they have followed my advice. Then again, it may have absolutely nothing to do with me. Claude is a serious distance runner and Hugo a highly motivated vocalist. I think smoking anything might not fit into their lives.

So Not Perfect

The only problem I have in my life right now is her,” said Hugo to Max last spring, referring to me. The three of us were sitting in my office discussing Hugo’s grades. It was his junior year, arguably the year in high school that most impacts college acceptance rates and financial aid packages. Hugo, who has always challenged me to improve my parenting, to rethink strategies, to confirm that no matter what he does, I’ll still be there with him, had worn me down. Many times in the past year, I have written essays about Hugo but never posted them on the pages of Whoopsie Piggle. He said he wanted to go to college and study vocal performance and music education, but his grades in his academic classes were not what he needed. Oh, they were probably good enough to get him into a school, particularly along with his high ACT scores, but not good enough to assure the financial aid package necessary for him to accept admission. As Claude and I have paid for all of Claude’s college expenses, I assume the same will be true for Hugo. Which means he needs as close to a full ride as he can get.

“If I could move out right now, I would,” said Hugo. For months, Hugo would tell both Max and me what we wanted to hear, that he had a plan and was finally on top of his academic coursework (he has always maintained straight As in his music classes), only to find just the opposite, his academic grades had slipped further, simply because he wasn’t doing the work. When he said he wanted to move out, I turned to my computer to find when he could legally do so in Ohio.

“I’m afraid, Hugo, we are stuck with each other until you are eighteen,” I told him. In the end, I gave up. Not on Hugo, but on his dream of going to a highly-rated music school. The problem was not that Hugo was goofing off, smoking pot or having sex instead of studying in the courses he didn’t find interesting. He was in band, three choirs and, over the winter, indoor drumline. It was too much. But there comes a time when a parent must stop making decisions by fiat and let a child live with the consequences of his own choices. It killed me to see him focusing on things that were not going to benefit him in the long run (band, drumline), at the expense of what he claimed were his long-term goals (a bachelor’s degree in vocal music).

Summer came and we literally moved on. Hugo went to visit friends on Ocracoke Island and Raleigh, North Carolina, then he spent a week at Baldwin Wallace College for an intensive vocal program, before heading to Karmê Chöling with us for family camp. On the way home from family camp, Claude dropped Hugo off at band camp. Five weeks after school resumed, I realized we were in the same situation as last year, except worse. In addition to his regular choirs and band, Hugo has joined the Baldwin Wallace Men’s Choir and, also by invitation, the choir of a nearby Presbyterian church where the choir director is also on the faculty at Baldwin Wallace. And, on top of his regular high school classes, Hugo now takes two courses for both high school and college credit at the University of Akron.

When the chest pains began at band camp, Hugo thought was just indigestion. Five weeks later, Hugo weighed only 141 pounds, having dropped nine pounds off his six-foot frame, and the chest pains, he belatedly confessed, were more frequent and severe. I scheduled an appointment with the doctor for the following week. But it was the next day, while talking with me in the kitchen, that  Hugo bent over and grabbed the edge of the counter and I witnessed one of his attacks for the first time. He had a second attack a few minutes later. It was terrifying. I took him to the emergency room where, after running several tests, the doctor told Hugo his body was telling him he couldn’t do everything he was doing. “Band is killing me, but I can’t quit,” Hugo told the doctor.

“Do you think they can’t get on without you?” asked the doctor, “Because they are going to have to do just that next year.”

In a perfect world, Hugo would have recognized last summer, before the season started, that band would be too much. Once in and overwhelmed, he did not want to let down his section mates. However, when he spoke with them in the days after visiting the ER, they told him they understood. Exactly one week after going to the ER, Hugo quit band. Fortunately, I went with him when he told the band and drum directors, neither of whom expressed genuine concern for Hugo, his health or his grades. Their sole concern was what effect it would have on the band. For his part, Hugo did most of the talking and held his own. I resisted the urge to pipe up until the band director’s comments went from just inappropriate (Oh, I wish I would lose weight when I get stressed!) to aggressive (So you tell me, Hugo, since you want to study music education, how you would re-write and re-organize this program with you not in it, I mean come on, this is what you want to study, music ed, and if your body reacts like this to stress, maybe you should think about studying something else.)

“Hold it right there, he doesn’t deserve that. He’s seventeen and figuring things out,” I said and shortly thereafter, we left the cramped office. We went home and a few days later, Max pointed out that Hugo was back, meaning he’s himself again, more relaxed, playing guitar in the kitchen most nights after dinner. And then Hugo’s father came to town.

The Elephant in the Room

In the winter of 2007, after six months of intermittent pain in my right side, my physician ordered an MRI. The results revealed nothing and yet the pain not only continued, it intensified and became constant. Three months after the MRI, the pain abruptly stopped on the very day I told the father of the three big boys that I wanted to separate. Contrary to public appearances, it was never a happy marriage, but leaving was the hardest decision I have ever made.

One by one, as the boys have become teens, they have told their father how they feel and what they want from him. And each time their father has responded by telling them that their relationship with him is a two-way street and, when they do not just fall in line with his directives, he stops seeing them. Shortly after he turned thirteen, Jules alone saw his father for dinner one night a week and for lunch every other Saturday.

On a Saturday in August of 2014, Jules came to Max and me telling us, “I feel so trapped. Papa just called to say he’s getting off the highway with all his friends from the Cleveland Waldorf school and he’s taking me to go with them to some park and play boules. I just want to go to lunch.” We counseled Jules to call his father back and tell him just what he had told us, which he did. Rather than having lunch with Jules and joining his friends later, his father cancelled that day’s visit with Jules. They had dinner later in the week, and when Jules came home he was a mess of emotions. “Papa just told me over and over how unkind I was to not want to meet and get to know his friends, like, you know, this and everything else he’s done, I don’t want to be alone with him ever again.” Jules begged Hugo to join him at the mealtime visits with their father from then on and Hugo readily agreed. Two things happened at the next visit: their father told them he was moving to the Middle East in five days and, when Hugo went to the restroom, Jules was again told what a horrible boy he was to not spend time with his father’s friends. Five people breathed with relief when a certain plane left Ohio for Dubai.

Now, for whatever reason, their father wants to move back to Ohio. What he says to anyone who will listen is that he misses his three sons so much that he is doing everything he can to find work in the area. Toward that end, he let us know he would be in nearby Cleveland looking for work in early October and wanted to visit with the boys.

“I told him none of us believe him when he says he wants to come back for us, such bullshit. I told him it’d be easier for me if he just stayed away. He gave me that two-way street garbage again,” said Claude after his father visited him for the first time at the University of Michigan, where Claude is in his third year.

Jules was adamant that he never be alone with his father and wasn’t. The two times they met for dinner, Hugo was there too.

Hugo. Earlier this year when I took their father back to court for violating (yet again) the divorce decree, he claimed it unreasonable for him to contribute to the boys’ expenses because they don’t discuss their activities with him. Besides being untrue, it is an abdication of basic parental responsibilities, which is exactly how the court viewed it. For a few months, their dad began paying for some their expenses. Hugo, who never misses an opportunity, started asking his father to pay for all kinds of things. As soon as his father came to town, Hugo worked on getting a computer. But a funny thing happened. Hugo’s throat got sick. It felt constricted and he couldn’t sing with the fullness of his voice, and one day he couldn’t even speak in normal tones. It was the week before the most important vocal competition of Hugo’s life thus far, at Miami University of Ohio. Miami University is not only my ex-husband’s alma mater, he also taught there for a time. Eager to drive Hugo to the competition, his father said they could stay two nights in a hotel and he would show Hugo the campus the day after his competition.

I took Hugo to Lyra and Leif’s pediatrician, Dr. M, for his throat. She had never seen Hugo before and I’d never seen Dr. M in action with a teenager. In twenty minutes, he was crying as she laid it out for him. “Hugo, you say you don’t care about your dad, but you are seriously pissed at him. Because he won’t give you what you really want, which is for him to be a real father, you feel like taking him for whatever you can get. But the problem is that you are an honest person and this makes you feel conflicted. Let me ask you, is this a vocal competition you want to do well in? And so you are going to go there in a car with a man who once told you he was taking you to southern Ohio but instead took you to Tennessee and so understandably you don’t trust getting in the car with him? Let me ask you this, are you nuts? Write your dad, tell him why you want a computer and tell him he doesn’t get to parachute into your life when it’s convenient for him. You may want a relationship with him, but it’s on your timetable now, not his. This is your senior year, and he does not get to mess it up just because suddenly he says he’s ready. Maybe you tell him you’ll talk after the competition, maybe not. Maybe you won’t be ready until after you graduate. It’s your call, buddy, because he does not get to hijack your life.”

Hugo wrote the letter to his father. He told his father not to attend the competition. Hugo and I went to Miami University. In the first round of performances, the two singers before Hugo were nervous sopranos and it showed in their voices. When Hugo walked onstage with the accompanist, I could tell he was relaxed. He opened with a piece by Franz Schubert and although his German was lousy, his voice was sublime. And powerful. Hugo was named one of six finalists.

“I would not have made finalist if my father had been there,” Hugo told me on the way home.

One Kid, Always Hard

So maybe this kid, Hugo, is no easier, maybe even harder, as a teen than he was as a little guy. A little guy who had colic for six months (or maybe it’s like a fish story and the number grows larger with each retelling), the toddler who cried like we would never meet again every time I dropped him off at daycare, often resulting in tears of my own, the kid who never felt he fit in at any of his schools, even the Waldorf school.

“Hugo craves your constant attention,” Max recently said to  me, “and simultaneously pushes against it, it’s so strange.”

Life is complicated, people are complicated. As a parent, perfection is not required, but showing up is. Even without his father’s latest theatrics, Hugo’s senior year is an all-hands-on-deck time. I’ve stopped taking on new clients for now and drastically cut my hours at my “for fun” job at World Market. College applications are time consuming and at the same time, much like Claude in his senior year, Hugo is ambivalent at the prospect of moving out and on with his life in a few short months. He’s excited. He’s nostalgic. He’s nervous. I know this because every day he pulls me aside, corners me in the kitchen, or just plain hunts me down, to talk.

My little kids were so much work in large measure because I chose attachment-style parenting. I’m sure I made this choice in an attempt to heal my own upbringing with checked out parents. But I also believed it when I read that attachment-style parenting resulted in independent, undisaffected teens and, later, adults. I don’t know where Hugo will end up next year. His strong work ethic in all things musical, even more so than his raw talent, might very well result in him getting the financial aid package he needs to study vocal performance and music education at one or more of the schools he is considering.

What I do know is this: No matter what happens, Hugo will be fine. Whether or not cultivated by attachment-style parenting, Hugo is resourceful, hardworking and empathetic. He doesn’t always apply himself the way I want him to in all things, but what kid does? In fact, it would be weird if he did. If anything is easy with little kids it is that their needs (food, sleep, voiding) are pretty clear. Just as I had to get through the first difficult weeks of breastfeeding my first child, I see Hugo struggling to get through his six last months of high school, which requires nuanced parenting on my part. But Hugo’s got this, even if he doesn’t yet know it, and I still have his back.

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What Suffering? The Down Syndrome Advantage

I see you and Max acting so bravely, but nobody asks for a child with Down syndrome.

I recalled those sugar-coated words of sympathy, spoken by a relative of ours a few weeks after our beautiful, healthy daughter was born, when I read this article detailing Richard Dawkins’ advice to an expectant mother. Dawkins is an Oxford professor of evolutionary biology and an ethicist, who is perhaps best known for his 2006 book, The God Delusion, written to contend with those who deny the existence of evolution. In August of 2014 Dawkins tweeted to a woman who inquired what he thought she should do if the fetus she was carrying tested positive for Down syndrome:

“Abort it and try again. It would be immoral to bring it into the world if you have the choice.”

Dawkins’ tweet went viral (I think largely because of his use of the word “immoral”), which he later defended as the humane position to take in order to avoid suffering. His defense reveals how much work needs to be done to educate everyone who does not know someone with Down syndrome, and I said as much on my Facebook wall. I was disappointed then when, on my page and elsewhere, people’s responses had more to do with Dawkins’ atheism than his stand on aborting all fetuses with Down syndrome.

I don’t find Dawkins’ atheism to be any more controversial than the multitude of religions practiced by humans worldwide. What bothered me was that this somewhat firebrand scientist, who is not afraid to challenge dominant thinking, simply accepted an unsubstantiated position widely held by most people, i.e. Down syndrome equals suffering, and uncritically endorsed exactly what happens in the majority of cases where a woman discovers the fetus she is carrying has Down syndrome—the termination of her pregnancy.

This disconnect is not a function of religion, compassion, or a lack thereof, but is rather the result of a stunning lack of facts.

Not Your Grandparents’ Down Syndrome
Before the 1980s most people, including me, did not grow up knowing people with Down syndrome. That is because, until the 1980s, the overwhelming majority of people with Down syndrome were institutionalized, often beginning at birth. Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in 1964, a longitudinal study was conducted comparing infants with Down syndrome who were institutionalized to another group raised at home. The study continued until the children were eight years old and found the children who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.” These studies were some of the the the earliest steps in re-thinking what it means to have Down syndrome and to reconsider the wholesale institutionalization of this population. I was born in 1965 and never saw a single child with Down syndrome enrolled in any of the ten schools I attended, in four different states, from kindergarten to high school graduation. Nor did I see adults with Down syndrome working, as they commonly do today, in grocery stores, restaurants, offices or any other businesses that serve the public.

The first people I met with Down syndrome were adults in group homes where my parents worked. Overwhelmingly, these residents with Down syndrome had lived most of their lives in institutions, only moving into group homes when, in the 1980s, the institutions were dismantled by the U.S. government. As I explain in my essay, “Changing Expectations,” what I, as a young woman, mistook as the reality of life with Down syndrome was based upon meeting people who had spent their entire lives institutionalized. The consequences of life-long institutionalization, where social and emotional deprivation is the norm, is catastrophic for any human being, as shown in these studies (and these) of typical children raised in Romanian orphanages in the 1980s and ’90s.

It was not until the 1970s that the two major U.S. organizations that advocate for people with Down syndrome, the National Down Syndrome Congress (1973) and the National Down Syndrome Society (1979), were created. Both organizations make clear that caregivers—parents, teachers, friends and extended family—should set the bar high for kids with Down syndrome. Children with Down syndrome most often meet, and regularly exceed, the goals set before them. At the same time that children with DS were beginning to be raised at home and national organizations were advocating on their behalf, the therapeutic professions, including physical, occupational and speech, began working with infants and young children with Down syndrome. Four decades later, these professionals and others have continued to discover more and better ways to enhance the physical and linguistic skills of children with Down syndrome. In other words, when our now two-year-old daughter Lyra is 18, it is likely that she will be capable of more than what most 18-year-olds with Down syndrome are capable of today. That is because today we know much more about therapies and interventions for young children with Down syndrome than we did 18 years ago and this trend will only continue. We live in exciting times for people with Down syndrome.

All of which is to say that as the outdated and often patently false notions of Down syndrome are dispatched, there is every reason to expect a baby born today with Down syndrome to live a full and productive life, including mainstream schooling, college or other post-secondary training, independent living, careers, marriage and even (what surprised me the most) driving automobiles.

And this is where the disconnect of information exists. People who are not in the Down syndrome community, as well as many professionals who are and who should know better, overwhelmingly still believe, perpetuate, and make decisions based upon grossly false assumptions about Down syndrome.

Put simply:

  • Historically, the abilities of people with Down syndrome were wrongly underestimated.
  • The end of institutionalization combined with appropriate medical and therapeutic interventions have radically increased the abilities, skills and life expectancy of people with Down syndrome.
  • In era when so much is possible that people with Down syndrome truly are more alike than different from the typical population, the Down syndrome population is being targeted, usually under the misguided assumption of minimizing suffering, for significant (and in the case of Denmark, complete) elimination.

What Suffering? The Down Syndrome Advantage

Lyra and Leif who play, and fight, like all siblings

Lyra and Leif who play, and fight, like all siblings

Dawkins’ tweets on Down syndrome and abortion were simply a public statement of what clearly is the majority opinion of people in Europe and North America. Statistics show that most women who discover their fetus has Down syndrome elect to terminate the pregnancy. A week after Dawkins’ tweets went viral, an op-ed piece appeared in the New York Times. In“The Truth About Down Syndrome,” authors Jamie Edgin and Fabian Fernandez cite several statistics from research on people with Down syndrome and their families, including some that I have presented in previous essays, but are worth repeating:

  • The divorce rate in families that have a child with Down syndrome was found to be lower than in families that have a child with other congenital abnormalities and lower than those that have a non-disabled child.
  • In a sibling study, 88 percent of the respondents reported feeling that they themselves were better people for having younger siblings with Down syndrome.
  • 99 percent of people surveyed with Down syndrome (284 respondents), including people who are categorized as “medically fragile,” stated that they were personally happy with their own lives.
  • Researchers have found that people with Down syndrome have significantly higher “adaptive” skills than their low I.Q. scores might suggest.

These and similar statistics are why the phrase “the Down syndrome advantage” has been coined. For it seems, when reviewing the now substantial body of scientific research on life for people with Down syndrome and their families, that rather than suffering, most of these people are experiencing a higher quality of life than all those poor folks who do not have Down syndrome or a family member with Down syndrome. Why, then, does the perception of suffering persist?

Latent Bias for Developmentally Disabled

There has been plenty of research on the existence of latent racism, as Nicholas Kristoff reported in August of 2014, even in people who “deplore racism…harbor unconscious attitudes that result in discriminatory policies and behaviors.” Similarly, the term “suffering,” when used in a discussion about developmental disabilities, seems to be code, perhaps subconsciously so, for latent discrimination against people with lower intelligence. For example, bipolar disorder is a genetic condition and while schizophrenia may not be genetic, it is certainly a biological event and these two mental illnesses often afflict people of incredible intelligence and creativity, who can and regularly do suffer greatly, as do their families. And while those who have mental illness share with the developmentally disabled a long overdue need for greater support, compassion and medical research, I don’t detect a movement afoot to prenatally eliminate intelligent people with mental illnesses simply because they and their families will surely suffer.

An even better comparison might be cystic fibrosis, a genetic disease that until the 1950s killed most children with the condition by the age of five. In a time span mirroring the same decades in which medical progress has occurred in the treatment of children with Down syndrome, today babies born with cystic fibrosis can be expected to live well into their thirties or forties, or approximately half as many years as the average population. In their shorter lives, a person with cystic fibrosis can expect frequent medical appointments and, not uncommonly, emergency hospitals stays. That is to say that the majority of people with cystic fibrosis are more medically fragile than most people with Down syndrome. However, people with cystic fibrosis do not have delays or disabilities in cognition related to their condition. Do people with cystic fibrosis suffer? I leave it to them to say, but their lives are no less, and often are far more, medically compromised than the lives of people with Down syndrome. Are people with cystic fibrosis less valued members of society because of their shorter life spans? It seems not and, again, I don’t sense a movement afoot to eliminate prenatally people with cystic fibrosis no matter how much they and their families might suffer.

The standard all too often applied when considering a prenatal diagnosis of Down syndrome is the avoidance of presumed (and statistically unproven) suffering outweighing the value of a diverse population. This same standard is never applied when discussing the lives of people with average or above average IQs who have congenital or genetic conditions other than Down syndrome, even when those conditions lead to unquestionable and significant suffering. Granted, today there are no prenatal tests available for many of these conditions, but that may likely change. And when it does, there should never be any movements to eliminate entire populations of people with mental illness or cystic fibrosis like there currently is to eliminate people with Down syndrome. Rather, as a society we should devote funding for research to find effective means of ameliorating the negative effects of of these and other conditions. Yet repeatedly I have heard from researchers who work on finding ways to improve the lives of people living with Down syndrome that funding for research has been reduced in the past few years, being diverted instead to prenatal testing research.

Informed by Experience

While it is true that in Europe and North America the majority of fetuses that test positive for Down syndrome are aborted, the number of women choosing to keep their babies when receiving a positive test for Down syndrome has increased slightly in the past two decades. Researchers believe this is because “women of childbearing age are from perhaps the first generation who grew up in an era where individuals with Down syndrome were in their schools or daycare centers — perhaps not the mainstream integration that we see today, but still a level of exposure that was very different than in generations prior. They grew up watching kids with Down syndrome on Sesame Street.”

To know personally someone who looks or lives differently than you is to discover their inherent humanity, evaporating any “otherness.” Ronald Reagan knew the power of putting a face to a population when he began the tradition of inviting to the State of the Union addresses someone whose situation he wanted to highlight in his speech. This is why I write these essays and am working on a book about Down syndrome. People with Down syndrome are indeed more alike than different, but they are also inspiring. Inspiring because of their accomplishments in a society that remains largely ignorant of what it means to have Down syndrome. Inspiring because, yes, a person with Down syndrome often has to work harder than his or her siblings and classmates to achieve the same things. But time and again, they do, presumably related to what we now know is the highly adaptive skills most people with Down syndrome have.

Those of us in the Down syndrome community know the value of people with Down syndrome. Richard Dawkins reminded me, and many others, of how much work is needed to educate everyone who does not know someone with Down syndrome (many families have publicly invited Dawkins to meet their sons and daughters with Down syndrome). I like to think that this work is happening not only explicitly, as I and countless others write and speak about loving someone with Down syndrome, and as more people with Down syndrome speak publicly about their own experience, but also implicitly as ever greater numbers of children with Down syndrome grow up in mainstreamed settings normalizing for their typical peers what it means to have Down syndrome.

Toward that end, Max and I speak each year to first-year medical students at Case Western Reserve University. We and other families share our experiences of having a child with Down syndrome, while older children with Down syndrome speak directly with the students. I am always impressed by the level of engagement of these students, who seem to have gotten it, that people with Down syndrome are fully human, long before listening to us. Last year, when I mentioned adoption agencies that specialize in the placement of children with Down syndrome, one of the professors interrupted me.

“I just want you all to know,” she said, “that there are far longer waiting lists to adopt children with Down syndrome than for typical children.”

Which is to say a significant number of people do, indeed, ask for a child with Down syndrome.

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Nothing to Fear: Human Rights for People with Down Syndrome

Sarah and I were in Pittsburgh for Quilt Market where we stayed at the downtown Westin. When the elevator stopped on our floor there was a man dressed in business attire already on it. I looked over at him and could see tears welling in his eyes. By the time we got to the second floor to get off, the tears were rolling down his checks. My first impression was maybe he just got fired from his job. Then I thought maybe he was in town for a funeral. As Sarah and I walked off, he came over to us and asked if he could share something. He could barely get the words out but managed to tell me that he and his wife had been expecting their fourth child, a girl, and they knew she had Down syndrome but his wife miscarried three weeks ago. My natural reaction was to give him a hug and tell him how sorry I was. His reply brought tears to my eyes, too. He said, “Thank you for saying that. Everyone else is telling us it was the best thing that could have happened. I see your daughter and she is beautiful.” I was at a loss for words so I gave him another hug and then we went our separate ways. But I thought about that interaction all weekend. Why are people so afraid of Down syndrome that they would tell a grieving family it was for the best? ~A post in my Facebook feed this past spring.

My essays on Whoopsie Piggle have, by design, emphasized how having a child with Down syndrome is little different than having a child without Down syndrome, which is also why not all my essays focus exclusively on my daughter Lyra and her DS. I read somewhere that we are all on the path of disability whether caused by age, illness, accident or an extra chromosome. Tangentially, I have discussed medical issues that are more common in people who have Down syndrome, most particularly vision issues as Lyra was born with bilateral cataracts (occurring in 3% of newborns who have DS versus .03% of those born with 46 chromosomes). More recently, and painfully, I have written about the congenital heart problems that affect approximately 40% of the population with Down syndrome. Before this summer, I had met so many babies and young children who had undergone successful heart surgeries that I unintentionally dismissed the gravity of these cardiovascular diagnoses. And then three babies, all the same age as Lyra, died in just one week this past June. I wrote about babies Ryder, Fiona and Annie in “A Painful Week in the Down Syndrome Community.” Without rescinding my position that having a child with Down syndrome is little different than having a child without DS, I believe it is vital to discuss the possible medical complications that can accompany a diagnosis of Down syndrome. Why? Because uninformed fear causes people to say hurtful things. Because poorly informed medical personnel say fear-driven, and largely inaccurate, things when giving an expectant mother the news that the child she is carrying has an extra twenty-first chromosome. Because in some parts of the world, including regions in the United States and Canada, the Down syndrome population is undergoing a quiet campaign of genocide.

Children May Die

In my last essay, I wrote about traveling in Spain this summer with my oldest son, Claude. Watching my firstborn become a fully-fledged adult has made me ridiculously emotional. I don’t think of myself as a crier. As a child I learned not to cry at all costs. I rediscovered my tears when I became a mother, but in the past two years, I surprise even myself with sudden and unpredicted weepiness. I mentioned crying as I told a Starbucks barista in Barcelona how delightful it was for me, a mother of a child with Down syndrome, to see the respectful and fun relationship the café employees had with their team member who has Down syndrome. What I did not write in that essay was that every morning in Spain, every single morning, I cried. Most mornings, Claude rose and went for a run, leaving me to shower and get dressed. Before I did, however, I’d pull up Facebook on my phone while still lying in bed and weep over the pages of the babies who had died the week before I’d joined Claude in Spain. After her first heart surgery more than a year ago, Fiona’s remarkable parents created Fiona’s Hope Totes, which has its own Facebook page. This non-profit delivers care packages to families in Minneapolis/St. Paul who are experiencing an unexpectedly extended hospital stay with a sick child. The day before she died, Fiona’s family posted an urgent request for prayers as Fiona had been rushed back to the hospital due to complications after a second heart surgery. In the weeks after she died, that post requesting prayers remained the last post on the page, like a scream that wouldn’t fade as the family privately grieved.

Baby Annie’s doctors would not place her on a heart transplant list, whether due to complicating medical issues or the fact that she had Down syndrome remains ambiguous (that there is discrimination against the developmentally disabled getting organ transplants is not ambiguous, the subtle discrimination is real). Annie’s parents opened their lives to the world on her Facebook page, Annie Golden Heart. When I learned of her situation, Annie was alive, but in hospice attended by her parents and two sisters. Each day, I followed her page, hoping for a miracle, hoping as her story drew substantial attention from people worldwide that someone, somewhere would find a way to save that baby. Instead, day-by-day as I and countless others watched, Annie grew bluer, more lethargic and puffy. And then she died. In Spain, I saw the daily posts of a family submerged under and shattered by grief. Pictures of a baby’s grave more preciously decorated than any child’s bedroom, photos of a healthier Annie just months earlier including a collage of the once smiling tot with vibrant red hair and the facial features of her daddy. However, the photo that made me touch my iPhone screen with my finger, as though I could pass comfort through my device, was of Annie’s oldest sister with her face painted to look like a tiger. The caption read: Today is Nicole’s 9th bday. She has been a great sister to Annie. We are so thankful to Marie for taking the girls out today to have fun since it’s still very hard for us to even leave the house. Happy Birthday, Tiger!!!!

Only recently did I learn that baby Ryder had group B meningococcal disease, the most common strain of bacterial meningitis found in the United States (though Ryder did not live in the U.S.). I have found no evidence that having Down syndrome makes a person more susceptible to meningitis or the consequences of the disease more severe. What Ryder’s family is going through I would not wish upon anyone, but his Down syndrome had nothing to do with his death. I carried those babies, Fiona, Annie, and Ryder, with me as I traveled Spain with Claude.images When we visited churches, I looked for La Pieta stations in which Mother Mary holds her dead son, Jesus, just after he’s been removed from the cross. When I found them, I lit a candle for those families. You do not have to be Christian, only human, to feel the emotions of that station in Mary’s life. It’s easy to imagine for centuries parents who have lost a child have found La Pieta a sanctuary of familiars.

When I returned to the States, I was too busy to look at Facebook for a few days. When I did, I saw that Annie’s page had been taken down and Fiona’s Hope Totes had resumed. Fiona’s valiant family was once again delivering care packages to families. Everyone’s journey with grief is unique and there is no accepted protocol except to grieve. A few days later, Annie Golden Heart was again a page on Facebook. I found Ryder’s page and his parents and two older brothers have taken Ryder’s favorite toy, Bear-Bear, traveling with them and posting photos of the white bear at an aquarium, a theme park and in the arms of Ryder’s older brother who took Bear-Bear to bed with him for comfort.

The Ones Who Live

Most babies born with heart defects survive due to surgical corrections that have, in most parts of the world, become routine procedures. But sometimes babies born with congenital heart defects, both with and without Down syndrome, die. And the parents who lose children with Down syndrome grieve every bit as much as other parents. But what about the children with Down syndrome who live?  Most, but not all, babies born with Down syndrome have developmental delays. Meaning, things just take longer and sometimes more support is required along the way. Though hitting developmental milestones later than their peers without DS, most people with Down syndrome will walk, talk, dress themselves, read, go to school, graduate high school, cook, receive post-high school education or training, get jobs, fall in love, live independently, grow old and, like us all, one day die. That is “typical” life with Down syndrome. But what about the babies who face medical challenges beyond developmental delays and heart defects?A friend recently posted that she worries about telling people her son with Down syndrome has seizures. She is glad “he’s alive and he’s mine” but fears that someone else expecting a baby with Down syndrome who knows her son has seizures may chose an abortion based upon his case. Another friend told me about a woman who is a single mom of a boy with DS who is probably deaf, cannot talk, and cannot walk.

We, in first world countries, live in a medically miraculous time. A time unlike any known to humanity, in which death does not often visit us until we are middle aged. My ex-husband’s family lived for well over a hundred years in a small town in southeastern Ohio. Over the years, I heard stories of an ancestor named Flavia. Born in Germany, she studied music and had been introduced to at least one famous composer. In their tiny town in Ohio, Flavia taught music to children and had a parrot that often provided vocal accompaniment. On a visit back home (as my ex-husband used to call it), his aunt told us that Flavia’s gravestone had been vandalized and repaired. Later that afternoon, we stopped at her grave, which we had learned only that day was very near the city’s brick firehouse. I have no recollection of Flavia’s gravestone; I only remember the two stone lambs carved in marble on top of much smaller gravestones next to Flavia’s. Cholera claimed two of her children, ages four and six, in one summer, something nobody had ever mentioned. In the nineteenth century childhood death was not remarkable, yet families grieved as deeply as they do today. Visit any cemetery that dates back before the existence of antibiotics and you will find entire sections devoted to children, families who birthed eight, ten, or more children only to bury all but one or two.

Overwhelmingly, modern medicine is good, but not everything can be fixed. In the typical population, children are born regularly with, or later develop, learning disabilities, autism spectrum disorders, seizures, cancer, mental illness, vision and hearing difficulties. As of now, and unlike Down syndrome, these conditions cannot be detected with prenatal testing. However, that will likely change. And when it does, what will then be considered acceptable? Who defines which babies are perfect enough to be born? In human history, one need look no further than the past century to find pernicious programs to reduce or eliminate certain groups. Black women in the United States were frequently sterilized without their knowledge or consent. The Nazis target Jews, gypsies, homosexuals and the developmentally disabled (among many others) for systematic elimination. As the child of Christian missionaries in China, Pearl S. Buck regularly found the corpses of female newborns who had been discarded like trash. Looking back, this much is clear: once a society has decided that certain groups are not equal or good enough to exist, that decision is never static. If today it seems reasonable to seek a society free of members with Down syndrome, I guarantee that in the near future, particularly as prenatal testing begins to tease out more and more pre-existing conditions or potentials, the slippery slope of genocide will expand.

Weeding Out Variation

That Down syndrome is diagnosable, not only at birth, but also in prenatal testing, is good because, unlike autism or dyslexia, which are subjective diagnoses, results come easily and quickly. With an accurate diagnosis, appropriate support can be given to maximize the potential of an individual diagnosed with Down syndrome. However, because it is a yes-or-no clinical diagnosis, parents can also elect to abort a fetus because it has Down syndrome. Let me be transparent: I believe abortion should be safe and legal. I also believe it should be extremely rare and that support, including free birth control, should be available to all women to reduce the number of abortions. However, what the population with Down syndrome now faces is not an issue of abortion rights, but human rights. To target a specific segment of the population for elimination is simply genocide. We now have the medical means to tell a woman with a simple blood test whether or not her fetus has Down syndrome, underscoring two important points:

  • d6255c3f346e773727932e0f5a74b58aMaking abortion illegal won’t stop the termination of pregnancies where the fetus has Down syndrome any more than it would end abortion for fetuses with 46 chromosomes. In Ireland, where abortion is illegal, the abortion rate for pregnancies where the fetus has tested positive for Down syndrome is 50%.
  • Once we’ve chosen as a society to decide who is human enough to live and who needs to be eliminated, watch out. Any group could be next.
  • Unbiased, accurate information is every woman’s right when receiving a diagnosis of Down syndrome for her fetus or newborn.

In the U.S. we know, based upon statistics, approximately how many babies should be born each year with Down syndrome. But, on average, only about half as many are. For several years in Denmark, aggressive prenatal testing accompanied by counseling that encourages aborting fetuses with Down syndrome has brought the rate of Down syndrome termination to a consistent 90%. In France, it’s over 80%.

My Child Is a Figurative Billboard

In early June, before all those sweet babies left us, my partner Max and I went to a party. We brought four of our children, Hugo, Jules, Leif and Lyra, to the family-friendly event at a beautiful home with a sprawling yard. I had a fabulous conversation with a woman who was smart and funny. After a long conversation, we separated and then reconvened. Lyra was nearby hustling around on all fours with her newly-perfected bear walk.

“She’s so cute, how she crawls on her hands and feet.”

“ Yeah, it takes them so much longer to crawl and walk with Down syndrome.”

“Wait, your daughter has Down syndrome?” the woman asked, looking astonished.

“Oh, yes,” I said. To me it is obvious Lyra has DS, but I am now firmly located on the inside of the larger community of those who have family members with DS and can recognize it more readily than I could before Lyra was born.

“You are so much stronger than I could have been,” the woman said and I disagreed with her. “No,” she continued, “I’m telling you that you are stronger than I was. In my late 30s, I was still single, I had IVF to get pregnant. When I was pretty far along, they told me the baby had Down syndrome and gave me two days to decide. I couldn’t do it. I would have been alone, I…I didn’t do it.”

“I have no judgment,” I said, knowing this woman made the best decision she could with the information she was given. I then watched the features on her face rearrange themselves, her eyes going from narrowed and intense to wide and open.

“But I see your daughter and,” she paused, “it makes me wonder.” I gave her my card, but not surprisingly, I never heard from her. In five minutes, I watched a woman think she could not have possibly raised a child with Down syndrome to wondering deeply, perhaps painfully, what her life really might have been like as the mother of a child with Down syndrome.

Educating the Gatekeepers: Medical Professionals

It is tragically ironic that at a time when we better understand Down syndrome as a range of developmental delays and that those who are diagnosed with DS often positively respond to appropriate interventions, the termination rates in pregnancies with a diagnosis of Down syndrome are escalating to an alarming degree, in some places to the point of annihilation. We have the knowledge to diagnose and remediate Down syndrome but far too often, the message given with the diagnosis over-emphasizes worst case scenarios or contains information that is ridiculously inaccurate. (See the opening quote of “Fully Human and in Need of a Civil Rights Movement.”) Medical professionals, whose job it is to know the latest research findings, are not always giving scientifically accurate and balanced accounts of what it means today to be born with Down syndrome. In fact, statistics suggest that more often the opposite is true. My own understanding of Down syndrome has dramatically changed since the birth of my daughter. What I once saw as the reality of life with Down syndrome I now realize was based upon meeting people who had spent their entire lives, often beginning at birth, in institutions. My daughter stands on the shoulders of the past two generations of people born with Down syndrome who have been raised at home and in their communities, many of whom have worked with physical therapists, occupational therapists and speech therapists. Just as with her brothers, we expect Lyra to strive, even work hard, for all she can accomplish while we support her efforts in any way we can.

Preaching Past the Choir

Parents who have children with Down syndrome know that our children are more alike than different, that they enrich our communities and deserve, as do all human beings, to live full, productive lives. However, until everyone who does not have the pleasure of knowing someone with Down syndrome is made aware of the full humanity of people with Down syndrome, the population remains at risk for a quiet campaign of prenatal genocide and medical discrimination, whether in the form of inaccurate information at diagnosis, low expectations of children with Down syndrome (she’ll walk/talk/learn poorly because she has Down syndrome), or unequal access to medical care, including organ transplants. There are a number of organizations working to eradicate discrimination against people with Down syndrome by educating people everywhere. Please feel free to share the names of organizations you know of in your comments. Here are some that are doing very important work:

  • The National Down Syndrome CongressThese are the folks who conduct the annual convention we have attended each year since Lyra’s birth have as their campaign “More Alike than Different.” Their mission is “provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome, and work to create a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome.”
  • The National Down Syndrome SocietyWith the mission “to be the national advocate for the value, acceptance and inclusion of people with Down syndrome,” NDSS often takes the lead on legislative issues such as the ABLE Act (read about the ABLE Act in “Miss Lyra Goes to Washington“). NDSS is the national sponsor of the Buddy Walk, a fundraising and awareness campaign that takes place each year in cities across the United States. Our local support group, The Upside of Downs, is an affiliate of NDSS.
  • Down Syndrome Diagnosis NetworkThis newly formed organization was created by a group of Mamas who have babies the same age as Lyra. DSDN’s long-term goals include filling in the gaps of inadequate support systems. In addition to supporting new families, DSDN is focused on changing the diagnosis conversation with the vital mission to help “parents give their medical providers feedback on the quality of their prenatal or birth diagnosis conversation.  DSDN provides health professionals the necessary resources in order to deliver future diagnoses with unbiased information and support.” Read: gatekeeper education campaign. The work of DSDN is paramount, now more than ever.
  • The National Center for Prenatal and Postnatal Down Syndrome ResourcesComplementing the work of DSDN, this organization is a clearinghouse of the most up-to-date information regarding Down syndrome. Furthermore and significantly, this organization tirelessly advocates for legislation, state-by-state, requiring accurate information be given with a diagnosis of Down syndrome. For information on the various states that have passed legislation requiring accurate information to accompany a DS diagnosis, and how it has been carried out, read this.
  • The National Down Syndrome Adoption Network: Not everyone, for whatever reason, can raise a child with Down syndrome, like the single mother who struggles to raise her son who is also medically fragile. And no matter how much education is given, there will still be some families who simply may not want to keep a child with Down syndrome. NDSAN is a non-profit that works both with birth families seeking placement of a child with Down syndrome and families who wish to adopt a child with Down syndrome with the mission of ensuring “that every child born with Down syndrome has the opportunity to grow up in a loving family.”

The Choices People Make

Along with the families who lost their babies this summer, I have thought frequently about the woman I met at the party who had terminated her pregnancy. Her desire for a baby had to be substantial as IVF is a painful, lengthy and expensive process. But then she was given frightening information and the directive to decide in two days what she would do. Knowing what I know now, I can only wonder: What if she had met Lyra before she received the diagnosis? What if she—and thousands of expectant mothers like her—had been given accurate information along with resources for support? I cannot help but believe, based upon the change I saw this woman undergo in five minutes, that today she would be the proud mother of a child with Down syndrome. And if all women were to receive the full and unbiased information that they deserve as autonomous adults, would we then be closer to a society that values the human rights of its Down syndrome citizens, rather than one that tacitly endorses the elimination of that population? I believe that, yes, we would.

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Would I Cry?

When he was a senior in high school, my eldest child, Claude, called me a bad-ass mother (which I mistakenly took as pejorative until he explained the parlance of his generation). It’s true, my parenting mantra is “push and support.” So why, in the two years since he graduated high school, have I cried like a melodramatic helicopter mom at every turn in Claude’s life?  Fortunately, with each adult milestone Claude passes, the chest-wrenching feeling diminishes and I cry a little less. The day before this past Mother’s Day, I was dry-eyed as I snapped photos of my son, Hugo, who, dressed in a sports coat and white shirt, stood arm-in-arm with Claude, whose new REI outward-bound backpack was strapped on his back over a quick-dry travel shirt. Then Hugo and I watched Claude peel off his layers for airport security, walk through the TSA doorless doorway, reassemble himself and, turning towards us, wave before heading off to his gate. Ardently, Hugo and I waved in return. I sucked in my breath. “Oh, Mama,” said Hugo as he placed his arm around my shoulders and pulled me to his side, “don’t cry, Claude’s going to be fine.” Though his response was sweet, Hugo’s words were misplaced. My tears these past two years have not been out of concern for my eldest son—far from it. In fact, I never cry over Claude, not really. His beginnings are my endings and grief, mixed with no small amount of joy, is the source of these sudden showers.

"Dream or Working Virgin" by Vincente Cutanda

“Dream or Working Virgin” by Vincente Cutanda

The day after he graduated from high school in June of 2012, Claude boarded a Greyhound bus for his grandparents’ home and a fulltime job in northern Michigan. Each summer, my three oldest boys have stayed for weeks at a time with these same grandparents, my stepmother and her husband (who is not my father; yes, we are a very modern family), who live just a block from Lake Michigan. And yet the day after Claude left, I called my stepmother and cried so hard she could not understand my words, though she knew exactly what I was saying.

“I’ll…never have…the three of them…together…on a road trip…again…it’s over…how can it be that it’s already over? I never…took them…to Yellowstone or…or, or well…other places,” I said sounding like a five-speed transmission bucking a new driver, my diaphragm slam-dancing in my chest. My stepmom said she understood and let me reel on and on until there was nothing left to release and, as abruptly as it had started, the episode ended.

Look, it’s no secret that I love big kids, especially my own. And neither is it a secret that I’m not terribly crazy about small children, except my own. Small children are often noisy and irrational. I think perhaps that’s why I breast fed all my kids for so long—nursing consoles otherwise inconsolable children thereby quieting them, sigh of relief for that, which is to say nursing is selfish on my part. I love who these people I raised have turned out to be; still, gone are the warm days of feeling like a mother quail with my little chicks following behind me in a row as we explore the world both near and far. As it should be, the reward for good parenting is adult children who venture out into the world on the paths they choose. Be that as it may and even with a career and full life, I am not immune to a touch of melancholia at my nest emptying out.

Other Mothers, Other Children

When I was in high school a woman on my street often included me in activities with her own children—events at the local university, drive-in movies, Fourth of July fireworks. When I wanted to take piano lessons, she told me I could practice on her piano since my family didn’t have one. At the time, I wished this neighbor was my mother and her family my family. As an adult, she was one of several women after whom I fashioned my mothering. When my friend’s daughter was in her early twenties, the two of them traveled together to India, seeing large sections of that subcontinent country by train, their sparse belongings in backpacks.

And so, modeled after my friend’s adventures with her young adult daughter, for many years I told my boys I would take them each on a trip, just the two of us, the summer after they graduated from high school. But when Claude graduated, I was seven months pregnant with Lyra, my fifth child. And he took the only fulltime position he could find, with the streets department in Charlevoix, Michigan, because even using all of my savings, which we did, there was not enough money to pay for Claude’s expenses his freshman year at the University of Michigan. The fact is, even with him working that summer we still weren’t sure how we’d cover his expenses as Lyra was born just ten days before he moved into the dorms in Ann Arbor. The poor financial timing of Lyra’s birth was compounded by her unexpected diagnoses of Down syndrome and bilateral cataracts. I wasn’t able to resume working for many months.

The truth is having an older set and a younger set of children often means letting go of previous plans, which I am not always happy to do. Having raised three young boys largely on my own, it seems remarkable I signed up for a second tour of duty. But the trade-off is a no brainer because with Max I am not raising Leif and Lyra alone and neither am I raising my older three children alone. Two more children plus a father for them all.

Having It All

“Don’t come home when your term ends. Your scholarships are paying for this trip, stay a couple of weeks longer and travel,” I told Claude after he announced he had been accepted to study spring term in Granada, Spain. We did not immediately plan a mother-son adventure because a friend of Claude’s thought he might join him. But a few weeks after Claude flew to Spain that Mother’s Day weekend, the friend’s plans fell through. The timing was bad for me. I recently acquired a second investment property that needs work before I can lease it and I rent to graduate students who mostly arrive in July. Nor was a trip financially ideal because, again, I’d just acquired a second investment property that needs work before I can rent to graduate students who mostly arrive in July.

But this I know: Timing for important things never seems ideal and money always works out.

I went to my bank and they gave me a credit card with zero percent interest for twelve months. Claude, like me, prefers traveling on the cheap because if you stay in Hiltons, how is the experience any different than just staying in the States? Using Rick Steve’s Spain, we agreed to find affordable hostals (a step above a hostel, hostals are a step below a hotel and in France they are usually called “pensions”). Max told me not to worry about my properties; he’d take care of the incoming tenants, the workers. I worried about leaving Lyra, I worried it was too much to ask of Max who, you know, also has a fulltime job. “Don’t worry about us, we’ll be fine. Go, this is just what you need.” And so I did.

Spain with My Son

Instead of pre-marital counseling, couples preparing to make a lifelong commitment should leave the country together. The challenges of travel, especially in a country where the native tongue is not that of the traveler, often reveal the essence of a person’s character. How does someone respond to lost train tickets, missed trains, difficulties finding a room for the night, discovering that the locals substantially overcharged you, the tourist, and there’s nothing you can do but pay up? All these things happened to us. When the first of them was resolved by a taxi driver running up to us with Claude’s lost notebook, in which he had stored our 200€ ($260) train tickets to Valencia, we came upon the mantra for our trip: Everything always works out.

The last time I spent two weeks alone with Claude was before my second child, Hugo, was born nearly eighteen years ago. Claude is an interior guy, which I have long, if not always, known. But without the cacophony of siblings surrounding him, it became unmistakably clear that Claude, unlike all his brothers (and his mother) does not engage in unnecessary speech. He’s not inscrutable, in fact, his company is very pleasant but he does not chatter idly. However, two topics elict animated verbosity in Claude: art and politics. Trips can either be deep or broad; we chose broad and traveled to five cities in twelve days, giving our trip coherence by focusing on art (mostly in museums, but not always). Both of us have studied art history and to talk with Claude about the work we saw was to talk with an equal. Claude knows more about pop art and artists than I do and he remembers more about other periods and movements (in all fairness to the mother, the son has studied these subjects more recently than she).

But Claude is also an artist and much of what we saw inspired him. I learned he loves Goya, especially the less formalized works the artist painted for his own home rather than those for the Spanish Court. At the Guggenheim Museum in Bilbao, Claude turned to me and said, “I wonder how much an air brush would cost?” Whoopsie Piggle’s logo on WordPress, in which rows of silhouetted faces look forward while one golden face turns upward, is a piece Claude did with an airbrush. Ironically, if not ridiculously, now that Claude has dropped out of Michigan’s art school to study English and political science, he can take the art courses he always wanted to take but couldn’t when he had to follow the school’s prescribed programming.

More surprising to me, I discovered Claude speaks Spanish quite well. Well, how is that a surprise? the reader might think, the fellow just spent two months living in Spain. Sure, except that when he was in the third grade, the psychologist who diagnosed his severe dyslexia told me not to ever expect Claude to do well in foreign language and suggested I seek an accommodation to exempt him from studying foreign language in high school. That psychologist made so many of Claude’s successes possible when she accurately diagnosed him and guided me to effective remediation options. But traveling Spain with him as my personal translator, again I was reminded that even the best experts can unnecessarily and unintentionally limit a child. “I know this probably sounds corny,” I said to Claude as we walked in the middle of a large boulevard park toward the Mediterranean Ocean in Valencia, where we were told we’d find the best paella restaurants, “but I remember when you were brand new and only had instincts for eating and voiding. You were a blank little slate and in no time here you are getting us around a foreign country speaking a second language.” Claude didn’t respond, my observation only remarkable perhaps to an adult who has watched the newborn become the child who became a man.

Síndrome de Down

“Do you speak English?” I asked the man working at a Starbucks in Barcelona across the street from architect Antoni Gaudí’s unfinished, yet spectacular church, La Sagrada Famíla. Generally, I always try to speak the language of the country I am visiting, but I did not know how to say what I wanted to say in Spanish. Probably in his late twenties, the man had short black hair and a well-trimmed, equally black beard on a face of fine bones—simply put: he was a handsome Spaniard. He told me he spoke a little English.

“Yo tengo una hija con Down syndrome,” I said and my disobedient eyes welled up. The young man reached across the counter and grabbed my hands with both of his. “I hope one day she can work somewhere like this, with such nice people.” Claude, who had gone to the bathroom, walked up and leaned in as he often did when translating for me, but he didn’t say anything. Instead, he quietly watched the barista and I exchanged sentiments in languages neither of us really knew. As we walked out the door, only then did Claude speak. He asked if I was okay. Whether my encounter with the people at Starbucks left Claude touched, embarrassed or indifferent, I cannot say.

