My Music Man

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

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

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

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

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

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

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Lyra: Our First Year Together


Lifespans in Life

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

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

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

Why I Write

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

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

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

Not Just a Down Syndrome Blog

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

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

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

Lyra’s Eyes—More Concerning than Down Syndrome

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

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

Statistics Versus Reality or When the Number Is Yours

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

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

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

New Trick

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

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

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

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

    Baby glasses with Mama glasses

    Baby glasses with Mama glasses

Seeing Clear and Straight

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

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

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

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

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

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

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

Eye Surgeries 3 & 4

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

A few days post-op

A few days post-op

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The New Normal

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

Hugo's new squeeze

Hugo’s new squeeze

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

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

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

Just a Child

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

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

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Circling the Wagons

Have Children, Will Travel

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

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

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

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

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

Training Up the Mama

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

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

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

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

Training Up the Little People

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

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

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

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

Stopping the Madness or Removing the Japanese Beetles from Life

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

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

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

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

And so, we have decided not to travel more than two hours away (other than taking Claude back to the University of Michigan) for the next six months. Nor will we have extended houseguests for at least the next year (we’ve had four in the two years that we’ve lived in this house with the latest, Nancy, having transitioned to her own home at the end of July). And instead of driving 40 minutes away for Lyra’s various therapies, she is on a waiting list at Akron Children’s Hospital, which is five minutes from our home. We are even giving ourselves permission to stay home when there are performances, fundraisers and other events that we typically feel obligated to go and enjoy.

It feels liberating. Like taking back our lives.

Kumbayah Birthday

IMG_2149The calm trip home from Vermont took two days and we arrived in Akron late on a Monday evening. The following Wednesday, our Lyra turned one.

On her birthday, I sent Lyra to daycare with her brother Leif. After all, she is a fifth kid and I hadn’t been home in two weeks.

That evening, I made a ratatouille with the fresh vegetables I had picked up that day from our CSA while Jules made lemon cupcakes from scratch. None of the boys had to work and were home to celebrate their sister’s birthday. Three of our dearest friends joined us including Vanessa, who is otherwise known as Lyra’s personal photographer. She brought a CD containing a slide show of Lyra’s birth, set to the Beatles song, “Here Comes the Sun.” Our home was full of our children and friends, all joyfully celebrating Lyra and this first year she has been with us.

It was also the last day Lyra was cross-eyed. She had surgery the following morning. More on that up next in “Lyra’s Latest: After Our First Year.”

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Lyra’s Latest: Fully Human & Needing a Civil Rights Movement

Your daughter was born with Down syndrome. Do not expect her to read, write, do math or ever drive a car.

A physician said these words to the parents of a buoyant baby girl, aptly named Grace, in the days after her birth at UC Davis Medical Center. It sounds like something a doctor might have said in the 1960s. But in fact those words were spoken in August of 2012, the same month that our daughter, Lyra, was born. The parents who were told this spent the first months of their daughter’s life in a gloomy fog, bereft because of what they were told not to expect.

Too many physicians, people whose job it is to know the latest research and trends, do not understand the realities of a Down syndrome diagnosis but instead cling to limiting portrayals. Why is that? That falsehoods regarding a diagnosis of DS are tenaciously held and promulgated by anyone, but especially health care professionals, needles me as I try to understand why. The only explanation I’ve come up with is that it is still acceptable to discriminate against this specific population.

Which is why we need organizations like the National Down Syndrome Congress.

Driving to Denver: Our First National Down Syndrome Congress Convention

While always a resource for information, support and research, the primary function of the non-profit NDSC is holding the annual convention. For two and a half days, sessions are held addressing they myriad challenges families of people with Down syndrome face, as well as sessions for people with DS themselves, at different ages and developmental stages. Many families come every year and one such veteran of the convention, a mother from Arkansas, recommended we stick to the sessions that relate to our child’s age.

Max and I, both incurable students, were eager to attend but the roughly 1400-mile drive might have been a deal breaker if the destination were not Denver. The fact that Max’s sisters and their families live just outside of Denver sealed the deal. And so, taking ten-month-old Lyra,  3-year-old Leif and and thirteen-year-old Jules, who helped navigate and keep the babies happy, I drove to Denver. Max flew out two days after we left, yet arrived six hours before we did.

Shared Fear

The first session we attended was on speech development. Even though it was four and a half hours long, it was heavily attended. Primarily an overview of the benefits of early and ongoing speech therapy for children with a diagnosis of DS, for me the highlight of the presentation was a short video. In it, five young women with Down syndrome were interviewed. Sitting at a table together, they discussed their training—two women were certified pre-school childcare assistants, having taken 90 hours of training at their local community college—and their careers. They talked about boyfriends and parties. Easily understandable, their language was rich and their conversational styles flowed naturally and comfortably.

At a break, I began talking with the families around me. They, like me, want their children to speak clearly and fluidly. “People judge intelligence by speech, it’s not fair, but they do,” said one father, distilling one of my greatest fears about my daughter’s Down syndrome in one short sentence. The truth of his statement was like a figurine on a revolving dais spinning slowly in the middle of our conversation. That some people with DS have difficulty speaking may not be reflective of their cognitive abilities, but rather due to physical challenges including hypotonic mouth muscles and the forward placement of the tongue. This fact is not widely understood by the general population. Instead, those who speak unclearly, or not at all, are deemed ignorant and too often are dismissed as valid members of society.

Multiple Intelligences

In 1983, Howard Gardner’s book, Frames of Mind: The Theory of Multiple Intelligences, broke down general intelligence in humans to these eight modalities:

  • Linguistic intelligence
  • Logical-mathematical intelligence
  • Musical intelligence
  • Bodily-kinesthetic intelligence
  • Spatial intelligence
  • Interpersonal intelligence
  • Intrapersonal intelligence

In our society, general intelligence is primarily understood by the strength of someone’s linguistic intelligence and logical-mathematical intelligence. College entrance exams exclusively test these two modalities, which also happen to be the two most challenging modalities of intelligence for people with a diagnosis of Down syndrome.

On the other hand, it has been repeatedly shown that many people with DS are hyper-social and hyper-sensitive, that is, they have strong interpersonal intelligence. And many folks in the DS community joke that the 21st chromosome is the “music” chromosome as singing, dancing and listening to music are passions of a significant number of people with DS. Our own girl loves her music-man brother, Hugo. When she is fussy, Hugo often takes her to the living room and plays the guitar or piano while singing, just for her. She instantly quiets and remains content for as long as he makes music. She does not, however, fall asleep while her personal minstrel plays for her.

Nobody Walks in L.A.

When we weren’t in sessions, Max and I walked around the exhibit hall pushing Lyra in her stroller. There were things to buy like eyeglasses and clothing specifically designed to fit people with DS. We purchased a speech therapy kit for Lyra that includes several straws, to be introduced at graduating levels because, unlike a bottle or sippy cup, when drinking from a straw, the tongue naturally moves to the back of the mouth. I spoke at length with a remarkable young couple, Tim and Liz Plachta, who have created a post-secondary scholarship fund for people with Down syndrome.  Ruby’s Rainbow is named for their young daughter who has a diagnosis of DS.

At a table for Adam’s Camp, a program in the Rocky Mountains where five therapists work with five kids for five days to get a boost in therapy goals, we met a father whose child with DS was ten years old. No longer in shock and overwhelmed, like so many of the parents there with babies, this dad was relaxed. As he chatted with us, his three children crowded around Lyra’s stroller, making her smile and clap. He told me he and his wife plan their yearly vacations around two things: a week at Adam’s Camp for their son with Down syndrome (while his siblings are at the typical camp on the same YMCA campus) and the NDSC convention.

“You know, we came the first time to the convention when our boy was just a baby, just like your little girl there, and the keynote speaker was this woman from LA. She was an actress with Down syndrome and I recognized her from TV shows she’d been on. She also worked in an office and drove there in her convertible BMW. In L.A. That changed everything for us, like how we think about our son and his life. So we’ve been back every year since then.”

Unlike the actress with Down syndrome, I’m not so sure I can drive in L.A., where the traffic is notoriously congested and the drivers are, even more notoriously, aggressive.

The Goal of Therapies

Shortly after Lyra was born, our local support group gave us a copy of the book, Gross Motor Skills in Children with Down Syndrome by Patricia Winders. Ms. Winders was at the convention and presented one session for pre-walkers and another for children who are already walking. Max and I both went to the session on pre-walkers and I am glad we did. After breaking down the early stages of gross motor skills into five stages, she asked for baby volunteers and chose Lyra to demonstrate Stage 3. While she sits up quite solidly now, Lyra does not put her arms out to catch herself if she tips over and, as a result, we cannot leave her alone sitting up unless she is on a padded surface. Ms. Winders had Lyra doing any number of seemingly impossible tasks in no time flat.

A toddler's pronated foot

A toddler’s pronated foot

That was thrilling, but what stuck with me the most from that session was the feet of another child. They haunt me. With their lax ligaments, children with Down syndrome can easily develop pronated feet if they do not receive early interventions. Stage 4 was demonstrated by a two-year-old girl, who has been “cruising” furniture for a few months but was not yet walking independently. This small child’s ankles bulged over her instep while her toes splayed sideways looking almost like fins.

“Has anyone recommended she use Sure Step braces?” asked Ms. Winders.

“I took her to the orthopedic surgeon,” said the girl’s mother, “and he just said, ‘She has Down syndrome; she’ll walk funny,’ and he didn’t want to do surgery.” It doesn’t take a doctor to see that the girl’s feet would eventually cause her pain from the completely avoidable malformation that was occurring. This mother was not derelict; she had taken her child to a specialist. The doctor’s attitude is reprehensible, if not malpractice.

Patrica Winders rolled her eyes and told the mom to get her daughter in Sure Step braces, not something like Sure Steps, but precisely that brand. And she stated to the entire audience the same point that the speech therapists we’d listened to had told us in other sessions:

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

Breaking News and Controversy: To Have DS or Not? That Is the Question.

In the middle of the convention, I received a text message from my friend Mariko, whom I have known since high school. Mariko’s text had a link to this Boston Globe article in which researchers have been able to “turn off” the extra 21st chromosome in cells taken from a man with Down syndrome. The application of this research is a long way from being determined.

To be able to end or remediate the medical complications and the cognitive limitations many people with Down syndrome face may seem to many, at first blush, a no-brainer. But I felt stopped in my tracks. The NDSC mantra is “More Alike than Different” and their work in educating society and supporting families encourages an attitude of integrating, not marginalizing, people with Down syndrome. There are many slogans on things from T-shirts, to Facebook groups (including one I belong to), and the aforementioned non-profit, Ruby’s Rainbow, that refer to Down syndrome as “rocking the 21st chromosome.” So what does it mean if somewhere down the road the medical technology exists to eliminate the effects of that very chromosome?

In the days since I first heard of this new research, voices have piped up to state that this would be akin to cultural genocide, including this Canadian woman whose daughter has DS:

We’ve got a genetically similar community, visible minority who are being targeted and terminated globally. People think, Well, this is the way it is and these people just shouldn’t be.

This news initiated one of the most achingly honest conversations I have read on a social media Down syndrome support group. Generally, the comments on that group are full of cheers for each others’ children as they master some milestone or another. And just as often, words of comfort are given, and prayers offered, when families post about set backs or serious medical interventions, such as open-heart surgery. The idea of “turning off” the extra 21st chromosome strikes this chord with so many families: It is offensive that people do not accept our children the way that they are, but it is also true that our children struggle greatly not only with health issues but also learning their basic gross and fine motor skills, speech and hosts of other things that we in the “typical community” take for granted. People with Down syndrome may be more alike than different from people without an extra 21st chromosome, but their successes often come due to intensive interventions and plain old work. Hard work.

And after all that work, even if a child with Down syndrome grows into the most independent, successful adult, what awaits is a cruel sentence. Alzheimer’s is not a matter of if, but when. All adults with Down syndrome begin manifesting the physical pathology of Alzheimer’s in their forties. 80% will go on to develop dementia. And, yes, there was a session at the NDSC convention on this subject.

Again, what we don’t know is what this latest research will bring to bear on the lives of today’s children with a diagnosis of Down syndrome. Research on Down syndrome, and the attendant complications, is being conducted worldwide. At the NDSC convention, Lyra gave saliva samples to a scientist studying autoimmune disorders in Down syndrome (Lyra’s hypothyroidism is considered an autoimmune disorder) at the Linda Crnic Institute for Down Syndrome.

What Does it Mean to Have Down Syndrome?

If someday there is a medical way to “turn off” the extra 21st chromosome, I suspect that the Down syndrome community will treat it similarly to the way the Deaf community has responded to cochlear implants as described in this article:

The conflict concerning cochlear implants is centered on the definition of disability. If deafness is defined as a disability, as it is from the medical view, it is something to be altered and repaired. On the other hand, if deafness is defined as a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today’s society, should be readily accepted and supported. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.

I don’t know what we, or Lyra herself, would one day choose to do. Of course I would want to spare my child the suffering of early onset Alzheimer’s, but everything about my daughter’s diagnosis of Down syndrome has caused me to rethink so much of what I once assumed.

Ask Them

The bigger question is whether having Down syndrome is such a bad thing. Yes, all the medical and health issues suck, suck, suck. If I could wave a wand and take away all the attendant medical issues that come with Down syndrome, I would. Without hesitation.

But consider this: People with Down syndrome are vastly happier than people without Down syndrome. Physician and researcher Brian Skotko published the following findings:

  • 99 percent of adults with Down syndrome reported feeling happy with their lives
  • Another 97 percent said they liked who they were and
  • 96 percent liked the way they looked


  • 97 percent of siblings ages 12 and older expressed feelings of pride about their brother or sister with Down syndrome and
  • 88 percent were convinced they were better people because of their sibling with Down syndrome

The Cost of Ignorance: Justice for Ethan Sayer

In Maryland last January, a young man with Down syndrome tried to watch Zero Dark Thirty for a second time in a movie theater before buying a second ticket (his family believes, based upon his phone record, that he was trying to do so with his cell phone). Three sheriff’s deputies, who were working mall security, brutally apprehended Ethan Saylor for this offense. Mr. Saylor’s caregiver was present and told the officers not to touch her client because it would escalate things. She was right. It did.

Instead of treating him like they would any other adult human, intead of listening to the simple advice of his care giver, instead of using training they claimed to have received for dealing with people with developmental disabilities, the sheriff’s deputies assaulted Ethan Saylor. And instead of watching Zero Dark Thirty at the time it was scheduled, the other audience members witnessed the beginnings of a murder. After being dragged out of their view, audience members report hearing Mr. Saylor cry, “I want my mommy!” as he was shoved to the floor, handcuffed and, according to the medical examiner who conducted his autopsy, asphyxiated. His death was ruled a homicide

In January of 2013, in the United States, a man with Down syndrome was murdered by the authorities. For a movie ticket? No, for being different.

In the community of families that include someone with a diagnosis of Down syndrome, we are all Ethan Saylor’s family. His murder is the worst fear of a parent with a child who has DS. I believe Ethan would not have been murdered had he been a man without Down syndrome.

IMG_2087I met Ethan’s mother and sister at the NDSC convention. Hardly their first time at the convention, they’ve been regular attendees since Ethan was Lyra’s age. They had a table set up with buttons. I took several. They had photos of Ethan from the time he was a baby, with tufty blonde hair, to his high school graduation. And they had displayed his collection of police and military paraphernalia—badges, patches, hats. Ethan, I learned from his sister, was a big fan of the police and military. One of their biggest.

I talked with his sister, a pretty woman in her twenties with blonde hair framing her face in soft ringlets and blue eyes that held my gaze while we spoke. She told me that the moms of kids with Down syndrome who have been keeping up the pressure, particularly in the blogosphere, have sustained Ethan’s family as they seek justice. It hasn’t come easily. The Sheriff’s department investigated its own officers and found no need to press charges. After the release of the Sheriff’s report, witnesses to the murder have contacted the family to tell them the report was inaccurate.

The Washington Post reported last week that, “with good reason, the Justice Department is now investigating the incident as a civil rights case.”

