A friend only a few years into her adventures as a mom posted on my Facebook wall: “You need to write a parenting manual for me.”
I think about parenting a lot and have for a long time. So I quickly responded:
1. You will screw up but your kids will always give you a do-over.
2. Show up. Be present in heart and body whenever you can. Don’t beat yourself up when you can’t.
3. Push your kids to be the best they can be and then support them in their efforts.
4. Read NurtureShock, by Po Bronson and Ashley Merryman.
5. Remember, nobody will ever know you as well as your kids do. Nor will anyone else love you as unconditionally. Remember this especially when they are acting ugly and/or mad at you.
6. Make your parenting decisions thinking about how your child will look back at age 20 and wish you’d parented.
7. Love them knowing it’s the best investment you’ll ever make.
8. Responsibility breeds contentment.
9. It’s not your job to make your kids happy. That’s their job.
Am I an expert? Hardly. I am like a research scientist who collects data and applies the findings in my own lab with plenty of trial and error. Still, the results have been largely successful, which is both a pleasure and a relief. Relief because children learn best from what has been modeled for them.
My parents met at a freshman-sophomore mixer at Chicago Teachers College in the mid-’60s. I was born the day after my mother turned 19. Being a teen when giving birth does not guarantee poor parenting, but in my case, neither of my biological parents ever committed themselves to the task. (And if this sounds petulant, let me be clear: their neglect was far and away better than their attention, which was often violent in word and deed.)
For my mother, I was an inconvenience she would hand off to others frequently but never permanently, because that would make her look, well, like a bad mother.
Luckily they were not the only adults in my life. Even though years of my childhood passed without seeing them, my father’s mother and his second wife immediately and always claimed me. Neither was perfect (who is? see point 1), but my grandmother loved me like the daughter she never had, which is to say unconditionally, no matter what I did (oh, the list is long).
And my stepmother, who divorced my father in the early ’90s, and her husband are the grandparents my three big boys grew up with and adore (see point 2). None of us can recall when they realized Grandma and Gramps, married 22 years this month, are not biologically related to us.
Parenting is work just about anyone can get. But parenting well is a humbling exercise in leadership (see points 6 and 9) that can never be completely mastered. For each day is the first day of having a family the way it is. And while that may be hard to observe every 24 hours, compare years and it becomes clear:
Until this year, I had never had a child with a college degree who was earnestly, if not anxiously, trying to course his adult life.
Until two years ago, I had not realized my recipe for college acceptance and funding did not apply to my second son the way it had for my first son and me (study your butt off in all subjects and it will work out). My second son works hard at one thing: music (see point 3). He is also far more talented than either he or I knew when he began auditioning for schools.
Until months after his second birthday, my third son did not talk. He remains a quiet observer, which is how he has amassed a stunning amount of knowledge on all inhabitants of the planet Earth for one so young (16). In this house of creatives, I did not anticipate a biologist, particularly one who, like a tenured professor, can calmly give presentations to large groups of people.
Until my fourth son was a toddler, I had never experienced a child of mine being a daddy’s boy. The first three were barnacled to me when they were little, but then again, they did not have Max until they were older.
And until my daughter came into my life, I did not know I could love a child so hard I would try to use all my skills, and develop new ones, to change the world for her.
The pain of being an unwanted child bleeds like a wound that looks healed over until you pick at the scar. How I might have turned out had my parents wanted me, I cannot know. But it is from this wound that I chose to study parenting even before I knew I would have children of my own. And parenting my children with intention has cauterized, for the most part, my injuries (see points 5 and 7).
“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, I’m 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.
While 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.
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.)
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.
The 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.
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.
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.
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.
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.
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.
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.
The 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.
Whoopsie 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.
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.
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
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?
On 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
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
At 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.
Nancy 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.
Yesterday, 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.
If 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.
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. 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.”
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.
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.
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
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.
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.
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.
“Is there a vagina?” I immediately asked the midwife.
After a summer of crop-killing drought, it rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning and 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 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 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. More importantly, I felt certain I would lose the baby if I had an amnio. Like me, my grandma, who mothered me unlike anyone else, had four boys. Her only daughter died at birth because of the Rh blood factor. Grandma had negative blood and, like her first child, her baby girl’s blood was positive. At the birth of her first child, a boy, Grandma’s blood created antibodies against his positive blood type, which remained in her body and, later, killed her daughter. I, too, have negative blood and my daughter’s is positive, but since the 1970s there has been a remedy for this. After each of my babies’ births, 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 she only had boys. 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.” Then I saw the 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 due to bi-lateral cataracts. Leaving 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 weeks of Lyra’s life whirled past us as we dashed to one appointment after another, first verifying her Down syndrome (DS), that she had no life threatening conditions (as can often be the case with babies with DS), and, most urgently, taking care of the cataracts in her eyes. Once her eyes were surgically cleared, we had an impending presidential election to absorb so much of our attention—along with daily life in a family of seven.