We had stopped into the Starbucks before visiting La Sagrada Famíla so I could use their Internet to resolve a pressing matter involving the rental houses. The table where we sat with our cafés con leches was only a few feet away from the narrow end of the service counter. I could see the employees as they worked behind the counter but I did not pay attention until a young woman, who had come from a back room of the café, walked passed our table and behind the counter with the rest of the employees. I whispered to Claude that I thought the woman had Down syndrome but he was writing in his notebook and glanced up only briefly. I went back to my work too, only to snap my head up seconds later when I heard yelling and laughter. The handsome Spaniard, with the fingers of his right hand pulled together and pointed in his own direction as his hand waved like a nodding head, was laughing and yelling at the woman with Down syndrome. She, in turn, lifted her right arm and using her hand like a knife, sliced her points back at the man. I was only briefly concerned by the loud interaction in a language I did not understand (which may not have been Spanish, but Catalonian, the distinct language of that region), because the mirth between the two of them was evident as was the man’s frequent use of the word “guapa,” or beautiful, as he addressed the young woman. When she again walked passed our table, this time carrying a bus tub of dirty dishes to the back room, she was chuckling to herself.

(Note: I have never seen anyone with Down syndrome working in a Starbucks in the United States but a simple Google search found that the most identifiable coffee retailer in the world has long employed people with the most common genetic disorder.)

Not infrequently, I saw other adults with Down syndrome in Spain and consistently I observed something subtle yet, I believe, significant: They spoke for themselves. Yes, as simple as that. They spoke and others listened and responded. You see, routinely in the United States when I have spoken with adults with Down syndrome, their family members often repeat, with added details, what was just said as if the person with DS needs to be translated. Or more disheartening, which has me questioning how most Americans respond when approached by someone with DS, the family members redirect the person with DS under the mistaken assumption that listening to someone with DS bothers me. (It is important to note that neither scenario occurred in the many conversations I had with adults with DS at the National Down Syndrome Congress convention that we attended the weekend after I returned from Spain. I wonder if family members felt they could let their guard down at such an event or if in general the population who attends these annual conventions have adopted a different approach?)

Drool over Quitapenas' daily menus on Facebook.

Drool over Quitapenas’ daily menus on Facebook.

“We don’t get upset about much,” Domingo explained when I asked him about what life was like for Spanish people with Down syndrome. Along with his wife, Marta, Domingo owns Quitapenas, the best tapas bar in Toledo, if not all of Spain. The first time Claude and I stopped in, for lunch, Domingo told us in a mix of Spanish and English, “This restaurant is like your home—have some drinks, eat here and you will feel at home.” Truer words were never spoken and we not only returned for dinner that night but we changed our train tickets, the ones that had toured Toledo in a taxi without us, to eat yet one more time at Quitapenas with our new friends. “People with síndrome de Down,” said Domingo, “they are just, you know, with us. It’s not, what you say, a big problem to us.” I have not done enough research to qualitatively understand how the Spanish treat their citizens who have Down syndrome, but from my two-week observation, Domingo’s assessment seems accurate.

Launched

After ten days and four cities, Claude and I returned to Madrid and, hands down, our favorite hostal, which is owned and run by Anuncia and Sabino, the Spanish grandparents anyone would want for their own. On the terrace of the fifth floor apartment, which has just five rooms for guests, Anuncia dries the bedding on laundry lines while just inside the family canary is brought in his cage for a few hours each day to sing for the passersby on the plaza below.

“I’ve had a great time, this has been such a good trip, Mama,” said Claude as we walked across the Plaza Mayor on our way back to Anuncia and Sabino’s after my last dinner in Spain.

“Me too. You know, Claude, when we get home and everyone is there and it’s crazy and I get overwhelmed, can you just remember that this is who I really am?”

I packed my stuff, and much of Claude’s, in both my backpack and an extra bag we had purchased for the purpose of making me a pack mule. Having purchased his ticket months before we knew I would be joining him, Claude’s flight home coincided with the first day the National Down Syndrome Congress convention. As a result, I left three days before Claude and, in case he did any more shopping, I took all his extra clothes and textbooks with me. Anuncia and Sabino came to the door to bide me farewell, even though “Claudio” was staying with them another night. Anuncia kissed me once on my left cheek and then many times on my right cheek and I began to cry. Life is a succession of farewells, or “passé bien” in Spanish, and our great trip was over. For two weeks, I felt like an old me I once knew, one who had time to dwell on the creativity found in museum after museum in city after city, a person who could have extended conversations with another adult, some of which lasted for days, a person who didn’t worry much. Yes, I missed my baby, Lyra, though truthfully, I did not think about my four children back in the States all that much, I knew they were fine without me. But return I must and return I did and not only did I leave behind, for a time, this man who is my son, I also left that old me, the carefree student who could wander Europe at will soaking in and sucking down to the marrow all that looks, feels and tastes good.

I was unnecessarily hesitant to ask Claude to go with me to the airport. Unbiden he announced that of course he was going to see me off. I was glad; the Metro ride required two transfers and a confusing 3€ charge just for entering the airport from the Metro station (and again when exiting). With Claude carrying the extra bag filled with his belongings, we walked from the Metro station to the airline’s counter to get my boarding pass, a distance longer than that between most Metro stops as was the walk from the counter to security. He walked through the security queue with me until he could go no further without a ticket and then he waited as I peeled off my layers of luggage, my jacket, my shoes. While doing so, I had a wonderful, if disjointed, conversation with a man and a woman who were behind me in the security line. Claude later told me he thought they were husband and wife, but they were father and daughter. Maria had on an elegant short-sleeved dress with a fitted, cream-colored bodice and a navy skirt. Her silky, dark hair, cut in a longish bob with bangs, moved like a curtain as she darted around like the rest of us to get her belongings into the security bins for the X-ray machine.

“My daughter has Down syndrome,” I said to the man in Spanish.

“Oh, wonderful! Hey, Maria, this woman has a daughter like you!” said the man, also in Spanish.

“My name is Maria,” said the beautiful young woman as she nodded at me and smiled. I learned that Maria, who lives in the Canary Islands with her family, is the second of four children, 27-years-old and, though he needn’t have told me, it was self-evident, the delight of her parents’ lives.

Claude, though a head taller than everyone else waving from behind the security line, could not seem to see me after I had reassembled my clothes and backpack onto my body. I walked back toward security, waving my arm widely, until I caught his attention. With the queue and the security operations between us, we looked at one another and smiled. I blew him a kiss and turned to walk to my gate. I looked back one more time and there he stood, my tall son, calmly waiting for me to disappear. I did not cry.

 

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Part 3: After a Dying Week

I should be packing. I leave in less than 48 hours to join my oldest son, Claude, in Spain for two weeks of backpacking adventures. It usually takes me one to two weeks to write (and re-re-re-re-re-write) an essay before I’ll post it and yet this essay is the third this week that I’ve written, and posted, in a few short hours.

It’s those three babies.

Providence or Coincidence

It’s often mentioned in Down syndrome communities that remarkable coincidences happen with seeming regularity. For many, they seem providential. Under “Religion” on my Facebook profile, I have “rabid agnostic.” Yes, I’m a practicing Buddhist, but who am I to say one religion is more true than another. (As a religious studies major in college I was often asked, especially at parties, which religion was the most true. Truth is in the eye of the believer and followers of all faiths equally believe in what they believe.) One person’s God is another person’s universal plan is another person’s coincidence.

I work at World Market. If you don’t know it, think Pier One with food. I don’t work there often—a closing shift, one or two times a week. Then, for no explained reason, I was scheduled from noon to five the Saturday before Father’s Day. A woman came to my register with Father’s Day cards. One of them pictured little bare feet below the hem of a dress standing atop a man’s pair of shoes, presumably dancing. I took a quick glance inside the card. With every step, I love you more. Happy Father’s Day.

“Oh, my, I think I’m gonna cry,” I said and promptly teared up.

“Oh, you really are!” said the customer.

“I’m sorry. I have a daughter with Down syndrome and a baby I know died yesterday after her second heart surgery. Her family is planning a funeral now, on Father’s Day weekend.”

Yes, I chat with my customers all the time, but this was far beyond anything I typically reveal. Thoughts of Baby Fiona’s family, which had not left me since I had heard the news, did not leave me when I clocked in at work. Baby Fiona, who had a successful second heart surgery, was sent home, only to be rushed back to the hospital two days later. She died five days after her surgery. As I’ve written before, her family started Fiona’s Hope Totes a year ago after Fiona’s first heart surgery, packages for families unexpectedly spending extended stays with a child in the hospital.

“Oh, please don’t apologize,” said the customer who was about my age. She gently continued, “I had a sister with Down syndrome who died when she was only one because, back then, they couldn’t operate on their hearts like they do now. It stayed with my parents for the rest of their lives.” I looked her in the eye and apologized for her family’s loss, briefly holding the moment together before the world rushed back in and I began ringing the rest of her items while cheerfully talking to her like any other customer.

Of all people, I lost my composure with someone who intimately understood what Fiona’s death meant.

Carrying On

Baby Fiona was buried this past Friday. The day before, a member of my Facebook group (moms with babies who have Down syndrome who were born in 2012 and 2013) took a card and a check to Fiona’s family. In a couple of days, we had collectively donated over $800 for Fiona’s Hope Totes.

Baby Annie, She of the Golden Heart, about whom I also wrote in “A Painful Week in the Down Syndrome Community,” was buried yesterday. On her Facebook page her family posted pictures of her tiny, white casket. I first saw a photo of her large, guardianesque father standing near the small, white box that now holds his daughter instead of his strong arms. A photo of her mother, seated in front of the casket with one of Annie’s sisters standing next to her, showed a woman who has been through hell and isn’t sure she will ever leave.

It’s not clear whether Annie was wrongly denied a heart transplant or not. But what is clear is that people with disabilities, including Down syndrome, do not have the same access to transplant lists as people without disabilities. Discrimination against the developmentally disabled is illegal, yes, but it has been clearly established that subtle discrimination greatly affects who gets on organ transplant lists. At the core of the issue is the value of human life. Who decides and why? Is it economics? Is it academics? Is it how many widgets a person can make? What factors are weighed in deciding who gets to live and who doesn’t? Who has a chance to survive and who must die in the arms of his or her devastated family?

What a Week

Anyone need a drink after this week? TGIF. Love ya, ladies. ~a mom on (‘12/’13) Moms with Kids Rockin’ the Extra Chromosome

Gallows humor. This weekend, many of us raised a toast to the deceased babies, their families, and each other.

Meanwhile, another friend has been with her mom in hospice for weeks, posting photos of days when her mom was young and feisty, her adoring father in many of them. A good death is like a good birth; if you are lucky, you are midwifed in and midwifed out. When the mother of my heart, my father’s mother, lay dying, I could not be with her because I lived more than a thousand miles away. But I have been there for others as they lay dying and it is a gift and an honor to be there.

As sad as we are when our elders leave—I miss my grandma daily—it is not the same as losing a child. Losing a child is to completely upturn the natural order of things and never have them completely set right again. My grandma lost her only daughter, shortly after birth, due to the Rh factor. Her lifelong grief so affected me that I refused to have an amniocentesis when I was pregnant with Lyra. My grandma had four boys and I have four boys. If I had done anything to risk it, I might have lost my only daughter just as she lost hers. Magical thinking? Perhaps. Yet I have never regretted my decision.

Uplifting Site

“What can I expect with her cataract surgery?” a new mother asked me a few months ago. Like Lyra, this woman’s daughter had been born with Down syndrome and bilateral cataracts. The baby has the same team of ophthalmologists as Lyra, which means I felt comfortable telling this mother not to worry, though of course she would. Baby H did fine with her eye surgeries, though one eye needed a second surgery to remove scar tissue. Earlier this year I had been in a marketing group in which all participants had family members who are developmentally disabled. One mom explained that her daughter had once worked at a mainstream job but now worked at a county program, which was better for her daughter socially because she enjoyed being in a program where the other people were like her. Remembering that, I decided immediately upon meeting Baby H’s mom that Baby H was destined to become Lyra’s best friend because the girls have so much in common.

Baby H was scheduled for heart surgery in July. After nearly two years of living with a baby with Down syndrome, a population of which forty percent are born with congenital heart defects, and I’m used to other babies going in for heart surgery. Open heart surgery seems strangely routine, no matter whether it’s a hole in the heart or something else. Ultimately, however, Baby H couldn’t wait until July. She was hospitalized on Mother’s Day and declared too weak for her to undergo the surgery she needed to fix why she was so sick. Weeks passed and Baby H remained in Akron Children’s Hospital PICU. I asked a friend who told me after last winter’s hospitalization of my son, Jules, that her mom had a direct line to God, to please have her mom pray for Baby H.

Two weeks ago, Baby H was strong enough for surgery. The surgery took hours upon hours and when done, her heart was too swollen for them to suture her chest. They closed her up a few days later. This week, she was finally extubated and her family has held her in their laps for the first time in over a month.

I went to Baby H’s Facebook page this week to lift my spirits.

Gratitude

When we learned after Lyra was born that she has Down syndrome and cataracts, Max and I told each other, Well, at least neither is life threatening. We thought we knew what we meant and we did. Intellectually. These past ten days have broken us down. We feel connected to these children with Down syndrome, and their families, who did not make it and both of us have cried repeatedly, suddenly and at length. Lately when I look at Lyra, all I see is her her energy, pink color and robust health.

Our hearts ache for the families of Ryder, Fiona and Annie Golden Heart (she’ll never be just Annie to us). It’s not the natural order of things to bury a child and I have no doubt that these parents, like the parents of my customer at World Market, will carry their children with them all of their days. The siblings too.

Fully Human

Now what happens? Here I’ve been working on a book proposal about the need for a civil rights movement for people with Down syndrome and I had no idea that there was undeniable discrimination with regards to who is placed on the transplant lists. It just didn’t occur to me. Now learned, I will not forget. I’ll carry it with me all of my days and do what I can to end this discrimination by continuing to write about what it is we can expect from people with Down syndrome, which is far more than most people realize. Educate those who do not know what it really means to have Down syndrome, especially those in the medical community, many of whom are woefully and shockingly unaware of the facts and yet often have the power, both positively and negatively, to make a difference. Advocate for people with Down syndrome to lead full and productive lives. Defy discrimination and stereotypes with each and every success story, exploding false and outdated conceptions of Down syndrome. Educate. Advocate. Defy.

I will do it. The mamas at my Facebook group are doing it. The folks and families at the Upside of Downs are doing it. Rob and Ellen Snow at Stand Up for Downs are doing it. The Down Syndrome Diagnosis Network is doing it. Numerous large national organizations, like the National Down Syndrome Congress and the National Down Syndrome Society, are doing it. Please join us in ending discrimination against the developmentally disabled. If I haven’t convinced you yet, stay tuned. I’m on a mission.

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Part 2: Defining and Defying: Discrimination of the Developmentally Disabled

Yesterday, I wrote about three babies in our Down syndrome community, all the same age as our daughter, Lyra, who died in the same week. One of the deaths sparked many national discussions on the issue of organ transplantation and whether or not people with disabilities are equitably placed on transplant lists. While touching on the issues of soft bigotry, I want to follow up and dig a little deeper on the issue of discrimination against the developmentally disabled. Though it is illegal to discriminate against a person with a developmental disability, it is undeniable that discrimination still occurs, which should come as no surprise. Ask any person of color if the illegality of racial discrimination has provided him or her with a life of equal treatment.

Discriminating against a specified group of people is to deny that they are fully human. To have those who make important decisions—medical professionals, law enforcement officials, teachers, employers, politicians, to name a few—deem a population as lesser human inevitably results in unequal access to medical care, justice, education, jobs and protection under the law as provided to those groups who are considered fully human.

A friend reminded me this morning of the American civil rights heroine, Ruby Bridges:

Ruby Bridges, a brave little African-American girl, entered an all-white school on November 14, 1960.

As soon as Bridges entered the school, white parents pulled their own children out; teachers refused to teach while a black child was enrolled.

Only one person agreed to teach Ruby and that was Barbara Henry, from Boston, Massachusetts, and for over a year Mrs. Henry taught her alone, “as if she were teaching a whole class.”

Every morning, as Bridges walked to school, one woman would threaten to poison her; because of this, the U.S. Marshals dispatched by President Eisenhower, who were overseeing her safety, only allowed Ruby to eat food that she brought from home.

Another woman at the school put a black baby doll in a wooden coffin and protested with it outside the school, a sight that Bridges said “scared me more than the nasty things people screamed at us.”

Though it was over 50 years ago, the openly vicious hatred of a little girl simply for the color of her skin doesn’t seem so long ago (perhaps because I was born only five years later). Yet today, who would question that this was unmitigated racism or that clearly Ruby was not seen as an equal human being in the eyes of many of the white citizens of her town? And  while there are those who still believe that black children should not attend schools with white children, they are not likely to stand screaming about it on the curbside with casketed effigies of black children.

No, today discrimination is subtle, which, in some ways makes it more pernicious than what Ruby Bridges faced. For one thing, it’s harder to identify and easier for the perpetrators of discrimination to genuinely believe they are not biased against a particular group of people. Such is clearly the case with developmentally disabled Americans in need of an organ transplant. As pointed out in this article (published in 2004), in light of the Americans with Disabilities Act becoming law in 1990, developmentally disabled Americans have “moved from automatic exclusion to selective inclusion” in organ transplantation, often meeting many barriers along the way that organ transplant candidates without developmental disabilities do not face. The methods are so subtle as to be unrecognizable even by the perpetrators themselves:

There is certainly a sense…that these negative attitudes often have as much to do with not being as energetic in treating people with disabilities as it does with being actively resistant to treating them. People have been and are the victims of both benign neglect and active denial of treatment. Many respondents have been told that surgery or transplantation was just not offered to people with disabilities.

So why are some medical professionals less energetic in treating people with developmental disabilities? In many articles I have read, patients and their families report being told by their medical professionals that persons with developmental disabilities are not capable of following the intensive post-transplant care regiments or that they do not physically handle transplant surgery as well as the typical population, yet the very opposite is true.

Maybe it is obvious, but the question needs to be asked: Why are people with developmental disabilities discriminated against, which by definition means that significant (and often powerful) members of society do not see the developmentally disabled as fully human? Personally, I believe exaggerated value is placed upon one component of being fully human—cognitive ability. That people with greater levels of intelligence are considered more valuable to society and their lives worth saving more so than the lives of the developmentally disabled. Never mind that the range of cognitive abilities in people with Down syndrome is wide, never mind that any threshold of intelligence is never a predictor of a productive life. And by productive, I mean many things beyond economics, for while it is true that more and more adults with Down syndrome are entering the workforce, there is immeasurable value in how one person affects the lives of so many others.

Which brings me back to the three little ones who died in the past seven days. Their lives have touched countless people. Perhaps those of us who have had intense discussions about organ transplant policies this week will carry on the work of defeating the discrimination against those with developmental disabilities so that instead of “selective inclusion” there will be equal access to organ transplants. I sure hope so.

However, if discrimination were removed entirely from the scene, people with disabilities would still have a problem getting life saving transplants because there are not enough organs.

SIGN UP TO BE AN ORGAN DONOR RIGHT AFTER YOU FINISH THIS ESSAY.

 

 

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Part 1: A Painful Week in the Down Syndrome Community

Real Community, Virtually

When Lyra was four months old, I met a woman at a meeting for new parents of children with Down syndrome. A few weeks later, she sent me an invitation to join a Facebook group titled “(’12/’13) Moms with Kids Rockin’ the Extra Chromosome.” I remember thinking the title was a bit cumbersome, but I don’t recall what I expected when I clicked the “join” button. Not much I suspect for, at first, I hardly looked at or commented on the page. I was busy with my family, my baby and her diagnoses of Down syndrome and bi-lateral cataracts and all the adjustments that go along with any new baby. Today, I have a list of all I did not know or anticipate:

  • I thought the group was local, but it is not. Though most members are Americans, the group has families from all over the world.
  • I had not anticipated the value of an immediate and large group of moms whose kids with Down syndrome were the same age as my child and, therefore, will go through the same stages of development at roughly the same times as my child because…
  • It did not occur to me at first that this would be a lifelong group, but once it did I was floored that something like it hadn’t been created before and reminded that, for all its distractions, the Internet’s impact can be profoundly positive.
  • I could not have imagined how close I would become with some of the other moms. Back in the old days, before Facebook, I never participated in chat rooms. Even today, I do not belong to many Facebook groups. Yet there are women I have only met through this group whom I regularly turn to for input. Recently, one of the moms with whom I corresponded almost daily has largely dropped off due to a difficult pregnancy. I miss her as much as if I had a best friend living next door who moved to another state.
  • I did not know how much I could cherish the children who give us reason to have a Facebook group nor how invested I would feel in their developmental milestones. Videos of crawling, walking, talking, straw-sipping babies have me cheering in my seat at my computer as if I was watching the Chicago Cubs win the World Series.
  • I certainly did not expect my heart to be broken.

Then one week, in June of 2014, three babies died. Baby Fiona died after complications from her second heart surgery. Baby Ryder was fine when he went to bed, had a fever and rash in the morning and was gone by two in the afternoon. And Baby Annie. Baby Annie was not given a heart transplant, for reasons that remain unclear, and her family—mother, father, and two older sisters—have watched her progressively become weaker and bluer. She died early this morning.

Bad things happen all over the world each and every day and it is not humanly possible to feel the appropriate amount of grief for each loss. The deaths of these three babies hits home, however, and I do not recall a week in which I have cried so much and so hard for people I have never met, other than on Facebook.

“Why so many all at once?” my 13-year-old son, Jules, asked me as I wept over Baby Annie’s last photos. I told him I don’t know, but if a heart cannot be fixed, perhaps two years is a typical life expectancy.

The Hearts of Our Children

Forty percent of babies born with Down syndrome have some form of congenital heart disease. Some are easy fixes such as small holes that today can be surgically patched or sometimes even close on their own. Others are severe and may be beyond surgical repair, in which case the only option for survival is a heart transplant.

Baby Annie’s Facebook page stated the only thing that would save Annie’s life was a heart transplant but because she had Down syndrome, she was not placed on the donor list. The outrage of families whose children have DS has been potent. A petition appeared on Change.org asking President Obama to outlaw transplant discrimination for those who have developmental disabilities.

A day or two later, the National Down Syndrome Congress posted the following:

In 1996, Sandra Jensen, a 34-year-old woman with Down syndrome, needed a heart-lung transplant to survive. As far as anyone knew, she would be the first patient with Down syndrome to receive an organ transplant, and initially she was denied. Along with her doctor and her family, Sandra had to fight for the right to receive a transplant. The case gained nationwide attention, arguing that Down syndrome should not be enough to automatically deny a patient a transplant. Sandra won. In January, 1996, she received the requested transplant at Stanford University Medical Center. Her case was seen as a test of whether hospitals could use blanket categories to deny treatment. Since the passage of the Americans with Disabilities Act and the establishment of related federal regulations, discrimination against people with disabilities in medical treatment is prohibited.

Today, there is an internet petition (change.org) asking the President of the United States, “Why are children with Down syndrome not considered for organ transplants?” While we love grass roots advocacy, we want to set the record straight by saying it is not true that people with Down syndrome are automatically denied life saving treatment based on their diagnosis of Down syndrome today.

Making decisions around organ transplantation is a terribly complicated process, and the supply of organs for donation is quite limited. People are denied transplants for a variety of reasons. A patient who feels he is being denied solely on the basis of Down syndrome needs to appeal through the hospital system.

Make today the day you sign up to be an organ donor, and help more people receive the organs they desperately need.

Yes, organ transplantation is a complicated process with many factors necessarily taken into consideration. Yet there seems to be ample evidence and agreement that “soft” bigotry exists when it comes to placing a person with a developmental disability on a transplant list. Anecdotally, more than one mom on my Facebook group has had a cardiologist tell her that should all other options fail, a child with DS would not make it on the heart transplant list because a person with a developmental disability cannot be expected to follow through with the extensive post-operative care. (Hello? A two-year-old with or without Down syndrome is not the one responsible for the post-operative care, the caregivers are.) Yes, it is illegal to discriminate but at the end of the day the facts overwhelmingly point to inconsistencies in how doctors decide who to place on the donor lists and given the high proportion of congenital heart defects in children with DS, a disproportionately low number of people with DS make it onto the lists.

When we attended last summer’s NDSC convention, one of the biggest takeaways for me was how so many medical professionals in the United States have arcane and patently wrong notions about what it means to have Down syndrome. In the days after the convention I wrote “Fully Human and in Need of a Civil Rights Movement,” highlighting, in part, the existing discrimination against the developmentally disabled. It has been nearly a year since we attended our first NDSC convention and I have only become more aware and, yes, outraged, at the discrimination against people with developmental disabilities that continues largely unquestioned.

Max, whose professional paths, first as an English professor and later as a lawyer, have made him a stellar researcher, was on the computer until very late last night, trying to make sense of the organ transplant list issues. When he came to bed, he said, “Baby Annie will be the Rosa Parks on this issue, Holly; she will not die in vain.” I hope he is right and that the numerous conversations begun during her prolonged suffering and now, after her death, have infused momentum into individuals, groups, and national organizations to end disability bias in organ transplants.

There are so many details about Baby Annie’s medical journey that are unknown to the public. I read that a national Down syndrome organization was ready to advocate for her to be put on the list until they learned of further medical complications in her case. However, the fact that a national Down syndrome organization has as part of its mission the advocacy of organ transplants for people with DS underscores that soft bigotry is a pervasive and ongoing problem, which kills our children.

What We Can Do

Awareness is the first step to solving any problem. Please share this post, the posts of others and, certainly the articles linked here. And, as always, speak out to your politicians, many of whom may not even be aware a problem exists, just as I was unaware until these sweet babies left us.

Baby Fiona’s family started a wonderful non-profit after one of Fiona’s earlier hospitalizations. Fiona’s Hope Totes are care packages for families experiencing an unexpectedly extended hospital stay with a sick child. As of now, I believe the program is just in Minneapolis-St. Paul, Minnesota where Fiona lived with her family. I can easily imagine it becoming a national non-profit. Please consider donating to this charity to honor Fiona and help other families as they face medical odysseys.

Baby Annie was in hospice care for the last several weeks, surrounded by her family, who needless to say, did not leave her side. A fundraiser has been established to help her family. Please consider contributing to this family who has loved so hard and suffered so deeply.

And, finally, please, please, please become an organ donor today, if you have not already.

(Kimchilatkes I miss your sagacious ability to tease through complicated issues now more than ever. Your voice is sorely missed and will return, I hope, very soon.)

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Lyra’s Latest: In Need of the Next Map

Our home has been temporarily rearranged. The water bowl for the dogs and cats is now commonly found on the kitchen counter while the bathroom trash cans currently reside atop the closed lids of the toilets. A paper grocery bag containing paper recycling was handily located in the kitchen. Lately it can be found a few feet away in a lower level vestibule, which is inaccessible to the littlest resident of our home who knows how to climb up, but not down, stairs. She mastered stair ascension when she discovered the bin of bath toys hidden in the empty tub, alongside of which is a single step.

Lyra reorganizesLyra, our curious baby, is on the move and eager to exercise her self-determined mission: find all containers, empty them of their contents and, before spreading said contents far and wide, taste as many of them as possible. Hence, the reorganization of our home, something I have had to do four times before when each of my boys were curious and accomplished crawlers. She may be older than they were at this stage, but she doesn’t look it. Furthermore, her mind works just as theirs did—once a container full of clean diapers or dirty trash, toys or recycling (all equally appealing it seems), has been discovered, the site is frequently revisited.

From my earliest conception of Whoopsie Piggle, I planned to write about our entire family and not just our youngest child, Lyra, and her diagnosis of Down syndrome because her diagnosis neither defines who she is as a person nor who we are as a family. Yes, her diagnosis helps us to understand her needs in order to better meet them, just as the diagnoses of dyslexia helped us to meet the needs of her older brothers, Claude and Jules. In fact, in the past few months it has been harder to write essays isolating the latest in Lyra’s life. On occasion we have bigger issues to address, but most days are entirely mundane and typical of any household with a crawling baby. Lyra is no longer brand new. She exhibits a fully formed personality with many things that make her giggle (her brother Leif, getting tossed in the air, singing to the pretty baby in the mirror, kisses on her neck) and others that make her howl (diaper changes, bedtime, hunger, blood draws, contact lens changes). Lyra is an integrated and integral member of our family. Certainly she has made great developmental strides thus far this year and yet this fact makes her seem all the more typical and her accomplishments less, not more, noteworthy.

A Babyhood of Appointments

The first few years of life for a child with Down syndrome often require regular interventions in order to acquire well-developed gross motor skills (sitting up, crawling, walking, running) and fine motor skills (i.e., purposeful hand skills such as self-feeding), and speech. The common culprit underlying these delays is not necessarily a cognitive issue, but hypotonia, or low muscle tone, which affects almost all babies with Down syndrome. In talking with parents of older children with DS, including adult children, many recall the constant work in the early years of their child’s life. Since she was three months old, Lyra has had regular therapies (speech, physical and occupational). For the last six months, she has gone twice a month to Akron Children’s Hospital for what they call an “infant block” in which all three of her therapies are conducted back-to-back by a team of therapists who discuss and coordinate her care.

When older children and adults receive therapies, as many people do after an injury or medical event, the therapist trains the individual. But when the client is a baby, the therapists train the caregivers more than the client. Yes, Lyra recognizes her therapists and knows her way around the room where they conduct her appointments. But to Lyra therapy must seem like a play date. The occupational therapist blows soap bubbles for Lyra to pop with her forefinger, the speech therapist looks into a mirror with Lyra as together they sing songs and practice sounds, and the physical therapist pulls out toys that engage Lyra so deeply she doesn’t notice she had to climb a small hill or stand up on her own to reach whatever bright, noisy (and oh-so-non-Waldorf) plaything the therapist uses as bait. And then we try to replicate it all at home.

Meanwhile, back at home, Lyra is also visited by her Summit County Developmental Disability Board caseworker and her Cleveland Sight Center caseworker, both of whom observe her progress and also make recommendations, generally taking into account our home environment. For example, instead of buying an expensive Little Tikes climbing wall, as Lyra’s pediatrician had urged, they helped me arrange the tumbling mat we own over some pillows, which Lyra now repeatedly climbs up and over.

Sometimes the folks coming to our home tell us the very same thing I hear at the hospital. Other times, they do not. For example, after Army-crawling for three months, Lyra began crawling on her hands and knees and soon thereafter she started what we call “bear-walking,” or walking on her hands and feet. And even though it has given Lyra a speed and facility at dumping out trash, recycling, toys and whatever else she can find, we have been rooting her on. It’s thrilling to see her motor around and the hospital’s physical therapist agreed. Her caseworkers were less excited. Sure, it’s great that she’s getting stronger and moving. But her back legs were being held too far apart, like an upside down wide V, putting pressure on her hip sockets. Along with hypotonia, people with Down syndrome commonly have ligament laxity and by stressing the exterior of her hip sockets, the caseworkers explained, Lyra can wear down her ligaments thereby opening the door for a host of other issues, including chronic pain.

The solution? Hip Helpers. We used these many months ago, when Lyra was learning to sit up on her own, but they were all but moth-balled since Lyra took off Army-crawling in January. Like a pair of tight spandex shorts, Lyra’s daycare provider and I both refer to them as Lyra’s “Spanx,” the modern day equivalent of a girdle. Hugo calls them Lyra’s “mermaid thingies” as they keep her thighs together like a big fish tail. Under her dresses and skirts, Lyra’s Hip Helpers look like baby shorts, stylish even. With them on, however, she cannot zip around as easily. For now, that is. The goal is to retrain Lyra’s legs to move correctly, and not splayed out, as she ambulates, something she is highly motivated to do (so many trash/toy/recycling bins, so little time).

For two weeks, Lyra wore her Hip Helpers all day, every day. Then we had our next Infant Block appointment at the hospital where the physical therapist pointed out that Lyra locked her knees more when wearing the Hip Helpers. Also important, the hospital therapist questioned making Lyra struggle with a skill she had just acquired (bear crawling). And so, we agreed upon the middle path (or the Buddhist take on pretty much everything)–not too much, not too little and, as of this week, our busy monkey spends about half her days in her Hip Helpers.

Speaking with a Star

I just saw an adult with DS at the movie theater and I wanted to run up and hug him. It was like a celebrity sighting LOL. Is that just me?

~A post on a Facebook group for mothers with babies born in 2012 and 2013 and diagnosed with Down syndrome.

Comedian Rob Snow and his wife, Ellen, who live in Northeast Ohio, founded the non-profit organization, Stand Up For Downs. In his routine titled, “We Need a Sign,” Snow describes a walk he took shortly after his son Henry was born with Down syndrome. When Snow saw a family of children running and playing in their yard, including a girl with Down syndrome, he was momentarily riveted as he watched the girl doing and being everything any other child her age would do or be. When the children ran off, Snow noticed a woman, presumably the girl’s mother, looking at him with irritation, if not outright anger. She thought he was a rude gawker. The moment was awkward and Snow quickly walked away without explaining that he had a newborn son with Down syndrome. We need a sign to let one another know, “Yeah, me too, my child has Down syndrome.”

I laughed throughout most of Snow’s routine at a new parent event sponsored by our local support group when Lyra was only a couple of months old. But as he described staring at the girl and not finding a way to talk with her mother, color rose up my neck and my ears became hot with embarrassment. When Lyra was perhaps a week or two old, we had taken her and the boys to Five Guys Burgers for lunch. Asleep in her car seat, Jules sat with Lyra at a table while the rest of us got in line. Behind us, but separated by another group of people, was a family that reverse-mirrored our own—instead of four boys and a baby girl, they had several daughters and little son, who appeared to be about Leif’s age, which was two-and-a-half at the time. Leif and the little boy pushed the red cordon, hung between posts to form an orderly queue at the restaurant, with their hands to make it swing back and forth. The two little boys were twin-like–they stood at the same height, had equally white-blonde hair, and deep blue eyes. But the other little boy’s eyes had the characteristic shape associated with Down syndrome. Staring does not describe my behavior. I scrutinized the child, who had on a red zip-up hoodie from the Gap and blue jeans, an outfit nearly identical to Leif’s, and only tore my eyes away to shyly smile at the child’s father, a big man with a beard who smiled in return. I wanted desperately to tell him and his wife that my new baby had been diagnosed with Down syndrome but I was uncharacteristically struck speechless.

In the first few months after Lyra was born and we learned she has Down syndrome, I regularly wondered how having an extra chromosome would effect Lyra. Would she talk? Would I be able to understand her? Would she develop like other children or would she be a perpetual infant? I did not know and nobody could tell us. Sighting an older child, even one who was only two or three years old, when Lyra’s life had just begun, loosened my mind’s grip on my worst fears by showing me: This too is possible, a child more alike than different.

Last weekend, we were seated in the waiting room of the lab at Akron Children’s Hospital where we take Lyra quarterly to have her blood drawn for a thyroid level check. A woman and teenaged girl with Down syndrome walked in and I (rudely) listened to the mother give her daughter’s date of birth to the receptionist. The girl had recently turned fourteen, which makes her only a couple of months older than our son Jules. With Lyra in my lap, the mother and daughter began talking to us before they sat down.

“She loves babies,” said the mother.

“Yes, I do!” said the daughter.

When the phlebotomist called for Lyra, Max took her back while I stayed and talked with the two women, and a pattern I’ve now seen many times emerged: the daughter spoke and then the mother repeated and/or clarified what her daughter said.

Me: I love your nail polish.

Girl: My mom did my toes, but I did my hands.

Mom: I did her feet, but she did her fingers, well, most of them I see. She’s so             independent; she tells me all the time, I’ll do it myself!

Me: What grade are you in?

Girl: Seventh grade. I love school, I’m a cheerleader.

Mom: She’s in the seventh grade; it’s a great school. They have a cheerleading squad called the “Sparkles.”

Girl: Yes, I’m a cheerleader.

Mom: She’s like a rock star at her school, seriously.

We stopped talking when Max brought out a sobbing Lyra with both elbows wrapped in Day-Glo pink cling tape, used these days instead of Band-aids to hold a gauze compress at the site of the blood draw. They had not been able to get a sample of Lyra’s blood and Max described a scene I’ve witnessed all too often in which the phlebotomist sticks Lyra’s arm with the needle but cannot find the vein and begins grinding the needle around in her arm in an attempt to locate the vein. We were told to bring her back on another day for another round of this torture.

As I begin comfort-nursing Lyra, the girl I had been talking with was called back for her blood draw and in what seems like less than a minute, she’s back out, tear-free.

“Wow, that was fast!” I told her.

“Yeah, I’m a big girl,” she said and Max slapped her a high-five.

Right Before Our Eyes—What We Did Not Know

“20/270, that eye is legally blind and 20/180, that eye is what they call ‘legally visually impaired’ but any school district would categorize her as legally blind,” said Lyra’s vision specialist.

“That’s with her contact lenses in?”

“Oh, yes. Without the contacts—well, she has no lenses inside her eyes, as you know, and without the contacts, it would be much worse.”

“But how can this be? Every time we see the ophthalmologist, he tells us her eyes look great and that he couldn’t be more pleased. And she sees us, the things she plays with. I mean, she certainly moves from one side of the kitchen to the other to get to the bag of paper recycling. Is it just that she remembers that it’s there?”

“Well, certainly her memory is helping play a role in how she uses her vision. This is a very non-medical explanation, but imagine what you see at 270 feet, she would need to be only 20 feet away to see the same thing. And I like to tell my parents that it is like a big funnel. Right now, Lyra is looking at the big world around her, but as she begins to focus on holding a crayon, writing, reading—really narrowing her field of vision for specific tasks, her visual limitations will become more apparent.”

I paused and thought of something I had long noticed: when Lyra is in my arms, her eyes are wide open, big and blue and often staring into my own. But when she is more than a couple feet away, she squints. I have a hard time capturing her in photos without her squinting, but usually when I am taking her picture, I am more than a couple of feet away. Just as when I try to read the clock in the morning without first putting on my glasses, Lyra squints in an effort to see more clearly.

“So what I want from you now,” I said, my voice becoming husky as I grabbed a tissue to mop the tears suddenly springing out from behind my glasses, “is for you to look into your crystal ball. Like, does this mean she’ll walk with a cane?”

“Well, first of all, I think her left eye is already better than when this last test was taken. And we have until she is about age five or six for her eyes to improve. Now when she starts walking, she’ll probably have glasses as well as her contacts because she’ll need the glasses to give her the ability to see in the distance, like a bifocal.”

“Okay.”

“But it’s good she’s crawling for so long because she is learning where all the bumps are in your floors.”

“Wow, so I guess we can never move from this house.”

“Nope,” said the vision specialist and smiling playfully she added, “Nor can you ever move the furniture.”

“So what about when she’s out? She will need a cane then?” The notion of Lyra walking with a cane suddenly became emblematic of everything I feared about her being blind: With just a glance, anyone would recognize her two disabilities for which she may be unfairly assessed as not capable of any number of things she deserves, including employment, housing, and civility.

“Well, I can’t say for sure, but I don’t think so. However, we will teach her techniques, such as sliding the outside of her hand, with her fingers cupped so they don’t get caught behind things like fire extinguishers, alongside the wall of a room she’s unfamiliar with so she’ll not run into things.”

“Ahh,” I say as it all starts to click.

All We Can Handle

I’ve long known that Lyra’s ophthalmologist does not like to talk about Lyra’s vision, or about what procedures, or outcomes to anticipate. I know this because he’s told me as much. I chalk it up to needing to wait and see how Lyra develops. If she does great with contact lenses, stick with contacts and avoid more surgery. At her strabismus surgeries last summer, her ophthalmologist told us that as she got older he would be able to put her in different, less bulbous, contact lenses. Her vision was corrected for the world of a baby, roughly up to two feet away, but he said that he’d change her correction as she got older and began walking.

Because of these conversations, we believed all along that Lyra was seeing, well normally, like most any other baby. Instead she’s legally blind. I only worried about it when another mother wrote to me, a woman I do not know but who recently was put in touch with me by a mutual friend. This woman’s son, who is a few months younger than Lyra, was also born with bilateral cataracts and now sees at 20/60 and 20/90 and she was worried about what his future would be like. I wrote and told this mother what we are doing for Lyra but never heard from her again and I wonder if it isn’t because Lyra’s vision is substantially worse than her son’s vision. Her letter inspired me to call Lyra’s vision specialist and ask her to sit down and tell me what a vision acuity score of 20/180 and 20/270 mean for Lyra long term.

I imagine had the ophthalmologist told me in detail at Lyra’s first surgeries, more than a year and a half ago, what we would be facing when she was older, it would have overwhelmed me or, at the least, been so much information on top of the information we needed in the immediate moment, that I would have forgotten much of what he said. To be honest, perhaps he did tell us much of what we now need to consider and it did slip into the cracks of my overloaded brain.

Climbing mountains, no matter how high, happens one step at a time.

Normal Is As Normal Does

Lyra will turn two in August. She talks, uses sign language, plays with her brothers and her daycare friends, sings songs, makes animal sounds on her own and when asked, crawls, “sorts” laundry, pats my back just as I pat hers, just as all my babies often patted my back when held up to my shoulder because that is what I do to them. Lyra’s daycare provider could not love Lyra more if she were her biological niece. Everyday of her life, everywhere she goes, Lyra is encouraged to move her body in ways that will protect her health long-term, and avoid issues such as displaced hips and pronated feet.

We did not anticipate how musical Lyra would be when we gave her a name related to the word “lyrical.” Perhaps the name was providentially chosen for nothing pleases Lyra more than singing. Much of her speech has developed through song, she is calmed by song when sad and I even use it as part of my arsenal to distract her when need be. Placing her in front of the mirror on my dresser, Lyra and I sing together while pulling her hair back into a ponytail, something she otherwise resists.

For several weeks, Lyra’s team, including everyone in the family, her therapists and her daycare provider have talked about how it’s coming together beautifully for Lyra and all the progress she has made and continues to make. At Akron Children’s Hospital, the therapists tell me, each and every visit, what a thrill it is for them to see what new things Lyra has learned since her previous visit.

Learning Lyra is legally blind was not devastating, but to use a cliché, I felt the wind drop from the sails of all that wonderful momentum in Lyra’s development. This too? Isn’t Down syndrome enough? But that is me feeling sorry mostly for me and not Lyra who, after all, only knows what she knows. For her, life is full of loving people and good times. She’s as happy as a baby should be and not moping about because she has to work harder to crawl and can’t see as well as anyone else she knows. Again, for now at least, she isn’t aware of any differences. Who knows how she’ll feel one day when she does realize how her life is different? My personal experience now having met so many people of all ages with Down syndrome, as well as the scientific research, gives me every reason to believe Lyra will be happy with who she is.

So we breathe in, breathe out and pick up the phone. First call: The ophthalmologist to learn what we can do to improve Lyra’s vision before she turns five years old. Second call: The vision specialist to learn what compensatory techniques Lyra can begin learning now.

And, as with all things, our journey continues. One step at a time.

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About (Winter) Time

IMG_0224The Oxford Dictionaries’ 2013 word of the year was “selfie,” which describes the now ubiquitous photos taken with one of the subject’s arms outstretched, not unlike a zombie’s, as he or she snaps his or her own photo with a cell phone camera. Selfie is a word I had not heard of before last year, but by last fall even baby Lyra was getting in on the action (with a little help from her thirteen-year-old brother).

While the year is only little more than a quarter underway, I nominate the term “polar vortex” for 2014. Sure, it’s two words that together make a phrase, but here in Ohio, it has meant only one thing—the longest and coldest winter anyone can recall. We Ohioans are used to “arctic blasts” and “dips in the Canadian jet stream” along with an occasional nor’easter stretching this far west. And sure, 1978 had more snow, but never was there a year in my memory when week after week the mercury struggled anemically to stay above zero degrees Fahrenheit. All blamed on repeated visits from polar vortices, which until 2014, were unknown to me and most people I know. As a result, my kids did not have a full five-day week of school from mid-December, when they were released for winter break, until late March. The Ohio legislature recently passed an emergency bill giving the state’s school districts four extra severe weather days on top of the five days allowed each year. Even with those nine freebie days, kids in Akron will be in classes deeper into June than had been on the school calendars last fall. This winter, which only began loosening its grip on March 31st (once again validating the aphorism I tell my children every spring: “March comes in like a lion and exits like a lamb”), seemed to mirror life around here. Difficult, yes, but when said and done, everyone was fine, if not a bit stronger and maybe even wiser.

Oh, What a January

Every December, no matter how festive, I look forward to the following month when the holiday clutter has been packed away for another year, the kids have returned to school and people mostly keep their own company. January, when the snow-muffled landscape echoes the quietude of the house, is a month in which I often make great progress on writing and submitting. This year, the first week after winter break, school was cancelled twice (on my writing days) due to the extreme cold. This meant, unlike a snow day, I couldn’t even send the kids out to sled. The following week, Jules came home early from school one day, became progressively sicker and, on the third Monday of the month, set sail on a medical odyssey. We each, in this reconstituted family, were brought to our knees as we faced the possibility of losing a son, a brother, a grandson. Jules himself found his head forced into the gaping mouth of mortality and he saw, with no small amount of terror, that time is precious and life is not as secure as he once had believed. Then came the fourth week of January, when we were dazed at our great good fortune when learning Jules had neither an acute nor a chronic illness and was as healthy, if not skinnier, as ever. We traveled from fear to awareness to gratitude, all in one harrowing week.

February or When the Poop Flew…All Over

The day after Jules was released from the hospital, issues began with my rental house, which resulted in my first eviction. Almost daily, Tenant had an ever-escalating series of demands all ending with the words “or I can’t live here any longer.” Ultimately, I called Tenant’s bluff and by mid-February Tenant had relocated elsewhere. At the end of the February, when we conducted the inspection related to Tenant’s deposit, we found cat feces in places I had not imagined I would ever see cat feces. On windows, on windowsills and, oh, look below, the side yard is covered with cat feces and litter flung from Tenant’s second story bedroom window. On the bright side, feces and clay litter can be cleaned up and with all the human and feline funk now gone, the house looks better than ever (with some fresh paint and floor work and landscaping), and I, like anyone who has had rental property for a few years, now have a “you won’t believe this” story along with a “no pets” policy.

Ongoing and Carrying On:

1) Court

While Max is the love of my life, my ex-husband is perhaps my soul mate. How can that be? Quite simply my relationship with my ex-husband gives me repeated opportunities to face myself honestly, take stock and put on my big-girl britches. Last September, with three days notice, my ex-husband moved to the Middle East and I don’t mean the middle of the U.S. Eastern Seaboard, I mean to a country where the economy is sustained by oil revenues. His move made undeniable what has long been the case: the boys live with me 100% of the time. In order to have child support recalculated accordingly (it is currently based upon him having the boys 50% of the time and paying for 50% of their living expenses), it was necessary for me to petition the Court.

In December, I appealed to the Court pro se, or on my own without an attorney. After all, it’s pretty cut and dried—we live on one side of the planet, he lives on the other. His income has increased, as has mine, so why not put all our numbers on the table? He is free to call the children as often as he likes, see them frequently when he is in the country, should he choose to do so and, again, should he suddenly become inclined, contribute in the raising of the children. Yet it came as no surprise that my ex-husband hired an attorney and we have had two pre-trial (yes, trial) meetings this year and hearing dates scheduled in May, July and August. As a result, thus far I have spent all of 2014 in something like a crash course on filing motions, protective orders and responding to those filed by Defendant’s attorney. As with the divorce, which took over three years, it is as though my ex-husband is careening down a bobsled course. The outcome is all but certain, yet he has strapped himself in and will ride to what is, for him, a very expensive finish line. And as I watch him, I feel the residual tickles of an unhealthy habit to which I held fast for nearly fifteen years: that of trying to save him from himself, when in truth, I only hurt both of us in the process. And in this observation of my ex-husband and my emotions, I see who we were, and who I have become, and I am washed over with relief that I got out.

2) Work

Send me more court reporters!” I told my biggest client at the end of 2013 and they did. I am proofreading all the transcripts for two court reporters and most of them for a third reporter, which means I am reading between 750-1000 pages each week. It’s good! I have work! It pays! But the work, along with the children chronically home (true confession: I could never have been a homeschooler, uh-uh, nope, no way), the rental house issues and the court case have all co-conspired to erode much of my precious time to write, submit and, yes, yes, yes, work on my book proposal.

A writer friend of mine recently posted a quote on Facebook by another writer whom I also know: By far, the thing that prevents a writer from becoming the writer they want to be is that they don’t write. […] Not writing, your most common way to not become a writer. Not finishing. Not revising what you write.