The NDSC Takeaway

Max and I learned so much at the National Down Syndrome Congress convention about how we can help our daughter realize her full potential. We found information, support, community and tools to help us be the parents she needs us to be.

But all we learned was not bright. We learned how far our society is from treating as fully human those who have a diagnosis of Down syndrome. From baby Grace, born in a modern hospital affiliated with a major university, whose life doctors summarily dismissed her life as having any potential, to Ethan Saylor, dying at the hands of the officers sworn to protect him as a citizen.

Next year’s NDSC convention will be in nearby Indianapolis in early July. If you’ve ever been interested in attending, I strongly encourage you to do so. You’ll find us there.

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Life Changes in a Moment

Each time a child is born, a family reconfigures itself. A couple become parents, an only child becomes a sibling. In families with several children, the baby is no longer the baby. We knew and expected this familiar shift last summer as we awaited the birth of our first daughter.

Then our girl arrived with her unexpected extra chromosome. Several essays about family were already mulling around in my brain when, a few weeks before Lyra was born, a friend suggested I start a blog. Since her birth and diagnoses (Ds + cataracts), there has been nothing else, for now, I can write about except this family. This includes politics & religion, which are, in my mind, intrinsic to family. Our beliefs are the windows from which we view the world and our places in it. And how others see us.

The beauty of a blog is that the author is in charge. I decide not only the topics (this family we’ve piggled together), but also the form. I find it somewhat impossible to write short, chirpy posts. I write essays. Perhaps I am limiting my readership by requiring more time and, frankly, work from readers but I am nonetheless committed to essays. Again, it seems I am incapable of anything else at the moment.

If essays require the reader to work, they require from the writer, at least this writer, hours of time, writing and re-writing, walking away and thinking only to write and re-write yet again. And more than anything, they require hours of uninterrupted silence.

Summertime, Summertime

I have written  two recent essays about how full up our house is now that everyone is home from school. And too, we have an added friend and her two dogs staying with us. Even when they aren’t forming a steady line of traffic into my office to ask what they promise are important questions (Can I eat last night’s leftovers for lunch? Do you know how much money is in my bank account? Can we go to the bird store when you’re done writing? Do you have any masking tape in your desk?), the cacophonous background noise dings and dents my attention like spitballs shot from modified Bic pens.

WPCardI am currently working on two essays of greater complexity. I’m beginning to think I will not finish them until September when four of our eight residents have returned to school, one in another state. So instead, I have worked on things I can do with regular interruption: Improving the look of Whoopsie Piggle–adding side bar features, including a link to all the “Lyra’s Latest” posts. Opening a gmail account for Whoopsie Piggle. Creating and purchasing Whoopsie Piggle business cards to take with me to the National Down Syndrome Congress conference. And at my request, Whoopsie Piggle has been linked to a site for Down syndrome blogs.

The Business of Writing

Which is to say, I’m using summer for the business of writing. You ask, “The business of writing?” Yes, the other side of being a writer is working to get you stuff out there. Getting published in one form or another. I’ve often wondered if some of the world’s best writing isn’t moldering in desk drawers because creativity and business savvy don’t always reside in one brain.  And perhaps therein lies the rub of blogging: anyone can do it because, in fact, it is self-publishing. In the old days (i.e. anything before 2000), self-publishing was synonymous with vanity publishing. People would spend small fortunes to have their book–be it memoir, novel, short story or poetry collection–printed and bound. Copies would be distributed to friends and when the author died, his or her family would have to decide what to do with the dozens, if not hundreds, of copies remaining in boxes in the basement.

Writing time so hard to come by, such a valuable commodity, I’m hard pressed to do anything but write, rather than work on submissions, whenever I can.

And so it is when other writers ask what I am doing these days, I find a distinct age break in their responses. When I tell writers over forty that I’m writing a blog, they struggle to keep their faces composed while saying something like, “Oh, really?” before quickly changing the subject. Writers under forty, however, light up with surprise at someone of my advanced age (47) working in this immediate, techno-format before saying, “That’s so cool! What’s the name of your blog? I’ll check it out,” as they type “Whoopsie Piggle” somewhere on their little smartphones.

True Confession: Part of why I’ve dedicated myself to writing in this format is because it’s all I have time for right now. As I’ve mentioned in prior essays, women writers in the canon are rarely mothers. It’s no coincidence. Getting published in anything credible takes not only talent, but time. Research is required to find where to submit, query letters must be written and sent, logs kept of submissions and so on. One can argue that it is easier to be a woman writer today. Perhaps. But I went off and had five kids and feel compelled to raise them all attachment style.

A Week of Whoopsie Piggle

July 4, 2013

A valient, yet unsuccessful, rescue attempt

A valient, yet unsuccessful, rescue attempt

Max and I get up at six a.m. because we both have work to do. I have over a hundred pages to proof and he has legal documents to write. When finished, we shower and pack. By 11 a.m., we are on the road to my stepmom’s in Charlevoix, Michigan. Three hours later, we stop in Ann Arbor, Michigan for coffee and to switch drivers. So Leif can shake a leg and run around while I nurse Lyra, I suggest we drink our Starbucks at an outside table. In one hand, Leif holds his favorite Thomas the Tank Engine. In the other hand is the race car, Lightning McQueen, of Pixar fame. Before I can even sit at a table, Leif bends over a metal rain grate in the grass and drops Lightening McQueen down a hole that is six feet deep. Nearly two hours later, after several valiant rescue attempts with a ball of duct tape wrapped around the end of a measuring tape, we convince Leif that his little red car is going on an adventure. Without Leif.

July 5, 2013

Ulrick'sMax wakes up at six a.m. in our 1950s style cabin, quietly dresses and drives to town for coffee, crackers and whitefish paté (a Michigan treat for the adults), cereal and milk (a morning standard for the kids). Jules, who had been with his grandparents for the previous two weeks, shares a bed with Leif. As everyone dresses and eats, I search through all our bags for Lyra’s Synthroid, which she must take on an empty stomach at the same time every day. I cannot find it. We drop Jules and Leif at the grandparents’ house and spend the better part of three hours finding a pharmacy with the correct dosage and getting her prescription filled. When we rejoin the boys on Michigan Beach, Leif is asleep on a towel. I lie next to him and promptly doze while Max and Jules build earthworks in the sand.

July 6, 2013

IMG_1943 IMG_1944 IMG_1945I struggle after one of my annoying insomniac episodes. Two a.m. and * bing * I’m awake for three hours. As a result, I’m not the most pleasant person in the morning. Brittle, in fact. Max is patient and loads us all up in the car. We drive 50 miles north and cross the Mackinac Bridge (pronounced mack-in-awe), one of the world’s largest suspension bridges, which connects Michigan’s two peninsulas. North of the bridge is the Upper Peninsula, or UP. We find lunch before heading to a Lake Michigan beach that is banked by twenty-foot sand dunes. We play where the Brevoort River, its water the color of iced tea from tannic acid, empties into Lake Michigan, the lake’s water strikingly warmer than it is in Charlevoix. When we get back to the grandparents’ by 4 o’clock, we find that most frustrating of all family dynamics: miscommunication. Grandma had wanted to go with us. I thought she and Max had discussed it. He assumed she couldn’t travel that far. She didn’t want us to turn around after she realized we’d left, so she didn’t say anything until we returned. Sigh, sometimes even the simple things aren’t easy.

July 7, 2013

20 mph on I-75 all the way down Michigan. 13.5 hours of travel. With small children.

July 8, 2013

Post-trip errands. The usual—grocery store, bank, gas. And then I take Lyra for a thyroid blood draw. She’s clicking mentally these days, which is beyond great. Except when she looks me in the eyes as I hold her squirming body down for one nurse and then another as each of them root with a needle in her tiny arm, trying to find a vein to give them the blood they need to fill the order.

How can you let them do this? Lyra’s eyes look at me as though she’s just learned I’ve told her a lie that changes everything she understands.

“It’ll be okay, shhh-shhh,” I tell her.

You are supposed to protect me, this is not okay, they are hurting me, why aren’t you making them stop? She demands of me with her eyes.

July 9, 2013

After morning daycare, I drive Lyra to Medina where she not only does her bi-weekly physical therapy, but also has an occupational therapy evaluation. She does great and immediately picks up a toy with her left hand and transitions it to her right one. Still, she needs a little help with the getting things to her mouth and the pincer grip. More appointments are scheduled.

July 10, 2013

At 8 a.m., Lyra and I meet with her endocrinologist, who tells me her thyroid numbers are finally at therapeutic levels. And in one month I will get to hold her down for another blood draw before she has her next eye surgery.

That afternoon, Jules and Nancy watch a movie while I am working in my office. A storm erupts as though driven in by the four horsemen of the apocalypse. “Mama! Water is pouring in the basement!” Jules runs in to tell me. Only one of our basement windows, which are all glass blocked, has a small opening for ventilation. The drain in the window well of that window has backed up. While Nancy and Jules hold trashcans and storage bins under the window to catch the flowing water, I run outside. For over an hour, I heave five gallon buckets of water out of the window well. When the water is below the opening in the middle of the glass blocked window, Jules comes out and helps me. Five gallons weighs 40 pounds, Jules weighs 90. Yet he carried and dumped bucket after bucket for more than half an hour.

Providential: We were home and caught it as it happened. Equally miraculous was that none of us were struck by lightening as it exploded all around us for nearly two hours.

Oddest of all was our little emergency took place in the front of our house while traffic backed up on our busy street. Later, we discussed how it felt like we were part of some surreal staged drama.

Carry On

Two days after the flood, we welcomed a stranger to our home. Zac will be renting a room in my house, the house the boys and I lived in before we moved in with Max. Zac’s lease begins August first, but his classes started July 15. Last week, I volunteered to house him in our basement in the interim.  Well, scratch that. He’s staying on a mattress on the floor of our cramped enclosed porch.

Yes, that makes nine people in our house. Four of us, however, are leaving for Denver and the previously mentioned annual conference of the National Down Syndrome Congress. I am driving with Jules, Leif and Lyra. When Max flies out to join us, I imagine the house will feel empty sheltering only four adults.

A two-day drive each way, Colorado is our next adventure. It need not be exciting.

I’ll try and keep you posted.

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Pictures Paint

Lyra cheers for VCGPhotography

Lyra cheers for VCGphotography

I have a thousand words or more for each of the pictures from this recent photoshoot of my littlest children. I easily have several thousand words describing my journey with the photographer.

But now is the time for the writer to step aside and let the visual artist, Vanessa Gilbert, speak with images as only she can do.

If you are a reader located in NE Ohio, I strongly recommend that you consider hiring my dear friend the next time you want to have professional photos taken. She’s amazing with kiddos of all ages, composition and final products. See for yourself:

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Lyra’s Latest: Baby Doll to Baby


She Awakens

“What’s the word you just used?” I asked Lyra’s ophthalmologist.

“Myelinate. It’s a coating over the nerves, just like that wire down there,” he said pointing to the floor where a thick cable traveled a short distance from the exam chair I was sitting in, holding Lyra in my lap, to the wall where it was plugged into an outlet. “Because those wires are insulated, currents travel faster than if they were not. Our nerves are the same and children with Down syndrome tend to myelinate a little later than other kids.”

Like her pediatrician, Lyra’s eye surgeon is incredibly smart. He observably delights in answering questions and, if we are discussing eyes and not nerves, he often dashes over to a poster on the wall that illustrates the anatomy of the human eye. At her last visit, I shared with him how she had changed since beginning treatment for hypothyroidism in early April. It’s not that she seems more intelligent, but rather she’s more alert and awake. A leader in a Ds support group told me that “our babies” tend to wake up at around nine months, but she was not sure why. Learning why from the ophthalmologist  reminds me that I cannot rely on any one source—be it a book, website, support group or even a doctor who specializes in Ds—to fully inform me. I need to continually synthesize all the resources available to us, the parents of a child with Ds.

And I see the beginning of a lifelong pattern of questioning whether or not something is the direct result of Lyra’s Ds. Earlier, I had asked if she refused a bottle because of the hypotonia attendant to Ds. Because she is a champ at breastfeeding, which requires more muscle strength than drinking from a bottle, I believe Lyra’s rejection of bottles is purely personality and not due to any Ds related hypotonia. Now, we’ve learned, her new vivaciousness is attributable to her Ds and not her pharmacological treatment for her thyroid issues.

She Grows

Because they are generally smaller than typical children, doctors use a growth chart specifically designed for children with Ds. At an appointment in late March, just a week before she began taking Synthroid for her hypothyroidism, Lyra was 24 inches tall, which put her in the 20th percentile for children with Ds. After two months on Synthroid, she was 26 inches tall, putting her in the 50th percentile for kids with Ds. She has gained nearly two pounds and now weighs a little more than 14 pounds. That keeps her where she was at in March, in the 30th percentile for weight, but, again, that may not be caused by anything atypical. Though she eats food, Lyra is exclusively breastfed and after six months of age, breastfed babies tend to gain weight more slowly than formula fed babies. This was true with all of my boys whom I used to joke about being on some virtual taffy-pulling machine—they’d grow taller and taller and taller without any commensurate weight gain. At nineteen Claude is still a lean drink of water, weighing in at 160 pounds on his 6’2” frame.

Lyra dresses up and grabs Claude's attention

Lyra dresses up and grabs Claude’s attention

For several months, Lyra wore clothes sized for the average three-month-old. She grew, but so incrementally as to be stalled out at size three months. Most babies triple in weight their first year and darling outfits easily become hand-me-downs after only one or two wearings, size three months being a brief weigh station on a quick journey to size twelve months. Or so it had been with all four boys when they were babies. With Lyra, I grew downright sick of dressing her in the same limited collection of clothes. In May, I went out and bought her some new things sized 3-6 months—they fit but with room for growth. After all, she is my only girl and part of the fun is the pretty clothes. Now, at ten months old and after three months of taking Synthroid, I can finally dress Lyra in the size six months clothes I’ve been longing for her to grow into.

She’s Strong(er)

The delays aren’t as noticeable the first year because babyhood milestones have broad acceptable quantifiers of acquisition. You’ll notice more delays in the second year of life.     ~A physical therapist from the county who evaluated Lyra at six weeks of age.

Lyra's favorite teething tool

Lyra’s favorite teething tool

It’s been a long time since someone has asked me if Lyra is a baby doll or a real baby (see“Lyra’s Latest: Wee Teeny Peanut”). Not only is she bigger, she’s more active and wiggles in my arms rather than inactively reposing like a dolly. Recently, I began carrying Lyra like a proper baby—on my left hip. Though she does not yet sit up on the floor without assistance, she does sit upright in my arms (and in her bouncy seat, and her Bumbo, and next to anyone who sits with her on the couch). She hangs on to my clothes and, when she can reach it, pulls a silver pendant I often wear into her mouth, biting the cool metal to soothe her toothless gums. She also grabs for our glasses—Jules and Leif are the only people in the house who don’t wear them. Hugo often lets her succeed and she thanks him by coating his spectacles with drool.

Lyra working with her physical therapist

Lyra working with her physical therapist

Crawling is a four-point system of knees and hands. In Lyra’s physical therapy, we’ve focused on breaking down the components of front and back. When she’s on her belly, we gently encourage her to put weight on her arms. We also take turns sitting cross-legged on the floor with Lyra in the center of our laps. As she leans over a thigh to play with toys set out for her, we bend her legs and make her knees bear weight. We’ve been doing this since April after she mastered rolling over.

At the home daycare both Leif and Lyra attend there are two baby boys just a few weeks older than our girl. At the beginning of the year, I observed these boys rising up on their arms, later finding their knees, rocking on all fours, and eventually crawling. They now stand, albeit briefly, on their own before kerfloping back down on their diaper-cushioned bottoms. Soon they will be walking. It’s hard not to compare. Impossible, really.

And so we were thrilled when, three weeks ago, Lyra began lifting herself up on her arms, both with her elbows bent and with them locked. We continue to cheer for her whenever we see her lift up, doing her baby workout. Come on, peanut, give me five push-ups, lift, lift, lift! Sooo big! Big girl! That’s right! Yay, Lyra, yay!!!