We made ourselves busy. Too busy to really take in what it means to have a child with Down syndrome. Too busy to spend time with uncomfortable questions as they slither up from the cracks of my mind. On the day Lyra was born, the midwife wisely counseled us to stay off of the computer for a while, to just spend time with our daughter. But just as important was to find support and accurate information as to what a diagnosis of Down syndrome means today in the United States.
I wish I had worried less about who my daughter would become and enjoyed the baby she was. ~ a mother, quoted in Babies with Down Syndrome
The test for Down syndrome is a yes-no test. Your child either has an extra 21st chromosome or she doesn’t and the results are back in as early as 48 hours. Lyra was born at home on a Tuesday. On Friday, we received the call confirming her diagnosis. But no test can tell you the severity of your child’s Down syndrome. You just have to wait and see.
There are, however, varieties of Down syndrome, including something called Mosaic Down syndrome in which not all of the cells contain the extra 21st chromosome. To learn what type of DS a child has requires a karyotype test, for which it takes many weeks to receive the results. Even though about 95% of children with DS have Nondisjunction Trisomy 21, or an extra chromosome in all of their cells, for nearly three months, I held on to the odds that Lyra was one of the 5% with Mosaic DS. She has few markers, I reasoned with myself, she’s developing beautifully and while there are no guarantees that a child with Mosaic DS will have milder symptoms, fewer medical problems or an easier life, I wanted it to be so. I wanted it because maybe, just maybe, Lyra would have fewer struggles. And, yes, be more typical.
Which is just magical thinking.
In a healthy mind, magical thinking can help us cope with something very difficult. In 2005, Joan Didion published her memoir, The Year of Magical Thinking, about her life in the months after her husband died suddenly of a heart attack. In essence the first three stages of grief on the Kübler-Ross model—denial, anger, and bargaining—all represent an element of magical thinking. The last two of the five stages, depression and acceptance, strike me as the points at which reality sets in.
Did we grieve because Lyra has Down syndrome? I know I did. But not all the time. Max immediately saw her as perfect and has continued to do so. The constant refrain from all of her brothers was and is, She’s so dang cute! Mostly, I enjoyed her for the baby she was, sweet and easy to hold, but I cannot help but wonder, as a child and adult, who she will become. At three months old, she only weighed 9lbs. 12 oz., which is less than two of my boys weighed at birth. She didn’t hold her head up as well as they did at three months due to hypotonia, or low muscle tone, which is a common characteristic of Down syndrome. But she remained in the range of normal development, even when compared to a typically developing baby her entire first year.
I have heard many people with Down syndrome children speak of uncanny coincidences, odd and, yes, magical things that occur with and around their children. Martha Beck wrote an entire book on it, Expecting Adam. When word got out that Lyra has DS, many friends recommended the book and one gave me a copy. Beck and her husband were in PhD programs at Harvard when they discovered they were pregnant with their son Adam, who has Down syndrome. Odd things happen throughout the pregnancy that Beck ultimately decides are very spiritual in nature, perhaps the work of angels or other spiritual beings.
On a warm day in late October when I had just finished reading Expecting Adam, I was overwhelmed with my day’s schedule, our clutter-filled house, the children needing to be reminded of things like, shut the door when you come in. Where are my angels? I have a child with Down syndrome too! I thought petulantly. That evening, I took two-month-old Lyra and went to a Down syndrome support group meeting, leaving my two-year-old son, Leif at home with his older brothers. As soon as I pulled into the parking lot where the meeting was held, my son Hugo called me.
“I don’t know what happened,” he said, fear in his voice.
“What?” I asked.
“Well, I was in the living room and Jules was in the kitchen,” he said.
“Yeah, so?” I asked.
“Leif had been in the basement, at least I thought he was in the basement, watching a movie,” Hugo continued.
“Okay, what is it?” I asked holding my cell phone ever tighter in my right hand.
“Well, I don’t know exactly what happened,” said Hugo and I wanted him shake him.
“What the hell happened?” I yelled.
“You don’t have to yell!” Hugo snapped back. “Leif must have gone out back through the porch and, uh, somehow the gate wasn’t locked because, well, this lady came to the door with Leif. She said he was on the street.”