I know this with all of my being or, as another writer recently posted, “Even when I’m not writing, I’m thinking of writing.” I feel the need to write daily so as to stave off the pain of not writing. Years ago, when I began my MFA coursework, a classmate read a quote from author Pat Conroy extolling the importance calling oneself a writer, but only if one is writing. Big break or not, I am a writer because I am always writing but this abundant life challenges my ability to sit and write on the computer, which is the real writing. The writing in my head is often where beginnings are found and works in progress are developed. However, essays only arise with fully formed bodies when my fingers are on the keyboard. Along with mothering, this is the work of my life. Everything else just pays the bills, but they must be paid.

3) Beautiful Girl

“We all just love it when Lyra comes in, not just because she’s so sweet but also because she always makes progress,” said Lyra’s speech therapist on the second Tuesday of April. Every other week, Lyra does an infant block of speech, occupational and physical therapies. Lyra missed her last visit in March because, for the entire week, our house was a vomitorium in which nobody was spared. Yeah, that week was a scratch for writing too. Therefore, Lyra’s therapists went a month without seeing her and, when they finally did, they could not have been more encouraging about Lyra’s development. It was not only delightful, but a relief, to hear.

As anyone who is the parent of a child with special needs can attest, it’s hard to objectively know if we are focusing enough on Lyra’s therapy “homework.” I suspect if Lyra were our only child, Max and I would spend more time on the floor with her, encouraging her to bend her knees as she sits up, to crawl on all fours, to stand with proper foot alignment as she rises from a small chair. If she were our only child, we’d really focus on that pincer grip, maybe even tape down all her fingers except the forefinger for short spells each day. And if she were our only child, we would practice all those speech exercises twice daily. Lyra does get these and other interventions, but only on a catch as catch can basis. On the other hand, with four older brothers, Lyra lives in a rich and stimulating environment both physically and verbally, and so we tell ourselves it is a wash. Still, outside confirmation is welcomed.

I used to say my favorite stage of babyhood was the week in which my babies could sit up but not yet crawl. The babies were happier because they could play with toys placed within their reach, yet I didn’t worry about them crawling toward danger like stairs or trashcans. Well little Miss Lyra first sat up on June 29, 2013, but she did not crawl (army-style) until January 12, 2014. Hypotonia, as with so many other things, is to blame for this delay. Mind you, Lyra was scooching from place to place and the scooching—sort of a sitting hop—remained the more effective means of mobility for several weeks after she began army crawling. But in March, I knew the balance had tipped when I left Lyra in the hallway and ran to the basement to quickly grab something. Perhaps less than a minute later, when I returned to the top of the stairs, I found Lyra considering a head-first tumble down the two steps that lead from the hallway to the basement landing, a good twelve feet away from the spot where I had left her. While injury was narrowly averted, I was thrilled and scooped Lyra into my arms and danced with her in the hallway. Once a baby motors on her own, it’s an “Ah-ha” moment for the child. Once the power of self-locomotion is cognitively recognized, a child only wants more and pushes ahead to pulling up, cruising furniture and, finally, walking.

“You have to come see Lyra soon,” I told my friend Vanessa, the photographer who has captured so many beautiful scenes of our whoopsie-piggled life, “She is not the baby you last saw, she such a big girl now.” Most of the year, I see Vanessa many times a week as we hike together at a nearby park, often with Lyra strapped on me in her carrier. But this winter our walks were sporadic at best. While it can be said that there is no such thing as bad weather, just bad clothing, I do not own the clothing that would allow me to remain comfortable outdoors in subzero temperatures for more than a handful of minutes. Besides, my dear Vanessa is in her last full semester before obtaining her BFA in photography. And she has four children, a partner and as many dogs and cats as we have. Our walks are as much solidarity meetings as they are physical exercise.

About Time

I wrote in “Love Stories, Sexuality and Secrets” about my annual Valentine’s tradition of  giving the children a movie musical (all love stories) on DVD. This year I broke tradition, but only slightly. Max and I saw the non-musical film About Time in the theaters last fall and, before we left the cinema, I had decided it would be this year’s choice. The director, Richard Curtis, also directed Four Weddings and a Funeral, Notting Hill, and one of the boys’ all-time favorite films, which we own and they watch seemingly every six months, Love Actually. You know, good-feeling, yet smart, romantic comedies. And so, too, begins About Time. Right after the opening credits, the father of the young protagonist (played the ever-engaging actor Bill Nighy), tells him that the men in their family can travel back in time. The son decides immediately to use his newly discovered powers to find a lover. It’s fun and funny, but only a traditional hetero-romantic comedy for the first third of the film. The rest of the movie is a love story about parents, children,Unknown siblings and friends. It borders on sentimental, but because it’s British and the Brits get awkward with gooey emotional stuff, it comes together. The film had me contemplating how we choose to spend time, both with those we love as well as complete strangers and, if we could, would we choose differently in a second go around?

So what am I getting at here? Well, it’s the problem being busy, something of an American addiction that I feel I must suffer from but cannot resolve how to quit. I hear everyone (including myself) state how busy they are as if it is a justification for mere existence. Yet more than twenty years ago, I watched my undergraduate advisor (about whom I’ve written in Whoopsie Piggle essays here and here) as she juggled teaching, researching, writing, speaking, putting together museum exhibits and having a family (it helped that her husband was a professor in the same field and they collaborated). Just watching her was exhausting and I distinctly recall telling myself I never, ever wanted to be that busy. But I am. My advisor had a full-blown career and one child. I have myriad employment activities (along with proofreading, I still work evenings at World Market and substitute at the Waldorf school when needed) and five children. I am not lazy, far from it, but it feels like the world I live in has largely lost equilibrium.

Does all this busyness add up to anything vital? Or only further a lack of being present in life?

As part of the latest court proceedings with my ex-husband, he petitioned the court to have me meet with a vocational assessor, which I did. She was easily likable and, as I have nothing to hide, we spoke amiably for two hours. The only time I was at a loss for words was when she asked, “Now what do you do for recreation?” I stumbled and stammered and finally mentioned what a fun day we all had in early March when we watched Hugo perform in a drumline competition in Toledo and then drove on to Ann Arbor, where we returned Claude to school and dined together at Zingerman’s deli. It was a fun day, but what the assessor was after was something more like a hobby or reading books or, really, I’m not sure what she expected, but she looked at me quizzically before continuing with her questions.

Last year, I read in this essay what stuck with me was the bit about the author’s friend who had moved from New York City to a small town in France and discovered, quite remarkably, that she did not have the personality she thought she had, someone who was “driven, cranky, anxious and sad.” She now finds she is happy and relaxed because she’s no longer part of the American collective of busyness. I don’t need to move to France, though I’m not saying I would turn down an offer, but if I could actually pay the bills by writing four to five hours a day, then I think I’d have it all figured out. I certainly would love to find out if that’s true.

Challenging, Yes. Bad? Well, that Depends

This year’s repeated visits from the polar vortices did not make us any less busy, yet I felt we got less done and were more frenetic than purposeful. Perhaps channeling my inner Nietzche, on the coldest days of winter, I thought, This is healthy. And as evidence of being made better by that which does not kill us, I consider the dead. Dead insects, that is. In the past decade, the pine beetle has destroyed the Rocky Mountain forests because without enough continuous days of cold weather (yes, Virginia, there is global warming), the pine beetle population has exploded. Here in Ohio, I heard several reports during those endless weeks of frigid weather that invasive insects, such as the gypsy moth and the emerald ash borer, were decimated by the epidemic of frigid temperatures (and may the same be true of fleas, ticks and mosquitoes).

From challenges of an uncommon winter we became heartier. By March, schools no longer canceled when the mercury was between zero and 10 degrees as had been the case in January and, at least at the Waldorf school, bundled youngsters went outside for all of their regularly scheduled recesses, hardly noticing the cold. We learned, yet again, the constituent ingredients of family as we shared the feeling of desperate vulnerability over Jules’ health, and later celebrated his health. That episode, along with managing my rental property in less than ideal circumstances, reminded me that with Max I truly have a partner in all things. And in petitioning for what is fair for my children, I see that I am no longer afraid of my ex-husband for he can no longer harm me and instead seems driven to harm himself.

Yet as more days invite us to peel off our layers of clothing, open the windows and walk barefoot on freshly sprouted grass that has yet to feel the blade of a mower, I feel lighter and realize this winter required a hunker-down, shoulder-in approach. Ice, snow, salt and babies dashed from cars to indoors, lest their cheeks freeze. With the slow ebb of winter (it did snow here on April 15), time no longer feels spent entirely on survival.

Here’s to spring and all the warm promise it holds with longer days, gentler weather and, quite possibly, a spell where time promenades.

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Ms. Lyra Goes to Washington #PasstheABLEAct

Scenario One:

Imagine you discover that your great-aunt, who recently died, left you $3,000. She had not told anyone she planned to leave you a small sum of money and so it comes as a complete surprise to you and the rest of your family. Because she knew you make minimum wage at your job, your aunt felt you could use the money to buy a few things you can’t afford, maybe a new television or some furniture for your apartment. She said as much in her will. What she did not know, however, was that her gift would devastate your life.

Scenario Two:

Imagine that shortly after finishing high school, you find a job at a fast food restaurant in your neighborhood. You love your job. You feel like a useful member of a team of co-workers and enjoy helping the customers who come to the restaurant. You work hard and look forward to your shifts. After six months, the manager of the store tells you she is pleased with your work and would like to increase your hours to full-time. You would love to say yes, but you cannot.

What’s key to these scenarios?

As an adult American diagnosed with Down syndrome, you are allowed no more than $2,000 in savings in order to keep your Social Security income, your Medicaid health insurance and even, in many instances, your housing and your job. You are not getting rich on your SSI. In Ohio, for example, the maximum you can receive is about $700 a month. Overwhelmingly, your employment options will earn you at most minimum wage (currently $7.85 an hour in Ohio) and if you are working at a Medicaid-subsidized group program, you might only receive a small stipend.

But you want to work; you want to be able to afford things that most Americans take for granted—new clothes, glasses that fit your face, furniture for your apartment, maybe even a down payment on a home of your own. You are a contributing member of society and just want the opportunity to work without the fear of losing the safety net that is so pivotal to your health and independence.

These scenarios and others like them really happen. All. The. Time. The Upside of Downs, a Northeast Ohio support group for people with Down syndrome and their families, regularly receives phone calls from frantic families as they grapple with the sudden loss of so many important things for their child or sibling because of a mere $2,000 windfall or a child who worked too many hours one month and, as a result, are denied Medicaid benefits the following month. Without Medicaid, prescription drugs are often beyond the financial means of an adult with Down syndrome. Furthermore, housing and vocational waivers are provided through Medicaid and their loss could leave you homeless, with no where to go.

Not What Grew Up With

Growing up, I did not know children with Down syndrome because in the 1960s and ‘70s, institutionalization was still common and mainstreaming was not. I first met adults with Down syndrome in the 1980s when the institutions were closing and group homes were opening. I believed the abilities and behaviors of those adults I first met represented the norm for someone diagnosed with Down syndrome. I was terribly wrong. What I observed was primarily the effects of lifelong institutionalization, often from infancy.

I regularly catch myself remarking, with some surprise, “Wow, Lyra is so bright!” and then I wonder why am I surprised. Lyra lives in a rich home environment with two loving parents and four adoring brothers. Twice monthly she works with her team of three therapists: speech, physical and occupational. Our days take into account how to help Lyra overcome her primary challenge—not her cognitive abilities, far from it—but her hypotonia, which affects her speech, her mobility and her fine motor skills (think pincer grip). Lyra is socially engaged, full of speech, both spoken and signed, and eager to learn.

Truly, as a mother of four older children, the only substantial delays I see in Lyra right now are her size (wee, teeny peanut) and her low muscle tone. I fully expect her to read, go to college, drive a car, live on her own and have a rewarding job. She may marry and, yes, even have a child of her own. This is not the Down syndrome of my childhood,when babies where locked away and processed en masse in ways that did not allow anything near the full development children with Down syndrome are capable of. Why would it?  Early and continuous institutionalization stunts the full development of all children, including those with the typical number of chromosomes.

Achieving a Better Life Experience (ABLE) Act of 2013 

For nearly ten years, organizations such as the National Down Syndrome Society (NDSS), activists and self-advocates (persons with Downs syndrome who speak out about the issues they face) have worked on a bill known as the ABLE Act. In short, the ABLE Act would allow people with Down syndrome and other disabilities to have tax-free savings accounts as an expansion of the existing IRS 529 rules, currently used to save for college tuition. Similarly, the ABLE Act 529 accounts would allow people with Down syndrome to save for qualifying expenses such as housing, transportation and medical costs. Most importantly, people could keep up to $100,000 in their ABLE account to supplement their current governmental benefits without fear losing those benefits.

Wow! $100,000 sounds like a lot of money!

Yes, if given $100,000 in one tax-free, lump sum that would be a whole heap of cash. But consider this: When Max and I graduated from high school in the mid-1980s, the life expectancy for someone born with Down syndrome was twenty-five years. Putting aside the distressing idea of losing any child in their twenties, that life expectancy would mean that even though we had Lyra in our mid-forties, we could expect to outlive and continuously provide for her as needed. Now, just thirty years later, the life expectancy for babies born with Down syndrome is sixty years (and rising). No matter how healthy our lifestyle, it’s safe to assume that Max and I will not be centenarians.

So what happens to our daughter when we are gone? How do we plan for her? Just as importantly, how do we assist our other children, Lyra’s four brothers, who will care for her when we are no longer here? She may outlive us by many decades, in which case $100,000 no longer sounds like all that much money to work with.

And this is what Jules and I told our elected officials in Washington D.C. on February 27.

Meeting Old Friends for the First Time

Half an hour after we arrived at our hotel in Arlington, Virginia, Jules sat with me at one of the two tables reserved for Ohio activists, mostly parents, but also siblings and self-advocates. We listened to members of the NDSS discuss the importance of the ABLE Act, the Congressional Down Syndrome Caucus and the intersection between Down syndrome and Alzheimer’s disease before a presenter from Soapbox Consulting coached us on how to talk about these topics with our legislators and their staff members.

And then we had what felt like a family reunion. Because of the Internet, I know many people who have children with the diagnosis of Down syndrome. After our training session, I hugged people with whom I have had online conversations but never met in person, including Jenny Jacobs. Jenny had the brilliant idea to start a Facebook group for families with children who were born in 2012 and 2013 with the diagnosis of Down syndrome. This Facebook group is an amazing resource for information and support, creating a virtual community to turn to with questions, concerns and celebrations at all stages of our children’s development.

When first invited to join this Facebook group, by another mom who lives in Northeast Ohio, I thought it was a local group and all the members posting lived nearby. It was only when a woman with whom I had several exchanges mentioned that she lived in Oakland, California, did I realize that the group was national. At dinner that first night, Jenny told me that it is actually international, as it includes families in Canada and Australia.

Sleepover buddies!

Sleepover buddies!

The Oakland mama powers out mighty essay after mighty essay on her blog, KimchiLatkes, many of which I have shared on my Facebook wall. Back in December, she told me about the NDSS conference and legislative “march” in support of the ABLE Act. She also invited us to share her hotel room. I have never participated in dating websites such as Match.com or eHarmony, but I suspect I know what it feels like to first meet someone with whom you have had many email conversations, shared photos, and possibly even a few phone calls. I wondered how my Oakland friend and I would find each other—would we like each other as much in person as we seemed to whenever it was convenient to chat online? In this instance, it turns out the online relationship was a good predictor: two nights in a row, for hours after our babies and Jules had fallen asleep, we laid on each of our beds in the dark hotel room and talked like middle school girls at a sleepover.

Meet and Greet on Capitol Hill

Our task was pretty simple. We needed to ask our Ohio legislators to:

  • Co-sponsor the ABLE Act or thank them if they already have.
  • Sign a letter requesting that the ABLE Act be brought to the House or Senate floor for a vote as soon as possible.
  • Sign a letter urging a hearing on, and funding for the research of, the intersection between Down syndrome and Alzheimer’s disease.
  • And finally, to join the Congressional Down Syndrome Caucus (House members only).

Of the four legislators we were scheduled to meet with, three were already co-sponsors of the bill and happily agreed to sign a letter urging the ABLE Act up be brought up for a vote. One congressman was already on the Congressional Down Syndrome Caucus, and the other, a newly elected member, seemed open to the idea. All four listened to the information we gave them on the intersection of Down syndrome and Alzheimer’s.

Dear Readers: We need your help!

The only outlier in all this was Senator Rob Portman, a Republican from southern Ohio. His aide insisted that Senator Portman supports the ABLE Act philosophically, but will not commit to co-sponsoring the legislation until he learns the Congressional Budget Office’s (CBO) analysis of what these tax-free savings accounts would cost the federal government in lost tax revenue.

The people I spoke with at the march believe the CBO’s number would come in between one to one and a half billion dollars a year. But that number strictly looks at lost tax revenue. It does not take into account the taxes that would be paid by adults with Down syndrome who are able to work as many hours as they wish without fear of losing their needed benefits. Nor does it take into account differences that are more difficult to tease out with standard accounting, such as loss of sibling income and, therefore, tax revenue, as families must currently make hard choices on how to care for their brothers or sisters with Down syndrome.

Fellow Ohioans, please call Senator Portman’s office and let him know that the benefits of the ABLE Act far outweigh the costs and that it is not unreasonable to consider the ABLE Act budget tax-neutral for all the reasons mentioned above.

Fellow Americans in other states, please visit this NDSS link, which not only discusses the ABLE Act in detail, but also contains links that identify which senators and representatives, state by state, have co-sponsored the ABLE Act. Please check and see if your legislators are co-sponsors and if not, contact them and ask them to consider doing so.

There is nothing wrong with families caring for one another. But families should not be restricted in their ability to do so because one member is diagnosed with Down syndrome. Adults with Down syndrome should not have to choose between employment opportunities, including how many hours they work, or Medicaid. Adults with Down syndrome need to be able to work meaningful jobs,  save the money they earn, and live to their highest potential. And when that happens, so too will it no longer be surprising for adults with Down syndrome to lead lives that look little different than yours or mine.IMG_0286

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The Mother I Wanted

On a snowy winter’s morning twenty years ago, my graduate school adviser sat at the foot of my bed, where I lay with my head and shoulders propped up on pillows, and told me the plain truth, “What you have just done has happened billions upon billions of times in human history and yet I know that right now you feel like the first woman who has ever done this amazing thing. The unoriginal act of giving birth is more potent than any original piece of art. But let me also tell you this: soon there will be a cake with one candle on it, then another with two candles, and then five, then sixteen and, before you know it, twenty.”

NewbornClaude

Our first day together

Claude arrived on Epiphany, the Christian holiday otherwise know as the Twelfth Day of Christmas, when according to legend the three gift-bearing Magi arrived at a stable where another mother marveled at her newborn son. Born shortly after midnight, Claude might have arrived the day before had his umbilical cord not been wrapped around his neck and torso, leaving no slack. With only his head delivered, the midwives carefully tucked Claude’s face into my left inner thigh and somersaulted the rest of his body out and over his umbilical cord, thereby avoiding any compression of the cord. Two hours later, having confirmed that mother and baby were well, the midwives left us with a clean bedroom and we were on our own. At five in the morning, I was startled from the deepest sleep by the reedy cry of my baby. My baby. It took nearly half an hour to change that first diaper in the pre-dawn darkness.

Firstborns

Firstborns make a woman a mother. In one night, all the things I had previously known myself to be—woman, daughter, sister, graduate student, dog owner, reluctant wife, to name a few—were buckled in the back seat of my identity. So strong was the love I instantly felt for my first baby, who became the boy who is now a man, like many women, when I became pregnant again I worried whether or not I could love my second child nearly as much. But I did and I do.

Romantic love is a rush because the lover can view herself through the eyes of the beloved, yet her focus remains largely on the self. Maternal love, however, causes normal women to do things they would do for nobody else, not even themselves. I don’t mean epic stories of crossing mountains barefoot with babies strapped to backs, but the quotidian. Holding a vomiting child in your arms so he feels comforted and safe, giving up a full night’s sleep, sometimes for years and, perhaps hardest for me, being bored so your child can have fun, a feeling any adult who has played Candyland over and over will recognize. I was genuinely thrilled when Claude and Hugo finally learned their numbers (at around the same time, given Claude’s yet undiagnosed dyslexia) if only so we could play the card game Uno. Our Candyland game promptly “disappeared.”

While I seem to remember every detail about the first few days of Claude’s life, after about a week of motherhood, the days blur in my memory. Until one afternoon in mid-February. The crispness of deep winter had shifted to the damp, penetrating chill of late winter. For weeks, that the sun shone was discernable only because the stratus clouds stitched to the horizon in all directions brightened for a period of time each day. Standing alone with my infant, the concrete pathway alongside my house sucked the heat of my body from the soles of my feet. Moments earlier, I had pulled shut the self-locking front door before realizing my keys were still in the house. I walked to the side of the house and stared down at a ground level casement window. No bigger than 30 inches wide and 24 inches high, it easily pushed open and levered up to the basement ceiling. Several times in the five years before Claude was born, I had gingerly slid through that opened window, feet first and belly down, and plopped to the basement floor like a gymnast jumping off a balance beam. Voila; I’d have broken into my own home. If my dogs were with me, I’d leash them to the front door handle. Or, if I didn’t have their leashes, I’d give the command, “Stay,” and after disappearing through what must have seemed a hole to the dogs, I hurried up the basement stairs to collect them before they wandered into the street. But this time, I couldn’t leave my baby on the ground for even two minutes, not just because it was bone-chillingly cold out. No, it was because he was completely vulnerable and belonged in my arms. Where he was safe.

I knocked on the door of the house next door, which was rented to several young guys, all students at nearby Ohio State University. “Could you help me? I need someone to crawl into my basement and let me in. My baby was born six weeks ago today.”

I was no longer an independent agent.

And That’s Just Fine           

Two years earlier, on a bright day when it was warm enough to walk in shirtsleeves, but cool enough that none of the buildings had yet turned on air conditioning, I walked across the oval at Ohio State with the same adviser who would later visit me on the day Claude was born. I retold an Amy Irving quote that went along the lines of, “First I was known as the daughter of Jules Irving, then I was known as the wife of Steven Speilberg, what I don’t want next is to be known as the mother of Max Speilberg.” I suppose I sympathized with Irving’s feminist complaint about being a woman who was chronically defined by the men in her life while she herself had an estimable career.

“You know,” said my adviser, who had already amassed a substantial collection of awards, honors and grants as a specialist in the art of South Asia and continues to do so to this day, “if I am only remembered for being the mother of my son, nothing would please me more. And I’d feel exactly the same way if he were a daughter.” Perhaps to someone else, this would have been a toss away comment in a toss away conversation. But her words pierced me. From my earliest memories, I had believed that the path for my parents, especially my mother, to love me was for me to earn their pride. It was not until years later that I understood what I desired from my parents was like wanting a homeless person to give me money; they just didn’t have it to give. Though I had no plans for children, an inkling of a different kind of motherhood, one in which I consciously chose my role, arose. Like a magpie spying a gem, I snatched my adviser’s comment from the air and tucked it safely away.

Actively Choosing

Becoming a parent does not require prior training or a license. Parenting styles, good and bad, abound and yet overwhelming the majority of children grow up to become normal adults (whew). I have read studies that indicate that parents have scant impact on how their children turn out. I have observed this first hand as Claude and Hugo have very different, if not complementary, personalities. Even in college, Claude is often the first student in his class to turn in a project. Whereas upon Hugo’s report cards the words “missing assignments” are often found. While Claude guards his time like gold ingots, Hugo seems incapable of saying no and is chronically overbooked. Nonetheless, I see similar core beliefs in my two eldest. They are both incredibly responsible, (far, far, far more so in matters outside the home than in) as other adults regularly go out of their way to tell me. I do not think this is coincidental.

My father used to often say that his parenting style was derived from remembering what his own father did and doing just the opposite. And when those of us who knew both my grandfather and my father heard him say this, we laughed. Though his hippie appearance iconoclastically compares to my grandfather’s Eisenhower-era style, my father is very much like his father, particularly in his emotions. Saying you absolutely will not do or be something seems an unavoidable recipe for the opposite. It’s like the proverbial saying about anyone who disavows thinking of elephants, which only sticks the image of elephants in his or her mind.

Strict, /strikt/, adjective 1. 
demanding that rules concerning behavior are obeyed and observed.

“Do you know what the word ‘strict’ means, Holly?” I shook my head. “Strict was how your father was raised and that’s how we are going to raise you,” said my mother, referring to my stepfather whom she had married the year before when I was in kindergarten. Today, I know the word ‘strict’ to indicate an underlying structure that is clearly understood and followed without fail. But what my mother meant was that I would be punished capriciously, whether or not a rule had previously been explained. Punishment could be very structured—as when two months after announcing their parenting style, I was caught stealing lipstick testers from Sears and subsequently lied about it. It was the beginning of June, I was precisely six and a half, and had just finished the first grade.

“You can spend the entire summer vacation, that’s nearly three months you know, in your bedroom. Or you can get spanked with your father’s belt tonight and then go to bed immediately after supper for the rest of the summer. Go to your room and think about which one you will choose.”

It was my first lesson in the awful truth: Waiting is worse than physical pain. After an hour, my mother came to my room and counseled me to take the beating. “Imagine hearing your friends playing outside all day and you can’t join them?” I agreed and was left alone to await the execution of my choice, learning the second awful truth: It’s a crap shoot whether or not to put on extra underwear to pad the blow because if they pulled down your pants and found out, well, it would be worse than a whipping with only one pair of underwear on. With experience I came to learn that bare assed whippings generally happened only in the unstructured, heat of the moment punishments, such I received the summer I was eight-years-old and didn’t hear my mother calling me to come home. When I eventually arrived, she tore my shorts off in the kitchen and used the back of my plastic hairbrush. My friends stood on the sidewalk in front of the house and listened through the opened window, running home when I became silent.

For the entire summer of 1972, my mother and her husband followed through on their promise to send me to bed every night after supper. Throughout that summer, I stole bottles of children’s chewable vitamins whenever I went to the grocery store with my mother. I shared them with the kids on my street because they tasted like candy, but also because I had fallen prey to the television commercials in which kids spilled out of a school building while an authoritative voice-over stated that most children do not get their daily allowance of vitamins. On my block, I took care of that problem.

I Chose

For many reasons, parenting is perhaps easier for me than it was for my mother. When I was twenty-seven, I chose to conceive a child with the man I loved. My pregnancy was not accidental nor did I get pregnant to leave my parents’ home as some say my mother did. I was college educated, had studied and traveled in Europe, was employed at a major university, had lived in the same house for a number of years and was about to begin graduate school. I had lived a full life and had many options going forward. I was afraid, however, that I did not know how to be a good mother. As soon as I learned I was pregnant, I did what I had always done when facing the unknown: I studied. I read texts on pregnancy, delivery and the care of babies. I went to public talks and, later, even conferences on parenting. I sought out women of all ages whose parenting I admired, which in our community was easy, and not only observed them, but endlessly asked questions. For years, I walked at seven every Sunday morning with a dear friend who was a grandmother and an at-home daycare provider. We talked of little else than childrearing.

I chose to be strict, but by my definition (which is also Merriam Webster’s) because I believe for children to feel safe, they need to know the rules and also that the parents will uphold them. Like my mother, I don’t play poker with consequences; never bluffing, I always follow through. But my consequences make sense and are never cruel (though Hugo might argue differently, as he often does in the moment). I believe children are best when expected to be responsible for their actions as well as pleasant company (I’m sort of old school/Dr. Benjamin Spock on this). I treat my children as sovereign people but I am in charge, I am their guide. I love them and want them to become whole, happy adults. It is hard work because children are relentless. I have said, “Yes, please? Or no, thank you?” so many thousands of times it is second nature and I frequently find myself positing the same question to children who are not my own, making me feel like an old school marm.

A Son Is a Son Until He Takes a Wife

But must whole, happy adults leave? Couldn’t I raise sons who stay close to their original family? To me? Certainly they must go out on their own and find their paths in life. But I have always hoped that they would not scatter the globe and only communicate with me, and each other, on birthdays and holidays. My fantasy is that after they go out in the world and have adventures, they one day settle in Akron and, should they have them, raise their own families nearby.

When the boys were little, I told them some day they would go away for college and live on a campus. Claude, who was about nine years old at the time, told me, “Oh, no, Mama, I’m going to live with you when I go to college.” I said he might feel differently when he was eighteen but he was adamant. He is now in his second year at the University of Michigan, which is a three-hour drive from Akron. After living in a dorm his freshman year where he made many good friends, Claude has been far happier living in the Sojourner Truth Co-operative House his sophomore year. In some ways, a university co-op is little different than a big meditation center like Karmê Chöling, where Claude has been going his entire life. Everyone has assigned jobs to keep the place running, one meal a day is prepared by cooks; the rest of the day the residents can cook for themselves from the well-stocked pantries. It’s easier than living in an apartment as his monthly rent is all-inclusive and relatively cheap. Except when studying abroad, Claude plans to live at the Truth House for the rest of his undergraduate career.

Watching Claude transition from his freshman year, where he deeply questioned all his collegiate choices and called me frequently to talk about his concerns, to this year where he has the relaxed confidence of a competent adult, makes me feel like it’s all coming together. Now, after all the work of raising a child and hoping I was making the right choices, it almost appears as if I had a master plan.

Well, I didn’t. For if the firstborn child makes the mother, it is also true that the mother learns nearly everything about childrearing with that firstborn. Claude hits all the major benchmarks first. From that first diaper change on the night he was born until the day I die, I am exposed to each stage of parenting with Claude as my perpetual guinea pig. When I sit down later this year with Hugo to help him apply to colleges, I will be greatly informed by the learning process I underwent when Claude applied two years ago (Hugo will not apply to sixteen institutions, I hereby promise). And Claude’s younger brothers might never live in dorms but rather apply to live in co-ops beginning their freshmen years, given Claude’s experience. And even though Lyra is a girl with a diagnosis of Down syndrome, we work with her on the very things her brothers required help with—sleeping through the night, holding her own cup, eating a variety of foods. Yes, we have worked more closely with Lyra on crawling than we did with the other boys. However, I recall when Claude was ten months old and still not crawling, my graduate adviser asked me if I had shown him how.

Adapting Is Required

Sometime many years ago, I began making Pillsbury cinnamon rolls with cream cheese icing for my children’s birthday breakfasts. When the boys awaken to the smell of cinnamon rolls, they know it’s someone’s birthday because those are the only days of the year that I make them (they are horridly sweet, non-nutritious and, thus, perfect birthday food). When Claude, who has always been my healthiest eater, was in middle school I also began making him a birthday omelette, usually with onion, spinach and feta cheese. And, too, since he turned ten, we have taken him to our favorite Indian restaurant for his birthday dinner (Claude has eaten Indian food, which he loves, from the moment I introduced solid foods into his diet when I was also studying South Asian art and architecture).

With his birthday so early in January, well before classes start at his university, I believed we would continue these traditions for at least a few more years. But this year, Claude did not stay home over the entirety of winter break. On New Year’s Day, he rode an Amtrak train to Schenectady, New York where the young woman he has been dating picked him up at the station and took him to her parents’ home. On his twentieth birthday, Claude arose at five in the morning and made omelettes for his hostess, her sister and himself. The young couple piled into her car with another Michigan student and carpooled for ten hours before stopping at our house for a quick bowl of chili. Claude grabbed the rest of the things he needed for school and in less than an hour, they were gone.

Three days later, we received a postcard, which read:

Claude's Postcard

Hey Guys,

I had a wonderful break and I already miss you dearly. My first class is in a few hours and I’m excited to start school. Still, It would be great to visit MLK weekend.

Love, Claude

Claude will return home for the Martin Luther King, Jr. holiday weekend when we will properly fête the debut of his third decade. He knows he is getting a sports coat because we went together to pick it out and have him measured for alterations (with 37 inch arms, the sleeves always need lengthened). And, I imagine, we will go to our favorite Indian restaurant where they will bring him a dessert adorned with a sparkler that represents the twenty years, which, yes, feel as if they have passed in no more time than it takes to watch a substantial film.

Nice Work If You Can Get It

The week’s New Yorker arrived with a short essay by John Hodgman, in which he asks the reader to pretend that he’s writing about his cats and not his children because telling stories about children “always seems a little lazy. Children tend to be sort of dumb, and, in the end, the stories are always the same: children say hilarious things, and I am old and dying.”

It is true that writing about children is a slippery slope that can easily descend into gooey treacle. And there is nothing like watching your own genetic packets go from instinctual blobs to broad-shouldered college men with full lives to italicize the swift passage of time. But of all the things I have done or will yet do with my life, none are as important as raising my children as well as I can. On the Darwinian fitness level it’s the hardwiring in everyone’s primal cortext, which means I’m possibly doing this only to help my genes carry on in the bigger genetic pool. But look, I have made mistakes with my kids and sometimes because of my kids, and yet when all said and done, I’m a better person for becoming a mother. This not every woman’s truth, but it is my truth. Being the mother I wanted to have has largely satisfied the unmet needs of the child I was.

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Traditions Refashioned

When the big boys were little, my biggest writing project of the year was my holiday letter. Every December, beginning in 1994 just before Claude’s first birthday, I wrote a two-page letter of family updates and book recommendations mixed with what I hoped was enough humor to make the reading interesting. I made 60 or so copies of the letter and placed it, along with a family snapshot, in a holiday card where I wrote personal notes to the recipients. This last step took many hours and, as a result, my cards were never mailed prior to New Year’s Day that first year or any year thereafter. This never bothered me as I figured after the rush of holiday cards in December, who minded getting one in January when all else in the mailbox was bills?

For many weeks each January, I carried a small shopping bag of printed letters, photographs and card boxes with me wherever I went. Once the boys were old enough to join the school ski club, I would help them into their skis, send them off to lessons and then hole up in the “lodge” (which more resembles an elementary school cafeteria than any Alpine lodge such as the one in Charade with Audrey Hepburn and Cary Grant) where I would write personal notes for two hours or more. Beyond keeping in touch with friends and family, each year I added the latest letter and photo to a manila folder with the previous years’ installments, creating a collection for my children to have when they were grown. The whereabouts of  that folder, which was close as I ever got (or will get) to scrapbooking, I no longer know.

I stopped my holiday letter project when I left the boys’ father because I didn’t want to lie and, honest though it may be, I doubted many on my list wanted to receive a letter that read:

This year, as with the last three, our family continues on with the long and acrimonious divorce that any witness could have predicted the day a Franklin County judge declared us husband and wife. We began the day arguing, quarreled our way through a breakfast at Bob Evans and sulked as we dressed for the event. So, too, anyone who believes in omens could have foretold the outcome of this union when, as we bickered our way to the courthouse in an ’83 Toyota Tercel, the car slowed and then stopped in the middle of the busiest section of one of the busiest roads in Columbus, having run out of gas. Were we mindful or superstitious, we would have wisely called the whole thing off then and there.

If only getting in had been as hard as getting out…

Now, a few years later, resuming the tradition of holiday letters is difficult. It has become as passé as so many other things. Where I used to try and find attractive ways to display the dozens of cards that would fill our mailbox in December, we now receive a handful of single-paged, no-fold cards made online, usually sent by people with small children, with three or four digital photos of the sender’s family. I like these because I feel less guilty recycling photos printed on cardstock paper. Back in the day, I never knew what to do with all the snapshots of other people’s children. I’d stick them in a seldom-used drawer and then, often when moving and with much guilt, throw away a bunches at a time. Last year, I took part in this latest online card creation trend and ordered a two-sided piece that doubled as both holiday card and birth announcement for Lyra. Of the thirty I ordered, I managed to mail about ten.

In 2013, I wrote essays about our family all year long and posted them publicly on Whoopsiepiggle.com, where anyone can read them, leaving me to think that holiday cards would be overkill and, besides, my time is a more rarified commodity than ever before.

Christmas Past

During the ten years I lived with my mother, we spent Christmases in LaPorte, Indiana, where her own mother had been raised. Arriving at my great-grandmother’s house late in the afternoon of Christmas Eve, I’d run to the chair by her Christmas tree and pretend to watch television while slyly assessing if any of the presents under the tree were for me. From there we’d caravan with other family members to one of my grandmother’s siblings’ or cousins’ homes for a buffet dinner that always included Swedish meatballs. Though not unpleasant, these dinners were dull affairs for I was adrift between generations. As the first great-grandchild, born to a teen mom, I was closer in age to my mother’s youngest cousin (five years my senior) than to the next great-grandchild (eleven years my junior). While the big kids gossiped, I watched television until we returned to my great-grandmother’s house where I slept on the living room floor as children will: like a rock dropped into deep waters, oblivious of the mantle clock as it chimed every fifteen minutes, waking all visiting adults in the house.

On Christmas morning, the presents were divvied up and then everyone plowed through their pile all at the same time. We’d clean up the torn wrapping paper, eat breakfast, get dressed and pack our belongings. When Shirley Temple’s movie Heidi came on WGN just as it did every Christmas Day, I knew we’d soon leave, as we never stayed longer than the scene where the monkey throws candlesticks from on high. By day’s end, we’d be back home. Well before New Year’s Day, the artificial tree, which was the only nod to Christmas in our house, was dismantled and stored away for another 50 weeks. All in all, Christmas was a tidy, efficient affair.

Making Christmas

Ready for the MorningI love Christmas. The entire United States is quiet and none of us are expected anywhere else but home. I love Christmas because it is the one day where the only plan is to be together as a family, eating and playing, relaxing and talking. A day that invites ritual, Christmas easily adapts to refashioning. Maybe one day, when the babies are big, we will spend Christmas on holiday trips to warmer climes.  But for now, we stay home, a decision I have mostly abided by since my first child’s first Christmas (there have been three exceptions, including the year we visited my grandma before she died). We open one present at a time, “Whose turn is it?” Jules or Hugo will ask before pulling a package from under the tree. The process takes hours, in part because we stop to eat coffee cake and pie, drink coffee and mill about. Unlike most days, there is no need to rush on Christmas. This year, we didn’t get to our stockings (filled mostly with edibles) until after dinner. 

I love bringing in a fresh tree and filling it with lights during the darkest days of the year and having the children trim it with their ornaments. My ex-husband’s mother, who died before we met, had given her children an ornament each Christmas. In his mother’s handwriting, my ex’s name and a year were written in permanent marker on the back of the few ornaments he brought to our first Christmas tree. I was charmed by this tradition and have done the same each year since Christmas 1994. The big boys have boxes with substantial collections of ornaments, some of which were inexpensive, like this year’s gnomes (two for $5), while for others I paid a premium (last year’s four gingerbread boys and one gingerbread girl made of silver and engraved with the children’s names, ages and the year).

Many years ago, I commissioned the Waldorf school’s handwork teacher to make three wool felted stars with different holiday scenes. She embroidered the boys’ names and the year on the backs. Like many artists, her artwork went through project periods. I met her soon after she began making her felted stars. Fabulously creative and painstakingly detailed, they were also expensive and I put money aside for several months in order to buy all three in time for Christmas. The first years the boys went to the Waldorf school, the handwork teacher was in her classroom every morning at 8:30, even though she didn’t teach until after 10:30. She arrived early because her own kids were students in the school. On a beautiful autumn morning when Claude was in the second grade and Hugo in preschool, I sat with baby Jules and watched as the handwork teacher showed me all the stars she had made over the summer break. While we were visiting, I took a call on my recently acquired first cell phone. “A small plane has flown into one of the World Trade Center towers!” I said, immediately repeating the words of the neighbor who had called. Even now, whenever the events of 9/11 are mentioned, I see a classroom cluttered with skeins of yarn and sheets of felted wool, gently bursting with patient creativity and the disconcerted look on the teacher’s face as neither of us were able to process what was happening.

A few years ago, after her children had graduated from the Waldorf school and also high school, the handwork teacher stopped teaching, which I assumed was so she could pursue other interests, larger art projects. Only recently did I learn that she has early-onset Alzheimer’s and can no longer sew the simplest stitch. Each year, three felted stars hold a small portion of the teacher’s life story as they hang on our tree.

Have Yourself a Very Buddhist Christmas

“I’m so impressed with the other Buddhists who don’t do Christmas,” a friend told me over the phone in mid-December. I had called her looking for someone in New England to pick Hugo up at an airport and drive him to what we consider our home sangha (basically Buddhist for congregation), Karmê Chöling in Vermont. Hugo, who several times has been a counselor for family camps and teen retreats, was asked to be an assistant teacher for Children’s Week. I don’t know if Children’s Week is a tradition that came from Tibet or, more likely, a creation of North American Buddhists to compensate for the hoopla of the dominate religion’s big day, Christmas. The notion of driving to Vermont in the dead of winter with a car full of children effectively dissuades me each year from participating and learning more.

Most Buddhists I’ve discussed the subject with and who were raised in Christian families (quite a few are Jewish) still celebrate Christmas. While we may not emphasize the birth of Jesus Christ, there is nothing about the holiday that is incongruous with Buddhist beliefs. Peace on earth, goodwill toward all is the essence of both traditions and well worth consideration all year long.

The JoyStill, there were many years when I felt the same way as my friend and openly asked why we went through all the trouble for this holiday when we aren’t even Christian? Partially, for many years I resented being the only one who set up and put away all the decorations (This is no longer a problem now that I live with Mr. Christmas, aka, Max.) And then, too, when the big boys became older, they weren’t as interested in trimming the tree, stringing popcorn and cranberries; they just wanted the gifts. Christmas magic dissipated right along with their belief in Santa. With Leif and Lyra, however, the magic has returned for all of us. The big boys are as eager to watch Leif come down the stairs and find a train running on tracks around the Christmas tree as are either of his parents.

Christmas Consumption 

The flip side of the season’s message of peace is the consumer culture running amuck for several weeks. I took a job as part-time seasonal help at World Market this year, which has left me wondering why I require everyone at home to put every little scrap of paper in recycling, even down to empty stevia packets, when my store, like every store in the nation, is relatively vomiting tons of trash into the landfill each year and distributing a steady stream of plastic bags, which eventually find their way to trash islands in the oceans, killing untold numbers of wildlife. This is to say nothing of all the actual purchases that themselves quickly cycle into the trash only to have manufactuers ramp up for more merchandise to be given and disposed of again next year.

And yet here I was working in order to raise the money to buy what my big guys really wanted—new clothing. While I rarely buy anything that isn’t deeply discounted, buying adult-sized clothes for two young men adds up. Claude wanted dressier clothes to wear when he attends symphony orchestra performances with a lovely cellist he has been spending time with lately. A whole lot of time. Hugo wanted dress shirts, ties and fine-gauged sweaters to wear over the dress shirts, something his choirs often require him to wear to school (and which he loves wearing). I would love to say I bought all handmade clothes, or at least clothes made in the US, but I didn’t. I bought clothes from the Gap and, thus, am a part of the cycle of consumption that relies upon cheap overseas labor. My only defense is that we wear our clothes until they fall apart, don’t think of garments as disposable and happily thrift for high quality garments. Claude’s favorite item is a cashmere sweater from Nordstrom’s that he found in his dorm’s giveaway box at the end of the school year last summer, which reminds me of my favorite sweater, a Ralph Lauren cashmere, that I took from the giveaway box at Karmê Chöling one summer. As a family we are pretty European in comfortably wearing the same outfit for days in a row, and these two high quality sweaters (that we do indeed wear for days in a row, Claude’s being a bold diamond pattern as seen in the Whoopsie Piggle Facebook timeline photo) underscore the notion that fewer but better clothing purchase is worth pursuing. But as of this Christmas, we bought new items from the Gap and Apple (work-related equipment for me), and other companies whose business practices are questionable. When I figure out a better way, I’ll be sure to spread the word.

In His HeavenJules wanted only one thing—a camera he could use to take pictures of birds. For several thousand dollars, you can easily pick up a good birding camera. We’d been researching affordable options for over six months, with no real success, when at last November’s Ohio Young Birders’ Conference, Jules and I listened to a young man’s presentation on photographing a wide array of birds that visit his backyard. His very large Powerpoint slides had fantastic resolution and at the first opportunity, I found the young presenter and asked him about his camera. “A Canon SX 40,” he told me. It retails for less than $350, which is still a chunk of change, but Jules is happy to have it double as a birthday and Christmas gift from Max and me.

Then there are the little kiddos. Max grabbed the big-ticket item that Leif had been asking for–his own kitchen. We “ate” many wooden pizzas that Leif served us all through the holidays, but Leif has been most pleased by the sizable train set we purchased for $10 last summer at a yard sale. The green engine, whom Leif has named “Thomas” and is as big as a teddy bear, considers Leif’s bed his engine house as that’s where Leif takes him each night.

AmbiClownI engaged in toy lust when I found on a discount website a line of toys I thought no longer existed. The only plastic toys I ever sought out, Ambi toys were very expensive German import items when the big boys were little. When I thought Jules would be my last baby, I hung on to our three Ambi toys, placing them in a box for visiting babies to play with. After Leif was born, I could not find Ambi toys anywhere in stores or online. Shop owners told me they believed the company had folded. Then one morning early in December, I saw an ad for Ambi Toys by Schylling on Zulily.com. Much less expensive than in the past (and I don’t doubt for the same dubious reasons our clothes are so cheap), I purchased a clown on a ball that I had coveted but been unable to afford nearly twenty years ago. “Look at him go!” says Hugo as he rolls the clown on the kitchen floor in my direction, “he’s so cool!” Lyra, however, is not interest in Rolly Clown other than to drop him, like all else, from the heights of her high chair tray. Letting go of the farce that I bought Rolly for Lyra, I may just take him to my office where he can help me write.

Max and I are easy. I want the same thing every Christmas: Smartwool socks (made all over the world, including China, but also in the US and Canada). Seriously, I want and need for nothing other than a new set of socks each year and Max happily obliges. I gave him new slippers.

Giving Season

I knew we’d feel surfeited, because we are. My boys and I have lived on very little, but even then we knew ourselves to be lucky. We live in a country with a big safety net, one we gratefully tapped into when we were in need. We’ve never gone hungry, cold or without medical care. Whenever there has been something one of the boys wanted that seemed out of our price range, we’ve always found a way.

2013 felt easier. Based upon his successes as a freshman, Claude was awarded substantially more money for school this year. His freshman year, Claude and I spent every penny we made on his tuition and materials, including a required computer. For nine months, neither of us had any extra money. I bought nothing, which didn’t feel so bad to be honest. Which means that without a tuition bill and a little extra money from World Market, I felt flush. It doesn’t take much.

After lunch on Christmas Day, I called everyone back into the living room and asked them to listen to an interview with Peter Singer, a Princeton professor of ethics. Singer’s passionate belief is that you get more bang for your charity buck by giving to vetted organizations working outside the US in deeply impoverished countries. His organization, The Life You Can Save, currently endorses only ten charities–ones shown to affect real change and not waste money on overhead and administration.

I’d love to tell you that the boys sat listening with rapt attention and then got online and filled out the forms to give a few dollars each month to one of the ten charities. Instead, I had to keep asking them if they were awake. With onion tart in their bellies, all three big boys stretched out on the living room carpet and closed their eyes. I told them that beyond my current giving to NPR and Karmê Chöling (about a dollar a day to each), I planned to start giving $50 a month to Oxfam.

I can’t make the boys be philanthropic; forced giving isn’t really giving. Besides, I long ago put Claude and Hugo in charge of their own finances. But I can plant the seed by modeling the behavior I hope to see. Fifty more dollars a month is a lot from my budget, and nearly doubling the amount I give to charities each month. And, in full disclosure, this is not the first time I’ve discussed charitable giving with them at Christmas. I tell them, I model it and then I let it go. They’ll figure it out.

That New Pope

I love the recent cover of the New Yorker with Pope Francis making a snow angel. I am one of the many non-Catholics who is stunned and thrilled by this new pope’s focus on grace and compassion. In spirit, he reminds me of the Dalai Lama with his curious intelligence and overwhelming love of humanity. It bodes well not only for the institution of Catholicism, which has seemed in the past few decades to be hanging itself on all the rope it can find, but for the people the Church has the ability to reach and assist. In his first speech of 2014, Pope Francis asked:

“Let us courageously ask ourselves: How did we live the time (God) gave us?…Did we use it above all for ourselves, for our interests, or did we know how to spend it for others as well?”

It Is What It Is

I miss the annual notes from acquaintances such as my former physician and his wife who, during the years of George W. Bush’s administration when Democrats everywhere were depressed, would write and tell me that at least they could pretend they lived in a different world each week when watching “The West Wing.” Or receiving photocopies of pictures taken of my home and its residents from more than a century ago through the 1990s. They were sent to me one Christmas by the children of the very elderly man who sold me the house, which he’d inherited in the 1940s from his uncle who had had it built in 1909. And, yes, I miss the feeling of accomplishment when, after putting together my little holiday projects, sealing and stamping each envelope, I’d take them all to the post office, pull open the metal drawer on the wall inside, place the cards in stacks and listen to them satisfyingly drop into a bin on the other side of the wall. But I’m not going back. I’m moving ahead to the next essay and the next, and so on.

Happy New Year. Be kind to yourselves and one another.