She Claps

At Lyra’s nine-month-old visit with her pediatrician, Dr. M asked me if Lyra was picking up pieces of cereal with her forefinger and thumb yet. “No, but she grabs them with her whole hand,” I told her. Not good enough. Lyra will be evaluated by an occupational therapist next week. Perhaps we are not objective on this count because she seems fine to us, regularly grabbing at things she wants, like my necklace or our glasses. When seated in her Bumbo, we have to clear an 18 inch circle around Lyra. This is because she will suddenly pivot in unpredictable directions and dart her hands to grab at whatever she sees—a glass bowl filled with apples, half full cups of hot coffee, sharp knives. Okay, no knives, but you get the point, if it’s there, Lyra’s liable to grab it. And really, that’s comforting on many levels. First of all, she’s seeing. She’s then processing the information and thinking (I imagine) gimme that! And, finally, she is successfully directing her hand to grab what she sees and wants.

Yay! Lyra!

Yay! Lyra!

Erupting from our house this past month are sounds like those from a stadium full of hometown fans watching their team win the championship. Lyra is given robust rounds of cheers when she lifts up on her arms. Her brother, Leif, has gotten many too as he has moved from diapers to underwear, even at night. Last week, Lyra decided to cheer too. If anyone says, “Yay!” Lyra lays open a knowing grin and with her fingers wide apart, she closely watches as her two hands and come together again and again. And we cheer again because it’s mighty cute.

She Poops. Pellets. Occasionally.

One of the many symptoms of hypothyroidism is constipation. And so I was quite hopeful that after Lyra had been on her medication for a few weeks, she would resume having soft and regular bowel movements. Things did seem to improve at first, and then they went back to the hard, black stools, produced every three to five days, which remind me of owl pellets found in the woods. But owls are carnivores while Lyra eats fruits, vegetables, oat cereal and fish when we have it; all of which she washes down with breastmilk. In other words, a diet that should keep things soft and regular.

I know Lyra’s cries better than I recall knowing those of my other babies. She grunts and squawks when she’s hungry but when she’s tired she whines and yells out. When she’s pooping, she hisses out a breathy scream of pain. I quickly move to open her diaper because her clay hard stools get wedged against her diaper. They can back up in her bottom if I don’t take her diaper off.

Recently a friend of ours recommended a homeopathic remedy. When chosen correctly, I’ve seen homeopathic remedies arrest illnesses with such remarkable speed it’s as though someone waved a magic wand. Which remedy to take is determined by what might otherwise seem like an odd assortment of questions. Seated next to me while I was nursing Lyra, my friend noticed Lyra’s head glistening with perspiration and asked, “Does she always sweat when she nurses?” She does. “Does she have trouble with constipation?” Oh, yeah. “Have her try a dose of calc carb, you can get it at the Mustard Seed.”

I bought the remedy a few days later. The information at the store said it helped cradle cap, the waxy debris that forms on the scalps of many babies. Lyra has that too. I gave her a dose two weeks ago. I gave her another one last week. The other night I was abruptly awakened by Lyra’s aspirant cries. “Turn on the light,” I told Max as I grabbed her from the crib next to my side of the bed. I peeled off Lyra’s jammies and cracked open her diaper. A ball of poo rolled forward in her open diaper, leaving no trail. Lyra sobbed as one does after a physical trial and I held her naked in my arms until she was calm.

I’m at a loss for what to try next. I’ve resisted stool softeners as they are not without side effects, but feel I may need to reconsider that decision if pooping does not become a less painful ordeal for Lyra. Whenever I am sure there is no other recourse, she has a couple of softer, less painful movements. And I again hesitate to interfere with I hope is a long, and nearly complete, process towards regulating.

She Sees

When I pick Lyra up at daycare, I immediately nurse her. She sits in my arms and looks into my eyes, her left eye crossed in slightly, but both seeing me. She reaches up for my hair as I talk to her. When she finishes nursing and is seated in my lap, she repeatedly tilts her head back to look up at me while I talk to Jenny, her daycare provider.

“There is nothing your daughter will not be able to do because of her vision,” the eye surgeon told me several months ago. Last month, he wanted to put Lyra under general anesthesia to conduct a full exam of her eyes. It still takes three of us in his office to change her contact lenses, so examining the interior of her eyes when she is awake is not really an option.

They cancelled the examination, which is treated like surgery, when her blood work came back. After seven weeks on Synthroid, Lyra went from having too much TSH to not enough. The endocrinologist cut her dosage in half and we will test her blood again in July. If she has reached “therapeutic levels” of TSH, her eye surgeon will examine her eyes in August. The postponment of  the initial exam under anesthesia was a blessing because the ophthalmologist has since decided that it is time to tighten Lyra’s eye muscles to correct her crossed eyes. Delaying the first proceedure means one less time Lyra has to undergo general anesthesia.

Long ago, in our first visit with her, Dr. M (whose daughter also has Ds) told us about our kids taking hits to the brain. “They have Ds, that’s a hit. If they develop anemia, that’s another hit. Then, if they have open heart surgery, they take another hit.” I asked her if their brains recover from the hit of open heart surgery. “No, the same is true with adults. There’s something about the reduction of pressure during surgery.” I don’t know if the brain takes a hit when undergoing general anesthesia, but it seems to me that it is something best avoided except when absolutely necessary.

As for her crossed eyes, it’ll be good to have them corrected and she’ll have better depth perception, if not overall vision, when they are tracking in tandem. I’ve often wondered which I eye I should look into when talking to someone with crossed eyes, as it’s impossible to keep my two tracking eyes on two different focal points. I don’t have that problem with Lyra and I cannot tell you why. As kitschy as it sounds, I think it’s because when I look at her, I see her with the love I have for her and my brain doesn’t have a chance to natter at me about which eye I should look at. I see my girl. Or my “sweetness” as Jenny calls her.

The Child I Most Needed to Mother           

When I was five months pregnant with Lyra, I went to see an astrologer. It was not the first time I had met with this woman, who lives three hours away in Yellow Springs, Ohio. In 1997, Hugo was a colicky baby who cried in my arms while the astrologer, whose name is Lynn, described the meaning of all the various planets in my birth chart. Saturn in this house, the moon in that house, this aspect rising,  another descending. Since that time, I have seen her every so often, sometimes after many years, for what is called a “progressive” or where things are now in my chart.

Without going into whether astrology is real or hockum, I recognize that belief systems have long intrigued me. So much so that my primary undergraduate degree is in religious studies. Personally, I don’t put much value in absolute truths, because they are absolutely subjective. I will say that each of my readings with Lynn have resonated in unanticipated ways.

“Your intuitive connection with this baby will be stronger than with any of your other children,” she told me as I sat full bellied in her consulting room. “As a result, this child will know when you are bullshitting and will tell you so. You will not be able to fool her, but she will read and know you with great empathy. Because of this bond, she will be a harder child to leave. Don’t be shocked if you find it hard to send her to daycare so you can go back to work fulltime.

I didn’t ask Lynn any questions about my baby, but she kept returning to her. Nor did I know that the baby I was carrying had Down syndrome, in fact, I’d been told otherwise. And yet Lynn’s description of the baby growing in my womb fit the description of a child with Ds in many ways.

“Because your moon is in Neptune, there is an interesting aspect to this baby. She will be deeply empathetic and so open that you should be cautious of who you let hold her. Do not pass her to someone she does not want to go to.”

After circling back time and again to talk about the baby during my hour long appointment with her, Lynn returned one more time as she ended our session:

“This is the child you most need to mother. Listen, I’m not saying she most needs you, but you most need her. There is more for you in this child, a deeper meaning in being her mother.” And then, almost as an afterthought, she threw out there, “Oh, and expect some sort of giftedness in this child, she’ll be musical or artistic.”

Signs Posted

When the boys were little, I posted quotes in places where they would have no choice but to read them. The best spot is next to the toilet. Often, I would take discarded watercolor paper the boys had painted with pastel colors at the Waldorf school. I would cut the paper into shapes, flowers or just round-edged rectangles, and then I would sit down and slowly copy a quote that had struck me, such as one from Marcus Aurelius:

When you arise in the morning, think of what a privilege it is to be alive: to breathe, to think, to enjoy, to love.

Or a passage from a book like The Arabian Nights:

A fool may be known by six things: anger, without cause; speech, without profit; change, without progress; inquiry, without object; putting trust in a stranger, and mistaking foes for friends.

Other times, I would just pin cards to the wall or cut out quotes from the newspaper and tape them up. Of them all, what the boys committed most deeply to memory, and for years have frequently cited, is a small line from a long list of famous things Ben Franklin is purported to have said: Beer is a sign that God loves us and wants us to be happy.

Over time, and particularly when moving to the new house, these scraps of sayings have disappeared. Of all the ones I penned on watercolor so many years ago, the one I think of most often was an abridged quote from the Indiana lawyer-poet, Max Ehrmann:

You are a child of the universe…And whether or not it is clear to you, no doubt the universe is unfolding as it should.



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Obstacles to Writing

House Full Up

Zen Monks Wash Their Own DishesWhoopsie Piggle is currently home to eight people, four dogs, three cats and a singular goldfish who resides in a red plastic sandbox, shaped like a crab, which became a mini-pond two years ago when the lid was left off during a summer storm. The acre and a half of yard and gardens are robustly blooming with both intended and unintended plant life. Daisies and dandelions, rhododendrons and thistles. Many of the birds that Jules lovingly feeds are thistle eaters and while he feeds them only sterile thistles, the seeds they bring in their bowels and evacuate all over our gardens are viable and innumerable.

Big Yard


The “wee-booms,” as Leif calls them, temporarily placed in front of the area we hope to spend the summer transforming into a magical corner of the yard.

Last fall, Superstorm Sandy took out two trees in our backyard. The trees took out five sections of our wrought iron fence. Rather than pay for tree removal, Max cleared the trees himself and the homeowner’s insurance covered the fence repair. Thanks to the storm, we now have a sunny corner  for Leif and Lyra to have a play area. That is, once we clear out the undergrowth, level the ground and landscape. Claude and Hugo worked on pulling out the rooty undergrowth the weekend before last. The next day a rash began spreading across Claude’s limbs and chest. Like my Grama Dorothy, Claude only needs to be upwind of poison ivy in order to break out with the signature streaks of itchy rash. After a medical visit and prednisone prescription, the Toxicodendron radicans still went systemic and Claude had to return to the doctor’s for a shot.


Medical Appointments

Big girl with her vintage Romper Room dolly

Big girl with her vintage Romper Room dolly

When I think of working fulltime, and I am still applying for positions, I wonder how we will manage all the family’s medical appointments. We had nine this week alone. The big boys had four separate appointments, I had two, and Lyra had PT, a well-baby check up and a contact lens change and eye exam with her ophthalmologist. Last week, the eye surgeon had planned on putting Lyra under general anesthesia in order to perform a complete evaluation of her eyes. The surgeon would have changed her contacts then, but Lyra’s lab work was not acceptable for anesthesia. When Lyra first went on Synthroid, her TSH levels were too high. After six weeks on 25 mcg of the medicine, her TSH levels were deemed too low. We sre now trying six weeks at half the previous dose of Synthroid before testing her levels again. Even though we haven’t fully figured out her ideal dosage, Lyra has begun growing more rapidly in the two months she has been taking Synthroid. Though still on the small side, she now feels less like a baby doll and more like a baby.

Teens & Tots

The boulder-sized spools of English ivy Claude and Hugo have eradicated from the front beds this past week

The boulder-sized spools of English ivy Claude and Hugo have eradicated from the front beds this past week

For six months, beginning when Jules turns thirteen later this month and until Claude’s twentieth birthday in January, we will have three teenagers in the house. Just because they are big doesn’t mean they don’t need time and attention. Claude came home in early May from the University of Michigan and while he did odd jobs as a catering waiter and babysitting, it has taken him a month to land full-time employment for the summer. We’ve learned that the ease of online applications has facilitated employers asking endless and often goofy questions. Each week as I try to write during the scant hours both tots are at childcare, Claude has strolled into my room with his beautiful laptop (the one I bought for his high school graduation because it was required by the UM School of Art & Design), sat next to me at my desk, and read off the questions he thought were obtuse, silly, or both:

If you are working on a project and customers keep coming up to you for help, you should a) tell them to see someone else for help b) ask a manager to assign someone else to the project c) help the customers and tell the manager to do the project herself.

There are 26 weeks in a year, true or false?

Amy and Bill have five lollipops. Amy only wants three. How many does Bill want?

IMG_1827On the tot front, Leif has graduated from diapers to underpants in the past month. That means we’ve all be spending time encouraging him to go potty and cheering him like he has hit a home run at Progressive Field when he does (especially #2). And when he has accidents (particularly #2), Leif has been shown the joys of rinsing one’s own underwear in the toilet.

Max the Invisible Attorney


At the Highland Square Farmers’ Market

Okay, so we can see him, but we rarely do these days. Law is a profession driven by, among other things, deadlines. He has a big one coming up and it’s hard to remember when he regularly slept past 4 a.m., left the office before six p.m. and didn’t work on the weekend. We do miss him because he’s fun to be with but also when he is home it helps tip the ratio of adults to children from being wildly askew.

And so we were delightfully surprised yesterday when Max pulled in the driveway at five o’clock. Together with the three younger children, Max and I strolled through our neighborhood farmers’ market, Leif keeping close to his dada.

Value Added Adult

220px-Liriope_muscari_flowersAt the beginning of May, our friend Nancy moved in with us. After living in Akron for decades, Nancy moved to California eight years ago. She’s returned because her family, including two granddaughters, is here. Rather than complicating our already hectic lives, we’ve soon come to wonder how we managed without her. When she isn’t looking for work or a home of her own, Nancy has taken on several projects in the garden. Just behind our house are two rows of sweet bay magnolias growing in  long beds of liriope muscari. For the first few weeks she was here, Nancy spent many of her mornings in those flowerbeds. She pulled her gardener’s belt, with its impressive collection of tools, from a box and strapped it on. She then trimmed last year’s dead leaves from the lily-like plants and weeded the grass, nutsedge and scourge of thistles from the beds.

IMG_1819Nancy also loves mowing the lawn and is able to create diamond patterns in the turf, so it looks like some professional sports field. Another adult, she willingly drives the kids places, goes to the grocery, feeds the dogs, holds the baby. Even when Max is home, having a third adult in the house is an advantage. But with him currently gone so much, it feels like a gift.

The only drawback, if it can even be called that, is how much I enjoy talking with Nancy and I find myself lingering in the kitchen when I should be up in my office writing. Then I think back to when the big boys were little and how starved I was for adult conversation. Talking into my writing time is the better “problem” to have. Hands down.

Finding Balance

IMG_1806Yesterday, I gave myself a day off. It’s the first full week of summer vacation for Hugo and Jules, the weather was mild and I gave in to the call of the garden. For four hours, Jules helped me as we planted sunflowers, weeded flowerbeds and the cracks between flagstones pavers. I fixed a planter that wasn’t draining and planted lantana in two others. Hugo attacked the English ivy in the front, cutting it off of a tree and pulling up the roots around the trunk. Nancy uncovered a drain in the back corner of the driveway, which had become so clogged with pine needles and debris that a small lake would form after each rainfall. Her two English labs, water dogs that they are, will miss frolicking in the muddy water as they have several times in the past couple of weeks.

Writing is easiest for me when I have the house to myself for several hours, beginning early in the morning. But now it’s summer and the big, old house is full of people, the park-like yard is full of happy dogs and (as a result) not-so happy cats. The gardens need tending and I, too, want to be one of the gardeners.

IMG_1792If I were dying, what in my life would still be important to me? I ask this question of myself regularly to separate what keeps me busy from what is truly important. The people, the conversations, the meals, the home and, yes, writing about it all. The endless bustle is exhausting but one day they will all be off and it will just be us, Max and me. As delicious as that sometimes sounds, I am sure I will look back on these days as the best of my life. For I already do.

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Perpetual Postscripts

The morning paper habit

The morning paper habit

I’ve been thinking lately of E.B. White, he of children’s fiction fame for Charlotte’s Web and Stuart Little, who many today may not know was also a fine essayist. A regular contributor to The New Yorker, I once heard in an interview with his stepson that White worked on his essays tirelessly, drafting and rewriting over and over, never quite happy with this section or that sentence. But then the postman would arrive and, if he was to meet his deadline, White would have to turn over his essay. He had to stop.