We live on the busiest street in a small city. There are four lanes of traffic in front of our house. Across the street is a large church that has a playground where we often take Leif. A few days later, I learned the entire story. Leif had started to cross the street with no regard to traffic. A woman driving down the street saw a man, who was walking on the sidewalk, stop and pull Leif back onto the sidewalk. And then the man continued on his way. When the woman in her car saw that Leif didn’t belong to the man who’d pulled him to safety, she parked her car, got out, and went up to our little boy. She asked him where he lived and brought him home. Later, the woman told a friend the story. The friend knows us and called me.
I read the paper every day. Bad things happen all the time. Two strangers likely saved my son’s life. Was it the work of angels? Fate? Or mere coincidence? I can’t say. But I hung up the phone and thought of my earlier complaint. “I’m sorry, I take it all back! We’re good! Thank you!” I said outloud.
Max and I both believed we could have a child with special needs if we were audacious enough to try for a second baby together. At least, we occasionally mentioned it to each other in the year after we had Leif, who was born without any diagnoses when we were 44 years old. I wondered if trying again was hubristic, was I daring the gods, did I think I was somehow superior to the odds of having a baby with an extra chromosome, which were high? No, I did not. In fact, I quietly believed the odds were more than high. I believed they were certain.
Clearly many would see this as an unacceptable outcome because more than half the women in the U.S. who learn they are carrying a fetus with Down syndrome elect to terminate the pregnancy. Others, like Martha Beck, may see having a child with Ds as a gift, a reward for parents who might feel chosen by a higher power. To me, it’s neither.
As with all my children before I conceived them, I felt that there was a child out there, the last one, waiting to come to our family, and that it was my girl. Max would also on occasion say things like, “It would be nice for Leif to have a sibling close to his age; he’ll be so young when Jules goes off to college.”
And so, when Leif was just two months shy of his second birthday, we bought an ovulation kit and Lyra was conceived the first month we used it. On Thanksgiving Day.
But What Can We Expect?
On Lyra’s second day of life, we had a long discussion with a genetic therapist. She took her time with us as we began to learn that the expectations for children with Down syndrome are radically different than they were when we were growing up. For example, consider this fact: When I graduated from high school in 1983, the life expectancy for someone with DS was 25. Now it is 60 and increasing.
Today, children with Down syndrome benefit from early interventions including speech, physical and occupational therapies. There are highly organized support groups nationwide including, in Northeast Ohio, The Upside of Downs, a group who has been tremendously helpful to us from the moment we first contacted them. There are also national organizations including the National Down Syndrome Congress whose video, “More Alike than Different,” explodes old notions of what adults with DS are like and what they can do. As does the documentary movie, Monica and David, about a married couple, who both have DS.
The success stories are encouraging and truly heart warming—I easily become weepy watching them. But like buying a new car and suddenly seeing everywhere the same car, in the same color, it now seems that I see children and adults with Down syndrome all the time, not just at functions for families in the DS community, but as I am out in daily life. And clearly not all of them function as highly as the young people in the aforementioned videos.
The truth is none of us know what our journey will be with any of our children, whether or not they have Down syndrome. I have two sons with severe dyslexia who have required significant interventions. I have one son who turns to gold anything he sets his mind to—academics, sports, music, visual art. And it is that son who regularly commandeers immense amounts of my parenting time, attention and certainly energy. I could not have predicted any of these journeys with my oldest three sons when they were babies in my arms. I love none of them any more or any less for who they have become. Rather, much of the joy in having a large family is getting to watch both how similar and how different each child is from the others.
With Lyra we are immediately aware that we have a unique journey. There is a helpful analogy often told in the Down’s community about giving birth to a baby with Down syndrome. It’s as though you were preparing for a trip to Italy—you found your dates, purchased the items you thought you needed. Perhaps you’ve been to Italy before and are looking forward to returning. Or maybe it is your first time, but friends of yours who have been to Italy before tell you what to expect, how to plan for your trip. The big day comes, you board a plane and make the long, tiring flight to Italy. But when you disembark, you find yourself in Holland.
We arrived in Holland with Lyra, because we quickly knew she had Down syndrome. And like customs officials at international airports, in the first year of her life, we met with an onslaught of medical officials as we worked to make sense of where we were. Even after more than a year of familiarizing ourselves with our situation, we don’t yet know on which roads our journey with Lyra will take us or what cities we will end up in. Only as she grows, and we learn how having that extra chromosome specifically affects Lyra, will we be given our unique map to follow in this territory that in one short year was no longer felt foreign.