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Comparing Lyra

Historically, I have not been a parent who has put much emphasis upon babyhood milestones. I was not concerned with the boys’ height and weigh percentiles. They held their heads up soon after birth, rolled over by three months, sat at around six months, crawled soon after mastering sitting, pulled up and cruised furniture by one year, walked at fifteen months. I never watched to see if they grabbed things by raking them into their hands or developed the pincer grip (thumb and forefinger). When I listened to them babble, I didn’t take note of what sounds they were making. Eventually, they all started talking—Hugo and Leif rather early (sentences at 18 months), Claude just before two years and Jules rather late (sentences at two and a half). The truth is, nothing about the way my four boys grew from infancy to babyhood to toddlers was remarkable.

All of that unremarkable development seems so luxurious now.

Getting Lyra Going

Lyra seems like any other baby. She sits up beautifully, reaches for toys, scooches 360 degrees in a seated position and backwards crawls. At nearly seventeen pounds, Lyra looks and behaves like any ten-month-old. But she is fifteen months old. Today, we have what we didn’t have a year ago, a span of time to see precisely what it means to have a developmentally delayed child. It is not that she can’t or won’t do certain things—she just acquires most skills at a slower pace.

We heard last summer at the NDSC’s convention that the purpose of therapies is not to hit milestones at the same time as most typical children—the purpose of therapies for children with Down syndrome is to teach them the best way to use their bodies. Because most babies with Ds have low muscle tone, or hypotonia, and laxity in their ligaments they often overcompensate with less than ideal habits, which can be hard to correct. For example, it is better to have a child with Ds slowly learn to walk with the proper foot strike on the ground than to have them walking earlier with pronated feet.

Lyra herself has a little compensatory trick she uses to go from sitting up to lying on her belly with minimal engagement of her core muscles: Sitting with her legs in front of her at 10 and 2 o’clock, she presses her face to the ground in between her legs and, finally, slides her legs out and back, like a swimmer’s arms doing the breast stroke. “Wow, is she flexible!” people have told me when they’ve seen her do this little gymnastic move. But this move does not train the muscles of her body to move the way she needs them to for later skills such as getting up to a seated position from her belly.

Imagine a tight spandex mini-skirt. Now imagine that a seam is sewn half way up the middle of the mini-skirt and you have Hip Helpers. Lyra wears them for an hour or so each day as she plays on her tumbling mat. With them on, Lyra cannot do the splits, and when she can’t do the splits, she engages inner thigh muscles, which is necessary for pulling up onto her hands and knees (the four-point position needed for crawling).

Lyra first popped up onto her hands and knees by herself four weeks ago, after months of working toward that goal. Every day she does it a little more and a little more. Once she gets her core strong enough, she will crawl on her hands and knees and as far as we are concerned, she can crawl for a good long while before walking. With my older kids, I was eager for them to walk because it meant I no longer had to worry about them crawling on dirty floors. However, crawling promotes kinesthetic brain development, helping the left and right sides of the brain to interact with one another—a fundamental requirement of later learning. Luckily, winter has set in here in Ohio and Lyra’s spends most of her floor time in our mildly clean house or that of her (far cleaner) daycare provider’s house.

Other Babies

Recently, we were invited to brunch at the home of friends we go far too long without seeing. Like our Leif, their son will be four in a few months and their daughter, whom Max had not yet met and I had not seen in six months, is eight months old. A baby ready to meet the world with eyes the size of shooter marbles, she seemed both relaxed and eager and didn’t hesitate when I took her from her mother’s arms. The first thing I noticed was how taut her core muscles felt under my hands as I held her. And then she reminded me that other babies grab on with their hands, like little monkeys who won’t fall off if you let go.

Lyra has a snuggly softness to her, even though she sits up ramrod straight, because her muscles are just never as taut as those of most typical babies. Though her hands are not flaccid noodles (as evidenced by the bruises she gave me a few weeks ago when pinching the underside of my upper arm while nursing) she does not grip onto me like a little monkey.

The two boys at Lyra’s daycare who were born the same summer as Lyra are now both walking. I remember when they first began rocking themselves on their hands and knees in preparation for crawling as Lyra does now. It was many months ago. Still, when seated together on the floor, the three babies play together as any group of one-year-olds will. Which is to say mostly parallel play with occasional toy snatching.

Hypotonia Is Everything

Low muscle tone. It is why Lyra does not hit the typical milestones. However, her muscles can be trained and they will get stronger. “The first two years with a Down syndrome baby are a lot of work,” Lyra’s current physical therapist told me and she’s right. As her parents, it is our job to make the work of Lyra’s muscles strategic, so she strengthens the right muscles and learns the best techniques for mobility, grasping, speech and feeding.

Twice a month, Lyra sees a team of therapists at Akron Children’s Hospital. The occupational therapist helps Lyra with her fine motor skills, things such as stacking rings on a stick, placing toys into a container (Lyra mastered getting toys out of containers long ago) and using that oh-so important pincer grip. The speech therapist helps us strengthen and organize Lyra’s mouth, using various tools and techniques, but Lyra is most happy when her speech therapist sings with her. On her last visit, Lyra said “down” repeatedly as her therapist sang “The Itsy-Bitsy Spider” while Lyra followed along, watching the therapist’s face. Lyra held the therapist’s hands, pulling them down with the rain that washed the spider out.

And, of course, Lyra receives physical therapy. We were able to see the ACH physical therapist before there was availability in what they call the “Infant Block” of all three back-to-back therapies. Since she first sat up on June 27, Lyra has made tremendous progress and I credit this progress to what we have learned in physical therapy. We’ve had to repeatedly change our goals for Lyra as she keeps meeting all that we set for her.

Another physical therapist comes to our home about every two months. The State of Ohio funds outreach programs for what they term “medically handicapped children” and with Down syndrome, Lyra qualifies. The benefit of home visits is that county physical therapist looks at the home setting, and can make unique recommendations. For example, last time she was here, she showed me that the tumbling mat that Lyra plays on is perfect, when folded in half, for Lyra to kneel next to with her knees on the ground and her arms on the mat (a variation of the four-point position).

Last year, Lyra worked for many weeks on rolling first from her belly to her back and then the reverse. Today she flips herself over and up whenever she wants, including the middle of a diaper change when it is entirely unhelpful and I have to remind myself of the time spent working with Lyra on her first major mobility acquistion. Eventually Lyra will master all the skills of mobility. And she will talk, feed herself, hold her pencils in a perfect pincer grip as she does her schoolwork. Someday conjuring the time once spent helping Lyra acquire the mastery of her body will be as abstract as remembering the work it took to successfully consolidate two full households into one, also a two-year gambit.

Keeping Calm

All of this intervention, of course, is only helpful if we incorporate it into as much of Lyra’s daily routine as reasonably makes sense. Most of the time I feel like we do a passable job, with some weeks better than others. Oh, sure, we bought a $150 speech kit at the NDSC convention last summer and other than taking out the honey bear cup (which facilitates drinking from a straw) the kit sat unopened and the two-hour video unwatched. For over four months. Recently, I took the kit along to Lyra’s speech therapy session. The speech therapist was delighted to explore the kit with us and showed me which items we should be using and how to use them. And then she asked if she could borrow the video. “Oh, please do!” I told her, thinking somebody should watch it (guilt bomb that it had become) and then maybe I could crib her viewing notes.

And that is how it is, we do what we can, we see steady progress and we let go of the milestones. Or, as I wrote in Fully Human and Needing a Civil Rights Movement, we remind ourselves:

The goal of early interventions is not to speed up the achievement of developmental milestones; the goal is to learn the skills correctly, which is much easier to do than it is to unlearn incorrect patterns that a child has developed as compensatory techniques.

Great, got it. Check. And then we visit the doctors.

“Can she go from belly to sitting on her own yet?” No.

“Does she forward crawl on her hands and knees?” No.

“How about on her belly? Forward belly crawling?” No.

“Can she pick things up with a pincer grasp?” Maybe. Sometimes? I don’t know.

“Does she sing with you?” No. But she loves music!

“Is she cruising furniture?” Definitely not.

“Is she making p/b sounds?” I don’t know!

I know these questions, asked at well-baby pediatric visits and at the Down Syndrome Clinic, help assess Lyra’s skills in order to set goals, but as I answer the litanies, I shrink inside. We have to have goals, I understand. But the line between working towards goals and attempting to speed up the achievement of milestones can seem porous. Even Lyra’s pediatrician, Dr. M, who has a daughter with Ds, will highlight other children with Ds who have hit milestones at early ages, Someone did this, this and this and their child was walking by eighteen months. Well, what if Lyra isn’t? Is she a diminished child? Am I a derelict mother?

Age and Experience

Were Lyra my first child, maybe we would do everything for her that we now do and feel confident in our efforts. More likely, however, I think I’d be a basket case, never feeling like I was adequately working with my daughter and that her entire life’s happiness depended upon my ability to maximize early interventions. Questions about milestones from strangers and even friends might make me feel antagonized.

But Lyra is not my first child. I am older and have raised four reasonably well-adjusted boys. When I was a young mom, I learned something from my homeschooling friends that has served me well: Focus on outcomes. For example, in annual testing, Waldorf educated students don’t score at the same level as public school students, they generally score lower. But by the eighth grade, they generally score higher. Furthermore, Waldorf graduates often approach learning differently than their publicly schooled peers, having come up through a system that teaches the whole child, meaning not only their heads, but also their hearts and bodies, how to learn. The Waldorf pedagogy, which does not aim for testing outcomes grade by grade, seeks and often succeeds in cultivating an inquisitiveness that the students carry on to their subsequent endeavors.

This intense period of training Lyra and her body, strengthening her muscles, developing the correct skills will someday result in it all coming together. She will walk, talk, use utensils and much, much more. Whether this happens at 18 months, 24 months, 36 months, or even longer is not what is relevant. What is relevant is that she will, at her own pace, fully acquire all these skills and more. I know this because raising my boys trained me to trust my parenting instincts.

The Recurring Message

Funny thing, timing. As I worked to finish this essay, another mother of a child with Down syndrome shared this academic article from Britain, which compares responsive teaching to early intervention for children with Down syndrome. Looking at several studies conducted since the 1980s, researchers have found that babies with Down syndrome whose engaged mothers responded to the child’s initiated communication and activities scored higher on developmental testing than did the children whose engaged mothers generally tried to teach their babies something new (the poor babes with unengaged mothers, or ignorers, fared as badly as one would expect). Or put more simply, when the child directs the communication and activity, development is greater than when mom directs the communication and activity. Stop talk, talk, talking and start listen, listen, listening. Instead of “And now today we will learn this or that, little person,” observe your child’s interests and work from there.

Again, this dovetails the Waldorf pedagogy, which was thoroughly developed to meet children where they are with educational instruction. From the outside, a Waldorf education may look like not enough is being done soon enough to give a child the skills necessary to succeed. But as a bee cannot access the pollen of a closed bud, forcing open the blossom of a child’s mind is surely not a healthy path. Responsive communication, meeting children where they are, encourages engagement and, therefore, greater communication. Not surprisingly, this same article highlighting the greater level of success in responsive communication over a top-down early intervention approach in the developmentally disabled population points out that the same results were found in similar studies of typical children.

Our interventions with Lyra, and our the therapists who guide us, apply this approach. When Lyra babbles, we babble the same sounds back to her (she loves this), teaching her words as they naturally arise, such as “more?” and “please” when feeding her. We play with the toys she’s interested in and use them to encourage her movement. We fill small cups with her favorite snacks, which requires her to reach in and pick them up with her fingers rather than raking them up off of her highchair tray. And we do all of this occasionally, some days more than others.

What We See

Lyra pivoting in her high chair and leaning over the side with her attention riveted on Leif, seated next to her in his toddler chair, as he chatters away at the dinner table.

Lyra raising up her arms when we come close, letting us know she wants held.

Lyra taking her pajamas, diaper or whatever clothing she finds on the floor and moving them over her body as though she is trying to dress herself.

Lyra consistently and appropriately using the American Sign Language signs for “please,”  “more,” and “hi.”

Lyra enthralled with every moment of back-to-back Kindermusik classes (hers and Leif’s).

Lyra at the window on the Polar Express waving and saying hi for ten minutes to all the people dressed as elves at the “North Pole” (a.k.a. Peninsula, Ohio).

We see a bright little girl who calls us dada and mama and who is engaged with her brothers, her daycare provider, playmates and anyone else she happens to meet. Regularly, I watch Lyra observing other people in a manner that I can only describe as keen. She takes things in. Will we notice cognitive delays when she is older? Probably. If so, we will support the development of her cognitive skills just as we have her physical development. Our goal is not to get her, or any of our children, a Mensa IQ. Our goal is to raise happy, engaged and productive humans who find value in the lives they lead and who approach the world with curiosity and compassion.

Author Richard Ford once said, “I’ve chosen a life smaller than my ‘talents’ because a smaller life made me happier.” This is not to advocate mediocrity per se, but a higher level of being that takes into account multiple aspects of existence beyond external assessments of accomplishment.

We can only know ourselves through our interactions with others. The proverbial wise man on the mountain may have to confront his hunger, the elements, and certainly boredom. But he will not truly know himself until he is among other people, comparing himself to them and observing his own responses. We compare Lyra to other children from time to time, it’s inevitable. And it helps, me at least, keep a perspective on Lyra’s journey.

Other people compare Lyra too, giving us an added layer of interaction with the rest of humanity. We know this because no matter everywhere we go, people go out of their way to tell us how beautiful she is. They come out from behind counters at shops and gas stations, waitresses who are not tending our table make their way over in restaurants, strangers stop me on the street. This may sound harsh, but I really don’t think Lyra is beautiful, at least not in the conventional sense. Her eyes are small and prominent in her face are the characteristic features of Ds. Each time these unsolicited compliments are paid to Lyra’s beauty (always the adjective beautiful, none other, though if they talk a long while they inevitably also call her adorable), I want to ask if in so saying do they mean I see she has Down syndrome? And are giving some type of encouragement? I don’t know because I’ve never asked. I suppose their intention, regardless of the inspiration, is kindness.

I hope they will feel the same way when Lyra is an adult.

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By Any Other Name

I was named Holly Christensen at birth. Seven years later, I walked into a courthouse in Toledo, Ohio with my mother and her second husband of two years. I came out Holly Slusher. It was the early seventies and along with a name change, my official birth certificate was permanently altered deleting my biological father from all records and replacing his information with that of Mr. Slusher.

When I was nineteen, my mother and Mr. Slusher, both of whom had long been involved with the parties they would each later marry, divorced. Afterwards, my stepfather and I saw each other on occasion and then without incident, sometime in my mid-twenties, we stopped. Around that time, I went to the courthouse in Columbus, Ohio where I was a student at Ohio State, and changed my name back to Holly Christensen. I did so not as a repudiation of my stepfather, though Slusher was easy taunting fodder throughout a childhood where I was frequently the new kid, but because Holly Christensen is my name.

In reclaiming my name, I staked out my allegiance, some small sense of belonging to my historical past, while self-determining my future. If ever there was an adult in my life who made me feel wanted and loved, it was my grama, Dorothy Christensen. She always claimed me as hers, even when she wasn’t happy with me. There was nothing that could have caused us to lose contact with each other—neither miles nor time apart. Even now, nearly seven years after her death, I talk to her in quiet moments when I am alone.

As an adult, I have never taken a man’s last name. I never will.

Naming Children

My first litmus test in naming my children has always been the French pronunciation. Anyone who suggested a name immediately heard me pronounce the name with a French accent and, when possible, a French translation. You say Monica, I say Monique. You say Stephen, I say Étienne. I did this because, in my opinion, most words sound better in French than they do in English, especially names. All names, in fact, except for my name, which is unfortunately pronounced, “Oh-Lee,” sounding not unlike a call for pigs to slop.

Traditionally, the Sioux Nation would not name a child until the child revealed his or her true nature, often only when they were several years old (and the name could again change, later in life, if and when the person changed). Until receiving their first name, Sioux babies were given generic placeholder names identifying their birth order. Such a system would have saved me three times from the pressure of turning a birth certificate in a timely manner combined with the anxiety that the reluctantly agreed upon name was wrong for the child.

Boy One

Boy One

In most name books, Claude is typically defined as “lame,” which is direct reference to the Roman emperor, Claudius. Claudius was dismissed by many in his family because a childhood illness had caused him to limp and left him partially deaf. Fortunately, my Claude, a serious distance runner, has strong legs, but for years he felt crippled by dyslexia. Emperor Claudius overcame his limp in his teens and proved to be an astute, if not provocative, historian. My Claude overcame his learning disability through dogged discipline, and earned entrance and substantial scholarships to a great university. Meeting the challenges of his one-time affliction may well have shaped Claude into the young man he now is—tenacious, hard-working and concerned for a society that is fair and just for all its citizens (a concern that grows with each political science course he takes).

Claude’s name was chosen before his birth, but holding him in my arms, I felt instantly that Claude was not the right name for my newborn son. My ex-husband dismissed my emotional pleas to talk about a different name as Simply a problem with your postpartum hormones, Holly. You agreed to the name, you lived with it for five months. We are not discussing any other names. Two years ago, I found a letter I had written to my ex-husband in the weeks after Claude was born. In it, I wrote what hurt the most was that rather than discuss my concerns about the baby’s name, he instead walked out of the room each time I brought up the subject. At the county health department, where we turned in the paperwork for Claude’s birth certificate two weeks after his homebirth, I remained in the car with my baby, sobbing with hollow heartbreak. I wanted to name him Luke.

Boy Two

Babies_0001Hugo means “bright mind and spirit,” which my Hugo certainly has. He is also huge in all that he is and does. At each preschool parent-teacher conference, Hugo’s teacher, Miss Peg, would tell me, “We’re trying to get Hugo to calmly ask his friends to stop doing something he doesn’t like instead of yelling right away.” Twelve years later, we are still working on that. But when happy, Hugo is equally demonstrative and at such moments will often throw his arms around me, pinning my own arms to my sides, and swing me around the kitchen until I tell him to “Put me down!”

Those of us who live with him have long observed that Hugo functions best when busy enough to keep him on his mark. Like a rubber band stretched just far enough so that it can fly across the sky. Occasionally he allows his schedule to stretch him to the point of breaking, and when he does, Hugo snaps at all who come near, often screaming at me not to yell at him when all I have said is something like, “The clothes in the living room that I told you to pick up yesterday are still there, go and get them now.”

Or, he will yell, “Jesus Christ, Jules, do you have to make your lunch in front of the damn coffee machine? Some of us haven’t had our first cup yet!” (Yeah, we noticed.)

Yet this same child makes me laugh harder and more often than any other. He has always been nostalgic and even back in the days of Miss Peg, he remarked regularly on the fleeting passage of time. And while Claude and Jules regularly vanish in the ether of their thoughts, Hugo keeps record of life’s details, albeit from his particular perspective. He now combines these traits to retell humorous stories from when he and Claude were little, most often tales of when they were naughty.

There was that time when Claude was about 12 and he was standing in the hallway outside our bedrooms and he called you a bitch and you heard it all the way down in the basement because the laundry shoot was open and you yelled up, “What…did…you…call…me?” and started stomping up all four flights of stairs and Claude just stood there frozen, unable to move and I was scared too even though I hadn’t done anything wrong and you just stomped loudly up the stairs, but not fast, while Claude stood there panicking and I stood in the doorway of my room watching him, neither of us could move and when you finally got to the top of the stairs you got right in Claude’s face and again yelled, “What did you call me?” and Claude said in this meek little voice, “A bear?” and you roared in his face like a bear and, I swear to God, I thought he peed his pants and I was so glad I wasn’t him.

When Hugo’s in trouble or avoiding work I’ve asked him to do, his trump card is to pull out his guitar and sing one lovely ballad after another. Our house has a central stairwell, which functions as an acoustic chimney. When Hugo sings and strums, music fills every room and brings levity to all the inhabitants.

Huge passion, passionate Hugo. I wanted to name him Oskar. I’m glad he’s a Hugo.

Boy Three

Jules means “youthful, young.” Jules is not like anyone else I have ever known and, as such, is the hardest child to describe. I only wanted two children (yes, it’s true, zero growth and all that) but when Hugo was two years old, my ex-husband campaigned for a third baby with all his potent skills of charm and subterfuge. At the time, I assumed my ex’s drive for a third child could be traced to the fact that in his own family he was the third child. Now, however, I believe he presaged, presumably subconsciously, that when I was no longer in what many mothers think of as “the baby fog,” I would escape. Which is exactly what I did when Jules was six.

However, if for nothing else, I am undyingly grateful my ex-husband crusaded for the baby who is Jules. An easy baby and ethereally beautiful toddler, he came into this life rolled in pixie dust, or so I’ve always said, and for years I was uneasy about him being more than an arm’s reach from me in public.

“Jules is not the angel you think he is,” Hugo has told me on more than one occasion.

“Yes, I am,” Jules has quickly responded at least once.

“Yes, he is,” I have told Hugo every time. Jules slinks out of chores, forgets to brush his teeth or make his bed, gets caught lying on occasion (mostly since becoming a teen)—he is human. But consider this: Claude, Hugo and I have potty mouths. There is no denying it, nor does it seem a habit we can change. We’ve tried swear jars, but Hugo only steals the money and we all continue swearing. Jules, however, never, ever swears. Like a lotus blooming in a quagmire of sewage, it’s just not his nature and he rises above it.

At school, where he is now in the seventh grade, Jules continues to interact with all the students in his class—the boys and the girls, those for whom things comes easily along with those who struggle. The one deal breaker for Jules is meanness. It has always been so. When Miss Peg was his preschool teacher, Jules’ closest friend would not stop smashing anthills on the playground. For months, Jules tried to convince his four-year-old best buddy to stop killing the little worker bugs and to watch them instead. All to no avail. Finally, Jules told the boy he would no longer play with an ant-killer. From that day on, Jules never spent time with, nor really spoke of, that child again.

Jules engages the world with the openness of an infant and the wisdom of a rinpoche. He has a patience uncommon for one so young, making him an accomplished birder, chef, and, in the past few years, big brother. I wanted to name Jules after a great Ohioan from the Shawnee people, a political leader who also possessed the gift of prophecy. Jules’ father scoffed at the idea and so instead I suggested Theo, godly, even though we are Buddhists. I lost that battle too. It is no secret that I was uncomfortable with the name Jules for many years. Jules himself had difficulty pronouncing the name until he was nearly six and people thought he was saying either “Juice” or “Jews.”

Three years ago, he took the Shawnee leader’s name as his spiritual name.

Boys Two, Three and One

Boy Four

Leif’s name was pre-ordained, Hugo the conduit of the message. Twelve years old at the time and standing with his hands on his hips, he told Max and me, “Claude and Jules are just alike. They look alike, they act alike, they both have dyslexia. This baby boy is going to be like me. I am going to raise him in my own image and I am going to call him Leif!” (Don’t think we don’t remind Hugo of this whenever Leif’s behavior is less than ideal. We do. Hugo grins.)

We had waited as long as we could to tell the boys I was expecting because even though I had left their father three years earlier, the divorce continued interminably. The juxtaposition seemed less than ideal. “This is the worst thing that could happen to your children, all the literature says so!” said the therapist I had been seeing for many years, including marriage counseling with my ex-husband. I credit this therapist for helping me to see my own role in my marriage, one I was groomed for by my upbringing. Until I saw the script I was living, re-writing my life was not possible. But like many women, she too was vulnerable to my ex-husband’s charm and only recognized his narcissism after I left him and he no longer hid his deeply hostile nature.

“Leif is a wonderful name!” said Claude’s former teacher at the Waldorf school when I introduced her to our newborn son. “In Norse mythology, Lif and Lifthrasir are the two human children who survive Ragnorak, something like an Armageddon, and repopulate the world. Both names mean life!” Leif cemented our new life. With his birth, my boys became officially related to Max, the father of their brother. If ever they wondered, and what children of divorce don’t, Leif’s existence gave my boys the certainty that Max was more than a passing fancy of mine.

Once upon a time, before Leif was conceived, Max told me that while he thought he’d be a good father, the opportunity never presented itself. “Your boys are all I need,” he said and I believe we would have lived an equally full life without producing more children together. But it would not have been the same. I suspect we would have continued maintaining our two households rather than merging together in a house right out of my girlhood dreams. Which means Max would not be with us every night, dependably available for homework help and bedtime stories (he’s currently reading Inkspell to Jules while Leif is stuck on repeat readings of Moody Cow and Katie the Caboose). Max probably wouldn’t take off work to go to the high school with me to argue for Hugo to be placed in a better English class. Nor would he be there to drive the boys at all hours of the day and night to places near and far for their school and social activities. Our lives would have been parallel pieces of fabric serged together where they overlapped. With Leif, and later Lyra, our seven lives have been wafted and wefted into a textile, the detailed pattern of which we have slowly come to recognize. Without having been here before, it feels like coming home.

I doubt that the therapist who disparaged my pregnancy as damaging to my existing children was ever a mother herself. Had she been a mother, she would have congratulated me (I didn’t say I was trying to get pregnant, I said I was pregnant) and then advised me on how to prepare my boys for their new sibling. But I was a mother and I did know how to proceed with my children. For starters, I never saw that therapist again.

Girl One and Only

“How did you come up with the name Lyra?” we are asked all the time. Quite simply, I found it in a baby name book. The last few months of my pregnancy, when the summer was vexatiously hot, I would take Leif to Barnes and Noble. As I sat in the children’s department next to the Thomas the Tank Engine table, Leif played happily for an hour or more. While he did, I paged through baby name books taken from the shelves on our way back to the trains.

After pining for a daughter for nearly twenty years, it’s surprising I didn’t have a ready list of names. I had but one. Arabella is a name I have loved ever since reading Thomas Hardy’s dreadful Jude the Obscure. While the main characters, Jude and Sue, whine chapter after chapter about their unhappy lives, Jude’s coarse and lusty wife, Arabella, unapologetically takes what she wants and discards what she doesn’t. When the world is the straight, white man’s oyster, where those same men get to define the ideal woman as tubercular in aspect, fearful of sex and wracked with guilt—a brash character like Arabella is a feminist heroine. Arabella means “beautiful lion” and having been born in August, our beautiful girl is indeed a Leo.

The problem with Arabella as a first name is that in the twenty years I have been naming children, Bella has become popular to the point of common. It is today what Jennifer was when I was a girl. I like names that are both familiar yet uncommon. So instead, for several weeks in the middle of the pregnancy, we lived with Pippen Violet or Piper Violet. Until we learned of a couple nearby who had a daughter Leif’s age named Piper Violet. Really? Same first and middle name? Too weird. We started looking again.

Lyra, Lyra, Lyra (pronounced lie-rah, not leer-uh), I let the name roll in my mouth that day in the bookstore when I was seven months pregnant. It means musical as does the more popular name “Lyric.” But in that watery well of pregnant connection to my little fetus, I felt my girl’s name must have soft syllables. Lyra. It was only after texting the name to Max did I remember the heroine from Philip Pullman’s novel for children, The Golden Compass. Lyra Belacqua, a quick-witted girl raised in a college at Oxford University, who generally runs wild with the local children and sees little problem in spying on, and lying to, adults. When one of her friends is kidnapped, Lyra sets out to rescue him and the rest of the story is a fantastical tale of adventure and loss.

The entire family listened again to the story on CD and by unanimous vote decided to name our girl Lyra Arabella, though I fear Lyra will grow up believing her middle name is Jane. This is because when my children are babies, I find a short refrain, unique to each child, which I sing to them. For Lyra, I have adapted the American folk song, “L’il Liza Jane.” During blood draws and contact lens cleanings, when she’s sleepy and when she is fussy, she calms and directs her attention to my voice when she hears, I’ve got a house in Baltimore, little Lyra Jane. Fancy carpet on the floors, little Lyra Jane. Oh, my Lyra! Little Lyra Jane!kidsinOrchard

Revelation

“I’ve long had a name for you,” my husband said to me as sat across a table from me drinking his second vodka martini. At first he refused to tell me what it was. We were in the emotionally gooey weeks just after I had announced the need to separate, but had not yet figured out how.

“You can’t tell me you’ve had a name for me and not tell me what it is,” I said, knowing he would. He wanted to tell me, why else would he have brought it up?

“It started when Hugo was a baby. I’d come home from work and see you with him and think, There she is, Depression Kitty.”

Hugo’s birth, which included ten pounds of baby and shoulder dystocia, would have ripped up my lady parts had I been in less capable hands than those of my midwives. Two days later I developed a uterine infection with all the gross symptoms of sepsis on the move.  Powerful antibiotics were given and gratefully taken. They coursed through my blood stream and my breast milk, trashing the delicate bacteria growing in Hugo’s intestines. His first three days of life, Hugo’s eyes were swollen shut from having his head out of the womb for several minutes before his body could be delivered. By the time his eyes opened, he writhed with gut pain and remained severely colicky for the better part of his first six months.

Anyone who has lived with a colicky baby knows calling it torture is neither flip nor satiric. Sleep deprivation diminishes clear thinking, while each thought is splintered by the constant cries from the squirming baby who, if not in your arms, is never far away. Anxiety over the baby’s health is constant, as are jangled nerves. Living with a colicky baby for a short period of time can make a perfectly healthy person depressed and many medical professionals treat parents of a colicky babies accordingly. A colicky newborn has caused more than one couple I know to stop having children.

At the end of the long days with baby Hugo, I hoped for relief from his other parent. Instead, when he came home from work, he seemed angry with me. Which I told myself couldn’t be the case and for even thinking it, I ladled guilt onto my raw emotional state.

But he was. My necessary and unceasing attention to our colicky baby (along with three-year-old Claude, my other constant companion), detracted from the attention I could give the man of the house. When I needed support, I was given anger. When I needed comfort, I was told I was depressed and should consider taking something for it.

In an Instant

“I think I may be depressed,” I told Max, who had been my friend for years but my lover for only six months.

“Well, maybe,” he said, holding me in his arms on an autumn afternoon. Through the doors of the Juliette balcony that overlooked a small, forested yard, two extruded trapezoids of golden light cast themselves along the foot of his bed where we were lying. Dust motes floated gently in the illuminated spaces.

“Let’s see, you’re grieving the loss of your grandmother, you’re going through a long and bitter divorce, you’re in graduate school, you’re raising three children and you hardly have any money, so you clean houses in your so-called spare time. These are some of the most stressful things anyone can go through,” he said and I tried to respond.

“No, wait a moment, let me finish,” he said softly, kissing my forehead as I remained curled next to the length of his body, my head on his shoulder, my face relaxed in the soft flannel of his shirt. “Your kids are doing well, in spite of everything, because you keep them your priority. You’re getting As in grad school while enjoying your coursework, and you’re paying all your bills. All the while, you have been actively working through your grief and dealing as reasonably as anyone could with an unreasonable divorce process.”

I hadn’t thought of it that way.

“It seems to me you are a person under a tremendous amount of stress and you are managing it better than most people would. I am so impressed by how you handle it all.”

The therapist whose unconscionable reaction to the news of my pregnancy had once told me something useful: that no matter how long an emotional or psychological injury had lasted, no matter how deeply it had wounded, healing could happen in an instant.

Just as I reclaimed my birth name as a young woman, that afternoon with Max I rejected an unspoken and insidious appellation, worn for more than a decade like a musty woolen cloak placed over my head and shoulders. It simply was not me.

A Rose Is a Rose Is a Rose

Do names have the power to alter experience? There are some studies that conclude, yes, they do. How much? Probably not a lot, particularly if you have a somewhat typical name.

What seems more important is how we are treated. Recently, Hugo and I were listening to an NPR report on birth order. Firstborns, which Max and I both are, tend to have greater professional, financial and other successes in life than their younger siblings. The reasoning for this is that firstborns tend to receive the full force of their parents’ attentions and expectations. Subsequent children often get a watered-down version.

“You’re getting the same package as Claude, you know,” I told Hugo as we stood there in the kitchen next to the radio. “So don’t think the bar is any lower for you than it was for Claude when he was in high school. It’s not.”

“Oh, I know!” said Hugo. He went on to say that anyone who needed to motivate their kids should send them to me. Please, no. I’m busy enough with my own offspring right now. Hugo’s lifelong pushback on my pushing is far less than it was even a year ago. He’s now close enough to finishing high school that he is thinking about college and a career. And he’s mature enough to show gratitude regularly and without provocation.

“Hey, you know what, Mama?”

“What, Hugo?”

“I love you!”

“I love you too, Hugo. Now put me down, please.”

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Best Laid Plans

6:30 a.m. On a Recent Saturday Morningphoto 

“You’re a good mom,” said Max.

“Yeah, okay, right. But I need more balance. We all do.”

We were in the parking lot at our local Starbucks and had just decided that I would, as previously planned, take all three of the younger kids to the Toledo Zoo, a little over two hours away. The Ohio Young Birders Club was holding its annual conference at the zoo and I had registered Jules and myself earlier in the week when it seemed a perfect plan for everyone. Max, who had an important work deadline, could do what he needed without feeling guilty for going into the office on the weekend. Jules, the consummate birder, could have a day devoted to his passion. And the little tikes and I could wander around a zoo. Win-win-win, we all agreed. In order to arrive in time for the pre-conference behind-the-scenes tour of the zoo’s aviary, we had the alarm set for five a.m.

3 a.m. A Cat Purrs Me Awake

I looked around the bed for Boggart, our faux Himalayan cat (when he was a four-week-old flea vehicle in danger of developing anemia, I took him from his feral mother, an all-grey tabby who roamed our neighborhood), who is as big as our shelties and the color of a mocha latté. Max and I each brought two cats into our relationship, but only Boggart remains in the house because he, unlike the other three, continues to behave himself. Preferring to sleep with Hugo, as he has for all his eleven years, Boggart rarely comes to our bed, but his size and color make him easy to spy when he does. When I didn’t see him, I slid my hand towards the purring until my fingertips brushed upon the fur of the cat I couldn’t see, a calico of the dark, tortoise shell variety.

“Segovia’s in our bed, Max,” I said, waking Max who took her outside. You may reasonably wonder why I didn’t just cart her off myself. And I’ll tell you: because she’s mean. The only person she allows to touch her is Max. (Her meanness to all sentient beings and her love of shredding furniture are what earned her placement in the resettlement program to the garage and great outdoors).

Max returned to our bed and as soon as he’d pulled the covers back over his shoulders, he resumed the measured breathing of sleep. Even though I’d been exhausted all week, even though I hadn’t gotten to bed as early as I had wanted the night before, I was wide awake. Two hours remained before the alarm on Max’s phone would emit the sounds of gently strummed chords. Pressured by the limited time, every moment felt like an onerous taskmaster who chanted, You must sleep, you must sleep, if you don’t sleep you’ll be too tired to drive, you must sleep, you must sleep. I took ibuprophen for my sinus headache, I focused on my breathing and I thought of what I needed to do not just tomorrow, but in life, before my children are grown, before I am no longer able, before I die. Anxiety easily owning the pre-dawn hours when only my irrational mind is awake.

Nearly an hour and a half later, sleep and I reconnected as if finding one another on an elevator gliding down to the less knowable parts of my thoughts.

4:30 a.m. I Dream of Leif

Somewhere, Leif is scared, crying out and I don’t know why. In my dream I run to him, calling for Max when suddenly I pull myself up, awake.

“Max, Leif’s crying,” I said, shaking his arm, and Max quickly went to comfort Leif from what I assumed was a bad dream. I hoped to sleep just a little longer, long enough to take the edge off the fatigue that felt more like I’d just gotten to bed rather than soon needing to rise. But Leif continued to cry. Max shut our door to the bathroom that connects Jules and Leif’s room to our own. Something’s not right I thought. Lifting my body from the bed, I lumbered ungracefully to the bathroom.

“Leif threw up,” said Max, “Not much, and he doesn’t have a fever, but we needed to clean him up.” Leif’s sheets were not spared either, and so, once he was washed and in fresh pajamas, we took him to our bed. For twenty minutes I slept with Leif in my arms, his pale face on my shoulder, the silken softness of his hair on my cheek, which rested on the top of his head.

Five a.m. Time to Get Up!

“I’m hungry!” said Leif when the alarm went off. That’s a good sign, Max and I agreed, and the two of them went down to make coffee and get Leif a bowl of cereal. I took a shower and while I was dressing, Max brought me a cup of coffee.

“Leif threw up again, I need to get him new clothes,” said Max.

“Should he go to Toledo?”

“I don’t know. He doesn’t have a fever, he’s cheerful and he keeps telling me he wants to go to the zoo. He’s holding a bowl in case he needs to vomit again. Why don’t I go to Starbucks and get those breakfast sandwiches while you finish getting ready and we can decide when I get back?”

Six a.m. We All Go to Starbucks

Starbucks doesn’t open at 5:30 on the weekends, so Max returned home empty-handed. Jules, who purposely had showered gone to bed in his clothes the night before, was ready three minutes after I roused him. When I had Lyra dressed and a bag packed with everything I thought we needed for the day’s adventure, the kids and I piled into the minivan and Max followed us in his car.  Leif willingly, almost cheerfully, carried his small plastic barf bowl. The five of us crowded around a café table meant for two with our breakfast sandwiches, Lyra eating every bite of the custard-like egg I gave her.

Unclear Decisions

What’s the right decision? In the normal course of life very few decisions, in my opinion, are absolutely right or wrong. Assess a situation, consider the options and attempt to predict the eventual outcomes, though nothing is ever fully predictable. But there are times, and this was one, where the prognosticating information was dubious. Was Leif really sick or, as so often happens with kids, was it one of those cases where having thrown up he was fine? Options: If Leif stays with Max, Max won’t be able to work nearly as much as he needs. And Leif will be very sad to miss the zoo. If we all stay home so Max can work, Jules would probably understand, but feel disappointed. I hate disappointing Jules, who so rarely disappoints anyone (quite literally to a fault and on the rare occasions when he gives me teen push-back, I secretly cheer). Or, I could carry on as planned and hope Leif would not throw up again or, if he did, that he’d accurately hurl in the bowl.

This was the discussion we had while I drank a red eye (coffee with a shot of espresso) for the extra punch of caffeine. Was he really sick? He seemed fine. In the end, there was no way of knowing and I was too tired to tease out all the options any longer. Other parents may have erred on the side of caution. For better or worse, I erred on the side of adventure as I often do.

“We’re going as planned. But we need to go now if we are going to get there in time for the aviary tour,” I said. Max helped me load the tots in the car. My head, well acquainted with garden-variety tension headaches up to eye-popping migraines, had been experiencing a novel form of pain devised by a pernicious sinus infection for which I’d only begun taking antibiotics the day before. The infection still remained in control of what felt like a lead ball rolling in the space behind my eyes, smashing the pliable grey matter to the inner surface of my skull. I imagined a cross section of my brain would look like a fat letter “C,” like the plastic ones kids put on the refrigerator when learning to read. Meanwhile, under my scalp the muscles squeezed the boney plates in equal measure, like some sci-fi shrinking helmet. My skull felt as if it would disintegrate into an anthill of bonemeal. I had managed the previous week with Sudafed and nasal spray, but nothing completely stopped the pressured pain.

Looking Good, Holding Steady

Lyra was asleep before we’d pulled out of the Starbuck’s parking lot. Ten minutes later, as we queued up to get on the toll road, I looked back at Leif. With his barf bowl still in his lap, his head was tilted back and his jaw hung open. He had passed out. Jules, however, stayed awake and chatting with him helped me focus as we drove in the dark. The babies slept, we made good time, and easily found the zoo.

The Toledo Zoo is striking for its modern exhibits on a campus filled with WPA buildings and statues. We were told that the zoo has more WPA buildings than any other single institution in the country. I’ve long loved the iconic look of the art and architecture built in the 1930s under Roosevelt’s public works program. The conference was held in one such building, a former science museum, far from the parking lot. Hurrying so we could catch the aviary tour, Jules pushed Leif in the stroller while I carried Lyra in my arms. It was chilly, but the forecast predicted warmer weather and as we dashed by exhibits and playgrounds I plotted out the places I would take the little ones while Jules conferenced.

We arrived just as a zookeeper announced the last aviary tour. The large aviary is organized geographically with several rooms containing birds in cages, while in other rooms, the birds fly freely around the visitors. As so often happens nowadays, when I shared interesting bird facts with Jules, he would say, “I know,” before leaving me in the dust with an explosion of information. It is one of the wonders of being a mom that I never tire of: this young man, who came out of my body with only his instincts, is now an expert in things I know little about.

Hatchling Leif

Hatchling Leif

Leif, meanwhile, energetically gamboled about the aviary, running ahead to other rooms only to have me call him back. While Jules went into the feeding station and nursery with our zookeeper/tour guide, I stayed back with Leif who climbed into child-sized eggs, in a play area designed for kiddos like him. After the tour, we made our way to the conference auditorium, where Leif devoured the remaining breakfast sandwich, which I had packed in my bag. I sent Max photos of a happy Leif titled, “Hatched and Feeding.”

A Real Conference

Because I do not have the time to investigate much else than what is in front of me, I had not looked closely at the conference schedule. I had assumed that we would hear some interesting talks given by adults who work with birds in some professional capacity—ornithologists, conservationists, park rangers, zookeepers. But in the opening remarks, the director of the Black Swamp Bird Observatory, the organization who founded the Ohio Young Birders Club and hosts the annual conference, explained that it was young members who were presenting papers that day. She proudly went on to tell us that one of their former members recently had a paper accepted in a peer-reviewed scientific journal. And that is the goal of the conference, to give these young birders an opportunity to learn how to give professional presentations. How cool is that? I thought. I don’t remember the first conference I attended, but it couldn’t have been before college.

The Americans with Disabilities Act coincidentally benefits the stroller set and the last row in the auditorium had two seats next to the aisle with wide-open floor space on the other side. We quickly established a little encampment next to the two seats and with Lyra and Leif playing on the floor, Jules and I listened to the first presentation, given by a young man who had monitored a bluebird trail using weights and photography. Our day had fallen into place.

And then it fell apart.

The Other Shoe Drops

Episode One:

“I gotta go poopy,” said Leif. He’d raced ahead of me after the first talk was over and then suddenly stopped. I looked at him and I knew. It was the way he bent slightly forward at his hips. It was too late.

Telling Jules to take Lyra, I raced with Leif in my arms down a flight of concrete stairs to the basement of the building where the bathrooms were located. In a stall, I pulled down Leif’s pants and popped him on the toilet. His underwear were soiled. I removed them and did the only thing I could do: I rinsed them in the toilet of another stall before drying them as best as possible with the hand dryer. The air of the hand dryer became very hot after I’d successively hit the button five or more times. His underpants were mostly dry when I put them back on Leif, telling him to let me know immediately if he had to go again.

Episode Two:

“I gotta go poopy again!” Leif said twenty minutes later. Because we’d wandered away from the conference to look at the amphibian exhibit on the main floor, Jules was not there to help. I plucked Lyra from her stroller, which wouldn’t easily go down the basement stairs, and carried both children to the bathroom. We made it in time, but as I stood over Leif in the stall, I watched the crescent moons under his eyes darken as though they were filling with octopus ink.

Episode Three:

It was bad. The second conference presentation had just ended and I was able to give Lyra to Jules before dashing to the part of the Toledo Zoo with which I was becoming most familiar. In the women’s restroom I removed Leif’s pants and underwear, both of which were soiled.

“It’s on my sock too!” Leif pointed out to me. I removed the offending sock and began rinsing all three items in the adjacent stall. As I bent over the toilet, I could feel my heart beat in my blocked sinuses, which felt like open hands slapping water balloons filled near to bursting.

Situation assessment:

One half naked three-year-old in the bowels of an old building at the far end of the Toledo Zoo. Shit. One pain addled mom who was done sticking her hands in the cold water of public toilets. Think, think, think.

“Honey, I’m going to put one of Lyra’s diapers on you.”

“NO! I don’t want to wear a diaper! I’m a big boy!”

“You are a big boy, Leif, but you are a sick big boy and I don’t want to rinse your poopy underwear out ever again,” I said as I leaned him back on the bathroom’s diaper-changing table, which sagged under his weight. Luckily, the last time I had purchased diapers for Lyra, I had decided to move her up from size two diapers to size three, even though she was just under the cut off weight for size twos. On Leif, the Velcro tabs of the size threes met the outer edges of the diaper, but it worked. Leif seemed relieved and told me he was a sick big boy.

Standing between both hand dryers, I blew dry Leif’s pants with my left hand and his sock with my right. He watched, seated on the sink counter near the dryer that warmed his sock. Hot air filled the sock. “Look, your sock looks like a foot!” I told Leif and he giggled. When the clothes were dry enough, I dressed Leif and we rejoined Jules and Lyra.

Near Normal Afternoon

 

Leif did have one more accident, but because of the diaper, none of his clothes were soiled. After lunch, which he did not eat, Leif fell asleep in my arms during the first presentation of the afternoon. Jules and I were again seated in the back row, Lyra slept in her stroller and, for a few minutes, I leaned back in the chair and closed my eyes. When Lyra stirred, I awoke and gently placed Leif on the floor where he slept for two hours.

IMG_2494When the conference ended at 4:30, Leif had been up and racing around the main floor of the science museum for more than an hour. We trundled out of the building in our coats and in the half an hour before the zoo closed, managed to see the penguins, the tigers, a growling male lion, an enormous polar bear eating fish and a seal sleeping on an underwater ledge. Leif scampered from place to place and nobody would have guessed how sick he’d been just hours earlier.

We arrived home at 7:30, where Max greeted us with orange roughy filets he’d prepared with a miatake mushroom and herb tapenade. He handed me a glass of cold chardonnay after I’d hung up my coat and joined him in the kitchen. Leif immediately took a tubby, where he stayed for over half an hour (promising me he wouldn’t drink the bath water). Over dinner, Jules described the conference to Max, telling him that the presentations were good, if a little too long. Max and I looked at each other and said in near unison, “Sounds like all conferences!”

Nice Work

Right, wrong. Good, bad. I don’t know that I believe in those words. Rinsing poopy underwear the public bathroom in a century old basement was not what I had wanted to do that day. But there we were and what else was to be done? And the truth is, I felt so tenderly for my boy that day. Because he is three and clever, much of our relationship these days is about encouraging the kind of behavior I want from him and not the whining, tantrum-throwing, demanding behavior he’s prone towards. In his brief but intense illness, all he wanted was me and all I wanted was to be there for him. We were both our better selves.

Work? Nah. But nice if you can get it.

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Farmer Teacher

Oh, for the Love of the Internet

Yesterday, I posted a piece on fall in which I began with James Whitcomb Riley’s well-known poem, “When the Frost Is on the Punkin,” and briefly described the geometry teacher who first introduced me to that poem, if not poetry in general. Memory is a tricky thing and when I wrote that her name was Ms. Conroy it never occurred to me that it might be something else. Until after I posted. Late in the night, after turning in, I had the nagging feeling that her name had not been Ms. Conroy but rather Ms. Conrad. Shortly after pouring my morning coffee, I dug out my sophomore yearbook.

Mary Agnes Conard. Not Conroy, not Conrad, but Ms. Conard.

With her full name, my next thought was to search for her online. I Googled, “Mary Agnes Conard Bloomington Indiana” and with the literal push of a button I found a list of articles, including her obituary, on Ms. Conard. She died in 2010 at the age of 96. Four years earlier, she was the subject of an article in Bloom Magazine, a publication with the tag line of “Celebrating Life in Bloomington, Indiana.” Click here for the article and photos of Ms. Conard who, though a good bit older than when I knew her, was exactly as I had remembered and described her.

In the short homage to her life, I learned my assumptions were correct–Ms. Conard had been a farmer all her life. She never spoke of farming as far as I can recall, but her appearance along with the way she moved, pushing past pain to get to the blackboard, reminded me of my great-grandmother, Martha Swanson, who was also an Indiana farmer. Grandma Swanson died the year before I took geometry, and the comparison of her to Ms. Conard readily presented itself.

That the World May Be Different

I went to a different high school in a different state each of the four years, beginning and ending in Ohio. Two teachers influenced my learning well beyond the time I was in their classrooms. My freshman year, I took Latin with Ms. Kauffman. Before Latin, I regularly received top grades in classes I liked (English, history, art) and failed courses I didn’t care about (math and science). I loved Latin and it kicked my ass. I had to work for an A, which I finally achieved in the last grading term and the effect was pivotal. From then on, all my grades mattered to me and I was addicted to academic success.

I tried harder in Ms. Conard’s geometry class than in previous math courses, perhaps in part because I took it the year after Latin with Ms. Kauffman. However, a good part of my disdain for the subject was that it intimidated me and it seems just as likely that I engaged in Ms. Conrad’s math class because nothing about her was intimidating. Her deep wrinkles were reasonably caused by exposure to the elements, but certainly the other culprit was the way she smiled with the entirety of her face.