The past few days, as is so often the case after I’ve posted one of my own essays on Whoopsie Piggle, I find my brain still writing that which I’ve already posted. I was up at three in the morning after “Screen, Paper, Sound” posted to add a photo of us playing Euchre at the kitchen table. I’d meant to add it before posting, but somehow had forgotten. Easily fixed, that oversight.

The next day, I asked Claude if, when he was a kid, he ever played the video games “Halo” or “Grand Theft Auto” at friends’ houses. He told me he had and I asked where and he told me. At the time, the mother of that friend had sworn to me that the only games they had were auto racing games and the sports games on the Wii. Claude also played a lot of GTA this past year in his dorm at Michigan and sheepishly confessed that he enjoyed it. “That’s different,” I told him, “you’re an adult now and can choose what you do with yourself. Besides, your brain has developed, but it’s different for kids.”

Claude going after the ever-spreading English ivy

Claude going after the ever-spreading English ivy

Claude’s habits are set. He reads the paper with the rest of us and probably finishes more copies of The New Yorker than anyone else in the house. He’s started writing essays of his own and, in the weeks that he’s been home from college, has purposely scheduled time to do so. This isn’t for an assignment, this is on his own for his own satisfaction. He’s been working odd jobs, powering through a significant amount of tough yard work (Max has made Claude the second in command on his English ivy eradication program) and happily spends hours at a time taking care of Leif and Lyra so that I myself can write. If he plays video games with his roommates at college, meh, he’s a balanced guy, video games are not at risk of becoming more real to him than life.

And that’s it, isn’t it? The habits we choose, whether conciously or by some immediately unobservable pattern, that shape who we are and how we interact with others. And so, in this morning’s New York Times, Jonathan Safran Foer has an op-ed piece that speaks to our changing habits as technology changes and the concern for what we risk losing, if we aren’t mindful, of our humanness:

Most of the time, most people are not crying in public, but everyone is always in need of something that another person can give, be it undivided attention, a kind word or deep empathy. There is no better use of a life than to be attentive to such needs. There are as many ways to do this as there are kinds of loneliness, but all of them require attentiveness, all of them require the hard work of emotional computation and corporeal compassion. All of them require the human processing of the only animal who risks “getting it wrong” and whose dreams provide shelters and vaccines and words to crying strangers.

In otherwords, be present and be kind. Don’t allow your technology to cocoon you from the humanity to which we are all belong. And that’s why my children did not grow up with video games in the house and minimal “screen time” in general. But I, too, have to monitor my own time spent on that little phone with those seductive apps. Including the one for that lets me monitor the stats for Whoopsie Piggle. It’s remarkably addictive.

This technological format I write in, a blog, allows me to make changes ad infinitum to the original copy and also to follow up, like I am now, whenever I want. Does this improve or detract from the writing? E.B. White had to stop, he had to pass it over to the mail carrier. But I wonder, as the mail carrier drove away with the essay down the writer’s driveway in Maine, did White call his editor at The New Yorker and give him changes over the phone?

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Screen, Paper, Sound

Grama's favorite photo of herself

Grama’s favorite photo of herself

After I’d spent the summer with my grandparents in Arizona and had returned to my mother’s house in Ohio, my grandmother wrote in a letter to my father and stepmother:

                                             August 29, 1979

Holly is a beautiful young lady, but a little headstrong because she has been on her own so much while Judy worked. Judy has quit her job for now so she will get more supervision. Holly is very bright, but they don’t give her much intellectual stimulation so she doesn’t stretch her mind.

Ouch. Grama nailed it.

Network Reared

At home with my constant companion

At home with my constant companion

When I was a junior in high school and lived with my father, stepmother and two halfsisters, what I most enjoyed was the lack of something: a television. There were no home computers in 1980, but everybody I knew had at least one television. Prior to that year, when living with my mother, much of my childhood had been spent with a black and white “portable” television that sat across from me at the table. The small TV was memorable because its plastic case was upholstered in denim, like a pair of tight fitting jeans, complete with western stitching and the brand name on a leather rectangle. I’ve never seen another television like that, then or since. Even when searching online.

My mother worked in bars and left for work shortly after the school bus dropped me off at our house, which was one in a single row built on the edge of a farm field. Across the street was another farm field and in the flat land of western Ohio, the views from the front and back of the house stretched for miles, unimpeded by little other than corn and soybeans in the summer and snow in the winter. My stepfather sold farm machinery and traveled during the week. After I waved good-bye to my mother from the large picture window of a living room that contained no furniture, I settled myself in front of the kitchen TV with my dinner. Until the evening news came on, I watched a string of syndicated reruns including Hogan’s Heroes, Adam-12, and The Odd Couple. When the evening news aired, I got up from my seat, cleaned the kitchen, took a bath and by seven o’clock resettled in front of my friendly, denim-clad box for the game shows that preceded the evening’s prime time programming. Depending on the night and what was on the TV, I watched until eleven o’clock. If I didn’t like what was on any of the three stations, I read in bed until I fell asleep. By the time I’d finished the eighth grade, I’d read everything Stephen King had published. Alone in a house surrounded by the wide open dark, King’s novels were not good soporifics and I often read the bible afterwards.

The Rangeline Road house near Dayton, Ohio

The Rangeline Road house near Dayton, Ohio

Generally, my mother did not return until well after midnight, but on occasion, when the bar she worked at was slow, she’d get home early. Only once was I caught immersed in a program well past my official bedtime. Her rage, instantly there like her best friend, complete with flying spittle, bulging neck veins and her long fingers that reached for my hair as I ran from her (I kept hidden a box containing the fistfuls of hair she would toss to the ground after she’d ripped them, from time to time in a fit of anger, free from my scalp), was memorable enough that I never let it happen again. Thereafter, I kept the kitchen lights off and one ear attuned to the sound of the garage door opening. If I heard its mechanical rumble, I snapped off the TV and dashed to my bed before she entered the house, only to lie awake wondering if she’d touch the TV to see if it was warmer than it should be.

It was not from activity that I was such a skinny kid. Genetics mixed with a good bit of chronic anxiety did the trick.

Screen Free Family

Home in Michigan

Home in Michigan

When I went to stay with them in 1980, it was the first time I had seen my father, stepmother and half-sister, Becky, since 1970. I had never met my youngest sister, Kate, who was born in 1972. With these other parents of mine, everyone was home most nights and we generally had dinners together. My sisters and I complained about our dad’s miso soup, a mealtime frequent flyer that was always thick with cabbage, but adored my stepmom’s bread. She made several loaves at a time and we would devour the first loaf before it was cool enough to slice without tearing; thick squares were chopped from cold sticks of butter and arranged on the hot pieces of bread like the dots on dice, where they softened into salty-sweet globs.

Most weekends, we spent at least one evening together and after dinner played cards or board games. Sometimes, we played rounds of backgammon, lining up to take turns when someone lost. The rest of us would watch the game or, if not, sit in the small living room and talk or read books. All the while, music I’d never heard before played on the stereo—bands like Canned Heat or Little Feat.

Hot air popcorn poppers were popular then, but my dad still made his popcorn on the stove in a pan. Repeatedly, as the popcorn popped at peak mass and threatened to overflow like lava, Dad poured a river of popcorn into a large mixing bowl where we mixed it with melted butter and salt. Dense and greasy, it made hot air popcorn seem like an unsatisfying ghost of the real thing. Even the next morning, when the popcorn was cold and the cooking oil and butter had emulsified with the salt, we would chew on handfuls before breakfast.

It was that year that I heard National Public Radio for the first time. I learned to listen to the news, in part because I was older, but also because on NPR, the news was interestingly told. I have never stopped listening to NPR (and for the record, I’ve long been a dollar-a-day member of my local station, pausing my contribution only briefly during my divorce).

My Turn

In recent years, I’ve come to understand how much of the quotidian of my father and stepmother’s home life I have adopted in raising my own children. From little things like storing my kitchen dry goods in large glass jars to birthing all my children at home, many of my choices for my household have been strongly influenced by my time with my family in Northern Michigan.

And so it was easy to give up television when I began having children. Our viewing was soon limited to whatever we could get on video. That seemed somewhat radical back then, as did the bumper stickers that stated, “Kill Your Television!” Still, the house was not media-free, nor as someone who studied film in college, did I want it fully to be. However, without access to regular television, what is viewed can be controlled. Which isn’t to say, in hindsight, I don’t regret some of the things I let the boys watch. I particularly cringe when I remember owning “Pokémon” videos.

My children have never had video games, either hand-held or larger consoles like an X-box or a Wii. However, I knew my boys played them when they went to their friends’ homes. I was emphatic that I did not want them to play games that glorified violence, such as “Halo” or “Grand Theft Auto.” Whether or not they did – and if so, how much – I don’t know. But none of my children ever asked me to buy them gaming systems of any variety. I’m sure they didn’t bother because they knew I’d say no, but also they just weren’t interested enough. I suspect part of the reason they weren’t is that they had no exposure, at least at home, to television commercials promoting any number of consumer items marketed for kids.

Instead, I played games with my kids. At first, there were the pre-reader games that, for the adults, made watching paint dry seem like an exciting alternative. You know: Chutes and Ladders, Don’t Be the Dragon and, the worst of them in my opinion, Candyland. But by five or six years of age each of the boys graduated to the card game Uno, which we all enjoy to this day. After Uno, it wasn’t long before we branched out to popular board games: Trouble, Sorry, and Monopoly, which I had played as girl, as well as newer ones like Cadoo and Apples to Apples. When Max came along, I relearned Euchre, a game I had learned in high school, and we taught the boys. For at least three years, it has been the reigning favorite game in the house.

Our Media


We moved to Northeast Ohio when Claude was six, Hugo three and I was pregnant with Jules. Since then, I have maintained a daily subscription to the Plain Dealer. We start our mornings by calling out who gets to read the funnies. Most weekdays during the school year, Hugo gets up at 5:30 to do his homework and will start the coffee, feed and let out the dogs, and bring in the paper. Deservedly, he reads the funnies first. Jules and I tend to come down around the same time and I prefer to let him read the funnies before I do because otherwise he’ll stand behind me as I sit at the table and make comments in my ear about the strips he’s reading over my shoulder.

Meanwhile, the rest of the paper is spread across the kitchen table and inevitably other sections get read. Hugo likes to check the sports section to see how the Indians did if they had a game the day before. Claude reads the op-ed page and any attention grabbing headlines. On Thursdays, Jules foregoes the funnies in favor of the weekly birding column. I don’t remember when they all started reading sections of the paper beyond the funnies, it happened organically. And it happened because the paper was there and a television was not.


The longest subscription I have had in my life was Newsweek Magazine. Until a few years ago, one of the first sections of the magazine was a page of quotes and editorial cartoons from the previous week. Like the newspaper funnies, my boys turned immediately to the editorial cartoons when Newsweek arrived in the mail. As they became older, they’d start reading the quotable quotes of the week and then ask me, “Who’s Dick Cheney?” or “Who’s Donald Rumsfeld?” or whomever it was that had been quoted. I’d like to think their nascent understanding of politics began with the conversations about those quotes and the quoted.

Unknown-2The method by which the boys began reading the New Yorker (once Max and his subscription were in our lives) should be clear. I wonder how many children over the decades have been lured to the pages of that lofty publication by the one-panel cartoons liberally sprinkled throughout each issue?


Because the big boys seem to love learning about inventions and experiments, I picked up a subscription to Science News a couple of years ago. It’s not cheap and I thought about dropping it this year and said so in passing while processing a stack of magazines in the kitchen, really talking aloud to myself more than to anyone around me. I gathered from the ensuing uproar that the three big boys read each and every issue, cover to cover, and I promptly renewed our subscription.


Unknown-1I get This Old House, The Sun Magazine, and Creative Nonfiction (the latter I believe I will have in perpetuity without renewing ever again because I’ve submitted so many pieces of my writing to their contests with an added fee for subscription, none of which have won). Claude and Hugo get Esquire. Jules gets Audubon, Living Bird, The Nature Conservancy, Automobile and Cook’s Illustrated. And we all consider ourselves recipients of The Atlantic and The Smithsonian Magazine.

A Bit Much?

I have a friend who for years has supported herself with an amalgam of odd jobs, including house cleaning. Many years ago, she had a client who was a psychologist with a hoarder problem. The woman subscribed to The New York Times and had copies stacked all over her house that she had not finished reading. Not one or two weeks’ worth, but years and years of The New York Times. When my friend tried to help her client get rid of a few stacks of the older newspapers, her client had a fit—she was determined that she would read them all. One day. Well, I do know how she feels.

imagesSimilar but different, my own father could not part with any of his issues of The Rolling Stone Magazine. He had read them when they’d arrived, but he had them archived in stacks three feet deep in corners of the house. If ever anyone wanted to read a particular issue in crumbling newsprint, he had it. Somewhere.

True Confession

I have a stack of my own favorite magazines from over the years. They fill one magazine holder in the living room. If I want to add one, I require myself to eliminate another (and usually do). And, yes, it’s hard to put two months’ worth of The New Yorker that I haven’t had a chance to even look at into the recycling, but we regularly do. Max has taught me to stop reading the table of contents beforehand because there is always something worth reading and before you know it, I’ll be like the newspaper hoarding psychologist. “Besides,” says Max, “another one will be here in a week or less!”

Enjoy it while we can

Last summer, before he moved into the dorms at the University of Michigan, Claude asked if I’d get him his own subscription to Newsweek and The Atlantic. Or maybe Harper’s (because who doesn’t love those crazy lists?), which we used to get but the renewal didn’t happen, more by accident than intention. When he got settled at school, however, Claude quickly realized that he had very little down time and no longer thought he could keep up with Newsweek or anything else coming regularly. Instead, I put together a handful of interesting issues of Newsweek and an assortment of other publications from the aforementioned lists that had arrived after Claude gone off to college.Unknown

I learned of the demise of printed Newsweek in a Facebook post. From an English professor. Who is also a novelist. My subscription ended a month after the magazine went digital and I have yet to renew. Maybe I will or instead, I might switch to Time Magazine, even though I do not share their more conservative bias.

Less than six months after Newsweek stopped being delivered by our mail carrier, The Plain Dealer announced that it was reducing home delivery from seven to three days a week. Owned by Advance Publications, the reduction of The Plain Dealer home delivery potentially means a reduction of its staff and, therefore, coverage. This has been experienced at other Advance Publications’ papers when home delivery has been reduced, most notably at The Times-Picayune in New Orleans.

From fashion to technology, I’m often slow to adapt. I never cottoned to the wildly popular Ugg Boot/house slippers as fashionable footwear, a trend that continues, any more than I thought Crocs were anything but ugly (except maybe on small children for whom they are easy to get on and off with no adult help). Similarly, I did not believe electronic publication would take off at all, let alone so rapidly, for a variety of reasons—the resolution is not what it is with paper and ink, you can’t hold a computer the way you can a book, magazine or newspaper, and you can’t spread them all over the house and know that the children will find them and read them as much by accident as desire. Well, tablets and electronic books are taking care of some of those concerns. And like other things that aren’t as good as what becomes the dominant product (think Beta versus VHS, vinyl albums versus CDs versus MP3s, 35mm cameras versus digital cameras), the resolution of ink on paper appears to be worth sacrificing for the convenience of instant access. At least for a growing majority.

More Confessing

I’m guilty. I can forever skip television, video games and all sorts of electronic errata that suck out valuable time from the precious few years I will live. But where I’ve been sucked in is the damn smart phone. Most nights of my adult life, I’ve fallen asleep with a book in my hands. Or a magazine. Or a newspaper. Now, I fight the compulsion to check my email one last time and then, time-brain sucker par excellence, Facebook. With a large family, personal reading time is hard to come by. That I give the few quiet minutes I have at the end of the day to a string of pithy postings that I will likely not recall a week, or a day, later concerns me.