Children know when they are in the presence of a teacher who loves her job, just as surely as they know the opposite. In life, negatives experiences are often the easiest to recall. Most folks only remember one, two, or if lucky, a handful of teachers who made learning, if not a joy, than a task worth working for.

James Whitcomb Riley was like a rock star during his lifetime. For many years he toured the country reading his stories and poems at sold out performances. When he died in 1916, the population of the entire United States was only  a little over one million, yet more than 35,000 people passed Riley’s casket during the ten hours he laid in state. Ms. Conard was particularly fond of Riley because, like her, he was a native Hoosier.

Less than twenty years after his death, Riley’s writing fell out of favor. Today he is considered by many to be a minor poet whose work is sentimental and clichéd. But young people still enjoy him. I still enjoy him. When I teach middle schoolers, I bring his collected works with me and read his poems to the students when I can. The kids often ask me to repeat certain pieces. In fact, I don’t remember a class when they haven’t. And when autumn arrives in Ohio, looking much as it does in neighboring Indiana, I think of Riley’s autumn-praising poem and of an unassuming teacher who nurtured my desire for comprehensive learning. In so doing, she changed my world.

Again, here is the article on her life. I hope you’ll read it. Even if you don’t, click the link and take a look at her beautiful face.

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The Love of Fall

They’s something kindo’ harty-like about the atmusfere
When the heat of summer’s over and the coolin’ fall is here—
Of course we miss the flowers, and the blossums on the trees,
And the mumble of the hummin’-birds and buzzin’ of the bees;
But the air’s so appetizin’; and the landscape through the haze
Of a crisp and sunny morning of the airly autumn days
Is a pictur’ that no painter has the colorin’ to mock—
When the frost is on the punkin and the fodder’s in the shock.

 

I first heard James Whitcomb Riley’s “When the Frost is on the Punkin,” when my tenth grade geometry teacher read it to the class. Ms. Conard wore polyester dresses that looked home sewn without the benefit of a pattern, boxy garments that covered her solid torso. Often placing a fist on the top of her desk as she rose from her chair, Ms. Conard ambled as she walked to the chalkboard and looking back I suspect her hips were arthritic. Her straw-like hair was kept in what could only be described as a bowl cut and possibly trimmed with the same shears she used to cut the fabric for her dresses. Her face bore the deep lines of someone who spent more time out in the elements than indoors teaching math to sleepy teens, but the eyes in that weathered head were bright and generally merry. I suspect, though never bothered to ask, she was also a farmer. Each Monday, she wrote a new quote across the top of her blackboard and at the beginning of every class, she read us a poem. Hers was the only math class I can say I ever enjoyed and not just for the poetry; I left her classroom with the unfamiliar feeling that I had mastered a math lesson.

punkinsAs autumn stops flirting and settles in, cool weather no longer restricted to the evenings, I begin pulling out the children’s coats and hats, checking the collection of gloves and mittens to see how many pairs we have, and I think of Riley’s autumn-praising poem. In the last stanza, he says if the angels came down from heaven looking for a place to stay, he’d want to board them in the fall, when the land is color-steeped and the farm work nearly finished.

Here in Northeast Ohio, the rolling forested land affords vistas of autumn color as the trees prepare to shed their leaves. Next to the Waldorf school my younger children attend is a grove filled with maple trees. Each spring, galvanized buckets hang from taps on the maples’ trunks as the neighboring farmer collects and sugars the sap. In the fall, the leaves on sugary maples become a yellow so bright they seem illuminated from within. In 2007, the fall weather gradually cooled allowing the leaves to slowly turn. Few of the leaves had yet fallen from the trees when, in late October, the first hard frost hit. After I dropped the kids at the school, my dogs followed me on a stroll through the maple grove in the early morning light. The frost had severed the hold of the leaves, which were descending in a brilliant shower of color. But what struck me was the loud clattering noise the frozen leaves made as they knocked into each other on their way to the ground. It sounded like the snapping beaks of a large flock of geese.

Favorite Season?

I think of autumn as my favorite time of year. But I forget two things. The first is with a household of children returning to school, September often plagues us with the first, if not the worst, round of head colds of the school year. It’s particularly rampant when the youngest children have yet to master proper hand washing techniques and are content smearing the mucous “elevens” onto their sleeves. A friend once told me that if babies and toddlers were international spies, all it would take to get them to talk would be to wave a tissue and threaten a nose wiping.

The other thing I forget is the panicked urgency that comes over me as I wake each morning with a new and longer list of things to do for fall cleaning. I suspect the notion of spring cleaning arose from the days when nearly all homes were heated with wood. When warm weather arrived, everything would be pulled out and wiped down. I’ve cleaned homes that are heated with wood stoves and each load of burning lumber adds layers of ash, which float and fall upon, behind and under all furnishings. We have a gas, forced air furnace, which is pretty clean. When spring arrives, I don’t want to clean the inside of my house, I want to get dirty out in the gardens. Fall, to me, means bringing things in, including the people where we will be on top of each other for six or more months.

Working Like Ants

Until this week, the weather has been mild and we have stayed outside, putting the gardens to bed for the winter while thinking ahead to spring, bringing in the plants, such as canna lilies and lantanas, that cannot handle the hard freeze of winter. Out front, we have a large cement urn on axis with the front door. For dramatic height, I planted a red cardinal plant, which grew over four feet tall, in the middle surrounded by white New Guinea impatiens. The red cardinal is a perennial and likes wet soil, so last weekend we relocated it next to the small pond Max and Jules put in the back yard this summer (Jules had wanted to give the feathered creatures he feeds a substantial watering hole). The pond is in a garden bed next to our back porch, and for months we have been emptying that bed of hostas and day lilies so that next summer we can fill it with plants that attract butterflies and hummingbirds.

The last garden bouquet of 2013

The last garden bouquet of 2013

Last night, we harvested the last of my state fair zinnias, which were a spectacular success. On the border between the front lawn and the walkway where the cement urn is located, these tall and vibrant asteraceaes (my favorite flower family, which includes daisies, sunflowers, chrysanthemums and, yes, asters) were colorful beacons for many months. Great cutting flowers, I filled the house with cheerful bouquets of zinnias the past few months. In the night, the first hard frost of the season fell and with it went my zinnias. I have been thinking that next year I might plant pink and white cleomes where the zinnias were this year and put the zinnias in the new butterfly garden. Max originally wanted the cleomes too, but after this summer’s crackerjack crop, he is lobbying for a return of the state fair zinnias right were they were this year.

Dreams Do Come True

In May of 1996, I bought a Martha Stewart Living magazine with an article on lilacs listing varieties that bloom at different times of the year from early May through late July. Hoping I’d one day have a home with the right space and light to create such a collection of the fragrant flowering bushes, I have carted that magazine with me through at least four moves and over nearly two decades. After Max and the boys removed English ivy and anemic looking japonica bushes out front, we planted a collection of lilacs tall and short, purple, pink and variegated. And yes, blooming at different times of the spring and summer, including a Boomerang Lilac, which overachieves by blooming not only in the spring, but also in late summer. Underneath the lilacs Max planted three flats of sweet woodruff, which is a ground cover that will not snake up and choke the lilacs the way the English ivy would nor will it try to grow on the house.

Becoming Ours

The real estate picture that hooked us

The real estate picture that hooked us

“It’s not fair,” Claude complained good-naturedly when we moved into this house the summer before his senior year in high school, “I only get to live here for one year!”

My big boys all like looking at houses. I’ve pulled the car over for open houses that looked interesting, whether or not we were in the market for a home, for as long as they all can remember. In my head lived an image of the home I wanted to raise my children in: a big, but not too big, old house with lots of land, a stream and a barn. Other than not having a stream and a bit more stately than a farm-house, this house is as close to that image as I have ever found. Instead of a barn, we have a large outbuilding that includes a garage just for bikes, sleds and other outdoor toys.

This is the only house my two youngest children know and as far as I’m concerned, it’s the only one they’ll ever need to know. The rooms are sunny, the spaces flow and the doors are solid wood with brass handles. Built in 1940, each nail was hammered by a man’s arm, not a hydraulic tool. We have plenty of space, but not so much that we are ever far from each other. One of the quirks of the house is the central staircase acts like an acoustic chimney and everything sounds nearby. If asked, “Where are you?” the answer cannot be “Here,” because it is impossible to determine where “here” is. When sought out, we have all learned to identify the room we are standing in. Whether the answer is a second floor room or the basement, it all sounds the same.

For the first year, it felt as though we were living in a cool house that belonged to someone else. Busy wallpaper covered the kitchen walls, while several rooms and the hallways on the first and second floors were painted a pre-faded yellow. Old wall-to-wall carpeting was in three bedrooms, smelling of time and dry rot and, because it was white, never quite clean-looking.

Flanking the windows on the front of the house were shutters painted the taupe-green color of chicken poo. I hate that color, I’d think every time I pulled in the driveway but painting them was not at the top of our project list. Then late this summer one of the larger shutters next to a ground floor window was damaged in a storm. Max pulled it off and we realized that it covered decorative brickwork. “I don’t think these shutters are original, Holly,” said Max, “Let’s get the ladder and pull them all off!” When finished, we walked to the front sidewalk to assess the transformation. The house reminded me of a woman who scrubs off overzealously applied cosmetics, revealing a fresh face underneath. We posted the shutters on Craig’s List at $10 each and sold every single one. Three of the four purchasers bought them to make headboards for their beds, leading me to believe instructions for such a project had been posted on Pinterest. What fortunate timing!

Formal Versus Fruitful

The previous owners had professionally landscaped the yard and I’m glad they did because I would never put that kind of money into a yard, yet we enjoy many of the results. The backyard was graded and filled with healthy topsoil. An underground watering system was installed in all the flowerbeds and the back lawn, not unlike a golf course. However, the plants in the flowerbeds seemed more appropriate for landscaping an office building off an interstate highway, shade loving hostas and rhododendrons withering in hours of full sun. And while the dogwood trees in the front and the rows of sweetbay magnolias in the back add a stately appearance to the yards, there was no whimsy to be found. Long before Max and I became lovers, I told him how all my gardens, no matter what I do, become riotous, a furzy mélanges with all the plants growing into one another, in part because birds also love asteraceaes, the seeds of which they eat and distribute in the most organic way. But the birds can’t be blamed for all the clutter in my gardens. Rocks that the boys have collected on our journeys are stacked in tottering obelisks near every back door I’ve had since I’ve had boys who slip rocks in their pockets. Broken bits of brightly colored crockery are wedged in the soil next to flowering plants as though working their way to the surface at some archaeological site.

After describing it all to the man I did not know would one day be my partner, he sent me a copy of Allen Ginsberg’s poem, “A Strange New Cottage in Berkley,” so perfect to send to me, of all people, for so many reasons, but how could he know all those reasons when he didn’t know me well at all? And yet it seems, in hindsight, that was the moment when the tiniest of seeds was planted; growing eventually into this abundant, furzy life we now have together.

And today: shutters gone, zinnias a-riot

And today: shutters gone, zinnias a-riot

For two years, we have made incremental progress, indoors and out, and now, just in the past two months, we both feel like this is becoming our home, surrounded by our gardens, reflecting not just what we like, but who we are. Brighter colors on the walls, wilder plantings in the yard. Yes, we still have too much stuff, but we continue to sell, donate and discard our possessions large and small. The basement no longer has goat paths through stacked boxes of books and the back garage no longer looks like a furniture store.

We found a house, we have made it home.

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You Say Eggplant, I Say Aubergine (+ Moussaka Recipe)

I’ve been thinking about the power of names lately—how names shape who we are and how we think of things. A couple of weeks ago, an old friend from the Waldorf school was offering up eggplant like many a backyard gardener will do with zucchini. She caught up with me the evening of the school’s Michaelmas festival, one of my favorite festivals, which involves the changing of the seasons, an archangel, a dragon, stars, gnomes, peasants and royalty.

“Hurry, come with me, I have them in my car!” I was urged in hushed tones as though we were about to conduct an illicit transaction. In the passenger seat of her sedan, my friend had five plastic grocery bags full of the dark purple vegetables. “I can’t get anyone to take them!” she said handing me the bag with the most eggplants.

“Are you kidding?” I asked, “I love all things eggplant!”

“Is that all you want?” she asked me. I didn’t want to be greedy, so I told her if she couldn’t find any other takers for what she had left to be sure and let me know.

I wonder if the problem with eggplant isn’t contained in the name. The French don’t seem to eschew the bulbous nightshade the way so many Americans do, but in France they are les aubergines—a far lovelier name, as are most French nouns compared to their English counterparts (yes, in my opinion).

A professor once told me that the impact of a book or movie is unknown until long after it has been read or viewed. What first impresses you may be easily forgotten in time. It’s been over twenty years since I read Gabriel Garcia Marquez’s Love in the Time of Cholera, a book I enjoyed when I read it (though I was troubled by the sexual predation of the character Florentino) and I still think of it regularly, like a journey I fondly remember taking. Eggplants—las berenjenas (also a far prettier name than ‘eggplants’)—are sprinkled throughout the novel. The character Fermina does not like them and promises to marry a man if he does not force her to eat the vegetable. Her family, however, intervenes and Fermina is instead married off to a physician from a high-ranking family, Juvenal Urbino. Like me, the Urbinos also love all things eggplant and for years, Fermina’s mother-in-law and sister-in-law frequently serve eggplant dishes just to torment her. But after decades with her husband, Fermina learns to cook and even develop a taste for the fleshy vegetable.

UnknownUnlike Fermina, I have always love eggplant, but I did not grow up cooking it. I first learned to cook in my early twenties using the The Moosewood Cookbook, a collection of recipes from the Moosewood Vegetarian Restaurant in Ithaca, New York, published in 1977. Most of the recipes in that book are very accepting of adjustments (many of which I, frankly, have found necessary for a successful dish). I still have my original copy, though the front cover fell off long ago, filled with my notes penciled in next to the recipes I most often made: spinach lasagna (add two cloves of minced garlic to the filling), lentil soup (add ½ teaspoon each of basil, oregano, and thyme), and ratatouille (substitute 8oz. tomato sauce for the tomato juice).

I believe it is because of The Moosewood Cookbook that I have always been willing to adapt recipes. I know it introduced me to cooking eggplant and I continue to follow it as a guide every summer when all at once eggplant, bell peppers, summer squash, zucchini and tomatoes come into season and for a month I make at least one large batch of ratatouille a week. No longer a vegetarian, I now add sweet Italian sausage to the summer stew. This year, our CSA grew okra for the first time and like the sausage, it too went into the ratatouille, adding a delightful texture to the dish.

1381701_10151933155944309_1199122032_nBut it is no longer high season for all the ingredients in ratatouille and, after eating it from mid-August to late September; my diners were ready to go forego it for another eleven months. So what to do with an unexpected surfeit of these dark vegetable beauties? Moussaka. I thought I had a recipe I had printed out from the Internet some years ago, but I couldn’t find it. Though I often pore over my collection of cookbooks, which I weeded down to two shelves of my essential favorites when we moved, I researched the moussaka online. I love comparing recipes and the Internet has made doing so easy fun. I Googled “easy moussaka,” because the last time Max followed an authentic recipe for the dish from one of our cookbooks, it took him three hours to put it together. It was fantastic, but I wanted a recipe that could be called “Working Mom’s Moussaka” (which describes all moms, but “All Mom’s Moussaka” doesn’t make the same, or any, point).

When finished, I posted on Facebook before pictures of the eggplants and after pictures of the dish. I received several requests for the recipe and was, thus, inspired to write this post. A few things: I was not looking for a gluten-free recipe, but instead of the traditional béchamel sauce, I took the ricotta/feta/egg topping from Martha Stewart’s recipe, which has no flour in it. For the eggplant/meat body of the dish, you can use all beef, but I prefer a mix of 1/3 ground lamb to 2/3 ground beef. This gives it the creaminess and flavor of the lamb without being too rich for the mouth or the wallet. Finally, I make a large quantity because I feed many people. This serves us two dinners (when Claude is not home). But it can easily be cut in half. Or as a gift to yourself down the road, place it in multiple dishes and bake one now and put the other dish in the freezer (without the cheese topping).091006sriracha

Finally, this recipe is mild enough to for three-year-old Leif and smooth enough for Lyra, who at 13 months has only four teeth. I slap a bottle of Sriracha on the table for the adults and feel it completes this dish’s umami. This moussaka has been so deliciously successful, I have made it two Sundays in a row and it very well may end up on this weekend’s menu, too.

Holly’s (gluten-free) Easy Moussaka (a.k.a., The Working Mom’s Moussaka)

Ingredients:

Opa!

Opa!

  • 2 pounds ground beef + 1 pound ground lamb
  • 2 medium-to-large onions, diced
  • 6-12 cloves of garlic minced
  • 2 large or three medium eggplants
  • 1 bunch of Italian parsley, chopped, stems removed
  • cinnamon
  • salt
  • black pepper
  • 2 cups spaghetti sauce (I like Midi’s Garlic & Onion)
  • 1 can of diced tomatoes (14-15 oz)
  • 24 ounces of ricotta cheese (the larger container)
  • 10 ounces feta
  • two eggs, whisked

Putting it together:

  1. Preheat oven to 350 and spray a 9×12 baking dish with cooking spray (I love the glass Pyrex baking dishes because they are glass and come with their own lids)
  2. In a large skillet (or jumbo electric skillet), sauté the beef and lamb with the onions and garlic, stirring regularly until the meat is just slightly pink and crumbly. Tilt the pan and spoon off excess oil/liquid. (Our shelties think they’ve gone to heaven when I divide this oily mix and give them each a bowl of it.)
  3. Add the eggplant and sauté until it softens (it will cook down), turning it over and over. To taste (perhaps 1-2 teaspoons each), sprinkle in cinnamon, salt and freshly ground black pepper along with the chopped parsley and mix in. Add the spaghetti sauce and diced tomatoes and cook 4-5 more minutes until hot. Transfer to the baking dish.
  4. In a medium mixing bowl, stir together the ricotta, feta and eggs (whisk eggs before adding to the cheeses) until thoroughly mixed. Blop it on the meat mixture in large dollops and gentle smooth over the top (like icing a cake).
  5. Bake 40-45 minutes until the topping is set and slightly browned at the peaks.
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My Music Man

Hugo works hard. It isn’t his innate nature, but he does. He has become one of those people who hits his stride best when his life is taut with activity, like a rubber band that is stretched, but doesn’t risk breaking.

His activites cost money. He’s in three choirs, at least three bands (the number changes regularly, usually in the plus column), goes regularly to Buddhist teen retreats in Vermont. I pay for a good part of it: band, vocal and guitar lessons, ACT tutoring. But so does Hugo. He pays regularly, a lot and doesn’t complain.

It’s my opinion that the junior year of high school is far and away the most important. The work is the hardest, the college entrance exams happen, and the grades really, truly matter. Three weeks into the first semester, Hugo was averaging 5 hours of sleep a night. Not okay. Read this. After his employer repeatedly disregarded his request that he not be scheduled during the week until marching band season ends, Hugo gave his two weeks notice. I’m so relieved.

This is the kid who takes 80% of my parenting oxygen. He’s worth it (and, yeah, people tell me he’s a lot like me). His father is afraid of him because Hugo always calls everything like he sees it. I’m not afraid of Hugo, but he regularly makes me wear my big girl britches and hold my seat as the mother.

When people talk about parenting being hard, it’s about doing what is right even when you  are worn down. You don’t give in to the whining. You don’t let them stay up late. You don’t let them only eat white carbohydrates. You do make them put their things away. You do make them do their homework and chores. Even when it takes more effort than it would to do some of these things yourself. And in the very long end, most kids are grateful you did.

Rise up and be the mama bear or dada bear your kids need you to be. You won’t regret it, I’m here to tell you. More on this later. For now, here’s a tune from my Music Man, whose every cover sounds better than the original: 

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Lyra: Our First Year Together

LyraBeautyShot

Lifespans in Life

The majority of the Down syndrome blogs are written by families whose child diagnosed with Ds is under the age of three. In an online group I belong to, mothers openly wonder why this is the case and what happens to families who have older children with Ds?

I’m pretty sure I know. People move on in life and after three years, having a child with Down syndrome is no longer a novelty. The news of an extra chromosome in a new baby has been digested, how T-21 manifests in an individual child (particularly in terms of any serious medical issues) has been observed and, finally, the remediation for baby’s particular needs has been identified and (ideally) implemented. Baby’s Ds has normalized within his or her family. And just as families do with every baby, whether a child is born with a diagnosis or not, the family resumes dealing with the normal complexities of life.

I’ve seen similar situations many times over. Homebirthers have a hard time detaching from the midwives who’ve just helped them have amazing births. Many of these new moms consider becoming midwives, but only a few do. I’ve known women who, having worked through breastfeeding challenges with their own babies, go on to become La Leche League leaders. But few continue in leadership roles long after their last child weans. When children become school age, some mothers become ardent advocates for particular types of education or homeschooling. But by the time the kids are in middle school, or certainly high school, parents often relax on education. Many homeschoolers start attending school, and children who are privately educated through elementary and middle school frequently attend public high schools. Intensely held positions melt away as the needs of children change. And, too, children find their own paths and must strike out with lessening assistance from their parents.  Life, forever transitory, goes on.

Why I Write

I write because I am a writer. When prevented from writing for any length of time, I have a hard time sleeping because essays clutter my thoughts. When I was pregnant with Lyra, and had no idea the baby I was carrying had three 21st chromosomes, I began writing about my family. Oh, I’ve written about us before, an entire book, in fact. But this time, I began work on a series of essays and had several outlines in mind.

I also process life by writing, which is especially helpful with the harder stuff. My ex-husband, who throughout our marriage had tried to convince me that I was a chronic depressive and should, therefore, be unendingly grateful to have him in my life, told me some months after I left him how he envied my ability to figure things out by writing. Shortly thereafter, he stole my journal off of my computer and presented it to the divorce court as evidence that I was not mentally stable enough to have custody of our children. Leaving that marriage was scary business and, for the first year, I frequently questioned myself. I don’t know if the magistrate handling our divorce ever read my journal, but nothing came of it. Except further validating my decision to divorce.

Yes, writing essays about family became a different project than I had first envisioned because Lyra is a different child than we had anticipated. I write about our experience as we unpack our new lives, which now includes a daughter with Down syndrome and congenital cataracts.

Not Just a Down Syndrome Blog

As I routinely point out, and hopefully demonstrate, Whoopsie Piggle is a collection of essays about my family, of which Lyra, a child with Down syndrome, is one of five siblings. Certainly she is something of the star of the family, but in my experience, the babies in most families are the stars. If Lyra had merely 46 chromosomes would I know now what I do about Ds? No way. This first year with Lyra was like finding myself in a graduate program on Trisomy-21 and all the related medical, social and cultural issues. Writing what we have learned about our daughter, as well as Ds in general, again helps me process my life as it has now been redefined by my fifth child. And by being publicly available, perhaps it might help another mother, and her family, who discovers the baby she is carrying or just birthed has Down syndrome.

However, I have many essays living rent-free in my head like squatters that have little, if anything, to do with Lyra and her 47th chromosome. In the past year, I have written through our learning curve on Down syndrome, along with the medical challenges Lyra has faced. Now, a year after her birth, our family is a boat once again sure of its ballast. Which was also the case when my four older children had their first birthdays.

But before evicting those squatter essays onto the pages of Whoopsie Piggle, it seems appropriate to give Lyra a full blast of the spotlight.

Lyra’s Eyes—More Concerning than Down Syndrome

When I first held Lyra, I immediately noticed her eyes were “Downsy-shaped.” Shortly thereafter, I saw the ghostly pallor of her pupils. At an ophthalmologist’s office three days after her birth, we learned that Lyra had bilateral, congenital cataracts. We were referred to a second, pediatric, ophthalmologist, whom we saw that same day. He immediately scheduled surgical lensectomies for both of Lyra’s eyes.

Hanging around a pediatric ophthalmologist’s office as much as I have in the past year, where the waiting room is often filled with babies born with cataracts, one might easily assume congenital cataracts are common. They are not. Congenital cataracts occur in the United States (and the U.K.) in 3 to 4 out of 10,000 live births. That’s less than .4%, making it pretty rare. Though not considered a marker of Down syndrome, of the infants born with cataracts, the majority of them also have Down syndrome. But even within the Ds population, congenital cataracts are rare, effecting approximately 3% of babies born with Ds in the U.S.

Statistics Versus Reality or When the Number Is Yours

We feel very lucky—providentially, miraculously lucky—that Lyra was spared any of the heart defects commonly found in infants born with Down syndrome. However, for the first two months of her life, all Max and I could focus on were Lyra’s cataracts. Not her Down syndrome and the challenges it might present, but her blind eyes. Her cloudy lenses barred all images; only bright light gained access to her retinas. When she was a few weeks old, Lyra’s eyes started wandering waywardly in their sockets, never in tandem. Bereft of any visual input, the parts of Lyra’s brain that process vision remained unused. Left that way, those parts of her brain would have become effectively obsolete.

Lyra was six and seven weeks old when she had her lensectomies, first on her right eye, and then on her left. More than anything, I was anxious about Lyra having general anesthesia. At eight pounds, she was barely bigger than a bag of sugar. I did not cry when my midwife told me Lyra appeared to have Down syndrome, nor did I cry when genetic testing confirmed the diagnosis. But when a nurse took my six-week-old infant from my arms and walked her down a hallway to the surgical suite, Max and I stood watching until the doors closed. And then I turned into Max’s arms and wept, my sternum burning like I’d just run up a long hill. Please don’t let her die.

Five hours later, we were home where Lyra quickly recuperated. Because everything went so smoothly, the second surgery, exactly a week later, was not nearly as emotional. Soon after her lensectomies, Lyra began wearing specialized contact lenses and, as I described in “Lyra’s Eyes” so too began the bimonthly torture events otherwise known as lens changing appointments. Still too young to understand that contact lenses give her vision and should therefore be tolerated, if not welcomed, Lyra has only improved her fighting techniques. I walk into the exam room with a baby who momentarily transforms into an eel—slick with sweat and strong enough to twist in all directions. Lyra also uses the small openings of her eyes, a Ds marker, as one of her tactics. She shuts them so hard in these appointments that her upper lid sometimes turns inside out. An optical speculum is absolutely required. As are three people.

New Trick

After a year of successful contact wearing, I noticed one day in August that the contact in Lyra’s right eye was missing. We were in the Green Mountains of Vermont (read: far away from specialized pediatric ophthalmologists), where we’d just arrived for a two week vacation. Lyra’s right eye is the one with an elongated pupil, part of her iris having been nicked off during the lensectomy. Without the familiar bubble of an aphakic contact lens, Lyra’s pupil looked different, prettier even, or maybe just more normal, to me. I felt like I was seeing her sighted eye for the first time. With her lenses in, I am reminded of the band director I had my sophomore year of high school who wore glasses with a very strong bifocal correction. His eyes looked odd due to the magnification. When he took off his glasses, usually to rub his temples after trying to teach us a new piece of classical music, he looked normal.

“You know she won’t have to wear these lenses much longer,” said Lyra’s ophthalmologist when we returned home and I told him about the appearance of her lens-less eye. “When her eye is big enough, we can get her into a different lens without that big silicon bubble, I might even be able to fit her in them in the next few months. We’ll see.”

A few days after her missing lens was replaced, Lyra removed the lenses from both her eyes.  Astronomically expensive ($500+/pair), we searched but only found one. As a result we have:

  • Figured out how she takes them out. She puts her third finger in her mouth and her forefinger at the outer corner of her eye and pushes. We now remove her hand from her face whenever we see her doing this.
  • Purchased, as back up, glasses with the tiniest frames and the thickest lenses.
  • Been told by her eye surgeon that the new lenses without the thick silicon bubble are also smaller in diameter and, as a result, will suction more securely onto her eyeballs. He has ordered her first pair.

    Baby glasses with Mama glasses

    Baby glasses with Mama glasses

Seeing Clear and Straight

After her lensectomies and with her aphakic contact lenses, Lyra became a sighted child and her brain has developed as such. She looks towards sounds she hears or at people, animals and toys she wants. Soon after the lensectomies, Lyra’s right eye dominated her left, although both eyes regularly crossed inwardly, towards her nose. We patched the right eye for months, with little impact other than to irritate the skin around her eye.

The medical term for crossed eyes is strabismus and is based on the Greek word for “squint.” I learned this after I described to the surgeon how Lyra sometimes squeezes one eye shut while scrunching up the same side of her face. Many people who see her do this make Popeye references and more than a few have quoted the comic sailor man. I’m afraid we all laugh. Poor kid.

“We aren’t sure why kids with strabismus squint, but the best guess is that it helps them to focus,” Lyra’s eye surgeon told me in June. “I think we’ve done all we can with the patching. I’d like to schedule surgery to correct both of them.”

“Will this improve her vision, I mean, won’t that give her depth perception?” I’d heard from physical therapists that following surgeries for crossed eyes, kids often had big leaps in motor skills and coordination. I assumed this was due depth perception, which doesn’t develop when the eyes do not track in tandem.

“Yeah, well, she’ll have about a 25% chance of developing depth perception,” he said.

“Twenty-five percent? That’s pretty low!”

“I know. It’s only 50% in typical kids, no matter how young we operate. Sometimes it develops and sometimes it doesn’t but it’s half as likely with the Down syndrome. Still, you are going to see a big improvement in her vision. She’ll have a larger field of vision and things will make more sense to her.”

Eye Surgeries 3 & 4

The morning after her first birthday, both of Lyra’s eyes underwent muscle surgery to correct them from crossing. Knowing the operations were much less complicated than her lensectomies had been, I felt relaxed as we checked in at the hospital, visited amiably with the staff, Lyra’s surgeon and the anesthesiologist. But when the surgical nurse came to take Lyra from my arms, my throat felt strangled and once again Max and I held each other while watching a stranger walk down the hallway to the surgery suite with our now fifteen pound baby. Three bags of sugar and general anesthesia.

A few days post-op

A few days post-op

In the recovery room, I sucked my breath in when Lyra opened her eyes. With last year’s lensectomies, we couldn’t see the incisions because they were made on the backside of her eyes. But with the strabismus surgeries, red valleys rippled the once smooth, white surfaces between her nose and irises. The incisions looked like they had been made with a bread knife as the edges were not straight lines, but like the bric-a-brac trim stitched to the edge of Raggedy Ann’s apron.

For more than a week, Lyra’s eyes remained a gruesome sight, however, her vision improved immediately. A month later, Lyra does many things she didn’t do before, which we attribute to better vision. She suddenly developed “separation anxiety” and is no longer content being held by others when her father or I are nearby. She leans in our direction, looks at us and fusses while reaching for us with her arms. When playing on the floor, Lyra now raises her arms for me to pick her up whenever I am close to her. But she also sits for long periods of time playing with toys that are placed within her reach. She reaches farther ever day. And pivots more. Under the tutelage of physical therapists, we are teaching Lyra to go from sitting to lying down and vice versa. Crawling is coming.

When I have my contact lenses in, I can see very well. But if I cross one of my eyes (I can cross each of my eyes independently, impressing even Lyra’s ophthalmologist), where I should see one image I see two overlapping images. It’s terribly confusing, for which is the real item and which is the phantom double? Depth perception or not, seeing straight is certainly an improvement over seeing double.

The other thing, which may sound somewhat inappropriate, is Lyra looks better—the aspect of her face is surprisingly different with her eyes working in tandem. Is that because it is more normal? Perhaps. Do I love her any differently? Of course not.

What, More? More Lyra! At Least a Wee Bit More…

Before her hypothyroidism diagnosis, Lyra’s extremely slow growth rate was very concerning. She gained just two pounds in her first three months of life. So when Lyra had a growth spurt shortly after she began taking Synthroid, everyone was relieved and felt the problem was solved. However, at her 12-month well-baby visit, Lyra weighed 15 pounds even, only one pound more than she had three months earlier. Were she a typical baby, she’d have weighed almost 23 pounds by her first birthday as most babies grow two and a half times their weight in the first year and Lyra was seven pounds, ten ounces at birth.

“She’s slowing down again,” said Lyra’s pediatrician, Dr. M. “Her head measurement is really good, 75 percentile in the Down’s chart, but her height and weight have gone down in percentile since her 9-month visit.”

We talked about it. Lyra is still exclusively breastfed. Like many breastfed babies, my older boys all grew rapidly until they were about six months old. After that, they stopped putting on weight. Still, they also continued to grow in length, like pulled taffy I used to say. Lyra is not. In the end, Dr. M and I decided, well, nothing. As her brain size is not a concern, for now we’ll just keep monitoring the rest of Lyra’s growth.

Poop, Poop, Poop or The Miracle of Fruit-Eze™

WordPress lays an array of statistics in front of my eyes each day. Not only how many views I’ve had, but also the countries where Whoopsie Piggle has been read (over 40 so far, in all continents except Antarctica), and even the search terms used to find the site. Poop, it turns out, is pretty popular. Or, rather, searching for solutions to infant constipation is. Hundreds of hits on WP have been related to this issue.

At the National Down Syndrome Congress convention last July, Max and I attended a session led by the director of the Boston Children’s Hospital Down Syndrome Program on healthcare guidelines for children under the age of five. Constipation merited its own slide in her PowerPoint presentation, as it is such a common problem in the Down syndrome population where even at the cellular level, excretion is not as efficient as it is in the typical population. I once believed the underlying culprit for Lyra’s pernicious constipation was her hypothyroidism. But in a discussion with a scientist at the convention who was studying autoimmune disorders, I was told that even before she began pharmaceutical therapy, Lyra’s thyroid levels would not have caused her constipation. It seems the cause of Lyra’s constipation is simply her Down syndrome.

Given its pervasiveness, I’m surprised that more information is not readily available on how to address constipation without using laxatives. Many people with Down syndrome regularly take a product called Miralax, but it’s not considered safe for long-term use, something the Boston doctor mentioned in her talk. She then went on to tout the benefits of a diet high in fiber and an all-natural product called Fruit-Eze. (Yes, that’s purple and a link. If I could make lights blink around the name like an old-fashioned movie marquis, I would do that, too, I’m just so thrilled with this product.)

As far as I am concerned, that one tip merited all the exhausting travel and expense of attending last summer’s conference in Denver for I am here to sing the testimonial praises of Fruit-Eze. It is nothing more than a sweet jam of prunes, dates and raisins mixed with prune juice. Spread it on toast, mix it in baby food, eat it by the spoonful! Within days of giving Lyra two small spoonfuls in her food, one in the morning and one in the evening, we have been delightfully surprised to find stools in her diaper, sometimes twice daily! And no longer does she announcing their arrival with plaintive cries of pain because the poo is soft.

At $26 + shipping for a 32 ounce jar, Fruit-Eze is pricey, but well worth every penny. It is not at all hyperbole to say that Fruit-Eze has changed our lives.

The New Normal

A family of five children, the oldest is nineteen and the youngest is one. The oldest is off in his second year of college at the University of Michigan, living in a co-op where he cooks dinner once a week for 52 people and is learning how easy it is to cut the fingers of your left hand when chopping so many vegetables while back at home, the youngest complains as she cuts five teeth at once.

Hugo's new squeeze

Hugo’s new squeeze

The second oldest continues to find romance as the primary inspiration for his song writing, which he practices All The Time on the sexy new guitar he purchased with the money he made over the summer at Old Carolina Barbeque, while his sister sits on the carpet next to him, mesmerized by all music, but especially the songs of her brother.

1000965_10152214166733986_85384489_nThe third boy, so long the youngest, officially now the middle child, acts like a firstborn around his younger siblings, caring for them like a mini-me, his sister often found in his arms and most nights while I get dinner on, he feeds her, this boy who, like all mine do at 13, now grows as fast as corn on the white summer nights in Alaska, the fleeting traces of boyhood dissolving as he becomes lantern-jawed and long limbed like his older brothers and, just as they did at 13, this boy has stood up to his father and found, as did they, that there is no room in that relationship for any voices except one and now he must process why his father has abandoned him, too, when all he wanted was to be seen and heard, just like anyone else and it is all so much for a young man/boy but he is resilient, with brothers who guide him down the path they each traveled not long ago.

The last boy is also off to school, going all five days to the Waldorf school and he tells us he loves his sister, he loves her, he loves her and he can’t stop taking her ears in his hands and squeezing them even though we’ve told him so many times to Never Touch Her Ears and even though doing so means his sister can reach his long hair and pull it, which she always does because she loves pulling hair, especially her brother’s hair because he screams when she does and she has him right there in her lap, he doesn’t move lest she pull harder but he screams until someone extricates her fingers from his flaxen locks, which his dada refuses to cut because it is like a golden halo that floats around his face as he runs, runs, runs in the park-like yard, taking his pants down to pee in the grass, throwing dirt in the fish pond, digging in the sandbox, spraying everyone who comes close with the hose and when he falls asleep his muscles lose all tension and his head sweats just like the music brother’s head did when he was a boy, the music brother who announced when the littlest brother was still in the womb that “he will be like me and I shall raise him in my own image and I will call him Leif” and it was so.

Just a Child

I have a friend whose mother is from Japan. My friend once told me she did not hear her mother’s accent, which I thought was quite pronounced. Oh, she knew her mother had an accent. But in daily life, her mother is her mother, not her Japanese mother, whose voice she has listened to since the nautical days of earliest life.

We are always aware that Lyra has Down syndrome. We see it in her eyes and the manner in which she develops. But Lyra is no more our Down syndrome daughter than my friend’s mother is her Japanese mother; she is simply our daughter. Our fifth child. Her brothers’ sister. Who happens to live in the rich milieu that is this family, that is Whoopsie Piggle.

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Circling the Wagons

Have Children, Will Travel

In the patch of state fair zinnias outside our front door, I have been watching the bees hop from one bright blossom to another on these late summer evenings, the warm air drier than it was in high summer, a sure sign that autumn is collecting herself somewhere and soon to arrive in Ohio. Our family was like the bees this summer, hopping, or driving rather, from one colorful destination to another. In mid-June we went to Dayton, Ohio for my thirtieth high school reunion. Then, over the Fourth of July weekend, we drove to Northern Michigan where Jules had spent two weeks with his grandparents, having gotten there by Greyhound. A week later, I drove to Denver with Jules, Leif and Lyra. Ten days after returning from Denver, we left for Vermont and family camp at Karmê Chöling Shambhala Buddhist Meditation Center.

At the Great Smokey Mountains with Claude & Hugo, 1997. God knows what possessed me to dye my hair that one, and only, time.

At the Great Smokey Mountains with Claude & Hugo, 1997. Yes, that’s me (after my one, and only, adventure in hair color).

Busier than the past few summers, this one reminds me of all the summers before the long divorce with the older boys’ father when I frequently loaded the kids into the car and drove to far away places. Claude was three and Hugo just six months old on my first big road trip with multiple wee people. The three of us caravanned with a friend and her kids to the Great Smokey Mountains where the hiking was slow going, yet still fun, with a group of children all five and under. Hugo’s little face peered over my shoulder from the backpack I carried him in. When I bent forward to squeeze through a narrow passage in a cavern deep underground, Hugo’s poor little noggin smacked into a wall of rock. Hefty though he was, I carried Hugo in my arms for the rest of that subterranean tour.

“You must be crazy!” or “I could never do that!” people tell me now, as they have for decades, when they hear of the places I travel with small children and no other adult. I feel now, as I did then, that we were lucky. My work does not require me to be in one place. As long as I have access to a phone and Internet, I am able to manage most things from afar. But what they really mean, these astonished onlookers, is that they have no desire to travel alone with small children. If it is hard for small children to play contentedly in a house full of toys long enough for someone to make dinner, how on earth can they manage strapped into car seats for hours, sometimes days, at a time? Like anything, I respond, traveling well can be taught.

Training Up the Mama

A few months after taking them to the Smokies, I drove Claude and Hugo up to their grandma’s in Northern Michigan. Claude was three and Hugo nearly a year old—basically the same ages as Leif and Lyra are now. “The baby’s sad,” Claude repeatedly told me from his car seat in the back. So, holding the steering wheel with my left hand, I twisted my right arm upside down and stretched it into the back seat. My middle finger, nail side on his tongue, was in baby Hugo’s mouth. He would suck on it with incredible force, then intermittently breaking the suction with a loud POP of his lips before screaming. Again. And again.

I don’t think it can get any worse than this, I thought to myself. In those days, there were few exits, and even fewer with any businesses near the exits, once you crossed the Zilwaukee Bridge near Saginaw in the middle of the Michigan’s lower peninsula. I had no choice but to continue driving with my finger in the mouth of a baby behind my back whom I couldn’t even see. Taking inventory of myself, I was surprised to find I was calm.

If this is as bad as it gets, I can handle it. 

We stopped at the first gas station I could find, a Sunoco surrounded by a field of tall grass where I spread out a blanket and nursed baby Hugo. The blades, heavy with seed, nodded in the wind. Hugo nursed until he was milk drunk while Claude chased the grasshoppers that fluttered around us like miniature helicopters, their wings sounding mechanical against the steady chirping of unseen crickets.

Training Up the Little People

This summer, 19-year-old Claude and 16-year-old Hugo both have jobs and had to stay home when we drove to their grandma’s for the Fourth of July weekend. Leif and Lyra sat in their age-appropriate car seats while Jules was in the way back seat of the van as we snaked down the state of Michigan in post-holiday traffic. Rarely driving more than 15 mph, bicycling would have been faster. At thirteen and a half hours, our trip home took nearly twice as long as usual. Lyra and Leif alternately slept and played until eight hours into the trip when, just as we were gunning to get to Ann Arbor for dinner, Lyra started to cry. Not a crabby cry, but a “Why are you doing this to me? I really can’t take it anymore!” kind of cry. Unlike the boys when they were babies, Lyra doesn’t suck my finger for comfort and nothing any of us did soothed her. Like all of us, she wanted out. I wanted to weep with her. When I pulled her out of her seat in the parking lot of a Macaroni Grill, I wiped her wet face with a tissue before lifting her to my shoulder. She nuzzled the bare skin where my neck meets my shoulder. I began nursing Lyra next to the van and walked into the restaurant with her at my breast. For everyone’s sake, we had a leisurely dinner and the little kiddos slept the rest of the way home.

The drives to Denver and back were the kind I try to avoid: endurance tests. With dates to keep at both ends of the trip, there was nothing leisurely about them. On the way there, Jules was my endlessly helpful assistant. He managed the audio books, handed things to Leif and Lyra and, when necessary, sat in the very back seat so that Lyra could look at his face. This was sometimes the only thing that comforted her. For a while anyway.

Max, who flew into Denver, drove back with us. His help in all things, as well as his company, improved our return trip. But it also meant we had to keep an intense pace in order to get him back to work in Cleveland.

The twelve-hour drive to Vermont should have seemed like a short jaunt compared to Denver. But before I even began packing for Karmê Chöling, I was already looking forward to when we would get home. “I can’t wait until I don’t have to pack and plan for any more trips!” I told Max.

Stopping the Madness or Removing the Japanese Beetles from Life

Living life by getting through things is no way to live. In fact, I would say it is not even living. Being present for all of life—the ups, the downs, the routine and even the dull days—is grace and something worth striving for.

And yet of all times, I found myself working to just get through family camp at a Buddhist meditation center. Clearly, it is time for us to be home and stay there. To continue rooting in our still new-ish home, as well as this family, only created in the past few years.

Along with the helpful bees in our bed of zinnias, I noticed the arrival of Japanese beetle with their beautifully iridescent exoskeletons–coppery-colored wing sheaths and heads the green of Robin Hood’s foresty get up. Exotically gorgeous, these coleopteras embedded themselves in the large zinnia blossoms, moving slowly like indulgent guests at a spa. Often they are found coupling in their petaled beds and, rather than go elsewhere to eat, they consume the very flowers upon which they’ve mated. Before we left for family camp, we set out Japanese beetle traps. When we returned, they were satisfyingly laden with the dead bugs. Not very Buddhist of me, perhaps. But I’m willing to accept a little dead bug karma in this case.

Instead of driving back from Karmê Chöling on the interstate through New York State, we took scenic Route 20. It took us longer, yes, but it brought welcomed sanity into our hectic summer. Along the way, Max and I talked about our need to circle the wagons. Not forever, but for the time being. And just as we’ve plucked the Japanese beetles from the garden, we must do the same with as many distractions, no matter how lovely or fun they may appear to be, as we can in our lives.

And so, we have decided not to travel more than two hours away (other than taking Claude back to the University of Michigan) for the next six months. Nor will we have extended houseguests for at least the next year (we’ve had four in the two years that we’ve lived in this house with the latest, Nancy, having transitioned to her own home at the end of July). And instead of driving 40 minutes away for Lyra’s various therapies, she is on a waiting list at Akron Children’s Hospital, which is five minutes from our home. We are even giving ourselves permission to stay home when there are performances, fundraisers and other events that we typically feel obligated to go and enjoy.

It feels liberating. Like taking back our lives.

Kumbayah Birthday

IMG_2149The calm trip home from Vermont took two days and we arrived in Akron late on a Monday evening. The following Wednesday, our Lyra turned one.

On her birthday, I sent Lyra to daycare with her brother Leif. After all, she is a fifth kid and I hadn’t been home in two weeks.

That evening, I made a ratatouille with the fresh vegetables I had picked up that day from our CSA while Jules made lemon cupcakes from scratch. None of the boys had to work and were home to celebrate their sister’s birthday. Three of our dearest friends joined us including Vanessa, who is otherwise known as Lyra’s personal photographer. She brought a CD containing a slide show of Lyra’s birth, set to the Beatles song, “Here Comes the Sun.” Our home was full of our children and friends, all joyfully celebrating Lyra and this first year she has been with us.

It was also the last day Lyra was cross-eyed. She had surgery the following morning. More on that up next in “Lyra’s Latest: After Our First Year.”

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Lyra’s Latest: Fully Human & Needing a Civil Rights Movement

Your daughter was born with Down syndrome. Do not expect her to read, write, do math or ever drive a car.

A physician said these words to the parents of a buoyant baby girl, aptly named Grace, in the days after her birth at UC Davis Medical Center. It sounds like something a doctor might have said in the 1960s. But in fact those words were spoken in August of 2012, the same month that our daughter, Lyra, was born. The parents who were told this spent the first months of their daughter’s in a gloomy fog, bereft because of what they were told not to expect.

Too many physicians, people whose job it is to know the latest research and trends, do not understand the realities of a Down syndrome diagnosis but instead cling to limiting portrayals. Why is that? That falsehoods regarding a diagnosis of DS are tenaciously held and promulgated by anyone, but especially health care professionals, needles me as I try to understand why. It seems particularly common in all regions of the United States except the northeastern corner (where the majority of the nation’s Down syndrome clinics exist). The only explanation I’ve come up with is that it is still acceptable to discriminate against this specific population.

Which is why we need organizations like the National Down Syndrome Congress.

Driving to Denver: Our First National Down Syndrome Congress Convention

The word convention conjures in my mind major sales events for targeted industries. The National Down Syndrome Congress’ annual event strikes me as more of a conference than a convention in that information and education are the primary goals, not sales. Conferences not only inform but can also inspire participants. While always a resource for information, support and research, the primary function of the non-profit NDSC is holding the annual convention. For two and a half days, sessions are held addressing they myriad challenges families of people with Down syndrome face, as well as sessions for people with DS themselves, at different ages and developmental stages. Many families come every year and one such veteran of the convention, a mother from Arkansas, recommended we stick to the sessions that relate to our child’s age.

Max and I, both incurable students, were eager to attend but the roughly 1400-mile drive might have been a deal breaker if the destination were not Denver. The fact that Max’s sisters and their families live just outside of Denver sealed the deal. And so, taking ten-month-old Lyra,  3-year-old Leif and and thirteen-year-old Jules, who helped navigate and keep the babies happy, I drove to Denver. Max flew out two days after we left, yet arrived six hours before we did.

Shared Fear

The first session we attended was on speech development. It was a pre-conference session and at four and a half hours, it was three times as long as the other sessions. It was also heavily attended. Primarily an overview of the benefits of early and ongoing speech therapy for children with a diagnosis of DS, for me the highlight of the presentation was a short video. In it, five young women with Down syndrome were interviewed. Sitting at a table together, they discussed their training—two women were certified pre-school childcare assistants, having taken 90 hours of training at their local community college—and their careers. They talked about boyfriends and parties. Easily understandable, their language was rich and their conversational styles flowed naturally and comfortably.

At a break, I began talking with the families around me. I wrote in “Changing Expectations,” that of all my fears for Lyra, the greatest is worrying about her speech. As it turned out, many, if not all, of the parents at that first session were equally anxious to have their children go beyond basic speech. They, like me, want their children to speak clearly and fluidly. “People judge intelligence by speech, it’s not fair, but they do,” said one father, distilling one of my greatest fears about my daughter’s Down syndrome in one short sentence. The truth of his statement was like a figurine on a revolving dais spinning slowly in the middle of our conversation. That some people with DS have difficulty speaking may not be reflective of their cognitive abilities, but rather due to physical challenges including hypotonic mouth muscles and the forward placement of the tongue. This fact is not widely understood by the general population. Instead, those who speak unclearly, or not at all, are deemed dismissably ignorant. And often they are treated as such, which is to say, poorly.

Multiple Intelligences

In 1983, Howard Gardner’s book, Frames of Mind: The Theory of Multiple Intelligences, broke down general intelligence in humans to these eight modalities:

  • Linguistic intelligence
  • Logical-mathematical intelligence
  • Musical intelligence
  • Bodily-kinesthetic intelligence
  • Spatial intelligence
  • Interpersonal intelligence
  • Intrapersonal intelligence

In our society, general intelligence is primarily understood by the strength of someone’s linguistic intelligence and logical-mathematical intelligence. College entrance exams exclusively test these two modalities, which also happen to be the two most challenging modalities of intelligence for people with a diagnosis of Down syndrome.

On the other hand, it has been repeatedly shown that many people with DS are hyper-social and hyper-sensitive, that is, they have strong interpersonal intelligence. And many folks in the DS community joke that the 21st chromosome is the “music” chromosome as singing, dancing and listening to music are passions of a significant number of people with DS. Our own girl loves her music-man brother, Hugo. When she is fussy, Hugo often takes her to the living room and plays the guitar or piano while singing, just for her. She instantly quiets and remains content for as long as he makes music. She does not, however, fall asleep while her personal minstrel plays for her.

Nobody Walks in L.A.

When we weren’t in sessions, Max and I walked around the exhibit hall pushing Lyra in her stroller. There were things to buy like eyeglasses and clothing specifically designed to fit faces and bodies with the DS phenotype. We purchased a speech therapy kit for Lyra that includes several straws, to be introduced at graduating levels because, unlike a bottle or sippy cup, when drinking from a straw, the tongue naturally moves to the back of the mouth. I spoke at length with a remarkable young couple, Tim and Liz Plachta, who have created a post-secondary scholarship fund for people with Down syndrome.  Ruby’s Rainbow is named for their young daughter who has a diagnosis of DS.

At a table for Adam’s Camp, a program in the Rocky Mountains that has five therapists work with five kids for five days to get a boost in therapy goals, we met a father whose child with DS was ten years old. No longer in shock and overwhelmed, like so many of the parents there with babies, this dad was relaxed. As he chatted with us, his three children crowded around Lyra’s stroller, making her smile and clap. He told me he and his wife plan their yearly vacations around two things: a week at Adam’s Camp for their son with Down syndrome (while his siblings are at the typical camp on the same YMCA campus) and the NDSC convention.

“You know, we came the first time to the convention when our boy was just a baby, just like your little girl there, and the keynote speaker was this woman from LA. She was an actress with Down syndrome and I recognized her from TV shows she’d been on. She also worked in an office and drove there in her convertible BMW. In L.A. That changed everything for us, like how we think about our son and his life. So we’ve been back every year since then.”

Unlike the actress with Down syndrome, I’m not so sure I can drive in L.A., where the traffic is notoriously congested and the drivers are, even more notoriously, aggressive.

The Goal of Therapies

Shortly after Lyra was born, the local Upside of Downs support group gave us a copy of the book, Gross Motor Skills in Children with Down Syndrome by Patricia Winders. Ms. Winders was at the convention and presented one session for pre-walkers and another for children who are already walking. Max and I both went to the session on pre-walkers and I am glad we did. After breaking down the early stages of gross motor skills into five stages, she asked for baby volunteers and chose Lyra to demonstrate Stage 3. While she sits up quite solidly now, Lyra does not put her arms out to catch herself if she tips over and, as a result, we cannot leave her alone sitting up unless she is on a padded surface. Captured on video, Ms. Winders had Lyra doing any number of seemingly impossible tasks in no time flat (unfortunately, you must now use Google Chrome to view YouTube videos).

A toddler's pronated foot

A toddler’s pronated foot

That was thrilling, but what stuck with me the most from that session was the feet of another child. They haunt me. With their lax ligaments, children with Down syndrome can easily develop pronated feet if they do not receive early interventions. Stage four was demonstrated by a two-year-old girl, who has been “cruising” furniture for a few months but was not yet walking independently. This small child’s ankles bulged over her instep while her toes splayed sideways looking almost like fins.

“Has anyone recommended she use Sure Step braces?” asked Ms. Winders.

“I took her to the orthopedic surgeon,” said the girl’s mother, “and he just said, ‘She has Down syndrome; she’ll walk funny,’ and he didn’t want to do surgery.” It doesn’t take a doctor to see that the girl’s feet would eventually cause her pain from the completely avoidable malformation that was occurring. This mother was not derelict; she had taken her child to a specialist. The doctor’s attitude is reprehensible, if not downright bigoted.

Patrica Winders rolled her eyes and told the mom to get her daughter in Sure Step braces, not something like Sure Steps, but precisely that brand. And she stated to the entire audience the same point that the speech therapists we’d listened to had told us in other sessions:

The goal of early interventions is not to speed up the achievement of developmental milestones; the goal is to learn the skills correctly, which is much easier to do than it is to unlearn incorrect patterns that a child has developed as compensatory techniques.

Breaking News and Controversy: To Have DS or Not? That Is the Question.

In the middle of the convention, I received a text message from one of my dearest friends. Mariko and I have known each other since high school. She also has a niece with Down syndrome. Mariko’s text had a link to this Boston Globe article in which researchers in a laboratory have been able to “turn off” the extra 21st chromosome in cells taken from a man with Down syndrome. The application of this research is a long way from being determined.

To be able to end or remediate the medical complications and the cognitive limitations that people with Down syndrome suffer may seem to many, at first blush, a no-brainer. But I felt stopped in my tracks. The NDSC mantra is “More Alike than Different” and their work in educating society and supporting families encourages an attitude of integrating, not marginalizing, people with Down syndrome. There are many slogans on things from T-shirts, to Facebook groups (including one I belong to), and the aforementioned non-profit, Ruby’s Rainbow, that refer to Down syndrome as “rocking the 21st chromosome.” So what does it mean if somewhere down the road the medical technology exists to eliminate the effects of that very chromosome?

In the days since I first heard of this new research, voices have piped up to state that this would be akin to cultural genocide, including this Canadian woman whose daughter has DS:

We’ve got a genetically similar community, visible minority who are being targeted and terminated globally. People think, Well, this is the way it is and these people just shouldn’t be.

This news initiated one of the most achingly honest conversations I have read on a social media Down syndrome support group. Generally, the comments on that group are full of cheers for each others’ children as they master some milestone or another. And just as often, words of comfort are given, and prayers offered, when families post about set backs or serious medical interventions, such as open-heart surgery. The idea of “turning off” the extra 21st chromosome strikes this chord with so many families: It is offensive that people do not accept our children the way that they are, but it is also true that our children struggle greatly not only with health issues but also learning their basic gross and fine motor skills, speech and hosts of other things that we in the “typical community” take for granted. People with Down syndrome may be more alike than different from people without an extra 21st chromosome, but their successes often come due to intensive interventions and plain old work. Hard work.

And after all that work, even if a child with Down syndrome grows into the most independent, successful adult, what awaits is a cruel sentence. Alzheimer’s is not a matter of if, but when. Adults with Down syndrome generally begin manifesting symptoms in their forties. And, yes, there was a session at the NDSC convention on this subject.

Again, what we don’t know is what this latest research will bring to bear on the lives of today’s children with a diagnosis of Down syndrome. Research on Down syndrome, and the attendant complications, is being conducted worldwide. At the NDSC convention, Lyra gave saliva samples to a scientist studying autoimmune disorders in Down syndrome (Lyra’s hypothyroidism is considered an autoimmune disorder) at the Linda Crnic Institute for Down Syndrome.

What Does it Mean to Have Down Syndrome?

If someday there is a medical way to “turn off” the extra 21st chromosome, I suspect that the Down syndrome community will treat it similarly to the way the Deaf community has responded to cochlear implants as described in this article:

The conflict concerning cochlear implants is centered on the definition of disability. If deafness is defined as a disability, as it is from the medical view, it is something to be altered and repaired. On the other hand, if deafness is defined as a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today’s society, should be readily accepted and supported. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.

I don’t know what we, or Lyra herself, would one day choose to do. Of course I would want to spare my child the suffering of early onset Alzheimer’s, but everything about my daughter’s diagnosis of Down syndrome has caused me to rethink so much of what I once assumed.

True Confession: As a teen, I first considered with any seriousness the concept of reincarnation, where death is only the beginning of a new life. Not an afterlife in heaven or hell as I was taught in the Protestant dogma of my upbringing, but life as another being, living and breathing on this planet. I remember thinking, There just has to be reincarnation because it wouldn’t be fair to have only one life and be born with Down syndrome.

But as the years rolled on and I experienced the vicissitudes that accompany living, I learned that fairness is in the eye of the beholder and often life does not feel fair at all for many people, disabled or not. Maybe it is, but perhaps we just are too small to see the big picture.

Ask Them

The bigger question is whether having Down syndrome is such a bad thing. Yes, all the medical and health issues suck, suck, suck. If I could wave a wand and take away all the attendant medical issues that come with Down syndrome, I would. Without hesitation.

But consider this: People with Down syndrome are vastly happier than people without Down syndrome. Geneticist & researcher Brian Skotko published the following findings  from his research:

  • 99 percent of adults with Down syndrome reported feeling happy with their lives
  • Another 97 percent said they liked who they were and
  • 96 percent liked the way they looked

Furthermore:

  • 97 percent of siblings ages 12 and older expressed feelings of pride about their brother or sister with Down syndrome and
  • 88 percent were convinced they were better people because of their sibling with Down syndrome

The Real Point of Reincarnation

Years after I wondered about reincarnation as it relates to Down syndrome, I became a Buddhist. I’m still the same messy person as I was before and my thoughts and actions are far from exercising perfect compassion for all beings. But every moment that I breathe, I am given another chance to try.

I’ve observed that being hyper-logical and linguistic is largely an impediment to living in the moment. Having high interpersonal intelligence is not. Rather than wondering if there is reincarnation in order to “make up” for a life lived with Down syndrome, I see many people with Down syndrome exceeding me in my spiritual ambitions, even as they express the full range of human emotions, including anger.

The Cost of Ignorance: Justice for Ethan Sayer

Last January in Maryland, a young man with Down syndrome tried to watch Zero Dark Thirty for a second time in a movie theater before buying a second ticket (his family believes, based upon his phone record, that he was trying to do so with his cell phone). Three sheriff’s deputies, who were working mall security, brutally apprehended Ethan Saylor for this offense. Mr. Saylor’s caregiver was present and told the officers not to touch her client because it would escalate things. She was right. It did.

Instead of treating him like they would any other adult human, intead of listening to the simple advice of his care giver, instead of using training they claimed to have received for dealing with people with developmental disabilities, the sheriff’s deputies assaulted Ethan Saylor. And instead of watching Zero Dark Thirty at the time it was scheduled, the other audience members witnessed the beginnings of a murder. After being dragged out of their view, audience members report hearing Mr. Saylor cry, “I want my mommy!” as he was shoved to the floor, handcuffed and, according to the medical examiner who conducted his autopsy, asphyxiated. His death was ruled a homicide

In January of 2013, in the United States, a man with Down syndrome was murdered by the authorities. For a movie ticket? No, for being different.

In December of last year, after the horrific shooting of school children, teachers, assistants and administrators at Sandy Hook Elementary, I wrote the essay, “We Are All in Newtown.” In the community of families that include someone with a diagnosis of Down syndrome, we are all Ethan Saylor’s family. His murder is the worst fear of a parent with a child who has DS. I believe Ethan would not have been murdered had he been a man without Down syndrome.

IMG_2087I met Ethan’s mother and sister at the NDSC convention. Hardly their first time at the convention, they’ve been regular attendees since Ethan was Lyra’s age. They had a table set up with buttons. I took several. They had photos of Ethan from the time he was a little baby, with tufty blonde hair, to his high school graduation. And they had displayed his collection of police and military paraphernalia—badges, patches, hats. Ethan, I learned from his sister, was a big fan of the police and military. One of their biggest.

I talked with his sister, a pretty woman in her twenties with blonde hair framing her face in soft ringlets and blue eyes that held my gaze while we spoke. She told me that the moms of kids with Down syndrome who have been keeping up the pressure, particularly in the blogosphere, have sustained Ethan’s family as they seek justice. It hasn’t come easily. The Sheriff’s department investigated its own officers and found no need to press charges. After the release of the Sheriff’s report, witnesses to the murder have contacted the family to tell them the report was inaccurate.

The Washington Post reported last week that, “with good reason, the Justice Department is now investigating the incident as a civil rights case.”

The NDSC Takeaway

Max and I learned so much at the National Down Syndrome Congress convention about how we can help our daughter realize her full potential. We found information, support, community and tools to help us be the parents she needs us to be.

But all we learned was not bright. We learned how far our society is from treating as fully human the members of our society who have a diagnosis of Down syndrome. From baby Grace, born in a modern hospital affiliated with a major university and summarily dismissed any potential in her life, to Ethan Saylor dying at the hands of the officers sworn to protect him as a citizen.

Next year’s NDSC convention will be in nearby Indianapolis in early July. If you’ve ever been interested in attending, I strongly encourage you to do so. You’ll find us there.

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Snapshots

Life Changes in a Moment

Each time a child is born, a family reconfigures itself. A couple become parents, an only child becomes a sibling. In families with several children, the baby is no longer the baby. We knew and expected this familiar shift last summer as we awaited the birth of our first daughter.

Then our girl arrived with her unexpected extra chromosome. Several essays about family were already mulling around in my brain when, a few weeks before Lyra was born, a friend suggested I start a blog. Since her birth and diagnoses (Ds + cataracts), there has been nothing else, for now, I can write about except this family. This includes politics & religion, which are, in my mind, intrinsic to family. Our beliefs are the windows from which we view the world and our places in it. And how others see us.

The beauty of a blog is that the author is in charge. I decide not only the topics (this family we’ve piggled together), but also the form. I find it somewhat impossible to write short, chirpy posts. I write essays. Perhaps I am limiting my readership by requiring more time and, frankly, work from readers but I am nonetheless committed to essays. Again, it seems I am incapable of anything else at the moment.

If essays require the reader to work, they require from the writer, at least this writer, hours of time, writing and re-writing, walking away and thinking only to write and re-write yet again. And more than anything, they require hours of uninterrupted silence.

Summertime, Summertime

I have written  two recent essays about how full up our house is now that everyone is home from school. And too, we have an added friend and her two dogs staying with us. Even when they aren’t forming a steady line of traffic into my office to ask what they promise are important questions (Can I eat last night’s leftovers for lunch? Do you know how much money is in my bank account? Can we go to the bird store when you’re done writing? Do you have any masking tape in your desk?), the cacophonous background noise dings and dents my attention like spitballs shot from modified Bic pens.

WPCardI am currently working on two essays of greater complexity. I’m beginning to think I will not finish them until September when four of our eight residents have returned to school, one in another state. So instead, I have worked on things I can do with regular interruption: Improving the look of Whoopsie Piggle–adding side bar features, including a link to all the “Lyra’s Latest” posts. Opening a gmail account for Whoopsie Piggle. Creating and purchasing Whoopsie Piggle business cards to take with me to the National Down Syndrome Congress conference. And at my request, Whoopsie Piggle has been linked to a site for Down syndrome blogs.

The Business of Writing

Which is to say, I’m using summer for the business of writing. You ask, “The business of writing?” Yes, the other side of being a writer is working to get you stuff out there. Getting published in one form or another. I’ve often wondered if some of the world’s best writing isn’t moldering in desk drawers because creativity and business savvy don’t always reside in one brain.  And perhaps therein lies the rub of blogging: anyone can do it because, in fact, it is self-publishing. In the old days (i.e. anything before 2000), self-publishing was synonymous with vanity publishing. People would spend small fortunes to have their book–be it memoir, novel, short story or poetry collection–printed and bound. Copies would be distributed to friends and when the author died, his or her family would have to decide what to do with the dozens, if not hundreds, of copies remaining in boxes in the basement.

Writing time so hard to come by, such a valuable commodity, I’m hard pressed to do anything but write, rather than work on submissions, whenever I can.

And so it is when other writers ask what I am doing these days, I find a distinct age break in their responses. When I tell writers over forty that I’m writing a blog, they struggle to keep their faces composed while saying something like, “Oh, really?” before quickly changing the subject. Writers under forty, however, light up with surprise at someone of my advanced age (47) working in this immediate, techno-format before saying, “That’s so cool! What’s the name of your blog? I’ll check it out,” as they type “Whoopsie Piggle” somewhere on their little smartphones.

True Confession: Part of why I’ve dedicated myself to writing in this format is because it’s all I have time for right now. As I’ve mentioned in prior essays, women writers in the canon are rarely mothers. It’s no coincidence. Getting published in anything credible takes not only talent, but time. Research is required to find where to submit, query letters must be written and sent, logs kept of submissions and so on. One can argue that it is easier to be a woman writer today. Perhaps. But I went off and had five kids and feel compelled to raise them all attachment style.

A Week of Whoopsie Piggle

July 4, 2013

A valient, yet unsuccessful, rescue attempt

A valient, yet unsuccessful, rescue attempt

Max and I get up at six a.m. because we both have work to do. I have over a hundred pages to proof and he has legal documents to write. When finished, we shower and pack. By 11 a.m., we are on the road to my stepmom’s in Charlevoix, Michigan. Three hours later, we stop in Ann Arbor, Michigan for coffee and to switch drivers. So Leif can shake a leg and run around while I nurse Lyra, I suggest we drink our Starbucks at an outside table. In one hand, Leif holds his favorite Thomas the Tank Engine. In the other hand is the race car, Lightning McQueen, of Pixar fame. Before I can even sit at a table, Leif bends over a metal rain grate in the grass and drops Lightening McQueen down a hole that is six feet deep. Nearly two hours later, after several valiant rescue attempts with a ball of duct tape wrapped around the end of a measuring tape, we convince Leif that his little red car is going on an adventure. Without Leif.

July 5, 2013

Ulrick'sMax wakes up at six a.m. in our 1950s style cabin, quietly dresses and drives to town for coffee, crackers and whitefish paté (a Michigan treat for the adults), cereal and milk (a morning standard for the kids). Jules, who had been with his grandparents for the previous two weeks, shares a bed with Leif. As everyone dresses and eats, I search through all our bags for Lyra’s Synthroid, which she must take on an empty stomach at the same time every day. I cannot find it. We drop Jules and Leif at the grandparents’ house and spend the better part of three hours finding a pharmacy with the correct dosage and getting her prescription filled. When we rejoin the boys on Michigan Beach, Leif is asleep on a towel. I lie next to him and promptly doze while Max and Jules build earthworks in the sand.

July 6, 2013

IMG_1943 IMG_1944 IMG_1945I struggle after one of my annoying insomniac episodes. Two a.m. and * bing * I’m awake for three hours. As a result, I’m not the most pleasant person in the morning. Brittle, in fact. Max is patient and loads us all up in the car. We drive 50 miles north and cross the Mackinac Bridge (pronounced mack-in-awe), one of the world’s largest suspension bridges, which connects Michigan’s two peninsulas. North of the bridge is the Upper Peninsula, or UP. We find lunch before heading to a Lake Michigan beach that is banked by twenty-foot sand dunes. We play where the Brevoort River, its water the color of iced tea from tannic acid, empties into Lake Michigan, the lake’s water strikingly warmer than it is in Charlevoix. When we get back to the grandparents’ by 4 o’clock, we find that most frustrating of all family dynamics: miscommunication. Grandma had wanted to go with us. I thought she and Max had discussed it. He assumed she couldn’t travel that far. She didn’t want us to turn around after she realized we’d left, so she didn’t say anything until we returned. Sigh, sometimes even the simple things aren’t easy.

July 7, 2013

20 mph on I-75 all the way down Michigan. 13.5 hours of travel. With small children.

July 8, 2013

Post-trip errands. The usual—grocery store, bank, gas. And then I take Lyra for a thyroid blood draw. She’s clicking mentally these days, which is beyond great. Except when she looks me in the eyes as I hold her squirming body down for one nurse and then another as each of them root with a needle in her tiny arm, trying to find a vein to give them the blood they need to fill the order.

How can you let them do this? Lyra’s eyes look at me as though she’s just learned I’ve told her a lie that changes everything she understands.

“It’ll be okay, shhh-shhh,” I tell her.

You are supposed to protect me, this is not okay, they are hurting me, why aren’t you making them stop? She demands of me with her eyes.

July 9, 2013

After morning daycare, I drive Lyra to Medina where she not only does her bi-weekly physical therapy, but also has an occupational therapy evaluation. She does great and immediately picks up a toy with her left hand and transitions it to her right one. Still, she needs a little help with the getting things to her mouth and the pincer grip. More appointments are scheduled.

July 10, 2013

At 8 a.m., Lyra and I meet with her endocrinologist, who tells me her thyroid numbers are finally at therapeutic levels. And in one month I will get to hold her down for another blood draw before she has her next eye surgery.

That afternoon, Jules and Nancy watch a movie while I am working in my office. A storm erupts as though driven in by the four horsemen of the apocalypse. “Mama! Water is pouring in the basement!” Jules runs in to tell me. Only one of our basement windows, which are all glass blocked, has a small opening for ventilation. The drain in the window well of that window has backed up. While Nancy and Jules hold trashcans and storage bins under the window to catch the flowing water, I run outside. For over an hour, I heave five gallon buckets of water out of the window well. When the water is below the opening in the middle of the glass blocked window, Jules comes out and helps me. Five gallons weighs 40 pounds, Jules weighs 90. Yet he carried and dumped bucket after bucket for more than half an hour.

Providential: We were home and caught it as it happened. Equally miraculous was that none of us were struck by lightening as it exploded all around us for nearly two hours.

Oddest of all was our little emergency took place in the front of our house while traffic backed up on our busy street. Later, we discussed how it felt like we were part of some surreal staged drama.

Carry On

Two days after the flood, we welcomed a stranger to our home. Zac will be renting a room in my house, the house the boys and I lived in before we moved in with Max. Zac’s lease begins August first, but his classes started July 15. Last week, I volunteered to house him in our basement in the interim.  Well, scratch that. He’s staying on a mattress on the floor of our cramped enclosed porch.

Yes, that makes nine people in our house. Four of us, however, are leaving for Denver and the previously mentioned annual conference of the National Down Syndrome Congress. I am driving with Jules, Leif and Lyra. When Max flies out to join us, I imagine the house will feel empty sheltering only four adults.

A two-day drive each way, Colorado is our next adventure. It need not be exciting.

I’ll try and keep you posted.

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Pictures Paint

Lyra cheers for VCGPhotography

Lyra cheers for VCGphotography

I have a thousand words or more for each of the pictures from this recent photoshoot of my littlest children. I easily have several thousand words describing my journey with the photographer.

But now is the time for the writer to step aside and let the visual artist, Vanessa Gilbert, speak with images as only she can do.

If you are a reader located in NE Ohio, I strongly recommend that you consider hiring my dear friend the next time you want to have professional photos taken. She’s amazing with kiddos of all ages, composition and final products. See for yourself:

http://www.vcgphotography.com/blog-3/

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Lyra’s Latest: Baby Doll to Baby


mamaflowers

She Awakens

“What’s the word you just used?” I asked Lyra’s ophthalmologist.

“Myelinate. It’s a coating over the nerves, just like that wire down there,” he said pointing to the floor where a thick cable traveled a short distance from the exam chair I was sitting in, holding Lyra in my lap, to the wall where it was plugged into an outlet. “Because those wires are insulated, currents travel faster than if they were not. Our nerves are the same and children with Down syndrome tend to myelinate a little later than other kids.”

Like her pediatrician, Lyra’s eye surgeon is incredibly smart. He observably delights in answering questions and, if we are discussing eyes and not nerves, he often dashes over to a poster on the wall that illustrates the anatomy of the human eye. At her last visit, I shared with him how she had changed since beginning treatment for hypothyroidism in early April. It’s not that she seems more intelligent, but rather she’s more alert and awake. A leader in a Ds support group told me that “our babies” tend to wake up at around nine months, but she was not sure why. Learning why from the ophthalmologist  reminds me that I cannot rely on any one source—be it a book, website, support group or even a doctor who specializes in Ds—to fully inform me. I need to continually synthesize all the resources available to us, the parents of a child with Ds.

And I see the beginning of a lifelong pattern of questioning whether or not something is the direct result of Lyra’s Ds. Earlier, I had asked if she refused a bottle because of the hypotonia attendant to Ds. Because she is a champ at breastfeeding, which requires more muscle strength than drinking from a bottle, I believe Lyra’s rejection of bottles is purely personality and not due to any Ds related hypotonia. Now, we’ve learned, her new vivaciousness is attributable to her Ds and not her pharmacological treatment for her thyroid issues.

She Grows

Because they are generally smaller than typical children, doctors use a growth chart specifically designed for children with Ds. At an appointment in late March, just a week before she began taking Synthroid for her hypothyroidism, Lyra was 24 inches tall, which put her in the 20th percentile for children with Ds. After two months on Synthroid, she was 26 inches tall, putting her in the 50th percentile for kids with Ds. She has gained nearly two pounds and now weighs a little more than 14 pounds. That keeps her where she was at in March, in the 30th percentile for weight, but, again, that may not be caused by anything atypical. Though she eats food, Lyra is exclusively breastfed and after six months of age, breastfed babies tend to gain weight more slowly than formula fed babies. This was true with all of my boys whom I used to joke about being on some virtual taffy-pulling machine—they’d grow taller and taller and taller without any commensurate weight gain. At nineteen Claude is still a lean drink of water, weighing in at 160 pounds on his 6’2” frame.

Lyra dresses up and grabs Claude's attention

Lyra dresses up and grabs Claude’s attention

For several months, Lyra wore clothes sized for the average three-month-old. She grew, but so incrementally as to be stalled out at size three months. Most babies triple in weight their first year and darling outfits easily become hand-me-downs after only one or two wearings, size three months being a brief weigh station on a quick journey to size twelve months. Or so it had been with all four boys when they were babies. With Lyra, I grew downright sick of dressing her in the same limited collection of clothes. In May, I went out and bought her some new things sized 3-6 months—they fit but with room for growth. After all, she is my only girl and part of the fun is the pretty clothes. Now, at ten months old and after three months of taking Synthroid, I can finally dress Lyra in the size six months clothes I’ve been longing for her to grow into.

She’s Strong(er)

The delays aren’t as noticeable the first year because babyhood milestones have broad acceptable quantifiers of acquisition. You’ll notice more delays in the second year of life.     ~A physical therapist from the county who evaluated Lyra at six weeks of age.

Lyra's favorite teething tool

Lyra’s favorite teething tool

It’s been a long time since someone has asked me if Lyra is a baby doll or a real baby (see“Lyra’s Latest: Wee Teeny Peanut”). Not only is she bigger, she’s more active and wiggles in my arms rather than inactively reposing like a dolly. Recently, I began carrying Lyra like a proper baby—on my left hip. Though she does not yet sit up on the floor without assistance, she does sit upright in my arms (and in her bouncy seat, and her Bumbo, and next to anyone who sits with her on the couch). She hangs on to my clothes and, when she can reach it, pulls a silver pendant I often wear into her mouth, biting the cool metal to soothe her toothless gums. She also grabs for our glasses—Jules and Leif are the only people in the house who don’t wear them. Hugo often lets her succeed and she thanks him by coating his spectacles with drool.

Lyra working with her physical therapist

Lyra working with her physical therapist

Crawling is a four-point system of knees and hands. In Lyra’s physical therapy, we’ve focused on breaking down the components of front and back. When she’s on her belly, we gently encourage her to put weight on her arms. We also take turns sitting cross-legged on the floor with Lyra in the center of our laps. As she leans over a thigh to play with toys set out for her, we bend her legs and make her knees bear weight. We’ve been doing this since April after she mastered rolling over.

At the home daycare both Leif and Lyra attend there are two baby boys just a few weeks older than our girl. At the beginning of the year, I observed these boys rising up on their arms, later finding their knees, rocking on all fours, and eventually crawling. They now stand, albeit briefly, on their own before kerfloping back down on their diaper-cushioned bottoms. Soon they will be walking. It’s hard not to compare. Impossible, really.

And so we were thrilled when, three weeks ago, Lyra began lifting herself up on her arms, both with her elbows bent and with them locked. We continue to cheer for her whenever we see her lift up, doing her baby workout. Come on, peanut, give me five push-ups, lift, lift, lift! Sooo big! Big girl! That’s right! Yay, Lyra, yay!!!

She Claps

At Lyra’s nine-month-old visit with her pediatrician, Dr. M asked me if Lyra was picking up pieces of cereal with her forefinger and thumb yet. “No, but she grabs them with her whole hand,” I told her. Not good enough. Lyra will be evaluated by an occupational therapist next week. Perhaps we are not objective on this count because she seems fine to us, regularly grabbing at things she wants, like my necklace or our glasses. When seated in her Bumbo, we have to clear an 18 inch circle around Lyra. This is because she will suddenly pivot in unpredictable directions and dart her hands to grab at whatever she sees—a glass bowl filled with apples, half full cups of hot coffee, sharp knives. Okay, no knives, but you get the point, if it’s there, Lyra’s liable to grab it. And really, that’s comforting on many levels. First of all, she’s seeing. She’s then processing the information and thinking (I imagine) gimme that! And, finally, she is successfully directing her hand to grab what she sees and wants.

Yay! Lyra!

Yay! Lyra!

Erupting from our house this past month are sounds like those from a stadium full of hometown fans watching their team win the championship. Lyra is given robust rounds of cheers when she lifts up on her arms. Her brother, Leif, has gotten many too as he has moved from diapers to underwear, even at night. Last week, Lyra decided to cheer too. If anyone says, “Yay!” Lyra lays open a knowing grin and with her fingers wide apart, she closely watches as her two hands and come together again and again. And we cheer again because it’s mighty cute.

She Poops. Pellets. Occasionally.

One of the many symptoms of hypothyroidism is constipation. And so I was quite hopeful that after Lyra had been on her medication for a few weeks, she would resume having soft and regular bowel movements. Things did seem to improve at first, and then they went back to the hard, black stools, produced every three to five days, which remind me of owl pellets found in the woods. But owls are carnivores while Lyra eats fruits, vegetables, oat cereal and fish when we have it; all of which she washes down with breastmilk. In other words, a diet that should keep things soft and regular.

I know Lyra’s cries better than I recall knowing those of my other babies. She grunts and squawks when she’s hungry but when she’s tired she whines and yells out. When she’s pooping, she hisses out a breathy scream of pain. I quickly move to open her diaper because her clay hard stools get wedged against her diaper. They can back up in her bottom if I don’t take her diaper off.

Recently a friend of ours recommended a homeopathic remedy. When chosen correctly, I’ve seen homeopathic remedies arrest illnesses with such remarkable speed it’s as though someone waved a magic wand. Which remedy to take is determined by what might otherwise seem like an odd assortment of questions. Seated next to me while I was nursing Lyra, my friend noticed Lyra’s head glistening with perspiration and asked, “Does she always sweat when she nurses?” She does. “Does she have trouble with constipation?” Oh, yeah. “Have her try a dose of calc carb, you can get it at the Mustard Seed.”

I bought the remedy a few days later. The information at the store said it helped cradle cap, the waxy debris that forms on the scalps of many babies. Lyra has that too. I gave her a dose two weeks ago. I gave her another one last week. The other night I was abruptly awakened by Lyra’s aspirant cries. “Turn on the light,” I told Max as I grabbed her from the crib next to my side of the bed. I peeled off Lyra’s jammies and cracked open her diaper. A ball of poo rolled forward in her open diaper, leaving no trail. Lyra sobbed as one does after a physical trial and I held her naked in my arms until she was calm.

I’m at a loss for what to try next. I’ve resisted stool softeners as they are not without side effects, but feel I may need to reconsider that decision if pooping does not become a less painful ordeal for Lyra. Whenever I am sure there is no other recourse, she has a couple of softer, less painful movements. And I again hesitate to interfere with I hope is a long, and nearly complete, process towards regulating.

She Sees

When I pick Lyra up at daycare, I immediately nurse her. She sits in my arms and looks into my eyes, her left eye crossed in slightly, but both seeing me. She reaches up for my hair as I talk to her. When she finishes nursing and is seated in my lap, she repeatedly tilts her head back to look up at me while I talk to Jenny, her daycare provider.

“There is nothing your daughter will not be able to do because of her vision,” the eye surgeon told me several months ago. Last month, he wanted to put Lyra under general anesthesia to conduct a full exam of her eyes. It still takes three of us in his office to change her contact lenses, so examining the interior of her eyes when she is awake is not really an option.

They cancelled the examination, which is treated like surgery, when her blood work came back. After seven weeks on Synthroid, Lyra went from having too much TSH to not enough. The endocrinologist cut her dosage in half and we will test her blood again in July. If she has reached “therapeutic levels” of TSH, her eye surgeon will examine her eyes in August. The postponment of  the initial exam under anesthesia was a blessing because the ophthalmologist has since decided that it is time to tighten Lyra’s eye muscles to correct her crossed eyes. Delaying the first proceedure means one less time Lyra has to undergo general anesthesia.

Long ago, in our first visit with her, Dr. M (whose daughter also has Ds) told us about our kids taking hits to the brain. “They have Ds, that’s a hit. If they develop anemia, that’s another hit. Then, if they have open heart surgery, they take another hit.” I asked her if their brains recover from the hit of open heart surgery. “No, the same is true with adults. There’s something about the reduction of pressure during surgery.” I don’t know if the brain takes a hit when undergoing general anesthesia, but it seems to me that it is something best avoided except when absolutely necessary.

As for her crossed eyes, it’ll be good to have them corrected and she’ll have better depth perception, if not overall vision, when they are tracking in tandem. I’ve often wondered which I eye I should look into when talking to someone with crossed eyes, as it’s impossible to keep my two tracking eyes on two different focal points. I don’t have that problem with Lyra and I cannot tell you why. As kitschy as it sounds, I think it’s because when I look at her, I see her with the love I have for her and my brain doesn’t have a chance to natter at me about which eye I should look at. I see my girl. Or my “sweetness” as Jenny calls her.

The Child I Most Needed to Mother           

When I was five months pregnant with Lyra, I went to see an astrologer. It was not the first time I had met with this woman, who lives three hours away in Yellow Springs, Ohio. In 1997, Hugo was a colicky baby who cried in my arms while the astrologer, whose name is Lynn, described the meaning of all the various planets in my birth chart. Saturn in this house, the moon in that house, this aspect rising,  another descending. Since that time, I have seen her every so often, sometimes after many years, for what is called a “progressive” or where things are now in my chart.

Without going into whether astrology is real or hockum, I recognize that belief systems have long intrigued me. So much so that my primary undergraduate degree is in religious studies. Personally, I don’t put much value in absolute truths, because they are absolutely subjective. I will say that each of my readings with Lynn have resonated in unanticipated ways.

“Your intuitive connection with this baby will be stronger than with any of your other children,” she told me as I sat full bellied in her consulting room. “As a result, this child will know when you are bullshitting and will tell you so. You will not be able to fool her, but she will read and know you with great empathy. Because of this bond, she will be a harder child to leave. Don’t be shocked if you find it hard to send her to daycare so you can go back to work fulltime.

I didn’t ask Lynn any questions about my baby, but she kept returning to her. Nor did I know that the baby I was carrying had Down syndrome, in fact, I’d been told otherwise. And yet Lynn’s description of the baby growing in my womb fit the description of a child with Ds in many ways.

“Because your moon is in Neptune, there is an interesting aspect to this baby. She will be deeply empathetic and so open that you should be cautious of who you let hold her. Do not pass her to someone she does not want to go to.”

After circling back time and again to talk about the baby during my hour long appointment with her, Lynn returned one more time as she ended our session:

“This is the child you most need to mother. Listen, I’m not saying she most needs you, but you most need her. There is more for you in this child, a deeper meaning in being her mother.” And then, almost as an afterthought, she threw out there, “Oh, and expect some sort of giftedness in this child, she’ll be musical or artistic.”

Signs Posted

When the boys were little, I posted quotes in places where they would have no choice but to read them. The best spot is next to the toilet. Often, I would take discarded watercolor paper the boys had painted with pastel colors at the Waldorf school. I would cut the paper into shapes, flowers or just round-edged rectangles, and then I would sit down and slowly copy a quote that had struck me, such as one from Marcus Aurelius:

When you arise in the morning, think of what a privilege it is to be alive: to breathe, to think, to enjoy, to love.

Or a passage from a book like The Arabian Nights:

A fool may be known by six things: anger, without cause; speech, without profit; change, without progress; inquiry, without object; putting trust in a stranger, and mistaking foes for friends.

Other times, I would just pin cards to the wall or cut out quotes from the newspaper and tape them up. Of them all, what the boys committed most deeply to memory, and for years have frequently cited, is a small line from a long list of famous things Ben Franklin is purported to have said: Beer is a sign that God loves us and wants us to be happy.

Over time, and particularly when moving to the new house, these scraps of sayings have disappeared. Of all the ones I penned on watercolor so many years ago, the one I think of most often was an abridged quote from the Indiana lawyer-poet, Max Ehrmann:

You are a child of the universe…And whether or not it is clear to you, no doubt the universe is unfolding as it should.

 

 

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Obstacles to Writing

House Full Up

Zen Monks Wash Their Own DishesWhoopsie Piggle is currently home to eight people, four dogs, three cats and a singular goldfish who resides in a red plastic sandbox, shaped like a crab, which became a mini-pond two years ago when the lid was left off during a summer storm. The acre and a half of yard and gardens are robustly blooming with both intended and unintended plant life. Daisies and dandelions, rhododendrons and thistles. Many of the birds that Jules lovingly feeds are thistle eaters and while he feeds them only sterile thistles, the seeds they bring in their bowels and evacuate all over our gardens are viable and innumerable.

Big Yard

IMG_1799

The “wee-booms,” as Leif calls them, temporarily placed in front of the area we hope to spend the summer transforming into a magical corner of the yard.

Last fall, Superstorm Sandy took out two trees in our backyard. The trees took out five sections of our wrought iron fence. Rather than pay for tree removal, Max cleared the trees himself and the homeowner’s insurance covered the fence repair. Thanks to the storm, we now have a sunny corner  for Leif and Lyra to have a play area. That is, once we clear out the undergrowth, level the ground and landscape. Claude and Hugo worked on pulling out the rooty undergrowth the weekend before last. The next day a rash began spreading across Claude’s limbs and chest. Like my Grama Dorothy, Claude only needs to be upwind of poison ivy in order to break out with the signature streaks of itchy rash. After a medical visit and prednisone prescription, the Toxicodendron radicans still went systemic and Claude had to return to the doctor’s for a shot.

 

Medical Appointments

Big girl with her vintage Romper Room dolly

Big girl with her vintage Romper Room dolly

When I think of working fulltime, and I am still applying for positions, I wonder how we will manage all the family’s medical appointments. We had nine this week alone. The big boys had four separate appointments, I had two, and Lyra had PT, a well-baby check up and a contact lens change and eye exam with her ophthalmologist. Last week, the eye surgeon had planned on putting Lyra under general anesthesia in order to perform a complete evaluation of her eyes. The surgeon would have changed her contacts then, but Lyra’s lab work was not acceptable for anesthesia. When Lyra first went on Synthroid, her TSH levels were too high. After six weeks on 25 mcg of the medicine, her TSH levels were deemed too low. We sre now trying six weeks at half the previous dose of Synthroid before testing her levels again. Even though we haven’t fully figured out her ideal dosage, Lyra has begun growing more rapidly in the two months she has been taking Synthroid. Though still on the small side, she now feels less like a baby doll and more like a baby.

Teens & Tots

The boulder-sized spools of English ivy Claude and Hugo have eradicated from the front beds this past week

The boulder-sized spools of English ivy Claude and Hugo have eradicated from the front beds this past week

For six months, beginning when Jules turns thirteen later this month and until Claude’s twentieth birthday in January, we will have three teenagers in the house. Just because they are big doesn’t mean they don’t need time and attention. Claude came home in early May from the University of Michigan and while he did odd jobs as a catering waiter and babysitting, it has taken him a month to land full-time employment for the summer. We’ve learned that the ease of online applications has facilitated employers asking endless and often goofy questions. Each week as I try to write during the scant hours both tots are at childcare, Claude has strolled into my room with his beautiful laptop (the one I bought for his high school graduation because it was required by the UM School of Art & Design), sat next to me at my desk, and read off the questions he thought were obtuse, silly, or both:

If you are working on a project and customers keep coming up to you for help, you should a) tell them to see someone else for help b) ask a manager to assign someone else to the project c) help the customers and tell the manager to do the project herself.

There are 26 weeks in a year, true or false?

Amy and Bill have five lollipops. Amy only wants three. How many does Bill want?

IMG_1827On the tot front, Leif has graduated from diapers to underpants in the past month. That means we’ve all be spending time encouraging him to go potty and cheering him like he has hit a home run at Progressive Field when he does (especially #2). And when he has accidents (particularly #2), Leif has been shown the joys of rinsing one’s own underwear in the toilet.

Max the Invisible Attorney

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At the Highland Square Farmers’ Market

Okay, so we can see him, but we rarely do these days. Law is a profession driven by, among other things, deadlines. He has a big one coming up and it’s hard to remember when he regularly slept past 4 a.m., left the office before six p.m. and didn’t work on the weekend. We do miss him because he’s fun to be with but also when he is home it helps tip the ratio of adults to children from being wildly askew.

And so we were delightfully surprised yesterday when Max pulled in the driveway at five o’clock. Together with the three younger children, Max and I strolled through our neighborhood farmers’ market, Leif keeping close to his dada.

Value Added Adult

220px-Liriope_muscari_flowersAt the beginning of May, our friend Nancy moved in with us. After living in Akron for decades, Nancy moved to California eight years ago. She’s returned because her family, including two granddaughters, is here. Rather than complicating our already hectic lives, we’ve soon come to wonder how we managed without her. When she isn’t looking for work or a home of her own, Nancy has taken on several projects in the garden. Just behind our house are two rows of sweet bay magnolias growing in  long beds of liriope muscari. For the first few weeks she was here, Nancy spent many of her mornings in those flowerbeds. She pulled her gardener’s belt, with its impressive collection of tools, from a box and strapped it on. She then trimmed last year’s dead leaves from the lily-like plants and weeded the grass, nutsedge and scourge of thistles from the beds.

IMG_1819Nancy also loves mowing the lawn and is able to create diamond patterns in the turf, so it looks like some professional sports field. Another adult, she willingly drives the kids places, goes to the grocery, feeds the dogs, holds the baby. Even when Max is home, having a third adult in the house is an advantage. But with him currently gone so much, it feels like a gift.

The only drawback, if it can even be called that, is how much I enjoy talking with Nancy and I find myself lingering in the kitchen when I should be up in my office writing. Then I think back to when the big boys were little and how starved I was for adult conversation. Talking into my writing time is the better “problem” to have. Hands down.

Finding Balance

IMG_1806Yesterday, I gave myself a day off. It’s the first full week of summer vacation for Hugo and Jules, the weather was mild and I gave in to the call of the garden. For four hours, Jules helped me as we planted sunflowers, weeded flowerbeds and the cracks between flagstones pavers. I fixed a planter that wasn’t draining and planted lantana in two others. Hugo attacked the English ivy in the front, cutting it off of a tree and pulling up the roots around the trunk. Nancy uncovered a drain in the back corner of the driveway, which had become so clogged with pine needles and debris that a small lake would form after each rainfall. Her two English labs, water dogs that they are, will miss frolicking in the muddy water as they have several times in the past couple of weeks.

Writing is easiest for me when I have the house to myself for several hours, beginning early in the morning. But now it’s summer and the big, old house is full of people, the park-like yard is full of happy dogs and (as a result) not-so happy cats. The gardens need tending and I, too, want to be one of the gardeners.

IMG_1792If I were dying, what in my life would still be important to me? I ask this question of myself regularly to separate what keeps me busy from what is truly important. The people, the conversations, the meals, the home and, yes, writing about it all. The endless bustle is exhausting but one day they will all be off and it will just be us, Max and me. As delicious as that sometimes sounds, I am sure I will look back on these days as the best of my life. For I already do.

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Perpetual Postscripts

The morning paper habit

The morning paper habit

I’ve been thinking lately of E.B. White, he of children’s fiction fame for Charlotte’s Web and Stuart Little, who many today may not know was also a fine essayist. A regular contributor to The New Yorker, I once heard in an interview with his stepson that White worked on his essays tirelessly, drafting and rewriting over and over, never quite happy with this section or that sentence. But then the postman would arrive and, if he was to meet his deadline, White would have to turn over his essay. He had to stop.

The past few days, as is so often the case after I’ve posted one of my own essays on Whoopsie Piggle, I find my brain still writing that which I’ve already posted. I was up at three in the morning after “Screen, Paper, Sound” posted to add a photo of us playing Euchre at the kitchen table. I’d meant to add it before posting, but somehow had forgotten. Easily fixed, that oversight.

The next day, I asked Claude if, when he was a kid, he ever played the video games “Halo” or “Grand Theft Auto” at friends’ houses. He told me he had and I asked where and he told me. At the time, the mother of that friend had sworn to me that the only games they had were auto racing games and the sports games on the Wii. Claude also played a lot of GTA this past year in his dorm at Michigan and sheepishly confessed that he enjoyed it. “That’s different,” I told him, “you’re an adult now and can choose what you do with yourself. Besides, your brain has developed, but it’s different for kids.”

Claude going after the ever-spreading English ivy

Claude going after the ever-spreading English ivy

Claude’s habits are set. He reads the paper with the rest of us and probably finishes more copies of The New Yorker than anyone else in the house. He’s started writing essays of his own and, in the weeks that he’s been home from college, has purposely scheduled time to do so. This isn’t for an assignment, this is on his own for his own satisfaction. He’s been working odd jobs, powering through a significant amount of tough yard work (Max has made Claude the second in command on his English ivy eradication program) and happily spends hours at a time taking care of Leif and Lyra so that I myself can write. If he plays video games with his roommates at college, meh, he’s a balanced guy, video games are not at risk of becoming more real to him than life.

And that’s it, isn’t it? The habits we choose, whether conciously or by some immediately unobservable pattern, that shape who we are and how we interact with others. And so, in this morning’s New York Times, Jonathan Safran Foer has an op-ed piece that speaks to our changing habits as technology changes and the concern for what we risk losing, if we aren’t mindful, of our humanness:

Most of the time, most people are not crying in public, but everyone is always in need of something that another person can give, be it undivided attention, a kind word or deep empathy. There is no better use of a life than to be attentive to such needs. There are as many ways to do this as there are kinds of loneliness, but all of them require attentiveness, all of them require the hard work of emotional computation and corporeal compassion. All of them require the human processing of the only animal who risks “getting it wrong” and whose dreams provide shelters and vaccines and words to crying strangers.

In otherwords, be present and be kind. Don’t allow your technology to cocoon you from the humanity to which we are all belong. And that’s why my children did not grow up with video games in the house and minimal “screen time” in general. But I, too, have to monitor my own time spent on that little phone with those seductive apps. Including the one for WordPress.com that lets me monitor the stats for Whoopsie Piggle. It’s remarkably addictive.

This technological format I write in, a blog, allows me to make changes ad infinitum to the original copy and also to follow up, like I am now, whenever I want. Does this improve or detract from the writing? E.B. White had to stop, he had to pass it over to the mail carrier. But I wonder, as the mail carrier drove away with the essay down the writer’s driveway in Maine, did White call his editor at The New Yorker and give him changes over the phone?

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Screen, Paper, Sound

Grama's favorite photo of herself

Grama’s favorite photo of herself

After I’d spent the summer with my grandparents in Arizona and had returned to my mother’s house in Ohio, my grandmother wrote in a letter to my father and stepmother:

                                             August 29, 1979

Holly is a beautiful young lady, but a little headstrong because she has been on her own so much while Judy worked. Judy has quit her job for now so she will get more supervision. Holly is very bright, but they don’t give her much intellectual stimulation so she doesn’t stretch her mind.

Ouch. Grama nailed it.

Network Reared

At home with my constant companion

At home with my constant companion

When I was a junior in high school and lived with my father, stepmother and two halfsisters, what I most enjoyed was the lack of something: a television. There were no home computers in 1980, but everybody I knew had at least one television. Prior to that year, when living with my mother, much of my childhood had been spent with a black and white “portable” television that sat across from me at the table. The small TV was memorable because its plastic case was upholstered in denim, like a pair of tight fitting jeans, complete with western stitching and the brand name on a leather rectangle. I’ve never seen another television like that, then or since. Even when searching online.