Still the Same

For now, the paper still covers the kitchen table each morning. Shortly after our friend, Nancy, moved in with us last month, she subscribed to The Akron Beacon Journal and the Sunday New York Times. Each morning, we continue to read articles aloud to each other in the kitchen as we drink our coffee in our pajamas before heading out into the world. I don’t know what we will do when in August The Plain Dealer begins delivering only three days a week. I suspect, as when Newsweek changed, nothing.

I love reconnecting with old friends on Facebook. I also have found various groups on Facebook, particularly those related to Down syndrome, to provide valuable support and information. Writing essays for a blog that has an attendant Facebook page has come easily to me and I enjoy the format. I’m not interested in a life without the Internet and I have mostly embraced the advances in technology and publishing online while simultaneously trying to balance these benefits with my concerns for privacy.

Earlier this week, I learned late one evening that a friend in another state had suddenly died. Before I went to sleep, I read his Facebook wall and saw, albeit in small measure, what he was thinking about in his final weeks of life. I looked at photos of him and his family and all that they did together the past few years. And I was grateful for Facebook.

Choose Wisely, Choose Wisdom

Two boys came from the exact same background and one went on to work in a gas station and the other became a brain surgeon. You know the difference? The brain surgeon’s mother was Jewish. She pushed him to do his best. All the time.

~The Orthodox Jewish psychologist who tested Claude for his dyslexia in 2002

I have spent my life working, as my grandmother wanted, to stretch my mind. I did not go to college fulltime until I was 21. When I graduated at 26, I had enough credits for two bachelor’s degrees. Still, at times I feel like an autodidact, perennially overcompensating for what I perceive are holes in my education or intellect by reading more, learning more, asking experts. Clearly this has influenced, as much as any one person, how I have chosen to raise my kids. They well may have other things to complain about in regards to the choices I have made, but pushing them to do their best academically, to go beyond what is assigned and find the satisfaction of learning something they didn’t even know they would find interesting, is something I’ll not apologize for. I’m not quite a “Tiger Mother,” I’m too lazy for that and truly do believe in down time for kids. I’d like to think I’m more of a “Jewish Mother” as described above.

IMG_1583The removal of television from our home nearly twenty years ago now seems like a quaint notion, like closing a window on a capsizing boat to keep the water out. We had no idea of the technology that was coming, but getting rid of the television was absolutely the right thing to do. Regardless that four of us now have iPhones, that Claude and Hugo both have laptops of their own, we still keep the screen time pretty low. Line up my kids and ask them how they would most like to spend an evening at home with the family and I’ll give you 8 to 1 odds that they’ll pick sitting around playing cards or board games. Every time.

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Changing Expectations: Lyra’s Latest

Lyra's feet, dirty from playing in the grass

Lyra’s feet, dirty from playing in the grass

“I recently read that all people with Down syndrome develop Alzheimer’s in their forties or fifties, is that true?” I asked the pediatric geneticist as she examined our two-day-old baby. A few months earlier, I had read a Newsweek cover story about the care of adult children with developmental disabilities. The sentence about Alzheimer’s had leapt out at me even though I had been told there was little reason to suspect the baby I was carrying had Down syndrome or any other medical concerns. When she was born, however, she had several Ds markers—upslanted eyes, a tongue that darted out of her mouth, and sandal toes (her big toes are far from her little toes, almost as though they were attached as an afterthought). Even before we went to the lab to have her blood drawn, we understood that the genetic testing would only to confirm what we already knew. We had known it in our hearts since I had commented, moments after her birth, that Lyra’s eyes looked “kinda Downsy.”

“You know,” said the geneticist, “it’s really hard to predict what you can expect, what with all the therapies they have developed, things have changed so much in the last twenty years for children with Down’s.” That sentence stuck in my head even while the first few weeks of Lyra’s life found us submerged by what having a child with Down syndrome can mean, including finding resources to help us learn what we could about our daughter’s condition and, of course, dealing with her cataracts and eye surgeries. All the while, the geneticist’s words whispered repeatedly in my mind, with all the therapies they have developed.

Entirely Different

The remarkable increase in life expectancy in recent decades was one of the first facts we learned about Down syndrome and it highlights the dramatic improvement in the research, care, and therefore, quality of life for a person born with Ds today. In 1985, shortly after Max and I graduated from high school, the life expectancy for a person born with Ds was just 25. Today it is 60 and that number is expected to continue increasing as modern medical research also continues to advance the understanding and amelioration of Ds. Not only are people with Ds living longer, they are living vastly different lives than they would have half a century ago. In fact, as the National Down Syndrome Congress has shown with their “More Alike Than Different” campaign, today most people with Ds can expect to lead rather, well, “typical” lives.

Why Are Things So Different?

Until the 1960s, most children born with Down syndrome were institutionalized. When I was growing up, it was rare to see someone with Ds. I never had a classmate with Ds nor do I recall any special classrooms for children with Ds in any of the schools I attended. And I am not aware of any families who had children with Ds, which doesn’t mean that they didn’t exist, but those that did were perhaps institutionalized and not discussed.

Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in1964, a study was conducted comparing infants with Ds who were institutionalized to a group that were home raised. The study continued until the children were eight years old and found that children with Ds who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.”

It was not until the 1970s that the two major U.S. organizations that advocate for people with Down syndrome, the National Down Syndrome Congress (1973) and the National Down Syndrome Society (1979), were created. Both organizations make clear that caregivers—parents, teachers, friends and extended family—should set the bar high for kids with Ds. Children with Ds most often meet and regularly exceed the goals set before them. The myths on what people with Ds are like and capable of have been falling like scales from our eyes and today there is every reason to expect a baby born with Ds to have a full and productive life, including mainstream schooling, college, independent living, careers, even marriage and (what surprised me the most) driving automobiles. All of which indicates that as a society, we were operating on grossly false assumptions for many decades, tragically so for children born with Ds prior to the 1970s.

Not So Pretty

In the mid-1980s, my father and stepmother worked in a group home for adults with developmental disabilities, including some with Down syndrome. Across the nation, long-standing institutions that had housed people with developmental and physical disabilities were closing and group homes were opening to meet the need to care for many of these people. My parents worked in a freshly constructed ranch-style home, built to house eight residents. In the center of the ADA accessible house was a kitchen and living room, and on both sides of these common areas were four bedrooms, one for each resident.

I was eighteen in the spring of 1984 when I took a Greyhound bus from Tucson, where I was living with my grandma, to Northern Michigan. I had not visited my family since leaving two summers earlier. When my father picked me up at the bus station in Traverse City, the hour long ride to the house was awkwardly filled with fits and starts of conversation. We had not yet talked about why, after living with him and his family my junior year of high school, I had decided to return to Ohio and live with my mother for my senior year. And we never did. Instead, we talked about my half-sisters and other people we both knew. Eventually my dad began telling me about the job working at the group home and we both relaxed. My dad felt like he had finally found his career calling and with his eyes cast on the road ahead of us, he effortlessly described his work, the words pouring like water from a full pitcher.

The day after I arrived, my dad took me to the group home to meet the people he worked with. Many of the residents were in wheelchairs and most were overweight. When my father talked with the residents, introducing me to each of them, I could not understand what they were saying. I tried to be friendly, but the truth was, I couldn’t wait to leave. I didn’t see people, I saw drool and adult diapers.

“How do you work with those people every day?” I asked my dad when he got home, “Isn’t it depressing?” Which was a fair question. Depression was like a card my dad carried to excuse himself for his significant inactions, especially as they related to those of us who, from time to time, would reasonably wish to lean on him. People like his wives and children. Then again, I ask myself, who among us has not risen to his or her better self with strangers while our seamier aspects are saved only for those who know us best?

“You know, Hol,” he told me, “if you got a job there, after a week you would no longer notice the disabilities of the residents. They’d just be the people you worked with, just like anywhere else.”

“But they aren’t like the people anywhere else,” I said.

“Actually, they are. You would soon know them as Jim or Bob,” he said naming a few of the residents at the group home. “You’d know what they like and how they’re doing, just like you would with anyone in any job. And really, Hol, you’d no longer see their disabilities, you’d just see them as the people they are.”

Let me stop and say that I am not upset with the younger me who, the first time I was introduced to severely disabled adults, recoiled. At the same time, my chest physically aches to think that anyone would feel similarly about my daughter when she is grown. My ignorance was ugly, but I did not remain ignorant.

As with many things, education builds awareness, exposure builds understanding.

Loving People

My father worked at the group home until he moved to Arizona in the early 1990s, where he also worked with adults with developmental disabilities. Over the years, I came to feel I knew some of the people he worked with because of the stories he shared. Many had spent their entire lives in institutions, which was at the root of some of their more difficult behaviors. For instance, both my parents told me they worked to get the group home residents to eat their meals slowly and not scarf their food without swallowing. In the institutions, residents were fed in large cafeterias with little oversight and many had learned to eat as fast as possible in order to prevent anyone from stealing their food. Back then, eating at a table in the group home was often a resident’s first experience in family style dining with no threat of bullying.

My dad became particularly close to one of his clients in Michigan. A quadriplegic, Jim found work typing out address labels (this was before computers were ubiquitous). My father jerry-rigged a helmet by affixing the writing end of a pencil above the center edge of the helmet’s brim. With the helmet strapped firmly under his chin, Jim’s head bobbed over an electric typewriter as he used the pencil’s eraser to type out names and addresses on sheets of labels. Jim used the money he earned typing labels to buy gifts for his girlfriend. She lived in a different group home and Jim saw her on weekdays at the adult day care facility they both went to. Like Jim, his girlfriend was in a wheelchair. But on more than one occasion, the two of them somehow managed to get their shoes and socks off and were found sitting away from any activity, their bare feet entangled.

One evening when I was living in Boston, my dad called me from Arizona. In 1995, before cell phones found their way into everyone’s pockets, long distance calls were expensive and, thus, infrequent. Claude was a year old and I’d long gotten over my squeamishness of body fluids. Beyond diapers, I’d thought nothing of holding my baby as he repeatedly vomited on me a few days before his first birthday. Comforting my child trumped the sour smell of puke. Sure, he was a baby, my baby even. But nothing could have made me love him any less than I did including, as I discovered a few years later, a learning disability.

“My friend Jim died,” said my dad when he called. It was the closest I’ve come to hearing my dad cry. Maybe he was crying. I didn’t ask.

“Who’s Jim?” I asked instead and he reminded me of the resident in the Michigan group home. Once he’d moved to Arizona, my dad came home only a couple of times for important events like weddings. When he did, he always went over to the group home where he’d worked to visit Jim. My dad did not learn about Jim’s death until weeks after his funeral, but even if he had learned immediately, he would not have been to leave work and travel so far on short notice. Sitting in my kitchen in Boston, I listened to my father as he talked about his friend at length, a telephonic memorial service of two.

Those Therapies They Have Developed

One of the common issues that nearly all children with Down syndrome face is hypotonia, or low muscle tone. It can cause them to have trouble eating, speaking, learning to sit up, crawl, walk and run. (For more on the challenges facing babies with Ds, consider clicking the link for this well-written post from the blog, “Noah’s Dad.”

As expected, Lyra does have hypotonia, but I believe it is only mild to moderate. She does not spring with wirey muscles like my boys did when they were infants and babies, but neither was Lyra ever a “limp noodle” as so many babies with Ds are described. When she was four months old, I began taking Lyra to both speech and physical therapy at an office recommended by our pediatrician, Dr. M.

Physical Therapy or Breaking It Down to Pull It Together

When my dyslexic sons, Claude and Jules, learned to read, we had to break down the cognitive understanding of sounds and symbols. With Jules, I had to spend months making up silly rhymes and alliterative phrases so that he could hear the similar sounds. Once letters and their sounds were memorized, all combinations had to be taught. And because the English language is comprised as much of exceptions as it is rules, countless “sight words,” or words that don’t follow the rules, had to be memorized too.

So it is teaching Lyra to move her body through space—something I took entirely for granted with my four previous children. The first thing Lyra’s physical therapist, Heather, showed me was to pull Lyra up into a seated position by her wrists. Lifting Lyra slowly, her neck muscles engage and get a work out. By the time she was five months old, she was not only holding her head on her own but she keeping it upright as we bounced her on an exercise ball. Yes, the exercise ball is a big part of her PT, which for now has the overarching goal of getting Lyra to sit up and crawl. Lyra gets a better abdominal and arm work out each day than I do (though my muffin top and bat wings tell me I need to correct that).

Lyra loves to jump!

Lyra loves to jump!

Little things feel like milestones. Things like Lyra jumping in her bouncy seat, her head held erect as she springs her body up and down, or rolling on the floor from her back to her tummy and over again onto her back, or purposefully reaching her hands and arms towards a toy she wants, or sitting upright in the middle of our laps where we can catch her when she lists. Lately, Lyra’s been bearing weight on her hands and arms when she is on her tummy, a sure sign that crawling is coming. We want Lyra to crawl, and crawl for a long time, not only so she can move herself to where she wants to go, but also because of the well-documented, kinesthetic brain development that crawling enhances.

Speech Therapy or Everything to Do with the Mouth, Including Eating

For two months, Lyra’s speech therapist helped us try to teach Lyra to take a bottle. When she was nearly six months old, we all gave up. This is the first of what I suspect will be a lifetime of wondering whether something about Lyra is simply her personality or her Down syndrome. With the bottle, I believe it is personality. She breast feeds like a champ, which requires more muscle strength than bottle feeding. However, the time spent with the speech therapist was not invaluable as we learned many mouth exercises that we continue to practice. These exercises, mostly mouth massage—both inside and out—have helped Lyra “organize” her mouth. As a result, her tongue thrusting has greatly reduced and she has had no trouble learning to eat solid foods from a spoon.

Later this month, we will revisit the speech therapist to evaluate Lyra’s speech. But at nine months old she has long blown raspberries, babbles what sounds like the cadences of a distance conversation and then, as if providing commentary on the speech of those around her, will say, “Blah, blah, blah.”  These are all very good signs for speech development.

My Head and My Heart

When I hold my baby girl, I do not see her Down syndrome, I see my daughter. We all adore her and love to make her laugh, but she is mostly like any other baby. Jules delights in walking his fingers up Lyra’s sides to her armpits to get her to belly laugh. Leif holds Lyra’s hand and jumps with her as she hops up and down in her bouncy seat. All too often when they are playing on the floor, Lyra manages to grab a fistful of Leif’s long hair and pull it with all her might, causing her brother to scream in pain. The big boys send Max and me on dates, willingly keeping both of their younger siblings, caring for them with a naturalness that belies experience.

But here is a true confession that makes me cringe: I am still a work in progress. I know in my head that when she is older I will see and love Lyra as I do now. Maybe she will be as accomplished and “mainstreamed” as the adults with Ds in the “More Alike Than Different” video. But maybe she won’t.

I recently saw a lovely child with Ds, who was perhaps nine-years-old, happily engaging other people, especially little children. But when she spoke, I could not understand her and in that moment, and I felt the scabs peel off of my heart to reveal how attached I am to speech. I had to take Lyra to a corner of the room and nurse her while I quietly wept. I looked down on her dainty round head and, wondering if she’d ever speak clearly, I felt smacked by what is not alike, but different, about my child with Down syndrome.

A few moments later, a young mother whose son is only weeks older than Lyra came and sat by me. She has a soft voice with a southern accent I cannot place, but which calmly drew me out of my sorrow. She told me her child could not keep food down because of reflux and he was chronically ill because, as they had recently discovered in a swallow study, he aspirates his liquids. A first time mom, this woman’s dedication to her child is both fierce and gentle. Knowing how overwhelmed I was with my firstborn, who had no physical challenges whatsoever, this woman’s tender acceptance of her child and his mighty challenges guided me back to my center and I stopped leaning into my fears of the unknowable future.

We are a very verbal and literary family and we all enjoy talking, reading and writing. Two of us have made careers out of it and Claude may well too. My head tells me that Lyra will communicate effectively because she already does. She is not shy and her desire to interact with other people will propel her abilities to speak and/or sign (just as my own extroverted nature helped me learn French when I was a student in France). As her life unfolds, my heart will catch up with my head and I will continue to see my daughter as the person she is, not the extra chromosome she has.

What gets me into trouble is forgetting to stay in the moment.

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The Spring of Chaos

After what felt like a winter without end, spring has finally arrived.

I typically expect November and early December to be the busiest time of the year. For the most part, I don’t think of the holidays as something to survive, but when they are over, January seems indulgently quiet. A lady farmer, who lives across the street from the Waldorf school, once told me that January is the one month she relaxes. With the crops harvested and slaughtering season completed, it is too early to sugar the maples or prepare next season’s crops. Sure, there are animals and machinery that need tending, but mostly life is as quiet as snow falling on a windless day.

Then spring hits and there is no rest for the weary, be they farmers or mothers and I don’t know why, but it surprises me every year. Last spring, we had an unusually warm March, and found ourselves in our gardens seemingly moments after ski season had ended at the local slopes. It was our first spring in the new house and we abruptly discovered that the yard and gardens had been cursorily tended for a couple of years.225px-The_Blob_poster Translation: an abundance of weeds of all varieties—milky, woody, low to the ground and high to the sky—appeared as if by magic after the first warm days that March. Pregnant with Lyra, I was not much help in the garden. I trimmed dead branches off of the hydrangeas but otherwise mostly pointed out the weeds to Max because bending over made my heartburn rise. At the end of our driveway, Earth N Wood landscaping company dropped mountains of mulch large enough to be seen on Google maps. Seriously. For the rest of the spring and summer, Max pulled weeds, moved plants, mulched beds and ripped up English ivy, which grows with the destructive rapidity of the title character of The Blob, the 1958 Sci-fi movie classic (extending the metaphor: Max=Steve McQueen).

Possessed by Possessions

The long summer turned into a warm autumn and I thought I’d never get Max back into the house. But as I mentioned in What We Keep, finally in December, we resumed tackling the ongoing project of merging the possessions of two households into one. For this reason, I was not entirely unhappy to see winter linger with hopes of extending our focus on building shelves, emptying boxes and taking things to Goodwill and Habitat for Humanity’s ReStore. Larger items, or things we haven’t decided whether to keep or part with, have been hauled to the back garage for re-evaluation in the summer when we work on de-cluttering the garage. I imagine some day our spare time will not be primarily pre-occupied with managing our possessions as it has been for the past two years. But I cannot predict when that day will arrive.  And I ask myself if a deadline is in order.

Before the weather turned warmer, however, our weekends no longer found us like ants busily working in a nest while the frigid winds blew outside. Since Claude came home for his spring break in March, all of us have been pulled back to life outside of our home. Annual spring benefits for our favorite non-profits started popping up like dandelions in the lawn and last week alone, three were on our calendar (we made it to just one). Track season began at the Waldorf school and, as all parents who’ve been there know, any sport that employs the word “meet” as opposed to “game” is a sport that will relieve you of an entire day every weekend of the season. Tax season took away at least two of our weekends. And through it all, Lyra has at least one appointment a week with her doctors or therapists or county caseworkers or the Down syndrome clinic. In order to manage our schedules, emails go unanswered, calls unreturned and spontaneous get-togethers can’t happen. I start each day by looking at the Google calendar. And when I forget to, as I did this past Monday, I unexpectedly found the Summit County DD case worker and physical therapist on my doorstep at nine in the morning. Thank heavens I was dressed.

Far from Perfect

For me at least, it’s been hard to find my balance these past two months. I think of a quote I recently saw: Make sure to meditate at least fifteen minutes a day unless you are busy. In which case, meditate an hour a day. I smiled when I read this knowing, however ironic, that it is true. During these hectic days, meditation is like a staff planted firmly in the earth, a pole that does not stop the chaos, but rather allows me to stand still and observe the chaos without getting swept away by it. I am reminded of the wizard Gandalf who powerfully pounds his staff on the ground with one swift movement as he forcefully tells the demonic balrog, “You shall not pass!” Gandalf does not appear to kill the balrog, but he does prevent it from consuming his friends, insuring that they continue on their journey.

In one of my earliest posts, I described the mom-blogs that intimidate me with stories and pictures of serene adults with sweet children in clean (handmade) clothes making butter with the milk from the goats they keep in their yards while their kitchens look as organized as Martha Stewart’s but more artsy, an aesthetic cross of Waldorf schools-Garnet Hill catalogs-Merchant Ivory films.

Those moms probably don’t forget to go to the monthly meetings of their Down syndrome support group. Certainly not two months in a row. Nor do they forget to patch their daughter’s lazy eye (I won’t say how many times) and I imagine they do an hour of physical therapy three times a day so that their child with Ds meets all the “typical” baby benchmarks, like sitting up at six months. Those moms don’t ask with panicky voices at 5:30 p.m., “What are we going to feed everyone for dinner?” because they have organic and delicious meal plans extending weeks in advance. And while their kids may occasionally pull outfits out of a basket of clean laundry waiting to be folded, I doubt they ever dig into the dirty laundry to seek the least muddy pair of pants to wear to school that day.

True Confession: I sometimes think about what my life would be like if I only had one child. Or two. Or three. Or four. I consider what I would be doing with my days if my only child were away at college. Or if I had just one at home and the other at school, and down the list I go. I don’t think of it often, nor do I dwell on it when I do. This in no way means I ever wish to be without any of my children in this life and pray that they all die after I do, because to lose any of them is something I do not ever want to imagine, let alone experience. No, when I think of life with fewer children it is in the way Robert Frost describes life in “The Road Not Taken.” Frost acknowledges that our choices form our lives and wonders how different choices would have forged a different life. Possibly, I wonder, even molding the person so differently as to make him or her someone else entirely. In the film Sliding Doors, Gwyneth Paltrow’s character has two different lives based upon whether she misses or catches her train to work one morning. What I do know is that last year, before I had Lyra and I was working at the Waldorf school, I was not writing with any regularity. For a number of reasons, she keeps me at home and I make it a priority to write every week as much as I can.

As Good As It Gets

Last night we sat on our veranda and looked down at Jules and his friend Liam. They had set up a tent on the lawn and were standing next to it looking at the stars with one of our telescopes. Still in his Old Carolina Barbeque uniform, Hugo was relaxing as Hugo often does—by playing the guitar. The babies were asleep when Claude, who the day before had returned to Ann Arbor to take his last final, pulled up in the Matrix. I called out to him as he walked into the backyard, surrounded by the boys and dogs, and told him to grab a beer and join us on the veranda. After he’d joined us, I asked Claude how he feels now that he’s completed first year of college. “I feel a lot less anxious about things and, you know what? I am really glad I’m at Michigan, it’s a great school.”

Jules and his serviceberry bush

Jules and his serviceberry bush

Our lives at Whoopsie Piggle, the name of our home as much as this blog, continues to shape us just as we shape it. Our budding naturalist, Jules, has been eager to transform our yard and gardens to attract a variety of birds using native plant species. Max is his willing cohort in this venture and last fall they found a beautiful serviceberry bush on sale at a local nursery and Jules contributed $30 of his own money towards its purchase. It is now blooming and we are all eager to replace more non-native species with serviceberry bushes, spicebushes and red buds. But it is primarily Jules and Max who plot out and execute their now mutual dream of having a sustainable garden filled with native species, mirroring their own relationship in which stepson and stepfather are no longer foreign to one another but belong to each other as families can.

I enjoy being able to help in the garden this year with Lyra often nearby on a blanket. Leif, who turned three in February, already loves the yard where his dad built him a big sandbox last year. We had been trying to decide where to put a swing set that a friend has offered to us for the price of taking it out of her yard when then Hurricane Sandy took out two trees in the backyard. Using his new chain saw, Max is clearing the way to make our park-like yard even more kid friendly. With Claude home and helping, it won’t be long before we have our own playground.

Abiding Chaos

With Claude home, the large house is more full, but not entirely. We keep one bedroom as our guest bedroom. The plan is that one day it will be Lyra’s bedroom. With lavender walls and white trim it is a cozy room that is filled with afternoon sunshine and has its own bathroom where mid-century black and mauve glass tiles line the lower half of the walls. One friend in particular regularly comes over for dinner and stays late knowing she can sleep over in the guest suite. Early on, she stayed with us for a few months when she was between apartments.

Today we are awaiting the return of our friend, Nancy Wolf. Several years ago, Nancy left Akron to move to California where she followed some of her dreams. Now she is returning because her grandchildren are here, one of whom was born last December. While she resettles in our little city, Nancy and her two Labrador Retrievers will be staying with us. Will it make things a little more chaotic? Perhaps. But Nancy has stayed with us many times over the years when she’s journeyed back to Ohio. My kids love her. Just as important, I think, is to shake up the status quo and expose my children to other adults with whom they have different conversations than they do with us and also different from the conversations they have with adults who don’t live with us. There are as many ways to live life as there are people living it. Many of my choices in life may not be those my children are interested in for themselves. I’d be surprised if they were.

Nancy reads Whoopsie Piggle and often makes comments. After she read “What We Keep” she quickly sent me an email politely asking if we could hold off on shedding any more furniture until she returned. Truly able to let go of possessions, Nancy got rid of almost everything she owned when she left California last month, just as she had when she moved out there seven years ago.

The past nine months have not been without struggle as we learn to manage a family of five children with an eighteen year spread. Now we are upping that ante for a time while our friend and her dogs stay with us. But when she leaves, she’ll clear out most of the furniture and extra housewares stored in our back garage.

If we’re lucky, that is.

It Could Be Worse

All of this reminds me of a joke. There was a woman who lived in a small house in a shtetl. The woman was happy with her life until her widowed mother-in-law moved in with her and her husband. The mother-in-law had endless notions on how the woman could keep the house cleaner, make the meals tastier, teach the children better, and so on. Frustrated, the woman went to her rabbi and told him how her mother-in-law was making her life miserable. “Go home and move the cow into the house,” he told her and she did.

A week later, the woman went back to the rabbi, more frustrated than ever. Her mother-in-law was still unabashed in her running commentaries and now the cow was making it impossible to get around the small house. “Go home and bring your chickens into the house,” he told her and she did.

A week later, she again returned to the rabbi, at her wits end. “Go home and bring the goose into the house,” he told her and she did.

Days later, she came tearfully to the rabbi, telling him she couldn’t take it any longer, life at her home made her despair and she didn’t know if she could face another day. “Go home and move all the animals out of your house,” he told her and she did.

When the rabbi stopped by the woman’s house the following week, he asked her how she was doing. “I have never been happier,” she told the rabbi, “ever since you had me move the animals out of the house, my life has been so easy!” The woman made no mention of her mother-in-law who was sitting in the corner audibly complaining about anything she could.

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Lyra’s Latest: Where’s the Poop?

Prescript: In July of 2013 we learned about Fruit-Eze. A jam-like product made entirely of fruit, it worked wonders on the constipation that routinely flared up even after Lyra began taking Synethroid. She has a tablespoon each and every morning. Available online, Fruit-Eze is nothing short of miraculous.

Warning: As the title indicates, or so I believe, expect baby poo descriptions in this piece. Squeamish Readers, please proceed with caution.

Constipation Fixation

Lyra loves the bread at Macaroni Grill

Lyra loves the bread at Macaroni Grill

“It could be her thyroid,” said Dr. M at Lyra’s six-month check up. “It’s standard of care for Down syndrome to check it now anyway.” I was at Lyra’s six-month check up and, just as I had at her five-month check up, I explained to Dr. M that iron supplements had constipated Lyra. What I hadn’t told Dr. M was that ten days after we started giving Lyra the multivitamins with iron, we had stopped. Dr. M very strongly recommended giving Lyra an iron supplement but Lyra’s cereal has just as much iron in it as the vitamins. Thus, I didn’t see any reason to continue dosing her with the vitamins when I just knew they had caused Lyra’s unrelenting constipation.

Here’s what I know about constipation: If you have it, the only people you might tell is your significant other or your doctor. Then again, you might not. But if it is your baby who is constipated, that little person’s bowel movements will consume your thinking, day after day, and you will talk about it to anyone who will listen. Nearly all else in your life becomes less important than your baby’s bowels. It isn’t even necessary to document when the baby pooped last. You know the date like you know your own birthday. And this is because a constipated baby is generally a very sad baby. The term “colicky” isn’t about temperment, but describes a baby who has irregular digestion and is pretty grumpy about it.

I learned all about this back in the 90s with my Hugo, whose birth was by far my most difficult. Weighing in at 10 pounds and with a chest circumference that was larger than that of his big head, we called him “Huge-o” for several months. He also got stuck on his way out of the womb. After I had delivered what seemed like his soccer ball-sized head, the midwives realized he had shoulder dystocia and while I puffed like a locomotive going up a steep hill, the midwives safely repositioned him. It took a while, but he came out just fine. A couple of days later, however, I developed a nasty uterine infection and was put on Augmentin, a big-gun antibiotic. It cured my infection but, through my breast milk, it also trashed Hugo’s digestive tract. He cried nearly every waking moment for the next five months. Born in late November, I drove him in the car on bumpy roads to soothe him. If he fell asleep, I pulled into parking lots, parked and, with the car running, worked on crossword puzzles. Three-year-old Claude, in the seat next to Baby Hugo, was under strict orders of silence if the baby fell asleep. Though more often than not, Claude also nodded off after a long drive to nowhere in an overly heated car.

Hugo cried because he hurt. He would go nine to twelve days without a bowel movement. I felt über-environmental—using cloth diapers was a breeze with Hugo; rarely was there any messy clean up. Just weeks of easy-to-wash, low-odor, pee-pee diapers. When he did go, however, Hugo blew like a volcano. Between the volume and the force with which he expelled it, I would often first spy Hugo’s poo at the nape of his neck, just above his collar. Everything would have to come off and at least twice, when strolling him on the tile floor of the Lane Avenue Mall in Columbus, I had to dash into Baby Gap to buy him clean clothes (you would think I kept an outfit on hand, but since it was so rarely needed, I would get lulled into lugging very little gear).

Hugo eventually normalized, but I recall those early days with an element of Post Traumatic Stress Disorder. It may sound like I’m joking, but I’m not. For months, Hugo’s shrieks of pain and subsequent nursing frequently punctuated what little sleep I got. During the days, I could not accomplish much of anything other than trying to calm him, which meant holding him around the clock or driving him on bumpy roads. I have heard that psychologists compare a lengthy episode of parenting a colicky baby with torture, and I believe it. With the pregnancies of every child after Hugo, I prayed for anything but another colicky baby.

Lyra, like all my other babies except Hugo, quickly and regularly produced the kind of lovely poos that babies who are exclusively fed breast milk produce. The color of Dijon mustard, they smelled yogurty, and she produced them two to three times a day. That is, until we gave her the vitamins that included iron. And then, snap, she just stopped going. After five days, I gave her a pediatric suppository and what came out was dark and tar-like. Damn iron I thought. After ten days on the vitamins, we stopped and figured that in a week her stools would once again be mustardy and regular. But that didn’t happen. We began working with her diet, first giving her prunes to eat, then, a few weeks later, switching her cereal from rice (which can be binding) to oatmeal. And we began giving her a daily dose of algal DHA because it is good for brain development. It is also oily and should help move things along. We regularly massage her belly and her day care provider gives her Reiki treatments. She has never been fed formula, which also can bind, but exclusively drinks breast milk.

All to no avail.

Instead, Lyra’s weekly bowel movements have become heart-breaking spectacles, which the whole family often attends. After several days without a stool, Lyra’s abdomen tightens like a rock slab as she fusses inconsolably. Rarely does Lyra pass the stool on her own now and she has become what I call “Our Little ATM.” I pop in a small glycerin suppository and in return, Lyra strains and pushes out black pellets. We hold her legs and massage her tummy and her brothers coo to her soothingly, while she wails with pain and sometimes, just before a hard pellet of poo erupts, droplets of blood seep through her anus. The only comfort for us is how quickly Lyra settles after everything’s passed. Then five days later, it starts all over again.

Dr. M Scores Again

The reason Dr. M insists Lyra take iron is because anemia, or iron deficiency, reduces the oxygen getting to the brain. And a brain getting less oxygen risks a drop in IQ and with Lyra’s Ds, it is imperative to avoid additional hits to her IQ.