My mother worked in bars and left for work shortly after the school bus dropped me off at our house, which was one in a single row built on the edge of a farm field. Across the street was another farm field and in the flat land of western Ohio, the views from the front and back of the house stretched for miles, unimpeded by little other than corn and soybeans in the summer and snow in the winter. My stepfather sold farm machinery and traveled during the week. After I waved good-bye to my mother from the large picture window of a living room that contained no furniture, I settled myself in front of the kitchen TV with my dinner. Until the evening news came on, I watched a string of syndicated reruns including Hogan’s Heroes, Adam-12, and The Odd Couple. When the evening news aired, I got up from my seat, cleaned the kitchen, took a bath and by seven o’clock resettled in front of my friendly, denim-clad box for the game shows that preceded the evening’s prime time programming. Depending on the night and what was on the TV, I watched until eleven o’clock. If I didn’t like what was on any of the three stations, I read in bed until I fell asleep. By the time I’d finished the eighth grade, I’d read everything Stephen King had published. Alone in a house surrounded by the wide open dark, King’s novels were not good soporifics and I often read the bible afterwards.

The Rangeline Road house near Dayton, Ohio

The Rangeline Road house near Dayton, Ohio

Generally, my mother did not return until well after midnight, but on occasion, when the bar she worked at was slow, she’d get home early. Only once was I caught immersed in a program well past my official bedtime. Her rage, instantly there like her best friend, complete with flying spittle, bulging neck veins and her long fingers that reached for my hair as I ran from her (I kept hidden a box containing the fistfuls of hair she would toss to the ground after she’d ripped them, from time to time in a fit of anger, free from my scalp), was memorable enough that I never let it happen again. Thereafter, I kept the kitchen lights off and one ear attuned to the sound of the garage door opening. If I heard its mechanical rumble, I snapped off the TV and dashed to my bed before she entered the house, only to lie awake wondering if she’d touch the TV to see if it was warmer than it should be.

It was not from activity that I was such a skinny kid. Genetics mixed with a good bit of chronic anxiety did the trick.

Screen Free Family

Home in Michigan

Home in Michigan

When I went to stay with them in 1980, it was the first time I had seen my father, stepmother and half-sister, Becky, since 1970. I had never met my youngest sister, Kate, who was born in 1972. With these other parents of mine, everyone was home most nights and we generally had dinners together. My sisters and I complained about our dad’s miso soup, a mealtime frequent flyer that was always thick with cabbage, but adored my stepmom’s bread. She made several loaves at a time and we would devour the first loaf before it was cool enough to slice without tearing; thick squares were chopped from cold sticks of butter and arranged on the hot pieces of bread like the dots on dice, where they softened into salty-sweet globs.

Most weekends, we spent at least one evening together and after dinner played cards or board games. Sometimes, we played rounds of backgammon, lining up to take turns when someone lost. The rest of us would watch the game or, if not, sit in the small living room and talk or read books. All the while, music I’d never heard before played on the stereo—bands like Canned Heat or Little Feat.

Hot air popcorn poppers were popular then, but my dad still made his popcorn on the stove in a pan. Repeatedly, as the popcorn popped at peak mass and threatened to overflow like lava, Dad poured a river of popcorn into a large mixing bowl where we mixed it with melted butter and salt. Dense and greasy, it made hot air popcorn seem like an unsatisfying ghost of the real thing. Even the next morning, when the popcorn was cold and the cooking oil and butter had emulsified with the salt, we would chew on handfuls before breakfast.

It was that year that I heard National Public Radio for the first time. I learned to listen to the news, in part because I was older, but also because on NPR, the news was interestingly told. I have never stopped listening to NPR (and for the record, I’ve long been a dollar-a-day member of my local station, pausing my contribution only briefly during my divorce).

My Turn

In recent years, I’ve come to understand how much of the quotidian of my father and stepmother’s home life I have adopted in raising my own children. From little things like storing my kitchen dry goods in large glass jars to birthing all my children at home, many of my choices for my household have been strongly influenced by my time with my family in Northern Michigan.

And so it was easy to give up television when I began having children. Our viewing was soon limited to whatever we could get on video. That seemed somewhat radical back then, as did the bumper stickers that stated, “Kill Your Television!” Still, the house was not media-free, nor as someone who studied film in college, did I want it fully to be. However, without access to regular television, what is viewed can be controlled. Which isn’t to say, in hindsight, I don’t regret some of the things I let the boys watch. I particularly cringe when I remember owning “Pokémon” videos.

My children have never had video games, either hand-held or larger consoles like an X-box or a Wii. However, I knew my boys played them when they went to their friends’ homes. I was emphatic that I did not want them to play games that glorified violence, such as “Halo” or “Grand Theft Auto.” Whether or not they did – and if so, how much – I don’t know. But none of my children ever asked me to buy them gaming systems of any variety. I’m sure they didn’t bother because they knew I’d say no, but also they just weren’t interested enough. I suspect part of the reason they weren’t is that they had no exposure, at least at home, to television commercials promoting any number of consumer items marketed for kids.

Instead, I played games with my kids. At first, there were the pre-reader games that, for the adults, made watching paint dry seem like an exciting alternative. You know: Chutes and Ladders, Don’t Be the Dragon and, the worst of them in my opinion, Candyland. But by five or six years of age each of the boys graduated to the card game Uno, which we all enjoy to this day. After Uno, it wasn’t long before we branched out to popular board games: Trouble, Sorry, and Monopoly, which I had played as girl, as well as newer ones like Cadoo and Apples to Apples. When Max came along, I relearned Euchre, a game I had learned in high school, and we taught the boys. For at least three years, it has been the reigning favorite game in the house.

Our Media

DAILY

We moved to Northeast Ohio when Claude was six, Hugo three and I was pregnant with Jules. Since then, I have maintained a daily subscription to the Plain Dealer. We start our mornings by calling out who gets to read the funnies. Most weekdays during the school year, Hugo gets up at 5:30 to do his homework and will start the coffee, feed and let out the dogs, and bring in the paper. Deservedly, he reads the funnies first. Jules and I tend to come down around the same time and I prefer to let him read the funnies before I do because otherwise he’ll stand behind me as I sit at the table and make comments in my ear about the strips he’s reading over my shoulder.

Meanwhile, the rest of the paper is spread across the kitchen table and inevitably other sections get read. Hugo likes to check the sports section to see how the Indians did if they had a game the day before. Claude reads the op-ed page and any attention grabbing headlines. On Thursdays, Jules foregoes the funnies in favor of the weekly birding column. I don’t remember when they all started reading sections of the paper beyond the funnies, it happened organically. And it happened because the paper was there and a television was not.

WEEKLY

The longest subscription I have had in my life was Newsweek Magazine. Until a few years ago, one of the first sections of the magazine was a page of quotes and editorial cartoons from the previous week. Like the newspaper funnies, my boys turned immediately to the editorial cartoons when Newsweek arrived in the mail. As they became older, they’d start reading the quotable quotes of the week and then ask me, “Who’s Dick Cheney?” or “Who’s Donald Rumsfeld?” or whomever it was that had been quoted. I’d like to think their nascent understanding of politics began with the conversations about those quotes and the quoted.

Unknown-2The method by which the boys began reading the New Yorker (once Max and his subscription were in our lives) should be clear. I wonder how many children over the decades have been lured to the pages of that lofty publication by the one-panel cartoons liberally sprinkled throughout each issue?

BI-WEEKLY

Because the big boys seem to love learning about inventions and experiments, I picked up a subscription to Science News a couple of years ago. It’s not cheap and I thought about dropping it this year and said so in passing while processing a stack of magazines in the kitchen, really talking aloud to myself more than to anyone around me. I gathered from the ensuing uproar that the three big boys read each and every issue, cover to cover, and I promptly renewed our subscription.

MONTHLY

Unknown-1I get This Old House, The Sun Magazine, and Creative Nonfiction (the latter I believe I will have in perpetuity without renewing ever again because I’ve submitted so many pieces of my writing to their contests with an added fee for subscription, none of which have won). Claude and Hugo get Esquire. Jules gets Audubon, Living Bird, The Nature Conservancy, Automobile and Cook’s Illustrated. And we all consider ourselves recipients of The Atlantic and The Smithsonian Magazine.

A Bit Much?

I have a friend who for years has supported herself with an amalgam of odd jobs, including house cleaning. Many years ago, she had a client who was a psychologist with a hoarder problem. The woman subscribed to The New York Times and had copies stacked all over her house that she had not finished reading. Not one or two weeks’ worth, but years and years of The New York Times. When my friend tried to help her client get rid of a few stacks of the older newspapers, her client had a fit—she was determined that she would read them all. One day. Well, I do know how she feels.

imagesSimilar but different, my own father could not part with any of his issues of The Rolling Stone Magazine. He had read them when they’d arrived, but he had them archived in stacks three feet deep in corners of the house. If ever anyone wanted to read a particular issue in crumbling newsprint, he had it. Somewhere.

True Confession

I have a stack of my own favorite magazines from over the years. They fill one magazine holder in the living room. If I want to add one, I require myself to eliminate another (and usually do). And, yes, it’s hard to put two months’ worth of The New Yorker that I haven’t had a chance to even look at into the recycling, but we regularly do. Max has taught me to stop reading the table of contents beforehand because there is always something worth reading and before you know it, I’ll be like the newspaper hoarding psychologist. “Besides,” says Max, “another one will be here in a week or less!”

Enjoy it while we can

Last summer, before he moved into the dorms at the University of Michigan, Claude asked if I’d get him his own subscription to Newsweek and The Atlantic. Or maybe Harper’s (because who doesn’t love those crazy lists?), which we used to get but the renewal didn’t happen, more by accident than intention. When he got settled at school, however, Claude quickly realized that he had very little down time and no longer thought he could keep up with Newsweek or anything else coming regularly. Instead, I put together a handful of interesting issues of Newsweek and an assortment of other publications from the aforementioned lists that had arrived after Claude gone off to college.Unknown

I learned of the demise of printed Newsweek in a Facebook post. From an English professor. Who is also a novelist. My subscription ended a month after the magazine went digital and I have yet to renew. Maybe I will or instead, I might switch to Time Magazine, even though I do not share their more conservative bias.

Less than six months after Newsweek stopped being delivered by our mail carrier, The Plain Dealer announced that it was reducing home delivery from seven to three days a week. Owned by Advance Publications, the reduction of The Plain Dealer home delivery potentially means a reduction of its staff and, therefore, coverage. This has been experienced at other Advance Publications’ papers when home delivery has been reduced, most notably at The Times-Picayune in New Orleans.

From fashion to technology, I’m often slow to adapt. I never cottoned to the wildly popular Ugg Boot/house slippers as fashionable footwear, a trend that continues, any more than I thought Crocs were anything but ugly (except maybe on small children for whom they are easy to get on and off with no adult help). Similarly, I did not believe electronic publication would take off at all, let alone so rapidly, for a variety of reasons—the resolution is not what it is with paper and ink, you can’t hold a computer the way you can a book, magazine or newspaper, and you can’t spread them all over the house and know that the children will find them and read them as much by accident as desire. Well, tablets and electronic books are taking care of some of those concerns. And like other things that aren’t as good as what becomes the dominant product (think Beta versus VHS, vinyl albums versus CDs versus MP3s, 35mm cameras versus digital cameras), the resolution of ink on paper appears to be worth sacrificing for the convenience of instant access. At least for a growing majority.

More Confessing

I’m guilty. I can forever skip television, video games and all sorts of electronic errata that suck out valuable time from the precious few years I will live. But where I’ve been sucked in is the damn smart phone. Most nights of my adult life, I’ve fallen asleep with a book in my hands. Or a magazine. Or a newspaper. Now, I fight the compulsion to check my email one last time and then, time-brain sucker par excellence, Facebook. With a large family, personal reading time is hard to come by. That I give the few quiet minutes I have at the end of the day to a string of pithy postings that I will likely not recall a week, or a day, later concerns me.

Still the Same

For now, the paper still covers the kitchen table each morning. Shortly after our friend, Nancy, moved in with us last month, she subscribed to The Akron Beacon Journal and the Sunday New York Times. Each morning, we continue to read articles aloud to each other in the kitchen as we drink our coffee in our pajamas before heading out into the world. I don’t know what we will do when in August The Plain Dealer begins delivering only three days a week. I suspect, as when Newsweek changed, nothing.

I love reconnecting with old friends on Facebook. I also have found various groups on Facebook, particularly those related to Down syndrome, to provide valuable support and information. Writing essays for a blog that has an attendant Facebook page has come easily to me and I enjoy the format. I’m not interested in a life without the Internet and I have mostly embraced the advances in technology and publishing online while simultaneously trying to balance these benefits with my concerns for privacy.

Earlier this week, I learned late one evening that a friend in another state had suddenly died. Before I went to sleep, I read his Facebook wall and saw, albeit in small measure, what he was thinking about in his final weeks of life. I looked at photos of him and his family and all that they did together the past few years. And I was grateful for Facebook.

Choose Wisely, Choose Wisdom

Two boys came from the exact same background and one went on to work in a gas station and the other became a brain surgeon. You know the difference? The brain surgeon’s mother was Jewish. She pushed him to do his best. All the time.

~The Orthodox Jewish psychologist who tested Claude for his dyslexia in 2002

I have spent my life working, as my grandmother wanted, to stretch my mind. I did not go to college fulltime until I was 21. When I graduated at 26, I had enough credits for two bachelor’s degrees. Still, at times I feel like an autodidact, perennially overcompensating for what I perceive are holes in my education or intellect by reading more, learning more, asking experts. Clearly this has influenced, as much as any one person, how I have chosen to raise my kids. They well may have other things to complain about in regards to the choices I have made, but pushing them to do their best academically, to go beyond what is assigned and find the satisfaction of learning something they didn’t even know they would find interesting, is something I’ll not apologize for. I’m not quite a “Tiger Mother,” I’m too lazy for that and truly do believe in down time for kids. I’d like to think I’m more of a “Jewish Mother” as described above.

IMG_1583The removal of television from our home nearly twenty years ago now seems like a quaint notion, like closing a window on a capsizing boat to keep the water out. We had no idea of the technology that was coming, but getting rid of the television was absolutely the right thing to do. Regardless that four of us now have iPhones, that Claude and Hugo both have laptops of their own, we still keep the screen time pretty low. Line up my kids and ask them how they would most like to spend an evening at home with the family and I’ll give you 8 to 1 odds that they’ll pick sitting around playing cards or board games. Every time.

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Changing Expectations: Lyra’s Latest

Lyra's feet, dirty from playing in the grass

Lyra’s feet, dirty from playing in the grass

“I recently read that all people with Down syndrome develop Alzheimer’s in their forties or fifties, is that true?” I asked the pediatric geneticist as she examined our two-day-old baby. A few months earlier, I had read a Newsweek cover story about the care of adult children with developmental disabilities. The sentence about Alzheimer’s had leapt out at me even though I had been told there was little reason to suspect the baby I was carrying had Down syndrome or any other medical concerns. When she was born, however, she had several Ds markers—upslanted eyes, a tongue that darted out of her mouth, and sandal toes (her big toes are far from her little toes, almost as though they were attached as an afterthought). Even before we went to the lab to have her blood drawn, we understood that the genetic testing would only to confirm what we already knew. We had known it in our hearts since I had commented, moments after her birth, that Lyra’s eyes looked “kinda Downsy.”

“You know,” said the geneticist, “it’s really hard to predict what you can expect, what with all the therapies they have developed, things have changed so much in the last twenty years for children with Down’s.” That sentence stuck in my head even while the first few weeks of Lyra’s life found us submerged by what having a child with Down syndrome can mean, including finding resources to help us learn what we could about our daughter’s condition and, of course, dealing with her cataracts and eye surgeries. All the while, the geneticist’s words whispered repeatedly in my mind, with all the therapies they have developed.

Entirely Different

The remarkable increase in life expectancy in recent decades was one of the first facts we learned about Down syndrome and it highlights the dramatic improvement in the research, care, and therefore, quality of life for a person born with Ds today. In 1985, shortly after Max and I graduated from high school, the life expectancy for a person born with Ds was just 25. Today it is 60 and that number is expected to continue increasing as modern medical research also continues to advance the understanding and amelioration of Ds. Not only are people with Ds living longer, they are living vastly different lives than they would have half a century ago. In fact, as the National Down Syndrome Congress has shown with their “More Alike Than Different” campaign, today most people with Ds can expect to lead rather, well, “typical” lives.

Why Are Things So Different?

Until the 1960s, most children born with Down syndrome were institutionalized. When I was growing up, it was rare to see someone with Ds. I never had a classmate with Ds nor do I recall any special classrooms for children with Ds in any of the schools I attended. And I am not aware of any families who had children with Ds, which doesn’t mean that they didn’t exist, but those that did were perhaps institutionalized and not discussed.

Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in1964, a study was conducted comparing infants with Ds who were institutionalized to a group that were home raised. The study continued until the children were eight years old and found that children with Ds who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.”

It was not until the 1970s that the two major U.S. organizations that advocate for people with Down syndrome, the National Down Syndrome Congress (1973) and the National Down Syndrome Society (1979), were created. Both organizations make clear that caregivers—parents, teachers, friends and extended family—should set the bar high for kids with Ds. Children with Ds most often meet and regularly exceed the goals set before them. The myths on what people with Ds are like and capable of have been falling like scales from our eyes and today there is every reason to expect a baby born with Ds to have a full and productive life, including mainstream schooling, college, independent living, careers, even marriage and (what surprised me the most) driving automobiles. All of which indicates that as a society, we were operating on grossly false assumptions for many decades, tragically so for children born with Ds prior to the 1970s.

Not So Pretty

In the mid-1980s, my father and stepmother worked in a group home for adults with developmental disabilities, including some with Down syndrome. Across the nation, long-standing institutions that had housed people with developmental and physical disabilities were closing and group homes were opening to meet the need to care for many of these people. My parents worked in a freshly constructed ranch-style home, built to house eight residents. In the center of the ADA accessible house was a kitchen and living room, and on both sides of these common areas were four bedrooms, one for each resident.

I was eighteen in the spring of 1984 when I took a Greyhound bus from Tucson, where I was living with my grandma, to Northern Michigan. I had not visited my family since leaving two summers earlier. When my father picked me up at the bus station in Traverse City, the hour long ride to the house was awkwardly filled with fits and starts of conversation. We had not yet talked about why, after living with him and his family my junior year of high school, I had decided to return to Ohio and live with my mother for my senior year. And we never did. Instead, we talked about my half-sisters and other people we both knew. Eventually my dad began telling me about the job working at the group home and we both relaxed. My dad felt like he had finally found his career calling and with his eyes cast on the road ahead of us, he effortlessly described his work, the words pouring like water from a full pitcher.

The day after I arrived, my dad took me to the group home to meet the people he worked with. Many of the residents were in wheelchairs and most were overweight. When my father talked with the residents, introducing me to each of them, I could not understand what they were saying. I tried to be friendly, but the truth was, I couldn’t wait to leave. I didn’t see people, I saw drool and adult diapers.

“How do you work with those people every day?” I asked my dad when he got home, “Isn’t it depressing?” Which was a fair question. Depression was like a card my dad carried to excuse himself for his significant inactions, especially as they related to those of us who, from time to time, would reasonably wish to lean on him. People like his wives and children. Then again, I ask myself, who among us has not risen to his or her better self with strangers while our seamier aspects are saved only for those who know us best?

“You know, Hol,” he told me, “if you got a job there, after a week you would no longer notice the disabilities of the residents. They’d just be the people you worked with, just like anywhere else.”

“But they aren’t like the people anywhere else,” I said.

“Actually, they are. You would soon know them as Jim or Bob,” he said naming a few of the residents at the group home. “You’d know what they like and how they’re doing, just like you would with anyone in any job. And really, Hol, you’d no longer see their disabilities, you’d just see them as the people they are.”

Let me stop and say that I am not upset with the younger me who, the first time I was introduced to severely disabled adults, recoiled. At the same time, my chest physically aches to think that anyone would feel similarly about my daughter when she is grown. My ignorance was ugly, but I did not remain ignorant.

As with many things, education builds awareness, exposure builds understanding.

Loving People

My father worked at the group home until he moved to Arizona in the early 1990s, where he also worked with adults with developmental disabilities. Over the years, I came to feel I knew some of the people he worked with because of the stories he shared. Many had spent their entire lives in institutions, which was at the root of some of their more difficult behaviors. For instance, both my parents told me they worked to get the group home residents to eat their meals slowly and not scarf their food without swallowing. In the institutions, residents were fed in large cafeterias with little oversight and many had learned to eat as fast as possible in order to prevent anyone from stealing their food. Back then, eating at a table in the group home was often a resident’s first experience in family style dining with no threat of bullying.

My dad became particularly close to one of his clients in Michigan. A quadriplegic, Jim found work typing out address labels (this was before computers were ubiquitous). My father jerry-rigged a helmet by affixing the writing end of a pencil above the center edge of the helmet’s brim. With the helmet strapped firmly under his chin, Jim’s head bobbed over an electric typewriter as he used the pencil’s eraser to type out names and addresses on sheets of labels. Jim used the money he earned typing labels to buy gifts for his girlfriend. She lived in a different group home and Jim saw her on weekdays at the adult day care facility they both went to. Like Jim, his girlfriend was in a wheelchair. But on more than one occasion, the two of them somehow managed to get their shoes and socks off and were found sitting away from any activity, their bare feet entangled.

One evening when I was living in Boston, my dad called me from Arizona. In 1995, before cell phones found their way into everyone’s pockets, long distance calls were expensive and, thus, infrequent. Claude was a year old and I’d long gotten over my squeamishness of body fluids. Beyond diapers, I’d thought nothing of holding my baby as he repeatedly vomited on me a few days before his first birthday. Comforting my child trumped the sour smell of puke. Sure, he was a baby, my baby even. But nothing could have made me love him any less than I did including, as I discovered a few years later, a learning disability.

“My friend Jim died,” said my dad when he called. It was the closest I’ve come to hearing my dad cry. Maybe he was crying. I didn’t ask.

“Who’s Jim?” I asked instead and he reminded me of the resident in the Michigan group home. Once he’d moved to Arizona, my dad came home only a couple of times for important events like weddings. When he did, he always went over to the group home where he’d worked to visit Jim. My dad did not learn about Jim’s death until weeks after his funeral, but even if he had learned immediately, he would not have been to leave work and travel so far on short notice. Sitting in my kitchen in Boston, I listened to my father as he talked about his friend at length, a telephonic memorial service of two.

Those Therapies They Have Developed

One of the common issues that nearly all children with Down syndrome face is hypotonia, or low muscle tone. It can cause them to have trouble eating, speaking, learning to sit up, crawl, walk and run. (For more on the challenges facing babies with Ds, consider clicking the link for this well-written post from the blog, “Noah’s Dad.”

As expected, Lyra does have hypotonia, but I believe it is only mild to moderate. She does not spring with wirey muscles like my boys did when they were infants and babies, but neither was Lyra ever a “limp noodle” as so many babies with Ds are described. When she was four months old, I began taking Lyra to both speech and physical therapy at an office recommended by our pediatrician, Dr. M.

Physical Therapy or Breaking It Down to Pull It Together

When my dyslexic sons, Claude and Jules, learned to read, we had to break down the cognitive understanding of sounds and symbols. With Jules, I had to spend months making up silly rhymes and alliterative phrases so that he could hear the similar sounds. Once letters and their sounds were memorized, all combinations had to be taught. And because the English language is comprised as much of exceptions as it is rules, countless “sight words,” or words that don’t follow the rules, had to be memorized too.

So it is teaching Lyra to move her body through space—something I took entirely for granted with my four previous children. The first thing Lyra’s physical therapist, Heather, showed me was to pull Lyra up into a seated position by her wrists. Lifting Lyra slowly, her neck muscles engage and get a work out. By the time she was five months old, she was not only holding her head on her own but she keeping it upright as we bounced her on an exercise ball. Yes, the exercise ball is a big part of her PT, which for now has the overarching goal of getting Lyra to sit up and crawl. Lyra gets a better abdominal and arm work out each day than I do (though my muffin top and bat wings tell me I need to correct that).

Lyra loves to jump!

Lyra loves to jump!

Little things feel like milestones. Things like Lyra jumping in her bouncy seat, her head held erect as she springs her body up and down, or rolling on the floor from her back to her tummy and over again onto her back, or purposefully reaching her hands and arms towards a toy she wants, or sitting upright in the middle of our laps where we can catch her when she lists. Lately, Lyra’s been bearing weight on her hands and arms when she is on her tummy, a sure sign that crawling is coming. We want Lyra to crawl, and crawl for a long time, not only so she can move herself to where she wants to go, but also because of the well-documented, kinesthetic brain development that crawling enhances.

Speech Therapy or Everything to Do with the Mouth, Including Eating

For two months, Lyra’s speech therapist helped us try to teach Lyra to take a bottle. When she was nearly six months old, we all gave up. This is the first of what I suspect will be a lifetime of wondering whether something about Lyra is simply her personality or her Down syndrome. With the bottle, I believe it is personality. She breast feeds like a champ, which requires more muscle strength than bottle feeding. However, the time spent with the speech therapist was not invaluable as we learned many mouth exercises that we continue to practice. These exercises, mostly mouth massage—both inside and out—have helped Lyra “organize” her mouth. As a result, her tongue thrusting has greatly reduced and she has had no trouble learning to eat solid foods from a spoon.

Later this month, we will revisit the speech therapist to evaluate Lyra’s speech. But at nine months old she has long blown raspberries, babbles what sounds like the cadences of a distance conversation and then, as if providing commentary on the speech of those around her, will say, “Blah, blah, blah.”  These are all very good signs for speech development.

My Head and My Heart

When I hold my baby girl, I do not see her Down syndrome, I see my daughter. We all adore her and love to make her laugh, but she is mostly like any other baby. Jules delights in walking his fingers up Lyra’s sides to her armpits to get her to belly laugh. Leif holds Lyra’s hand and jumps with her as she hops up and down in her bouncy seat. All too often when they are playing on the floor, Lyra manages to grab a fistful of Leif’s long hair and pull it with all her might, causing her brother to scream in pain. The big boys send Max and me on dates, willingly keeping both of their younger siblings, caring for them with a naturalness that belies experience.

But here is a true confession that makes me cringe: I am still a work in progress. I know in my head that when she is older I will see and love Lyra as I do now. Maybe she will be as accomplished and “mainstreamed” as the adults with Ds in the “More Alike Than Different” video. But maybe she won’t.

I recently saw a lovely child with Ds, who was perhaps nine-years-old, happily engaging other people, especially little children. But when she spoke, I could not understand her and in that moment, and I felt the scabs peel off of my heart to reveal how attached I am to speech. I had to take Lyra to a corner of the room and nurse her while I quietly wept. I looked down on her dainty round head and, wondering if she’d ever speak clearly, I felt smacked by what is not alike, but different, about my child with Down syndrome.

A few moments later, a young mother whose son is only weeks older than Lyra came and sat by me. She has a soft voice with a southern accent I cannot place, but which calmly drew me out of my sorrow. She told me her child could not keep food down because of reflux and he was chronically ill because, as they had recently discovered in a swallow study, he aspirates his liquids. A first time mom, this woman’s dedication to her child is both fierce and gentle. Knowing how overwhelmed I was with my firstborn, who had no physical challenges whatsoever, this woman’s tender acceptance of her child and his mighty challenges guided me back to my center and I stopped leaning into my fears of the unknowable future.

We are a very verbal and literary family and we all enjoy talking, reading and writing. Two of us have made careers out of it and Claude may well too. My head tells me that Lyra will communicate effectively because she already does. She is not shy and her desire to interact with other people will propel her abilities to speak and/or sign (just as my own extroverted nature helped me learn French when I was a student in France). As her life unfolds, my heart will catch up with my head and I will continue to see my daughter as the person she is, not the extra chromosome she has.

What gets me into trouble is forgetting to stay in the moment.

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The Spring of Chaos

After what felt like a winter without end, spring has finally arrived.

I typically expect November and early December to be the busiest time of the year. For the most part, I don’t think of the holidays as something to survive, but when they are over, January seems indulgently quiet. A lady farmer, who lives across the street from the Waldorf school, once told me that January is the one month she relaxes. With the crops harvested and slaughtering season completed, it is too early to sugar the maples or prepare next season’s crops. Sure, there are animals and machinery that need tending, but mostly life is as quiet as snow falling on a windless day.

Then spring hits and there is no rest for the weary, be they farmers or mothers and I don’t know why, but it surprises me every year. Last spring, we had an unusually warm March, and found ourselves in our gardens seemingly moments after ski season had ended at the local slopes. It was our first spring in the new house and we abruptly discovered that the yard and gardens had been cursorily tended for a couple of years.225px-The_Blob_poster Translation: an abundance of weeds of all varieties—milky, woody, low to the ground and high to the sky—appeared as if by magic after the first warm days that March. Pregnant with Lyra, I was not much help in the garden. I trimmed dead branches off of the hydrangeas but otherwise mostly pointed out the weeds to Max because bending over made my heartburn rise. At the end of our driveway, Earth N Wood landscaping company dropped mountains of mulch large enough to be seen on Google maps. Seriously. For the rest of the spring and summer, Max pulled weeds, moved plants, mulched beds and ripped up English ivy, which grows with the destructive rapidity of the title character of The Blob, the 1958 Sci-fi movie classic (extending the metaphor: Max=Steve McQueen).

Possessed by Possessions

The long summer turned into a warm autumn and I thought I’d never get Max back into the house. But as I mentioned in What We Keep, finally in December, we resumed tackling the ongoing project of merging the possessions of two households into one. For this reason, I was not entirely unhappy to see winter linger with hopes of extending our focus on building shelves, emptying boxes and taking things to Goodwill and Habitat for Humanity’s ReStore. Larger items, or things we haven’t decided whether to keep or part with, have been hauled to the back garage for re-evaluation in the summer when we work on de-cluttering the garage. I imagine some day our spare time will not be primarily pre-occupied with managing our possessions as it has been for the past two years. But I cannot predict when that day will arrive.  And I ask myself if a deadline is in order.

Before the weather turned warmer, however, our weekends no longer found us like ants busily working in a nest while the frigid winds blew outside. Since Claude came home for his spring break in March, all of us have been pulled back to life outside of our home. Annual spring benefits for our favorite non-profits started popping up like dandelions in the lawn and last week alone, three were on our calendar (we made it to just one). Track season began at the Waldorf school and, as all parents who’ve been there know, any sport that employs the word “meet” as opposed to “game” is a sport that will relieve you of an entire day every weekend of the season. Tax season took away at least two of our weekends. And through it all, Lyra has at least one appointment a week with her doctors or therapists or county caseworkers or the Down syndrome clinic. In order to manage our schedules, emails go unanswered, calls unreturned and spontaneous get-togethers can’t happen. I start each day by looking at the Google calendar. And when I forget to, as I did this past Monday, I unexpectedly found the Summit County DD case worker and physical therapist on my doorstep at nine in the morning. Thank heavens I was dressed.

Far from Perfect

For me at least, it’s been hard to find my balance these past two months. I think of a quote I recently saw: Make sure to meditate at least fifteen minutes a day unless you are busy. In which case, meditate an hour a day. I smiled when I read this knowing, however ironic, that it is true. During these hectic days, meditation is like a staff planted firmly in the earth, a pole that does not stop the chaos, but rather allows me to stand still and observe the chaos without getting swept away by it. I am reminded of the wizard Gandalf who powerfully pounds his staff on the ground with one swift movement as he forcefully tells the demonic balrog, “You shall not pass!” Gandalf does not appear to kill the balrog, but he does prevent it from consuming his friends, insuring that they continue on their journey.

In one of my earliest posts, I described the mom-blogs that intimidate me with stories and pictures of serene adults with sweet children in clean (handmade) clothes making butter with the milk from the goats they keep in their yards while their kitchens look as organized as Martha Stewart’s but more artsy, an aesthetic cross of Waldorf schools-Garnet Hill catalogs-Merchant Ivory films.

Those moms probably don’t forget to go to the monthly meetings of their Down syndrome support group. Certainly not two months in a row. Nor do they forget to patch their daughter’s lazy eye (I won’t say how many times) and I imagine they do an hour of physical therapy three times a day so that their child with Ds meets all the “typical” baby benchmarks, like sitting up at six months. Those moms don’t ask with panicky voices at 5:30 p.m., “What are we going to feed everyone for dinner?” because they have organic and delicious meal plans extending weeks in advance. And while their kids may occasionally pull outfits out of a basket of clean laundry waiting to be folded, I doubt they ever dig into the dirty laundry to seek the least muddy pair of pants to wear to school that day.

True Confession: I sometimes think about what my life would be like if I only had one child. Or two. Or three. Or four. I consider what I would be doing with my days if my only child were away at college. Or if I had just one at home and the other at school, and down the list I go. I don’t think of it often, nor do I dwell on it when I do. This in no way means I ever wish to be without any of my children in this life and pray that they all die after I do, because to lose any of them is something I do not ever want to imagine, let alone experience. No, when I think of life with fewer children it is in the way Robert Frost describes life in “The Road Not Taken.” Frost acknowledges that our choices form our lives and wonders how different choices would have forged a different life. Possibly, I wonder, even molding the person so differently as to make him or her someone else entirely. In the film Sliding Doors, Gwyneth Paltrow’s character has two different lives based upon whether she misses or catches her train to work one morning. What I do know is that last year, before I had Lyra and I was working at the Waldorf school, I was not writing with any regularity. For a number of reasons, she keeps me at home and I make it a priority to write every week as much as I can.

As Good As It Gets

Last night we sat on our veranda and looked down at Jules and his friend Liam. They had set up a tent on the lawn and were standing next to it looking at the stars with one of our telescopes. Still in his Old Carolina Barbeque uniform, Hugo was relaxing as Hugo often does—by playing the guitar. The babies were asleep when Claude, who the day before had returned to Ann Arbor to take his last final, pulled up in the Matrix. I called out to him as he walked into the backyard, surrounded by the boys and dogs, and told him to grab a beer and join us on the veranda. After he’d joined us, I asked Claude how he feels now that he’s completed first year of college. “I feel a lot less anxious about things and, you know what? I am really glad I’m at Michigan, it’s a great school.”

Jules and his serviceberry bush

Jules and his serviceberry bush

Our lives at Whoopsie Piggle, the name of our home as much as this blog, continues to shape us just as we shape it. Our budding naturalist, Jules, has been eager to transform our yard and gardens to attract a variety of birds using native plant species. Max is his willing cohort in this venture and last fall they found a beautiful serviceberry bush on sale at a local nursery and Jules contributed $30 of his own money towards its purchase. It is now blooming and we are all eager to replace more non-native species with serviceberry bushes, spicebushes and red buds. But it is primarily Jules and Max who plot out and execute their now mutual dream of having a sustainable garden filled with native species, mirroring their own relationship in which stepson and stepfather are no longer foreign to one another but belong to each other as families can.

I enjoy being able to help in the garden this year with Lyra often nearby on a blanket. Leif, who turned three in February, already loves the yard where his dad built him a big sandbox last year. We had been trying to decide where to put a swing set that a friend has offered to us for the price of taking it out of her yard when then Hurricane Sandy took out two trees in the backyard. Using his new chain saw, Max is clearing the way to make our park-like yard even more kid friendly. With Claude home and helping, it won’t be long before we have our own playground.

Abiding Chaos

With Claude home, the large house is more full, but not entirely. We keep one bedroom as our guest bedroom. The plan is that one day it will be Lyra’s bedroom. With lavender walls and white trim it is a cozy room that is filled with afternoon sunshine and has its own bathroom where mid-century black and mauve glass tiles line the lower half of the walls. One friend in particular regularly comes over for dinner and stays late knowing she can sleep over in the guest suite. Early on, she stayed with us for a few months when she was between apartments.

Today we are awaiting the return of our friend, Nancy Wolf. Several years ago, Nancy left Akron to move to California where she followed some of her dreams. Now she is returning because her grandchildren are here, one of whom was born last December. While she resettles in our little city, Nancy and her two Labrador Retrievers will be staying with us. Will it make things a little more chaotic? Perhaps. But Nancy has stayed with us many times over the years when she’s journeyed back to Ohio. My kids love her. Just as important, I think, is to shake up the status quo and expose my children to other adults with whom they have different conversations than they do with us and also different from the conversations they have with adults who don’t live with us. There are as many ways to live life as there are people living it. Many of my choices in life may not be those my children are interested in for themselves. I’d be surprised if they were.

Nancy reads Whoopsie Piggle and often makes comments. After she read “What We Keep” she quickly sent me an email politely asking if we could hold off on shedding any more furniture until she returned. Truly able to let go of possessions, Nancy got rid of almost everything she owned when she left California last month, just as she had when she moved out there seven years ago.

The past nine months have not been without struggle as we learn to manage a family of five children with an eighteen year spread. Now we are upping that ante for a time while our friend and her dogs stay with us. But when she leaves, she’ll clear out most of the furniture and extra housewares stored in our back garage.

If we’re lucky, that is.

It Could Be Worse

All of this reminds me of a joke. There was a woman who lived in a small house in a shtetl. The woman was happy with her life until her widowed mother-in-law moved in with her and her husband. The mother-in-law had endless notions on how the woman could keep the house cleaner, make the meals tastier, teach the children better, and so on. Frustrated, the woman went to her rabbi and told him how her mother-in-law was making her life miserable. “Go home and move the cow into the house,” he told her and she did.

A week later, the woman went back to the rabbi, more frustrated than ever. Her mother-in-law was still unabashed in her running commentaries and now the cow was making it impossible to get around the small house. “Go home and bring your chickens into the house,” he told her and she did.

A week later, she again returned to the rabbi, at her wits end. “Go home and bring the goose into the house,” he told her and she did.

Days later, she came tearfully to the rabbi, telling him she couldn’t take it any longer, life at her home made her despair and she didn’t know if she could face another day. “Go home and move all the animals out of your house,” he told her and she did.

When the rabbi stopped by the woman’s house the following week, he asked her how she was doing. “I have never been happier,” she told the rabbi, “ever since you had me move the animals out of the house, my life has been so easy!” The woman made no mention of her mother-in-law who was sitting in the corner audibly complaining about anything she could.

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Lyra’s Latest: Where’s the Poop?

Prescript: In July of 2013 we learned about Fruit-Eze. A jam-like product made entirely of fruit, it worked wonders on the constipation that routinely flared up even after Lyra began taking Synethroid. She has a tablespoon each and every morning. Available online, Fruit-Eze is nothing short of miraculous.

Warning: As the title indicates, or so I believe, expect baby poo descriptions in this piece. Squeamish Readers, please proceed with caution.

Constipation Fixation

Lyra loves the bread at Macaroni Grill

Lyra loves the bread at Macaroni Grill

“It could be her thyroid,” said Dr. M at Lyra’s six-month check up. “It’s standard of care for Down syndrome to check it now anyway.” I was at Lyra’s six-month check up and, just as I had at her five-month check up, I explained to Dr. M that iron supplements had constipated Lyra. What I hadn’t told Dr. M was that ten days after we started giving Lyra the multivitamins with iron, we had stopped. Dr. M very strongly recommended giving Lyra an iron supplement but Lyra’s cereal has just as much iron in it as the vitamins. Thus, I didn’t see any reason to continue dosing her with the vitamins when I just knew they had caused Lyra’s unrelenting constipation.

Here’s what I know about constipation: If you have it, the only people you might tell is your significant other or your doctor. Then again, you might not. But if it is your baby who is constipated, that little person’s bowel movements will consume your thinking, day after day, and you will talk about it to anyone who will listen. Nearly all else in your life becomes less important than your baby’s bowels. It isn’t even necessary to document when the baby pooped last. You know the date like you know your own birthday. And this is because a constipated baby is generally a very sad baby. The term “colicky” isn’t about temperment, but describes a baby who has irregular digestion and is pretty grumpy about it.

I learned all about this back in the 90s with my Hugo, whose birth was by far my most difficult. Weighing in at 10 pounds and with a chest circumference that was larger than that of his big head, we called him “Huge-o” for several months. He also got stuck on his way out of the womb. After I had delivered what seemed like his soccer ball-sized head, the midwives realized he had shoulder dystocia and while I puffed like a locomotive going up a steep hill, the midwives safely repositioned him. It took a while, but he came out just fine. A couple of days later, however, I developed a nasty uterine infection and was put on Augmentin, a big-gun antibiotic. It cured my infection but, through my breast milk, it also trashed Hugo’s digestive tract. He cried nearly every waking moment for the next five months. Born in late November, I drove him in the car on bumpy roads to soothe him. If he fell asleep, I pulled into parking lots, parked and, with the car running, worked on crossword puzzles. Three-year-old Claude, in the seat next to Baby Hugo, was under strict orders of silence if the baby fell asleep. Though more often than not, Claude also nodded off after a long drive to nowhere in an overly heated car.

Hugo cried because he hurt. He would go nine to twelve days without a bowel movement. I felt über-environmental—using cloth diapers was a breeze with Hugo; rarely was there any messy clean up. Just weeks of easy-to-wash, low-odor, pee-pee diapers. When he did go, however, Hugo blew like a volcano. Between the volume and the force with which he expelled it, I would often first spy Hugo’s poo at the nape of his neck, just above his collar. Everything would have to come off and at least twice, when strolling him on the tile floor of the Lane Avenue Mall in Columbus, I had to dash into Baby Gap to buy him clean clothes (you would think I kept an outfit on hand, but since it was so rarely needed, I would get lulled into lugging very little gear).

Hugo eventually normalized, but I recall those early days with an element of Post Traumatic Stress Disorder. It may sound like I’m joking, but I’m not. For months, Hugo’s shrieks of pain and subsequent nursing frequently punctuated what little sleep I got. During the days, I could not accomplish much of anything other than trying to calm him, which meant holding him around the clock or driving him on bumpy roads. I have heard that psychologists compare a lengthy episode of parenting a colicky baby with torture, and I believe it. With the pregnancies of every child after Hugo, I prayed for anything but another colicky baby.

Lyra, like all my other babies except Hugo, quickly and regularly produced the kind of lovely poos that babies who are exclusively fed breast milk produce. The color of Dijon mustard, they smelled yogurty, and she produced them two to three times a day. That is, until we gave her the vitamins that included iron. And then, snap, she just stopped going. After five days, I gave her a pediatric suppository and what came out was dark and tar-like. Damn iron I thought. After ten days on the vitamins, we stopped and figured that in a week her stools would once again be mustardy and regular. But that didn’t happen. We began working with her diet, first giving her prunes to eat, then, a few weeks later, switching her cereal from rice (which can be binding) to oatmeal. And we began giving her a daily dose of algal DHA because it is good for brain development. It is also oily and should help move things along. We regularly massage her belly and her day care provider gives her Reiki treatments. She has never been fed formula, which also can bind, but exclusively drinks breast milk.

All to no avail.

Instead, Lyra’s weekly bowel movements have become heart-breaking spectacles, which the whole family often attends. After several days without a stool, Lyra’s abdomen tightens like a rock slab as she fusses inconsolably. Rarely does Lyra pass the stool on her own now and she has become what I call “Our Little ATM.” I pop in a small glycerin suppository and in return, Lyra strains and pushes out black pellets. We hold her legs and massage her tummy and her brothers coo to her soothingly, while she wails with pain and sometimes, just before a hard pellet of poo erupts, droplets of blood seep through her anus. The only comfort for us is how quickly Lyra settles after everything’s passed. Then five days later, it starts all over again.

Dr. M Scores Again

The reason Dr. M insists Lyra take iron is because anemia, or iron deficiency, reduces the oxygen getting to the brain. And a brain getting less oxygen risks a drop in IQ and with Lyra’s Ds, it is imperative to avoid additional hits to her IQ.

At first blush, it may seem that I am anti-medical. I had all of my children at home. Until Lyra, I never participated in the American Academy of Pediatrics schedule for well-baby visits. I’m not interested in taking a healthy baby to see the doctor. And also, I don’t follow the AAP’s vaccination schedule, as I mentioned in “Finding a Pediatrician, or The Continuum of Jewish Women.”

But I am not anti-medical. In fact, I am deeply appreciative of modern medicine and all that it can do. Had Claude been born 50 years earlier, he likely would have died of dehydration by his first birthday, which was a common cause of childhood death prior to the 1950s when IVs became widely available. Claude had a vomiting virus and in less than 24 hours had shriveled up. The skin on his stomach stayed wrinkled like a raisin’s after a doctor pinched and released a one-inch section between her forefinger and thumb. Claude was rushed to the emergency room and given fluids intravenously.

Had I given birth to Hugo 75 years earlier, I might have died from my uterine infection, as antibiotics only became available in 1935. And certainly, had Lyra been born just a handful of decades ago, her cataracts would not have been surgically removed and she would have been blind.

But I find that the medical professions are often in the position, whether or not providers like it, of treating the symptoms of illness without effectively addressing the underlying causes. We observed an example of this when Lyra had her eye surgeries. Both times as we waited for Lyra to awaken in the post-op recovery room, most of the other patients were recovering from tonsillectomies. The cries of these children were as raw as the pain in their throats.

“I thought they didn’t do many tonsillectomies anymore,” I said to the nurse attending Lyra after her second surgery.

“Oh, no, they have been on the rise. It’s the bulk of what we see in here,” she said and when I asked why, she told me, “It’s sleep apnea. So many children are heavy now and they develop sleep apnea.

“So they take out their tonsils?” I asked.

“Yep,” she answered.

It shocks me that children should undergo surgery, which is hardly without risks, for something that is correctable with diet. But physicians have little to no ability to change what is likely an entire family’s eating habits in order to get one child to lose enough weight to resolve that child’s sleep apnea. So they quickly fix the symptom by surgically opening the airways with tonsillectomies.

That is not how I live. When my children or I have a health concern, I consider what might be the source of the issue and seek to resolve it. For example, Jules has had unremitting nasal drainage all this school year. I could just give him antihistamines, which I have now and again when he couldn’t sleep. But as the problem appeared systemic, I have worked with him to clear out sugar, wheat and dairy from his diet to see if that helps. Two weeks later, he stopped complaining of drainage.

And this is why we have not treated Lyra’s constipation with laxatives, which would only further decrease her body’s ability to properly process and eliminate her stools. Her constipation, as horrible as it is, is not her problem but rather the symptom of a bigger problem.

Hypothyroidism

In the case of Lyra and her constipation, it seems the introduction of iron was simply an unrelated factor, even though the timing suggested otherwise. As it turns out, the blood tests confirmed that Lyra has developed hypothyroidism. Her actual thyroid levels were fine. But the thyroid gland is the lackey of the pituitary gland. Like a shift supervisor at a factory, the pituitary gland monitors the thyroid gland’s output and responds by secreting something called TSH. TSH tells the thyroid gland how hard to work. When it wants the thyroid gland to work harder, the pituitary gland sends out more TSH. In Lyra’s case, her pituitary gland was making, according to some charts, twice as much TSH as is normal in order to get her thyroid gland to produce the proper amount of thyroid.

We were referred to the Endocrinology Center at Akron Children’s Hospital where I asked, just to be sure, that they retest Lyra’s blood. They found the same results as Dr. M’s lab. We were seen by a nurse practitioner who, after having me describe Lyra’s symptoms, asked if anyone else in the family had suffered from constipation. I told her about Baby Hugo and she said, “Oh, I tell parents it’s not so much how often they go, but what the consistency is. If we have mashed potato stools, it’s okay, but the hard pellets are not.” Had I known that sixteen years ago!

On April sixth, we began giving Synthroid, a synthetic thyroid replacement drug, to Lyra. At first, we smashed a tiny pill between two spoons, mixed the resultant powder in a cup with a teaspoon or so of breast milk, drew it up in an oral syringe and gave it to her. On April seventh, our clever girl began blowing raspberries when she felt the plastic syringe touch her mouth. Between what she sputtered out of her mouth and the reality that some of the powder remained in both the cup and the syringe, we weren’t sure how much of her dose she was actually getting.

Lyra looking like a big girl next to her newborn buddy, Cora.

Lyra looking like a big girl next to her newborn buddy, Cora.

Beginning this week, I now slide the small pill down her throat with my finger and promptly nurse her. She gagged a little the first time, but hasn’t since. We know she has the full dose in her body and once she’s been on the Synthroid for six weeks, we will have her blood tested again. After that, we get to visit the Endocrinology Center every three months until Lyra is four or five years old. It is quite likely that Lyra will need to take some form of thyroid replacement her entire life. I am just glad we caught it so soon, since thyroid can affect so much, including many things that are already concerns for people with Down syndrome.

For now, we are looking for softer stools, however often they pass. And perhaps, too, our wee teeny peanut will get a little bigger.

Update, April 21, 2013:

“You want to smell something wonderful?” I asked Max this afternoon, before sticking Lyra’s behind in his face. He was working at his desk in his home office when I brought Lyra in from the minivan after returning from Jules’ track meet. As soon as I’d plucked her from her car seat, I’d smelled it: pungent, breastmilk poo.