At first blush, it may seem that I am anti-medical. I had all of my children at home. Until Lyra, I never participated in the American Academy of Pediatrics schedule for well-baby visits. I’m not interested in taking a healthy baby to see the doctor. And also, I don’t follow the AAP’s vaccination schedule, as I mentioned in “Finding a Pediatrician, or The Continuum of Jewish Women.”

But I am not anti-medical. In fact, I am deeply appreciative of modern medicine and all that it can do. Had Claude been born 50 years earlier, he likely would have died of dehydration by his first birthday, which was a common cause of childhood death prior to the 1950s when IVs became widely available. Claude had a vomiting virus and in less than 24 hours had shriveled up. The skin on his stomach stayed wrinkled like a raisin’s after a doctor pinched and released a one-inch section between her forefinger and thumb. Claude was rushed to the emergency room and given fluids intravenously.

Had I given birth to Hugo 75 years earlier, I might have died from my uterine infection, as antibiotics only became available in 1935. And certainly, had Lyra been born just a handful of decades ago, her cataracts would not have been surgically removed and she would have been blind.

But I find that the medical professions are often in the position, whether or not providers like it, of treating the symptoms of illness without effectively addressing the underlying causes. We observed an example of this when Lyra had her eye surgeries. Both times as we waited for Lyra to awaken in the post-op recovery room, most of the other patients were recovering from tonsillectomies. The cries of these children were as raw as the pain in their throats.

“I thought they didn’t do many tonsillectomies anymore,” I said to the nurse attending Lyra after her second surgery.

“Oh, no, they have been on the rise. It’s the bulk of what we see in here,” she said and when I asked why, she told me, “It’s sleep apnea. So many children are heavy now and they develop sleep apnea.

“So they take out their tonsils?” I asked.

“Yep,” she answered.

It shocks me that children should undergo surgery, which is hardly without risks, for something that is correctable with diet. But physicians have little to no ability to change what is likely an entire family’s eating habits in order to get one child to lose enough weight to resolve that child’s sleep apnea. So they quickly fix the symptom by surgically opening the airways with tonsillectomies.

That is not how I live. When my children or I have a health concern, I consider what might be the source of the issue and seek to resolve it. For example, Jules has had unremitting nasal drainage all this school year. I could just give him antihistamines, which I have now and again when he couldn’t sleep. But as the problem appeared systemic, I have worked with him to clear out sugar, wheat and dairy from his diet to see if that helps. Two weeks later, he stopped complaining of drainage.

And this is why we have not treated Lyra’s constipation with laxatives, which would only further decrease her body’s ability to properly process and eliminate her stools. Her constipation, as horrible as it is, is not her problem but rather the symptom of a bigger problem.


In the case of Lyra and her constipation, it seems the introduction of iron was simply an unrelated factor, even though the timing suggested otherwise. As it turns out, the blood tests confirmed that Lyra has developed hypothyroidism. Her actual thyroid levels were fine. But the thyroid gland is the lackey of the pituitary gland. Like a shift supervisor at a factory, the pituitary gland monitors the thyroid gland’s output and responds by secreting something called TSH. TSH tells the thyroid gland how hard to work. When it wants the thyroid gland to work harder, the pituitary gland sends out more TSH. In Lyra’s case, her pituitary gland was making, according to some charts, twice as much TSH as is normal in order to get her thyroid gland to produce the proper amount of thyroid.

We were referred to the Endocrinology Center at Akron Children’s Hospital where I asked, just to be sure, that they retest Lyra’s blood. They found the same results as Dr. M’s lab. We were seen by a nurse practitioner who, after having me describe Lyra’s symptoms, asked if anyone else in the family had suffered from constipation. I told her about Baby Hugo and she said, “Oh, I tell parents it’s not so much how often they go, but what the consistency is. If we have mashed potato stools, it’s okay, but the hard pellets are not.” Had I known that sixteen years ago!

On April sixth, we began giving Synthroid, a synthetic thyroid replacement drug, to Lyra. At first, we smashed a tiny pill between two spoons, mixed the resultant powder in a cup with a teaspoon or so of breast milk, drew it up in an oral syringe and gave it to her. On April seventh, our clever girl began blowing raspberries when she felt the plastic syringe touch her mouth. Between what she sputtered out of her mouth and the reality that some of the powder remained in both the cup and the syringe, we weren’t sure how much of her dose she was actually getting.

Lyra looking like a big girl next to her newborn buddy, Cora.

Lyra looking like a big girl next to her newborn buddy, Cora.

Beginning this week, I now slide the small pill down her throat with my finger and promptly nurse her. She gagged a little the first time, but hasn’t since. We know she has the full dose in her body and once she’s been on the Synthroid for six weeks, we will have her blood tested again. After that, we get to visit the Endocrinology Center every three months until Lyra is four or five years old. It is quite likely that Lyra will need to take some form of thyroid replacement her entire life. I am just glad we caught it so soon, since thyroid can affect so much, including many things that are already concerns for people with Down syndrome.

For now, we are looking for softer stools, however often they pass. And perhaps, too, our wee teeny peanut will get a little bigger.

Update, April 21, 2013:

“You want to smell something wonderful?” I asked Max this afternoon, before sticking Lyra’s behind in his face. He was working at his desk in his home office when I brought Lyra in from the minivan after returning from Jules’ track meet. As soon as I’d plucked her from her car seat, I’d smelled it: pungent, breastmilk poo.

Sure enough, when I opened Lyra’s diaper a few minutes after making Max sniff her derriere, I was greeted by the lovely site of an oh-so-typical poo. That is, typical for a baby who is exclusively breastfed–mustardy orange with a butyeric odor, kind of like movie theater popcorn–who isn’t suffering from hypothyroidism.

Fifteen days after she began taking thyroid replacement drugs, our girl has regulated. The days of rock hard pellets are behind us, or so I pray.

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On Writing About Family

Good Busy

Whoopsie Piggle has not had a new post in over two weeks and this has been for two good reasons. First of all, I have two separate freelance projects that have kept me very busy. In some measure, I credit Whoopsie Piggle for this. Or rather, in the process of writing Whoopsie Piggle, I publicly declared my desire to earn my income by writing. And I have a theory, not so unusual, that you can’t get what you want if you don’t clearly state what that is. I don’t mean general platitudes such as world peace, my children to be happy, to have a successful career, or whatever. The more declarative and precise the intention, the more likely it is to happen. Curiously, however, generalizations seem to manifest just fine in reverse. Tell yourself your life sucks and it’s a fair bet that not only does your life suck; it will continue to suck until you change your thinking.

I’ve been clear for the past six years on what I want in a partner and homelife. But it has taken me longer to clarify my career goals with the same specificity. This is, in part, because I have felt shame for wanting a creative career. Writing, to be a writer, sounds selfish if for no other reason than there are few obvious ways to make money as a writer. Journalism and teaching at colleges were practical considerations for writers in the recent past, but neither option is what it was even ten years ago. Journalism is a field scrambling to respond to an unexpected brush fire, otherwise known as the Internet, which has consumed all aspects of the publishing industry. I am qualified to teach at the college level, but so are multitudes of other writers and with so few jobs available, the unspoken requirements have risen. For the most part, a tenure-track job teaching writing requires not only an MFA but also a published book and preferably a PhD. Maybe someday I’ll have these credentials, but not this year.

So while I’m not yet earning a living wage by writing, what I am earning helps me with the choices I make for my children. Choices like college tuition for Claude, music lessons for Hugo, and private school and tutoring for Jules. When I was a twenty-something, living on a shoestring was not a problem because I was only responsible for myself. Now I am the mother of five children and raising them well is a priority that conditions everything I do. Which is probably why I kept returning to my family, specifically the children, as I thought of a new project in the months prior to launching Whoopsie Piggle. Possibly a book, I had thought. One about the journey the big boys and I have taken over the course of their lives and how we’ve all come to embrace this new dynamic, a new family in fact, with the addition of Max and then Leif and finally, Lyra.

I know several non-fiction writers who purposely avoid writing about their children. To keep their children’s lives sacrosanct from the public, they hang velvet curtains in their stories, blocking all but the fact that their kids exist and sometimes not even that information comes through. I have heard writers say their teenaged children would be mortified to discover themselves as a character in their parent’s work.

Not my kids. I write about how they have shaped me, and my life, as much as I have had any impact on them. I am mindful of what I write and keep as a primary point of reference that my children will one day have careers of their own. Rather than complaining about being creative fodder, for now the boys enjoy reading about themselves. Particularly Hugo. If I have come at all close to accurately capturing his personality, this should surprise nobody.

Who owns memories?

My last essay, “Shattering Patterns,” was about fathers and firstborns—me and my dad, Claude and his father, as well as Claude and me. For though I have long heard faint echoes in my life, writing is the one way I know to find form for the abstract, which was particularly true of that essay. Writing it helped give specificity, once again, to my observations and thoughts. As his mother, I cannot imagine not wanting a close relationship with Claude. On the other hand, I have long worked to overcome the feeling that it was my fault my father and mother were never available for parenting or that they, like Claude’s father, did not want a close relationship with their child. And while writing about Claude’s relationship to his father alongside writing about my own relationship to my father was illuminating for me, I was not so sure Claude would want such a piece published.

“You could have been more revealing,” Claude told me after he read “Shattering Patterns.” “No, really,” he continued when I questioned him. “I wouldn’t have minded if you added a link to my poetry, you know to show that even if I don’t think about my dad, there’s still stuff in there.” As he reformulates more patterns, I see Claude transcending both of his parents in all that he does. Which is as it should be.

What I didn’t expect, but probably should have, was for someone to be upset over a line about my experience. “I never saw your father let you inhale marijuana smoke!” said a clearly upset family member, and I believe this person completely. I explained, however, that I quite viscerally remember breathing in smoke from a paper bag. I also remember talking about it with friends at school when I was still quite young. This is not a flashback memory—it has always been there.

What outsiders may find more shocking is this: I am not troubled by the memory of being given marijuana smoke as a young child. I have not nor would I do the same to my children. Legal antihistamines, however, such as Benadryl, are commonly administered to young children. If all things were equal in terms of legality, I’d be similarly concerned with the use antihistamines as with marijuana. But for now, in most states, they are not legally comparable.

Should I have skipped adding the sentence about marijuana? Was I unnecessarily revealing, particularly when I don’t find the information that shocking? Perhaps. I think too, that 30 to 40 years later, many seem to forget how drug saturated the late sixties and all of the seventies were. While many of my friends’ parents were not smoking pot, several were. And I regularly meet people who recall similar hazy days of partying parents. What might sound shocking today wasn’t so unusual then. A few family friendly movies from that time, films like The Bad News Bears or Little Darlings, give testament to how much times have changed.

Veteran Road Warriors

Then: A photo of the boys (ages 13, 10 & 7) and me, taken by a stranger, in 2007.

Then: A photo of the boys (ages 13, 10 & 7) and me, taken by a stranger, in 2007.

I stated that there are two good reasons why Whoopsie Piggle has been back-burnered this past two weeks. Besides good work writing, we went on our first vacation in nearly two years. In four days, we packed in a trip like the boys and I used to regularly take: in a vehicle filled with food and audiotapes, we headed out for a National Park, this time Mammoth Caves in Kentucky.

“Hugo just can’t stop picking a fight with you, can he?” said Max the night before we left. It was true. Hugo had been in rare form for two days. As I cleaned the kitchen after dinner that evening, Hugo launched into me like a district attorney, pointedly telling me he remained disappointed by his sixteenth birthday, which was the day after Thanksgiving.

“I don’t ever want to spend my birthday in the car for eight hours again!” he said, referring to the fact that on the day he turned sixteen, we had driven home from Northern Michigan, where we’d spent Thanksgiving with the children’s grandparents. We also stopped at the Toledo Museum of Art and saw a marvelous Edouard Manet exhibit and took everyone to dinner at the restaurant of Hugo’s choosing. That weekend, I drove Hugo to Guitar Center and bought him a pricey recording device he had long lusted after. I had waited until after his birthday to buy it during the post-Thanksgiving sale, which Hugo had agreed to at the time.

“What are you talking about?” I asked him, “We came home on your birthday because you had to work the next day! None of us wanted to leave early, we did it for you.”

“Never mind,” he said in a way that indicated he wanted me to do anything but. Sure enough, half an hour later, he appeared in our bedroom as Max and I were going to bed. “I’m not mad about my birthday, I just didn’t want to spend it in the car!”

I again tried, but got nowhere with Hugo. Finally, Max said to him, “Okay, that’s over, Hugo. So what do you want us to do now?”

“Just promise we won’t travel on my birthday ever again,” he said. We promised and he left our room.

“He’s sleep deprived,” said Max as he turned out the light. He was right. Earlier that week, Hugo had gone to New York City for three days with a school group and after arriving back in Akron on a bus at 7:30 in the morning, he had to turn around and go to work both days before we left for Kentucky.

Our family today (minus collegiate Claude), also photographed by a stranger.

Our family today (minus collegiate Claude), also photographed by a stranger.

A day into our trip, Hugo was a different person. On our way down, we’d listened to The Old Man and the Sea, which was assigned spring break reading for his English class. Just for Hugo, we’d packed two dozen, hard-boiled eggs. In cold weather that threatened rain, Hugo delighted in making egg salad on the side of a concrete retaining wall at a rest stop. Because he has always loved them so, egg salad and deviled eggs were the first dishes Hugo learned to make himself. That night in the national park hotel, Hugo had a persistent cough and the only medicine I had brought that would help was Benadryl. I gave him one tablet and he fell asleep by 8:30 while listening to Max read to Jules. So did I. The next two days, as we toured Mammoth Caves and hiked on trails in the park, Hugo was no longer a disgruntled teen. He was as impressed with the enormous cave chambers as any of us and equally as effusive in saying so. Often while hugging us.

Fully Functional

I write about my family. In part, because the quotidian amazes me. A little baby that I carried all over Boston became a boy who couldn’t read until the third grade when he was diagnosed with, and began the long process of remediation for, severe dyslexia. He now writes poetry and papers that floor me. Another boy, one who is brilliant at anything he attempts from academics to sports to music, has also challenged me since before his birth as a ten-pounder who got stuck with shoulder dystocia on the way out of the womb. That boy has grown up in the past year and now works hard at everything he does. He also makes me laugh every day. And my peace-maker child, the one I most feared would suffer long term consequences from the divorce is now, at nearly thirteen years old, becoming appropriately mouthy. I cannot express how relieved I am that he is. Then came Leif and Lyra, whom I think are the luckiest little kids I know, precisely because they have three adoring big brothers. We are like our own little village of five raising the two youngest children of the family.

I regularly turn to Max and say, “Everyone’s in a good place. Look at the boys, look at the babies, look at us.” Sure, dysfunctional families are fascinating to read about and I have enough of dysfunction in my personal story to write volumes of the dreck. But dysfunctional backgrounds are not generational sentences.

Life is long. Life is short. And, yes, life is good. Especially when you show up for everything—the fun, the challenges and all the messy stuff.

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Shattering Patterns

Won’t Go Back to Boston

At the beginning of the month, the annual conference of AWP, or the Association of Writers & Writing Programs, happened in Boston. Last year was the first year in many that I did not attend and it felt like a reprieve. Not a reprieve from the conference, where more than 10,000 writing professionals gather to attend (or present at) sessions from those related to writing (“Please Complete Me, Please Don’t Make Me Gag: Love Stories for a Cynical Age” was a panel this year) to publishing and finding work (Also: “Landing the Tenure-Track Job without a Book: What to Expect in the Job Market”). Neither did I want a reprieve from talking with other writers, including old friends whom I look forward to seeing each year at AWP, nor a break from listening to authors read their work. All those things I love and look forward to each spring.

No, what I did not miss was preparing my family to function without me for a few days. Making sure there was adequate adult supervision, that everyone had rides to where they needed to be, that there was food, clean clothing and instructions. In the business world, a good manager can leave her place of business temporarily and things should run as well as if she were there. Often, being the mother of a larger family feels like being the CEO of a small company. But those in my charge are not all yet fully trained adults. And as such, cannot, nor should they, always proceed without direct supervision.