Sure enough, when I opened Lyra’s diaper a few minutes after making Max sniff her derriere, I was greeted by the lovely site of an oh-so-typical poo. That is, typical for a baby who is exclusively breastfed–mustardy orange with a butyeric odor, kind of like movie theater popcorn–who isn’t suffering from hypothyroidism.

Fifteen days after she began taking thyroid replacement drugs, our girl has regulated. The days of rock hard pellets are behind us, or so I pray.

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On Writing About Family

Good Busy

Whoopsie Piggle has not had a new post in over two weeks and this has been for two good reasons. First of all, I have two separate freelance projects that have kept me very busy. In some measure, I credit Whoopsie Piggle for this. Or rather, in the process of writing Whoopsie Piggle, I publicly declared my desire to earn my income by writing. And I have a theory, not so unusual, that you can’t get what you want if you don’t clearly state what that is. I don’t mean general platitudes such as world peace, my children to be happy, to have a successful career, or whatever. The more declarative and precise the intention, the more likely it is to happen. Curiously, however, generalizations seem to manifest just fine in reverse. Tell yourself your life sucks and it’s a fair bet that not only does your life suck; it will continue to suck until you change your thinking.

I’ve been clear for the past six years on what I want in a partner and homelife. But it has taken me longer to clarify my career goals with the same specificity. This is, in part, because I have felt shame for wanting a creative career. Writing, to be a writer, sounds selfish if for no other reason than there are few obvious ways to make money as a writer. Journalism and teaching at colleges were practical considerations for writers in the recent past, but neither option is what it was even ten years ago. Journalism is a field scrambling to respond to an unexpected brush fire, otherwise known as the Internet, which has consumed all aspects of the publishing industry. I am qualified to teach at the college level, but so are multitudes of other writers and with so few jobs available, the unspoken requirements have risen. For the most part, a tenure-track job teaching writing requires not only an MFA but also a published book and preferably a PhD. Maybe someday I’ll have these credentials, but not this year.

So while I’m not yet earning a living wage by writing, what I am earning helps me with the choices I make for my children. Choices like college tuition for Claude, music lessons for Hugo, and private school and tutoring for Jules. When I was a twenty-something, living on a shoestring was not a problem because I was only responsible for myself. Now I am the mother of five children and raising them well is a priority that conditions everything I do. Which is probably why I kept returning to my family, specifically the children, as I thought of a new project in the months prior to launching Whoopsie Piggle. Possibly a book, I had thought. One about the journey the big boys and I have taken over the course of their lives and how we’ve all come to embrace this new dynamic, a new family in fact, with the addition of Max and then Leif and finally, Lyra.

I know several non-fiction writers who purposely avoid writing about their children. To keep their children’s lives sacrosanct from the public, they hang velvet curtains in their stories, blocking all but the fact that their kids exist and sometimes not even that information comes through. I have heard writers say their teenaged children would be mortified to discover themselves as a character in their parent’s work.

Not my kids. I write about how they have shaped me, and my life, as much as I have had any impact on them. I am mindful of what I write and keep as a primary point of reference that my children will one day have careers of their own. Rather than complaining about being creative fodder, for now the boys enjoy reading about themselves. Particularly Hugo. If I have come at all close to accurately capturing his personality, this should surprise nobody.

Who owns memories?

My last essay, “Shattering Patterns,” was about fathers and firstborns—me and my dad, Claude and his father, as well as Claude and me. For though I have long heard faint echoes in my life, writing is the one way I know to find form for the abstract, which was particularly true of that essay. Writing it helped give specificity, once again, to my observations and thoughts. As his mother, I cannot imagine not wanting a close relationship with Claude. On the other hand, I have long worked to overcome the feeling that it was my fault my father and mother were never available for parenting or that they, like Claude’s father, did not want a close relationship with their child. And while writing about Claude’s relationship to his father alongside writing about my own relationship to my father was illuminating for me, I was not so sure Claude would want such a piece published.

“You could have been more revealing,” Claude told me after he read “Shattering Patterns.” “No, really,” he continued when I questioned him. “I wouldn’t have minded if you added a link to my poetry, you know to show that even if I don’t think about my dad, there’s still stuff in there.” As he reformulates more patterns, I see Claude transcending both of his parents in all that he does. Which is as it should be.

What I didn’t expect, but probably should have, was for someone to be upset over a line about my experience. “I never saw your father let you inhale marijuana smoke!” said a clearly upset family member, and I believe this person completely. I explained, however, that I quite viscerally remember breathing in smoke from a paper bag. I also remember talking about it with friends at school when I was still quite young. This is not a flashback memory—it has always been there.

What outsiders may find more shocking is this: I am not troubled by the memory of being given marijuana smoke as a young child. I have not nor would I do the same to my children. Legal antihistamines, however, such as Benadryl, are commonly administered to young children. If all things were equal in terms of legality, I’d be similarly concerned with the use antihistamines as with marijuana. But for now, in most states, they are not legally comparable.

Should I have skipped adding the sentence about marijuana? Was I unnecessarily revealing, particularly when I don’t find the information that shocking? Perhaps. I think too, that 30 to 40 years later, many seem to forget how drug saturated the late sixties and all of the seventies were. While many of my friends’ parents were not smoking pot, several were. And I regularly meet people who recall similar hazy days of partying parents. What might sound shocking today wasn’t so unusual then. A few family friendly movies from that time, films like The Bad News Bears or Little Darlings, give testament to how much times have changed.

Veteran Road Warriors

Then: A photo of the boys (ages 13, 10 & 7) and me, taken by a stranger, in 2007.

Then: A photo of the boys (ages 13, 10 & 7) and me, taken by a stranger, in 2007.

I stated that there are two good reasons why Whoopsie Piggle has been back-burnered this past two weeks. Besides good work writing, we went on our first vacation in nearly two years. In four days, we packed in a trip like the boys and I used to regularly take: in a vehicle filled with food and audiotapes, we headed out for a National Park, this time Mammoth Caves in Kentucky.

“Hugo just can’t stop picking a fight with you, can he?” said Max the night before we left. It was true. Hugo had been in rare form for two days. As I cleaned the kitchen after dinner that evening, Hugo launched into me like a district attorney, pointedly telling me he remained disappointed by his sixteenth birthday, which was the day after Thanksgiving.

“I don’t ever want to spend my birthday in the car for eight hours again!” he said, referring to the fact that on the day he turned sixteen, we had driven home from Northern Michigan, where we’d spent Thanksgiving with the children’s grandparents. We also stopped at the Toledo Museum of Art and saw a marvelous Edouard Manet exhibit and took everyone to dinner at the restaurant of Hugo’s choosing. That weekend, I drove Hugo to Guitar Center and bought him a pricey recording device he had long lusted after. I had waited until after his birthday to buy it during the post-Thanksgiving sale, which Hugo had agreed to at the time.

“What are you talking about?” I asked him, “We came home on your birthday because you had to work the next day! None of us wanted to leave early, we did it for you.”

“Never mind,” he said in a way that indicated he wanted me to do anything but. Sure enough, half an hour later, he appeared in our bedroom as Max and I were going to bed. “I’m not mad about my birthday, I just didn’t want to spend it in the car!”

I again tried, but got nowhere with Hugo. Finally, Max said to him, “Okay, that’s over, Hugo. So what do you want us to do now?”

“Just promise we won’t travel on my birthday ever again,” he said. We promised and he left our room.

“He’s sleep deprived,” said Max as he turned out the light. He was right. Earlier that week, Hugo had gone to New York City for three days with a school group and after arriving back in Akron on a bus at 7:30 in the morning, he had to turn around and go to work both days before we left for Kentucky.

Our family today (minus collegiate Claude), also photographed by a stranger.

Our family today (minus collegiate Claude), also photographed by a stranger.

A day into our trip, Hugo was a different person. On our way down, we’d listened to The Old Man and the Sea, which was assigned spring break reading for his English class. Just for Hugo, we’d packed two dozen, hard-boiled eggs. In cold weather that threatened rain, Hugo delighted in making egg salad on the side of a concrete retaining wall at a rest stop. Because he has always loved them so, egg salad and deviled eggs were the first dishes Hugo learned to make himself. That night in the national park hotel, Hugo had a persistent cough and the only medicine I had brought that would help was Benadryl. I gave him one tablet and he fell asleep by 8:30 while listening to Max read to Jules. So did I. The next two days, as we toured Mammoth Caves and hiked on trails in the park, Hugo was no longer a disgruntled teen. He was as impressed with the enormous cave chambers as any of us and equally as effusive in saying so. Often while hugging us.

Fully Functional

I write about my family. In part, because the quotidian amazes me. A little baby that I carried all over Boston became a boy who couldn’t read until the third grade when he was diagnosed with, and began the long process of remediation for, severe dyslexia. He now writes poetry and papers that floor me. Another boy, one who is brilliant at anything he attempts from academics to sports to music, has also challenged me since before his birth as a ten-pounder who got stuck with shoulder dystocia on the way out of the womb. That boy has grown up in the past year and now works hard at everything he does. He also makes me laugh every day. And my peace-maker child, the one I most feared would suffer long term consequences from the divorce is now, at nearly thirteen years old, becoming appropriately mouthy. I cannot express how relieved I am that he is. Then came Leif and Lyra, whom I think are the luckiest little kids I know, precisely because they have three adoring big brothers. We are like our own little village of five raising the two youngest children of the family.

I regularly turn to Max and say, “Everyone’s in a good place. Look at the boys, look at the babies, look at us.” Sure, dysfunctional families are fascinating to read about and I have enough of dysfunction in my personal story to write volumes of the dreck. But dysfunctional backgrounds are not generational sentences.

Life is long. Life is short. And, yes, life is good. Especially when you show up for everything—the fun, the challenges and all the messy stuff.

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Shattering Patterns

Won’t Go Back to Boston

At the beginning of the month, the annual conference of AWP, or the Association of Writers & Writing Programs, happened in Boston. Last year was the first year in many that I did not attend and it felt like a reprieve. Not a reprieve from the conference, where more than 10,000 writing professionals gather to attend (or present at) sessions from those related to writing (“Please Complete Me, Please Don’t Make Me Gag: Love Stories for a Cynical Age” was a panel this year) to publishing and finding work (Also: “Landing the Tenure-Track Job without a Book: What to Expect in the Job Market”). Neither did I want a reprieve from talking with other writers, including old friends whom I look forward to seeing each year at AWP, nor a break from listening to authors read their work. All those things I love and look forward to each spring.

No, what I did not miss was preparing my family to function without me for a few days. Making sure there was adequate adult supervision, that everyone had rides to where they needed to be, that there was food, clean clothing and instructions. In the business world, a good manager can leave her place of business temporarily and things should run as well as if she were there. Often, being the mother of a larger family feels like being the CEO of a small company. But those in my charge are not all yet fully trained adults. And as such, cannot, nor should they, always proceed without direct supervision.

Beyond the conference itself, I had a fantasy of going to Boston because it also fell on the same week Claude was home from college for spring break. I could have taken him on an odd nostalgia trip—odd given that the places we would have visited were ones where, when we lived there, I was deeply conflicted and generally unhappy. When Claude was three months old, his perpetually unemployed father took a job in Boston even though we lived in Columbus, Ohio. At the time, I was pursuing a graduate degree in art history at Ohio State University. I had a plum assistantship in the editorial offices of a scientific journal and a large community of friends and colleagues. I had no interest in moving to Boston and was very upfront in saying so to my then-husband.

Claude & Me, summer 1994

Claude & Me, summer 1994

For several months, Claude and I lived alone in Columbus. I took my baby to work with me and friends watched him when I had classes. I paid for all of our Ohio expenses with my stipend and spent my free evenings and weekends in the company of friends, many of whom had small children too. Simply put, Claude and I were thriving. Which is why I wish I could reach back, take my 28-year-old self by the shoulders and say, “Don’t go to Boston! Giving up your life simply to keep the family together is not only horrible for you, it sends the wrong message to your child!”

But we make the choices with what we understand at the time and I understood that my parents had split up when I was a baby. More than fearing what leaving my husband would mean for my child or me, I was afraid of being like my parents. As with most fear, it was irrational. I was ten years older than my parents were when they became parents. And I had a college degree, two in fact, when Claude was born and was well on the way to achieving my third. I had a home, a career path, a community and I was clear about what I wanted. That is, until I gave it all up.

We joined his father in Boston, when Claude was nine months old. While there, Claude and I were more alone than we had been in Ohio. I had no friends or colleagues (because I had no job) in Boston, a city where, unless you can recite your Revolutionary War ancestors, it seems you are forever an outsider. We rarely saw his father, who had rented a shotgun apartment in Somerville. On the right were the doors to three small rooms; on the left was the bathroom and a door for the smallest room in the house, hardly bigger than a closet. I kept that door closed and rarely went in there because it eerily reeked of cigarette smoke, like some ghost from a Stephen King novel lived in there, puffing away when we weren’t looking.

Just before we moved from Ohio, Claude’s father inherited some furniture. Beautiful antiques though they were, many of which were family heirlooms, we did not need a dining room table and chairs for eight, nor a hutch that was so large it was impossible to assemble in our apartment. In our bedroom, the mattress laid frameless on the floor, snug against our dressers while in the next room, chairs were stacked upon tables and surrounded by boxes of bone china and crystal. Rather than a home, the apartment looked like a used furniture store, each room an assemblage of related items crammed together.

Bored and with nobody to talk to, I spent my evenings plotting our daily escapes. With Claude either on my back in the backpack or on my hip in the sling, we rode the subway to museums, libraries and parks. Some days, I packed us up in our old Toyota Celica hatchback and drove out of the city, once going all the way to Vermont and a third of the way up that state. I loved the old world beauty of Boston, which feels more European than American in some ways. But I was like a long-term tourist with nothing to attach myself to—no graduate program, no job, no friends and, realistically, no husband. All I had was Claude, an easy baby whom I loved like nobody else, but a baby nonetheless.

Six months after arriving in Boston, I returned to Ohio. At first, it was just to visit friends but once there, I decided we would not return to Boston except to collect our things. I told Claude’s father he could return with us to Ohio if he wanted and, frankly, was surprised when he did. That was 1995. I’ve gone to New England, specifically Vermont, almost every year since then, but have never returned to Boston. So why is it I would feel nostalgic to show Claude, who is now nineteen, something he has no memory of? To give him the mental images of the places I’ve told him about? He’d go if I asked him to and maybe even enjoy himself, but I don’t know that he’d gain anything of it other than to humor his middle-aged mom. Which makes me feel a bit pathetic.

(No) Going Back

Instead, we went to Ohio State University in Columbus, Ohio. After nearly a year at the School of Art & Design at the University of Michigan, Claude is not feeling challenged by his art courses and has wondered if the issue is his program or whether he’s in the wrong major. Unlike Michigan, Ohio State has two separate departments for art and design and I have an old friend who teaches in their Department of Design. On our visit to OSU, Claude spoke with my friend and another professor, as well as the chair of the department. He also met with the secretary of the Art Department and a few students. Unlike last year, when we visited the colleges he was considering, this time Claude led the conversations and asked pointed questions. I felt comfortable leaving Claude on his own and several times walked away to take care of Lyra, who was with us.

Hayes Hall, Ohio State University

Hayes Hall, Ohio State University

The Department of Design is in the building that housed the History of Art Department, my department, when I was a graduate student. I waddled those same halls pregnant with Claude and later carried him around just as he was carrying his baby sister. At 6’2,” Claude now towers over me. He thinks nothing of swinging Lyra into his arms with an ease that comes with experience. “People think I’m a college daddy,” he told me when we were walking across the oval. I talked to him like a solipsistic tour guide: That’s the Wexner Center, which was built shortly after I started going to school here and where I saw nearly all of Hitchcock’s films. Here’s the short cut to the Art Department from Hayes Hall, my boyfriend before your father was in this department and we went back and forth between these two buildings. Wow, the union looks great, it was all loopy ‘70s interiors when I was here. See that building? That’s Denney Hall where I worked for a year between undergrad and grad school. Claude politely listened though I’m sure he’d fail a quiz on anything I shared with him about my days at OSU.

“So what’d you think?” I asked him on the drive back to Akron.

“I want to stay at Michigan,” he said with a certainty that surprised me. “The programs are similar, the set up is kinda the same. But when I listened to the dean talk about all the work for a design degree and the projects and, well, you know what?” he asked looking at me from the passenger’s seat, “I realized I just don’t have the same passion for design that I do my academic classes.”

“Really?” I asked, trying to sound impartial. Inside my heart leapt, feeling I’d scored an A in parenting. Last year, a handful of art schools—SCAD, SAIC, CIA—pursued Claude. But I after watching how deeply engaged he was in his high school English and history classes, the only restriction I put on his application process was that he go to a full university for his undergraduate work. Still, there were times last spring when I wondered if my one edict was keeping Claude from opportunities he would not have again. No matter how hard I try to be the best parent I can, it sometimes feels like a crapshoot.

A Family Tradition: Reading the Beats at Nineteen

When Claude left for college last fall, I had in my mind a vignette where he would come home at Thanksgiving and share effusively the things he was learning in his classes. He would read his papers to us and tell us about the ideas of his professors and classmates. I had seen elements of this in his high school coursework, especially English, where Claude would get so excited by what he was learning, he would have to stand up and move around the kitchen while he talked.

Instead, he came home last fall frustrated and not a little deflated with his classes, which were all art courses. “Why can’t they just teach us the fundamentals before asking us to do something conceptual and creative? Why are we paying $50,000 a year for this crap? I’m not getting anything out of it!” (For the record, most of the bill is covered by grants and scholarships; Claude and I only pay a small fraction of that total.) He was sure of nothing—the school he was at, the program he was in or even being a student. “I should have taken a year off!” he told me repeatedly. He struggled with what felt like monumental decisions to him, but I saw him asking himself the right questions at the right time. Max and I told him to enroll in as many academic courses as he could spring semester. And that’s what he did. Along with English, this semester Claude is in a world political science course and a performance course with playwright Holly Hughes. And just one art class.

When he was home for winter break, I asked Claude the topic of the English course he had enrolled in. “I don’t know,” he said, “A couple of my friends really like the instructor so I just signed up for whatever he was teaching.” While a highly recommended instructor as the sole reason for registering for a course isn’t exactly typical, it’s not the worst way to pick classes. In late December, books by William S. Burroughs, Jack Kerouac and Allan Ginsberg began arriving from Amazon.com.

“Are you taking a course on the Beats?” I asked him.

“I don’t know. Those are just the books we’re supposed to order for the class.”

My father introduced me to the Beats when I, too, was nineteen. He handed me two books, Kerouac’s On the Road and Minor Characters by Joyce Johnson.

“If you want to understand me,” my father said as he handed me On the Road, “read this and then read it again every ten years.” As an after thought, or so it seemed, he added, “This other book is by a girlfriend of Kerouac’s. You can read that too, it’s interesting. But only after you read On the Road.”

I don’t recall telling my father that I wanted to understand him or not understand him. At nineteen, I hadn’t given his life much thought. Looking back, it seems clear he was asking to be understood. I did read On the Road shortly after he gave it to me and when I was finished I remember thinking, well, that was different. I didn’t read it ten years later or ever again, but the poetry of certain passages has stayed with me …they were all children, and in the sunny cherry blossom morning of springtime in the Rockies rolling their hoops up the joyous alleys full of promise…

I also read Minor Characters, which I believe was the first memoir I had ever read and a good one, too. The famous Beats flow in and out of Johnson’s story, but it is her personal bildungsroman, which is set against and poignantly captures the 1950s’ counter culture in New York City, and the stories of her non-famous friends that make this a book I continue to recommend.

But did either help me understand my father? No. Perhaps if I’d gone ahead and read On the Road when I was 29 and 39 I would have found the significance it has for him. The truth is, I just wasn’t interested. I once told someone I went easy on my father because he never yelled at me or hit me, which I realize is a pretty low bar to set for a parent. When I was a teenager and getting reacquainted with my father after a ten-year absence, I found his intelligence often revealed itself through his humor even if, at times, it was colorfully inappropriate. However, after he left my stepmother and moved out west, my sister and I found our phone conversations with him tediously one-sided—long litanies in minute (and sometimes vulgar) detail of events that had happened with people we didn’t know. He was only forty-five when left Michigan, but after a couple of years in Arizona, he ruminated like an old man.

In truth, my father was no better a parent than my mother because, while not aggressive, he is emotionally weak. And his weakness led him to make poor choices, or sometimes do nothing, which was also a poor choice. In the late sixties, as a single father, he was a twenty-something hippy living on Chicago’s north side and thought nothing of blowing pot smoke into a paper bag and having me inhale it. When I was four, my mother had returned and gained custody of me. A few years later my father was a vegetarian biker (as in motorcycle) living in rural Northern Michigan and did nothing when my stepfather sought to adopt me, thereby severing any legal ties my father had to me. And when I was sixteen and living with my father for the first time in decade, he was an old-hippy-biker-stoner-stay-at-home-dad who blithely allowed the predatory attentions some of his friends gave me. I stayed less than a year.

On My Road

As a religious studies major, I had studied Buddhism. But it wasn’t until the summer of 1996 that my ex-husband and I began practicing Shambhala Buddhism. Like all major religions, Buddhism has a variety of “denominations,” and we could have become Zen Buddhists or Theraveda Buddhists. But a fellow religious studies student introduced us to Karmê Chöling Shambhala Meditation Center in Vermont. Almost every summer since that first visit, when Claude was two and I was pregnant with Hugo, the boys and I have gone to the nine-day family camp at Karmê Chöling. Each morning of camp, while the parents meditate in a Tibetan style shrine room, the children are enrolled in classes where a little religious instruction is combined with a lot of outdoor play on the mountainside grounds of Karmê Chöling.

Choygam Trungpa Rinpoche, a Tibetan spiritual leader who was exiled with the Dalai Lama in 1959, introduced Shambhala Buddhism to the United States. Like most, if not all, spiritual innovators—including, but not limited to, the Buddha, Jesus Christ, Martin Luther, Joseph Smith, Suzuki Roshi—the Rinpoche’s story is complicated, if not downright messy. The first few summers we went to family camp a few of middle-aged dads, often in their second marriages, came with their families. Many afternoons, while we sat on lake beaches watching our children frolic in the water and sand, these former students of the Rinpoche enjoyed telling me stories about their teacher. They were all very clear about the Rinpoche’s foibles, which are widely known and well documented. But they were equally clear that the Rinpoche was a spiritual master. If for no other reason, Choygam Trungpa Rinpoche’s life is impressive for this one: in a few short years, he established institutions and translated texts that effectively established Buddhism in the religious pantheon of North America.

My dad and me, December 2004

My dad and me, December 2004

It was at least five years after we began practicing Shambhala Buddhism that I recognized the connection it had with the Beats. Even though I’d given my dad a copy of The Dharma Bums by Kerouac a few years after he had given me On the Road. Even though I knew that Choygam Trungpa Rinpoche had founded the Naropa Institute in Boulder, Colorado where, for a time, Allen Ginsberg and William S. Burroughs had taught. It was like I had a mental blind spot that prevented me from connecting the two. It wasn’t until I heard a radio interview with a man who had been at the Naropa Institute with Ginsberg and he said something like, “the Rinpoche told Ginsberg he was too attached to his beard and needed to shave it off,” that I saw the obvious: I’m practicing the same religion as my dad’s Beats. Maybe it’s a silly coincidence, but it doesn’t feel like it.

Claude Explains the Significance

While home for spring break, Claude worked on a paper about Kerouac’s On the Road. He told me there were two dominant male stereotypes in the 1950s. The first was the abusive and sexually vital king who refuses to settle down and be domesticated by women, characterized by Dean Moriarty. The other is the gruff, but indulgent “good provider” who succumbs to the feminization of his life, marries, moves to the suburbs and probably has a few kids. “So, you know how Sal, who’s basically Kerouac, chooses to go off with his wife in the Cadillac at the end of the book? He’s choosing tradition! Everyone thinks that book is so radical, but it wasn’t!”

Thinking of these two stereotypes, either of which limits a man’s full humanity, the Rinpoche was not unlike the sexually vital king. He died of alcoholism at age 48. Kerouac seemingly succumbed to the good provider role and was living with his mother when he too died of alcoholism at age 47. Fortunately, my father, who is now 67, has not died of alcoholism. When I review his life, I see he tried to be both stereotypes and, perhaps for the best, was good at neither.

I write obliquely about Claude’s father, because he is only a small part of the background of our story. But that is not the case for Claude. Last spring, after being disappointed and frustrated with his father for years, Claude confronted him in our driveway and told him that he, the son, felt like the adult in their relationship. They went back and forth speaking loudly, but not shouting, for a several minutes. Standing nearby and watching closely was Jules, who was supposed to have dinner with their father. Finally, their father exasperatedly asked Claude what it was he wanted from him. “To just show up. I just want you to show up,” he told his father.

What would have happened if his father had realized that by confronting him, Claude was showing his father that he wanted to have a relationship with him? And what if his father had heard the very clear and simple instructions on what Claude needed in order to have that relationship, Just show up! We won’t ever know. Claude told me last fall that he never thinks about his father, that the only time his father enters his mind is on the rare occasions when he sees him. It’s hard not to feel like I fell into a familiar groove when I had children with the boys’ father, a man whose exterior is so very different from my own father’s but who has the same emotional fortitude.

I can’t change their father; heaven knows I tried. I try to raise emotionally connected sons, very consciously so. And in my relationship with Max, I hope they see an example of manhood that explodes the two stereotypes of Vital Sex King or Gruff Provider. It’s not a crapshoot, even if it sometimes feels that way.

Back to School

“You didn’t want him to leave,” said a friend when I told her that I had waited too long to buy Claude’s Megabus ticket back to Ann Arbor. It was the day before he was to return and there were no seats left on the bus. Luckily, the trip from Akron to Ann Arbor is just under three hours.

“We’ll both go,” said Max and even though there were plenty of reasons why one of us should have stayed home (taxes, laundry, several indoor projects that need completed before the weather changes and we are back to yard work), I am glad he insisted. We brought Lyra, but left Leif home with Hugo and Jules. On the way to Ann Arbor, Max and I talked with Claude about his plans. After a year of existential angst trying to decide where his place is and what he wants to do with his life, Claude seems confident about, well, everything.

He’s going to get a liberal arts degree, maybe in English, and if so, I would consider taking Claude to AWP next year (in Seattle) because he’d enjoy any number of panels and certainly hearing world renown authors speak and read. Then again he might major in history or political science. Whatever he majors in, he’ll now take the art courses he wants to take but was not allowed to as a major in the program. Courses on the fundamentals of drawing, painting and sculpting. “You are at one of the best institutions of higher learning in the world,” I told him on the way back to his dorm, “you may never have the chance again to explore the things that are available here. Take whatever courses you want. Go for five years if you have to.”

For Claude, this first child of mine who is now making very adult decisions, my role has changed. No longer do I give him direct supervision, but rather wait for him to come to me when he needs feedback. Important decisions are his to make.  After all the years I spent trying to raise him to be all he could or ever want to be, I now get to watch it all come together. I wouldn’t miss it for the world. Neither would Max. Why would anyone?

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Lyra’s Eyes: The Latest

Seeing Red

“We gotta go,” I mouthed to Hugo, who nodded at me while pounding out rhythm and blues on the school piano, playing back up for a couple of guitarists. It was an odd Valentine’s Day. Jules was in Florida and Max was having dinner with his 90-year-old godfather, whose younger brother had died earlier that week. That left just Hugo and me, along with the babies. Rather than cook, we went to the Waldorf school for a potluck and open mic. Leif, who had uncharacteristically clung to me since we’d arrived an hour earlier, softly chanted I want to go home for several minutes before I reluctantly pulled Hugo off the piano.

Once home, I changed Leif into his pajamas. His torso was warm, too warm. I tilted him back in my arms and felt his forehead. Hot. “You don’t feel good, do you?” I asked him and the eyes looking back at me were glassy.

The next day, Lyra, who turned six month’s old on Valentine’s Day, had her latest check up with Dr. M, her pediatrician. Just shy of twelve pounds, Lyra remains in the less than 4th percentile for typical children, but around the 40th percentile for children with Down syndrome. The biggest “problem” with her size is clothing. Those sized 0-3 months clothes are generally for children weighing 8-12 pounds. Some of her clothes this size, especially those with footies, are getting small, but clothes sized 3-6 months are voluminously large on her. The few things that fit well get washed often.

At Lyra’s appointment, I negotiated the supplementing of iron with Dr. M, which she strongly advocates because anemia can lower a child’s IQ (it has to do with oxygenation of the brain). Unfortunately, iron can also cause constipation, which happened with Lyra as soon as we gave it to her. In order to avoid a potential problem, I feel we have created a real one. Constipation is a commonly associated with Down syndrome and something Lyra did not have until we introduced iron to her system. I have taken her off of the vitamins and pointed out to Dr. M that the cereal we give her (Happy Bellies brand) also contains iron.

“Why don’t you try adding some extra fiber to her cereal to get her going again,” said Dr. M and she wrote down a brand name on the “Babies at Six Months” handout. She then said, “Before you go, do you want me to look in Leif’s ears and throat?” Leif was still hot. Some people are sweet when they don’t feel well (Claude and Jules) whereas others are crabby (Hugo, Leif and, to be frank, me). During our appointment, Leif had thrown himself on the ground several times, tried to run out of the room when the nurse came in, pushed the stool to the wall so he could reach the light switch. Thank heavens Dr. M blocks out extra time for visits with children with DS.

“His ears look fine, his nose is clear and I don’t see anything in his throat,” she told me after I wrestled him down for her. Other than a fever and an attitude, Leif was fine. That was Friday.

Two days later, we were at Akron Children’s Hospital’s Emergency Room. By Sunday evening, Leif’s head had become a ramped up mucus factory that poured its products not only from his nose, but also from both his bloodshot eyes. His eyes were slits in his puffy face and he looked like he’d been stung by a swarm of bees. When we put him to bed, he had slept briefly before waking up, screaming in pain. But most concerning, and why we ultimately made the call to go to the ER, was he had refused to eat or drink for much of the day and his lips were cracked and bloodied from dehydration.

Leif was diagnosed with rapid onset, bilateral, acute conjunctivitis and bilateral, acute otitis media or in lay terms: a bad case of pink eye in both eyes and equally bad ear infections in both ears. They put him on Augmentin and because he’s never been on antibiotics before (and Augmentin is really strong), Leif’s eyes cleared up within 24 hours.

What’s This Got to Do with Lyra?

I wear contacts, I’ve had pink eye. You can’t wear contacts when you have pink eye. For me, that’s no biggie, I just wear glasses for a while. But if Lyra gets pink eye and cannot wear her contacts, she effectively cannot see. Recently, my own eye doctor, who also fits contacts on children who have had lensectomies, showed me what Lyra can see without her lenses. In an open container the size of a shirt box, the doctor keeps glass lenses lined upright in several rows, like poker chips. He handed me one of these diagnostic monocles by the tab in its wire frame and told me look through it with one eye closed. It was like looking through glass block. I could see light and color about as well as before, but shape and distance were impossible to comprehend. Were that my vision, I wouldn’t be able to walk safely down an open hallway.

When Lyra is older, she could wear glasses if she needed to. For her condition, however, it would require lenses that are extremely thick and made of glass, not the lightweight polycarbonate most eyeglass lenses are made of today. Right now, she’s too little for the glasses she’d need and taking a break from her contacts would potentially affect her brain’s vision development. In order to literally grow the part of the brain that processes vision, the brain needs the eyes to see, and see well. As I described in the post “I See You and You See Me,” this is why Lyra had her lensectomies at such a young age (six and seven weeks old).

Lyra’s Eyes

Lyra’s surgeries were dramatic, so it’s no wonder people often ask for updates on her eyes. The good news is that there is not much to report. Her eyes healed from surgery without any complications. She wears extended wear contacts that are aphakic. Aphakia simply means an eye without a (natural) lens. Eyes have lenses that, when working perfectly in pairs, provide 20/20 vision. Thus, aphakic contact lenses (or glasses) are not corrective lenses, but rather replace the surgically removed lenses. Many people, particularly as they get older, don’t have perfect lenses and need either glasses or contact lenses to correct their vision. Less common, and not universally recommended, is refractive surgery in which a corrective lens is surgically implanted over the natural lens to correct nearsightedness.

Lyra’s aphakic contacts do not look like my contacts. It is easy to see them in her eyes—the edges often look like a piece of Saran Wrap that isn’t fully adhering to her eyeball. Also, her pupils are clearly magnified, which makes them look huge, like manga pupils. I asked Lyra’s surgeon about the way her contacts look a week after her second surgery. Something I love about her surgeon is that he clearly gets geeked up when I ask him to explain how what he does works.

“So you wear contacts, right?” he asked and I nodded. “Well, your prescription is probably somewhere between three and six.”

“It’s about a four,” I said.

“Lyra’s is a 20. And that’s why they are shaped this way,” he said as he showed me the lens he was about to place in Lyra’s left eye. On the tip of the surgeon’s forefinger the contact rested as it would in her eye. He held it up so I could see it in profile. My contact lenses when viewed from the side look like the arc of the sun just before it sets on the horizon. Lyra’s look like a UFO because the center of the lens pops up, like the control room where the aliens sit when they fly their saucer ships. That’s where all the magnification is and why her pupils look so big.

Kitty-Eyed

The pupil on Lyra’s right eye is not round but elongated at the top, looking a little like a cat’s eye. A small portion of her iris, just above her pupil, was unintentionally removed in her lensectomy. When I pointed it out to the doctor, he said it happens and her blue eyes made it more noticeable. He didn’t seem concerned, but I was and wanted to know if it would affect her vision.

“No, not at all,” he said. “She’ll just have this one unusual looking eye. You know, the other night I was watching the news on TV and I saw a reporter who had the same thing. Years ago, that reporter would have tried to hide her elongated pupil with a cosmetic contact, but we’ve come a long way. Your daughter will be fine both physically and socially.”

What Sucks

Early on, the surgeon told us he’d keep Lyra in contacts as long as she’d tolerate them, forever even. I thought by “tolerate” he meant something medical, but he didn’t. It became clear to me what he did mean when I spoke with another mom in the waiting room just before Lyra’s contacts were cleaned for the first time. This woman’s daughter, who does not have Ds, was born with a cataract in one eye.

“After my daughter’s surgery,” she told me, “she wore a contact, but I couldn’t get the thing in or out, you know? And it popped out all the time! I mean she would just scream and I couldn’t hold her still, so they gave her the glasses, but she kept pulling them off. Finally they agreed to do the surgery. But now I don’t think she’s seeing in that eye and that’s why we came in.” A pretty child of about three, she wanted to see my baby. Seated with Lyra in my lap, I looked into the girl’s big, brown eyes when she came over to us. Her left eye looked blind.

“That’s because her mother has a hard time getting her to wear a patch on her good eye,” said the surgeon. In the exam room, I told him how upset, no, completely freaked out I was at the idea that after the surgeries our Lyra could still be blind. “Things are ironically easier for your daughter because she had bi-lateral cataracts. She doesn’t have a dominant eye.” As for the difficulty that mom had changing her daughter’s contact lenses, the surgeon told me that because of Lyra’s Ds her eyelids were very different, making it harder to insert and remove the contact lenses. Therefore, he told me, they will be conducting the cleanings in his office for the foreseeable future.

Okay, that was a relief to hear. But then we went through what was to become a nightmarish monthly ritual:

1)    A nurse’s aide comes into the exam room and has me lie Lyra down on my lap with her bottom against my tummy and her head near my knees. After thoroughly washing her hands, she tries to hold Lyra’s eye open with one hand so that she can place a small suction cup (designed to adhere to contact lenses) on Lyra’s contact. As soon as the aide tries this, Lyra clamps her eyes shut and screams like she’s been cut with a scalpel.

A baby's eyes opened with optical specula. This is not Lyra, but it is how she looks when they are used to remove and insert her lenses.

A baby’s eyes opened with optical specula. This is not Lyra, but it is how she looks as she lies in my lap while I hold her down. It’s no wonder she fights.

2)    The aide leaves the room and comes back with a nurse. The nurse pulls an optical speculum out of a drawer and, after two or three attempts, manages to get it properly in Lyra’s eye. This is never a pretty site. With her eyelids forced open, the aide again tries to suction out the contact. It still doesn’t work, so she instead tries to use a long cotton swab to push the lens off of the center of Lyra’s eye. Once, this made the eye bleed. All the while, Lyra is screaming and sweating as I continue to hold her arms to her sides and the nurse firmly holds her head.

3)    After several attempts, the aide again leaves and brings back the surgical fellow, a woman from India, who attended both of Lyra’s surgeries. Using a different speculum, the surgical fellow quickly removes both contacts. As soon as the second lens is out, I pull Lyra up and hold her on my chest to calm her down.

4)    Putting the cleaned contacts back in is almost as difficult as getting them out and only achieved, again, by the surgical fellow.

“I won’t do it next time,” I told Max after the second time I had to be the thug who held Lyra down while they tortured her in the exact same fashion two months in a row. “Her appointment to clean her contacts next month is at 8 a.m. You can take her before you go to work.” When he took her at the end of January, I told Max before he left, “Insist they bring the surgical fellow in first, not last.”

“It wasn’t that bad,” said Max when he called me after the appointment. “The surgical fellow was in surgery, so they sent in the nurse’s aide and she got the first lens out on the second try.” Unbelievable. I certainly want this to be as easy and painless as possible for Lyra, but it seemed unfair that it had been such an ordeal when I had taken her. Perhaps the team had gotten their technique down. Perhaps Lyra has become better accustomed to having her eyes messed with. But I’m afraid she did worse with me because she felt my emotional distress at holding her down against her very strong will.

“Also,” said Max after returning from Lyra’s breezy appointment, “the doctor upped the strength of her lenses and we both agreed that her left eye was crossing in and so we have to start patching her right eye for one hour every day. Oh, and she doesn’t have to get her contacts changed for two months now.”

Lyra looking unusually happy during morning eye patch hour.

Lyra looking unusually happy during a morning eye patch hour.

I don’t know if it is the increased strength of her new lenses or the fact that we are now several months past her surgeries and her brain has had time to catch up to the visual input, but the way Lyra sees has changed recently. Maybe it’s the new lenses working together with the more developed brain. Whatever the underlying causes, it is as though Lyra has awakened. She quickly turns towards the direction of sudden sounds. She recognizes people and rewards them with full-faced smiles.

We find we do best  when we treat patching Lyra’s eye the same way we do exercise: Do it first thing in the morning or it probably won’t happen. And because of the little girl I met in the waiting room at the surgeon’s office, you can be sure we do. Lyra fusses most of the time while the patch is on and after about half an hour, she often shuts her left eye. She isn’t sleeping, but seems to be telling us, “If you don’t take this damn patch off of my good eye, I’m outta here.”

Keeping Her Eyes Clear

Pink eye is extremely contagious. And even though antibiotics might have rendered him non-contagious, the fact that Leif cannot keep his hands off of Lyra makes me anxious. Five days after Leif began taking Augmentin, I took Lyra to her surgeon’s office to make sure she didn’t have conjunctivitis. I had lost all objectivity and her eyes looked symptomatic to me. We saw a different surgeon in the practice and he told me Lyra’s eyes were clear, but gave me his cell phone number with instructions to call if anything changed.

That same afternoon, my eye doctor told me I had a mild case of bacterial conjunctivitis. Mild enough that he would not have prescribed antibiotics except that I live with Lyra. The next morning, the same doctor told Max that he had a pretty bad case of it. That’s three out of six of us currently living in the house. My hands snag our clothes when I fold laundry because they are so dry from how much I wash them these days.

I love winter. I love the snow and the deep freshness of cold air. I love being cozy in a warm house with a fire in the fireplace or pies baking in the oven. But I want this winter to end. I cannot remember a cold and flu season that has come close to affecting us as much as this one has, where all of us have been sick more than once. Leif is still not 100% himself and it’s been two weeks since he first came down with a fever.

The next day the mercury is over 50 degrees Fahrenheit, you can be sure the windows of our house will be wide open. Meanwhile, we wash everything we can and often. Linens, hands, surfaces, faces. Knock on wood, so far it’s working and Lyra remains clear eyed.

 

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This Is Whoopsie Piggle

“You know it feels like I’ve been in Florida for only three days, not a week. But when I think back to when Grandma met me at the airport, that seems like a long time ago,” Jules said to me on the phone.

Jules with Grandma Ann & Grandpa Clark

Jules with Grandma Ann & Grandpa Clark

“Well, you’ve packed in a ton into one week,” I told him and, thanks to the grandparents, he really had. On the Whoopsie Piggle Facebook page, the family photo shows Jules looking at the camera through binoculars. His Grandma Ann gave him those binoculars at Christmas because, like her, Jules is an avid birder. In our yard, Jules maintains multiple feeders, each designed to attract different species of birds. Last fall, Jules helped to pay for the purchase of a serviceberry bush after angling for one all summer. Do you know how many birds are attracted to the serviceberry bush? Was the rhetorical opener we heard repeatedly and just prior to a litany of species. Jules has worked his way through innumerable bird guidebooks, which he reads like gripping novels. He prefers the drawings of Roger Tory Peterson to those of James Audubon and can tell you the migratory, mating and dietary cycles of more species of birds than you might have known existed. And he does. Tell us, that is. Endlessly.

Ah, the great goodness of good grandparents.

At The Villages, where Max’s mother and her husband, Clark, winter each year, a population of “active seniors” eagerly awaited the arrival of this young birder. The residents delighted in showing Jules birds he had never before seen and were impressed by his knowledge, both wide and deep, of the avian class, among other things (last summer, Jules’ other grandfather nicknamed him “Encyclopedia”). After six days in Florida, Jules told me he had seen 83 species of birds, 80% for the first time. He saw them around The Villages, on a day trip to the Gulf Coast and also on a two-day trip to the Atlantic Coast and Merritt Island.

Grandma & Grandpa Christensen with George, ca. 1978. It seems to be the only photo I took of them.

Grandma & Grandpa Christensen with George, ca. 1978. It seems to be the only photo I took of them.

Thinking about it after I hung up the phone, it reminded me of my time with my grandparents who retired to Arizona in 1973. Like Jules, I had been a child from Ohio flown to a state that was exotically different. My grandparents also packed up and traveled the state with me, though they brought along a fifteen-foot Aristocrat trailer. Over the period of three summers, we traveled through Cochise County in the southeastern corner of the state all the way north to the Grand Canyon and Lake Powell. Like Jules, when visiting my grandparents, the dramatic landscape and its creatures transfixed me. I took many photos of mountains and lizards and saguaro cacti, but woefully few photos of my grandparents. I have none of the three of us together. The next time Jules called, I told him to get photos with his grandparents, even if he had to ask a waiter.

For Jules, a week alone with his grandparents is a week in which he does not have to be one of five children. He is the sole focus of two adults and their community who, by all accounts, are having as much fun with him as he is being there. At home, Jules is a mini-me. After nearly a decade of being the youngest child in the family, he transitioned easily into role of big brother. When I tell people that Jules makes my life easier, it is no exaggeration. All three of the older boys are wonderful with three-year-old Leif and baby Lyra, I could not imagine they’d be any more loving and helpful were they three older daughters. Jules, however, is uniquely able to play like a child with Leif because Jules still is a child. Yet, at twelve, he has a foot in adolescence. Which shows when he helps with Leif and Lyra; regularly doing things like getting them food and drink, changing their diapers, bathing and dressing them, putting them to bed and plucking them from their cribs when they wake up. He does so without prodding, often taking Lyra from my arms whether I need him to or not.

In my girlhood visits to Arizona, I too soaked up the attention of my grandparents and their friends. However, for practical purposes, I was an only child. I did not see my father between the ages of five and fifteen and my only siblings are the two daughters he had in his second marriage. One of the most positive components of my mother’s parenting was her neglect, which, thankfully, was also her default setting. Her attentions were rarely positive and commonly violent, so neglect was preferable. For many years, she left for work as a bar maid within an hour after I came home from school. My stepfather, who sold farm machinery in multi-state territories, was rarely home on weekdays. Most afternoons, I ate my dinner and did my homework in front of the kitchen TV, washed the dishes, watched more TV, took a bath and read in bed until I fell asleep.

In Arizona, my grandparents planned their days around me. Oh, sure, we still went to their events, such as botanical society meetings or church outings, but even when there wasn’t much for me to do but sit and wait, I didn’t mind because I felt included, just as Jules did in Florida. This hit home when Jules told me Grandma and Grandpa taught me a new card game, I don’t know what it’s called, but we’ve been playing at night. I remember sitting at a card table my grandparents’ living room playing a game that required four decks of cards. Their wirehaired terrier, George, would hang out under the table, ready for someone’s hand to drop and scratch his ears. Night after night, once the dinner dishes were washed, my grandparents had no other desire than to spend time playing cards with me. These little things, in no small measure, buffered me through the years with my mother.

Who Are These People?

My grandparents in Arizona were my father’s parents. Even though my mother aggressively forbade any communication with my father for over a decade, her parenting default setting made summers with his parents possible. For the price of a plane ticket, she was childfree for three months. And I had three months to sample childhood.

My boys don’t have a relationship with any of their biological grandparents. With my mother, it’s a generational mirror. My adult relationship with her has consisted of long gaps of estrangement punctuated by brief periods of reconciliation in which I would cautiously hope she had changed only to find out all to clearly that she had not. I came to the conclusion a few years ago that there is absolutely no healthy reason for me to ever communicate with my mother again. My boys, who have their own stories to tell from their few interactions with her, have no desire to see her either. This week on Slate, I read an article validating our choices

The boys never hear from their father’s father, a widower who lives in Mexico.

None of the grandparents in our family are blood relatives except for Max’s mom. And she is not related to the three older boys. At Thanksgiving, I posted about spending yet another warm holiday with the boys’ grandparents, i.e., my stepmother and her husband, who is not my father. After divorcing my father, Liane married Bob a couple of months after Claude was born. Together, they have been the primary grandparents of my boys’ lives and now are significant to Leif and Lyra, too.

I wasn’t thinking of what kind of father Max would be when I fell in love with him. But knowing him as I did, for we had been friends for years before we became a couple, I would not have been surprised to learn that he would be devoted to his children. That he is equally as devoted to my three sons defies typical expectation. In terms of Darwinian fitness, i.e., survival of one’s own packet of genetics as the species continues, a child from another man is competition for the resources of his own children. But Max is not a base animal. He’s not even a base human. He loves and tends to Claude, Hugo and Jules just as he does Leif and Lyra.

As the old Ronco ads used to say, But wait! There’s more! Max also brought my boys a set of grandparents who are so good at it, I suspect they’ve been preparing for it all life long. And not just for the fun stuff. Last summer, when Claude had to go to orientation at the University of Michigan, he took a bus from Charlevoix, Michigan, where he was living with Grandma Liane and Grandpa Bob while working for the city streets department, to Battle Creek, where Ann and Clark live nine months of the year. Max’s mom was out of town, visiting relatives in Colorado. So it was my partner’s mother’s husband, known around here as Grandpa Clark, who spent the evening with Claude and then drove him first thing the next morning to Ann Arbor.

This Is Whoopsie Piggle

We’ve piggled ourselves up a family and it is good. Sure, there are times when I wish Max and I had met and fallen in love in our late 20s, that we had been together through our 30s and not had to wait until our 40s to create this family. But the longer we are together and the more normalized this family becomes, the less I pine for the decade when we weren’t raising these kids together. The way the boys love Max is as open as the way he loves them. Claude calls Max to discuss assignments he’s working on and when he comes home, the two of them go out for dinner together at least once.

“Hey, I hear you’re my mom’s boyfriend,” said 11-year-old Hugo in September of 2008, “Can I have twenty bucks?” Max told him no, but was not offended, and we still laugh about it today. Soon thereafter, Hugo turned to Max for help with his homework, advice on how to handle social issues at school and just to talk. Before Max, I was unaware of the void in the boys’ lives, one I had not been able to fill. Yes, I could show them how to be adults, but they also wanted to be parented by a man.

A few months after we had informed the boys that we were dating, Max joined us at a school event. When we left, Jules decided to ride with Max. As Claude and I watched from my car, Jules first got in the back seat of Max’s car. Then he popped back out. With his arms and legs moving in all directions, Jules looked like a gangly scarecrow as he scrambled into the front seat. “Jules likes Max,” said Claude. “We all do. He’s…well, he’s just so humble.”

There are some who believe that before they are born, children choose their parents. I have a hard time reconciling that idea with the parents I have. I do not believe biology trumps love. Being related is not reason enough to have a relationship with someone who is cruel or neglectful. Whoopsie Piggle is about a group people who actively love each other—all the time, not just when it’s convenient. Or in the booty-shaking words of Sister Sledge, “We are family.”

Claude, Leif, Max, Lyra, Holly, Jules and Hugo. All piggled up for a photo.

Claude, Leif, Max, Lyra, Holly, Jules and Hugo. All piggled up for a photo.

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