Beyond the conference itself, I had a fantasy of going to Boston because it also fell on the same week Claude was home from college for spring break. I could have taken him on an odd nostalgia trip—odd given that the places we would have visited were ones where, when we lived there, I was deeply conflicted and generally unhappy. When Claude was three months old, his perpetually unemployed father took a job in Boston even though we lived in Columbus, Ohio. At the time, I was pursuing a graduate degree in art history at Ohio State University. I had a plum assistantship in the editorial offices of a scientific journal and a large community of friends and colleagues. I had no interest in moving to Boston and was very upfront in saying so to my then-husband.

Claude & Me, summer 1994

Claude & Me, summer 1994

For several months, Claude and I lived alone in Columbus. I took my baby to work with me and friends watched him when I had classes. I paid for all of our Ohio expenses with my stipend and spent my free evenings and weekends in the company of friends, many of whom had small children too. Simply put, Claude and I were thriving. Which is why I wish I could reach back, take my 28-year-old self by the shoulders and say, “Don’t go to Boston! Giving up your life simply to keep the family together is not only horrible for you, it sends the wrong message to your child!”

But we make the choices with what we understand at the time and I understood that my parents had split up when I was a baby. More than fearing what leaving my husband would mean for my child or me, I was afraid of being like my parents. As with most fear, it was irrational. I was ten years older than my parents were when they became parents. And I had a college degree, two in fact, when Claude was born and was well on the way to achieving my third. I had a home, a career path, a community and I was clear about what I wanted. That is, until I gave it all up.

We joined his father in Boston, when Claude was nine months old. While there, Claude and I were more alone than we had been in Ohio. I had no friends or colleagues (because I had no job) in Boston, a city where, unless you can recite your Revolutionary War ancestors, it seems you are forever an outsider. We rarely saw his father, who had rented a shotgun apartment in Somerville. On the right were the doors to three small rooms; on the left was the bathroom and a door for the smallest room in the house, hardly bigger than a closet. I kept that door closed and rarely went in there because it eerily reeked of cigarette smoke, like some ghost from a Stephen King novel lived in there, puffing away when we weren’t looking.

Just before we moved from Ohio, Claude’s father inherited some furniture. Beautiful antiques though they were, many of which were family heirlooms, we did not need a dining room table and chairs for eight, nor a hutch that was so large it was impossible to assemble in our apartment. In our bedroom, the mattress laid frameless on the floor, snug against our dressers while in the next room, chairs were stacked upon tables and surrounded by boxes of bone china and crystal. Rather than a home, the apartment looked like a used furniture store, each room an assemblage of related items crammed together.

Bored and with nobody to talk to, I spent my evenings plotting our daily escapes. With Claude either on my back in the backpack or on my hip in the sling, we rode the subway to museums, libraries and parks. Some days, I packed us up in our old Toyota Celica hatchback and drove out of the city, once going all the way to Vermont and a third of the way up that state. I loved the old world beauty of Boston, which feels more European than American in some ways. But I was like a long-term tourist with nothing to attach myself to—no graduate program, no job, no friends and, realistically, no husband. All I had was Claude, an easy baby whom I loved like nobody else, but a baby nonetheless.

Six months after arriving in Boston, I returned to Ohio. At first, it was just to visit friends but once there, I decided we would not return to Boston except to collect our things. I told Claude’s father he could return with us to Ohio if he wanted and, frankly, was surprised when he did. That was 1995. I’ve gone to New England, specifically Vermont, almost every year since then, but have never returned to Boston. So why is it I would feel nostalgic to show Claude, who is now nineteen, something he has no memory of? To give him the mental images of the places I’ve told him about? He’d go if I asked him to and maybe even enjoy himself, but I don’t know that he’d gain anything of it other than to humor his middle-aged mom. Which makes me feel a bit pathetic.

(No) Going Back

Instead, we went to Ohio State University in Columbus, Ohio. After nearly a year at the School of Art & Design at the University of Michigan, Claude is not feeling challenged by his art courses and has wondered if the issue is his program or whether he’s in the wrong major. Unlike Michigan, Ohio State has two separate departments for art and design and I have an old friend who teaches in their Department of Design. On our visit to OSU, Claude spoke with my friend and another professor, as well as the chair of the department. He also met with the secretary of the Art Department and a few students. Unlike last year, when we visited the colleges he was considering, this time Claude led the conversations and asked pointed questions. I felt comfortable leaving Claude on his own and several times walked away to take care of Lyra, who was with us.

Hayes Hall, Ohio State University

Hayes Hall, Ohio State University

The Department of Design is in the building that housed the History of Art Department, my department, when I was a graduate student. I waddled those same halls pregnant with Claude and later carried him around just as he was carrying his baby sister. At 6’2,” Claude now towers over me. He thinks nothing of swinging Lyra into his arms with an ease that comes with experience. “People think I’m a college daddy,” he told me when we were walking across the oval. I talked to him like a solipsistic tour guide: That’s the Wexner Center, which was built shortly after I started going to school here and where I saw nearly all of Hitchcock’s films. Here’s the short cut to the Art Department from Hayes Hall, my boyfriend before your father was in this department and we went back and forth between these two buildings. Wow, the union looks great, it was all loopy ‘70s interiors when I was here. See that building? That’s Denney Hall where I worked for a year between undergrad and grad school. Claude politely listened though I’m sure he’d fail a quiz on anything I shared with him about my days at OSU.

“So what’d you think?” I asked him on the drive back to Akron.

“I want to stay at Michigan,” he said with a certainty that surprised me. “The programs are similar, the set up is kinda the same. But when I listened to the dean talk about all the work for a design degree and the projects and, well, you know what?” he asked looking at me from the passenger’s seat, “I realized I just don’t have the same passion for design that I do my academic classes.”

“Really?” I asked, trying to sound impartial. Inside my heart leapt, feeling I’d scored an A in parenting. Last year, a handful of art schools—SCAD, SAIC, CIA—pursued Claude. But I after watching how deeply engaged he was in his high school English and history classes, the only restriction I put on his application process was that he go to a full university for his undergraduate work. Still, there were times last spring when I wondered if my one edict was keeping Claude from opportunities he would not have again. No matter how hard I try to be the best parent I can, it sometimes feels like a crapshoot.

A Family Tradition: Reading the Beats at Nineteen

When Claude left for college last fall, I had in my mind a vignette where he would come home at Thanksgiving and share effusively the things he was learning in his classes. He would read his papers to us and tell us about the ideas of his professors and classmates. I had seen elements of this in his high school coursework, especially English, where Claude would get so excited by what he was learning, he would have to stand up and move around the kitchen while he talked.

Instead, he came home last fall frustrated and not a little deflated with his classes, which were all art courses. “Why can’t they just teach us the fundamentals before asking us to do something conceptual and creative? Why are we paying $50,000 a year for this crap? I’m not getting anything out of it!” (For the record, most of the bill is covered by grants and scholarships; Claude and I only pay a small fraction of that total.) He was sure of nothing—the school he was at, the program he was in or even being a student. “I should have taken a year off!” he told me repeatedly. He struggled with what felt like monumental decisions to him, but I saw him asking himself the right questions at the right time. Max and I told him to enroll in as many academic courses as he could spring semester. And that’s what he did. Along with English, this semester Claude is in a world political science course and a performance course with playwright Holly Hughes. And just one art class.

When he was home for winter break, I asked Claude the topic of the English course he had enrolled in. “I don’t know,” he said, “A couple of my friends really like the instructor so I just signed up for whatever he was teaching.” While a highly recommended instructor as the sole reason for registering for a course isn’t exactly typical, it’s not the worst way to pick classes. In late December, books by William S. Burroughs, Jack Kerouac and Allan Ginsberg began arriving from

“Are you taking a course on the Beats?” I asked him.

“I don’t know. Those are just the books we’re supposed to order for the class.”

My father introduced me to the Beats when I, too, was nineteen. He handed me two books, Kerouac’s On the Road and Minor Characters by Joyce Johnson.

“If you want to understand me,” my father said as he handed me On the Road, “read this and then read it again every ten years.” As an after thought, or so it seemed, he added, “This other book is by a girlfriend of Kerouac’s. You can read that too, it’s interesting. But only after you read On the Road.”

I don’t recall telling my father that I wanted to understand him or not understand him. At nineteen, I hadn’t given his life much thought. Looking back, it seems clear he was asking to be understood. I did read On the Road shortly after he gave it to me and when I was finished I remember thinking, well, that was different. I didn’t read it ten years later or ever again, but the poetry of certain passages has stayed with me …they were all children, and in the sunny cherry blossom morning of springtime in the Rockies rolling their hoops up the joyous alleys full of promise…

I also read Minor Characters, which I believe was the first memoir I had ever read and a good one, too. The famous Beats flow in and out of Johnson’s story, but it is her personal bildungsroman, which is set against and poignantly captures the 1950s’ counter culture in New York City, and the stories of her non-famous friends that make this a book I continue to recommend.

But did either help me understand my father? No. Perhaps if I’d gone ahead and read On the Road when I was 29 and 39 I would have found the significance it has for him. The truth is, I just wasn’t interested. I once told someone I went easy on my father because he never yelled at me or hit me, which I realize is a pretty low bar to set for a parent. When I was a teenager and getting reacquainted with my father after a ten-year absence, I found his intelligence often revealed itself through his humor even if, at times, it was colorfully inappropriate. However, after he left my stepmother and moved out west, my sister and I found our phone conversations with him tediously one-sided—long litanies in minute (and sometimes vulgar) detail of events that had happened with people we didn’t know. He was only forty-five when left Michigan, but after a couple of years in Arizona, he ruminated like an old man.

In truth, my father was no better a parent than my mother because, while not aggressive, he is emotionally weak. And his weakness led him to make poor choices, or sometimes do nothing, which was also a poor choice. In the late sixties, as a single father, he was a twenty-something hippy living on Chicago’s north side and thought nothing of blowing pot smoke into a paper bag and having me inhale it. When I was four, my mother had returned and gained custody of me. A few years later my father was a vegetarian biker (as in motorcycle) living in rural Northern Michigan and did nothing when my stepfather sought to adopt me, thereby severing any legal ties my father had to me. And when I was sixteen and living with my father for the first time in decade, he was an old-hippy-biker-stoner-stay-at-home-dad who blithely allowed the predatory attentions some of his friends gave me. I stayed less than a year.

On My Road

As a religious studies major, I had studied Buddhism. But it wasn’t until the summer of 1996 that my ex-husband and I began practicing Shambhala Buddhism. Like all major religions, Buddhism has a variety of “denominations,” and we could have become Zen Buddhists or Theraveda Buddhists. But a fellow religious studies student introduced us to Karmê Chöling Shambhala Meditation Center in Vermont. Almost every summer since that first visit, when Claude was two and I was pregnant with Hugo, the boys and I have gone to the nine-day family camp at Karmê Chöling. Each morning of camp, while the parents meditate in a Tibetan style shrine room, the children are enrolled in classes where a little religious instruction is combined with a lot of outdoor play on the mountainside grounds of Karmê Chöling.

Choygam Trungpa Rinpoche, a Tibetan spiritual leader who was exiled with the Dalai Lama in 1959, introduced Shambhala Buddhism to the United States. Like most, if not all, spiritual innovators—including, but not limited to, the Buddha, Jesus Christ, Martin Luther, Joseph Smith, Suzuki Roshi—the Rinpoche’s story is complicated, if not downright messy. The first few summers we went to family camp a few of middle-aged dads, often in their second marriages, came with their families. Many afternoons, while we sat on lake beaches watching our children frolic in the water and sand, these former students of the Rinpoche enjoyed telling me stories about their teacher. They were all very clear about the Rinpoche’s foibles, which are widely known and well documented. But they were equally clear that the Rinpoche was a spiritual master. If for no other reason, Choygam Trungpa Rinpoche’s life is impressive for this one: in a few short years, he established institutions and translated texts that effectively established Buddhism in the religious pantheon of North America.

My dad and me, December 2004

My dad and me, December 2004

It was at least five years after we began practicing Shambhala Buddhism that I recognized the connection it had with the Beats. Even though I’d given my dad a copy of The Dharma Bums by Kerouac a few years after he had given me On the Road. Even though I knew that Choygam Trungpa Rinpoche had founded the Naropa Institute in Boulder, Colorado where, for a time, Allen Ginsberg and William S. Burroughs had taught. It was like I had a mental blind spot that prevented me from connecting the two. It wasn’t until I heard a radio interview with a man who had been at the Naropa Institute with Ginsberg and he said something like, “the Rinpoche told Ginsberg he was too attached to his beard and needed to shave it off,” that I saw the obvious: I’m practicing the same religion as my dad’s Beats. Maybe it’s a silly coincidence, but it doesn’t feel like it.

Claude Explains the Significance

While home for spring break, Claude worked on a paper about Kerouac’s On the Road. He told me there were two dominant male stereotypes in the 1950s. The first was the abusive and sexually vital king who refuses to settle down and be domesticated by women, characterized by Dean Moriarty. The other is the gruff, but indulgent “good provider” who succumbs to the feminization of his life, marries, moves to the suburbs and probably has a few kids. “So, you know how Sal, who’s basically Kerouac, chooses to go off with his wife in the Cadillac at the end of the book? He’s choosing tradition! Everyone thinks that book is so radical, but it wasn’t!”

Thinking of these two stereotypes, either of which limits a man’s full humanity, the Rinpoche was not unlike the sexually vital king. He died of alcoholism at age 48. Kerouac seemingly succumbed to the good provider role and was living with his mother when he too died of alcoholism at age 47. Fortunately, my father, who is now 67, has not died of alcoholism. When I review his life, I see he tried to be both stereotypes and, perhaps for the best, was good at neither.

I write obliquely about Claude’s father, because he is only a small part of the background of our story. But that is not the case for Claude. Last spring, after being disappointed and frustrated with his father for years, Claude confronted him in our driveway and told him that he, the son, felt like the adult in their relationship. They went back and forth speaking loudly, but not shouting, for a several minutes. Standing nearby and watching closely was Jules, who was supposed to have dinner with their father. Finally, their father exasperatedly asked Claude what it was he wanted from him. “To just show up. I just want you to show up,” he told his father.

What would have happened if his father had realized that by confronting him, Claude was showing his father that he wanted to have a relationship with him? And what if his father had heard the very clear and simple instructions on what Claude needed in order to have that relationship, Just show up! We won’t ever know. Claude told me last fall that he never thinks about his father, that the only time his father enters his mind is on the rare occasions when he sees him. It’s hard not to feel like I fell into a familiar groove when I had children with the boys’ father, a man whose exterior is so very different from my own father’s but who has the same emotional fortitude.

I can’t change their father; heaven knows I tried. I try to raise emotionally connected sons, very consciously so. And in my relationship with Max, I hope they see an example of manhood that explodes the two stereotypes of Vital Sex King or Gruff Provider. It’s not a crapshoot, even if it sometimes feels that way.

Back to School

“You didn’t want him to leave,” said a friend when I told her that I had waited too long to buy Claude’s Megabus ticket back to Ann Arbor. It was the day before he was to return and there were no seats left on the bus. Luckily, the trip from Akron to Ann Arbor is just under three hours.

“We’ll both go,” said Max and even though there were plenty of reasons why one of us should have stayed home (taxes, laundry, several indoor projects that need completed before the weather changes and we are back to yard work), I am glad he insisted. We brought Lyra, but left Leif home with Hugo and Jules. On the way to Ann Arbor, Max and I talked with Claude about his plans. After a year of existential angst trying to decide where his place is and what he wants to do with his life, Claude seems confident about, well, everything.

He’s going to get a liberal arts degree, maybe in English, and if so, I would consider taking Claude to AWP next year (in Seattle) because he’d enjoy any number of panels and certainly hearing world renown authors speak and read. Then again he might major in history or political science. Whatever he majors in, he’ll now take the art courses he wants to take but was not allowed to as a major in the program. Courses on the fundamentals of drawing, painting and sculpting. “You are at one of the best institutions of higher learning in the world,” I told him on the way back to his dorm, “you may never have the chance again to explore the things that are available here. Take whatever courses you want. Go for five years if you have to.”

For Claude, this first child of mine who is now making very adult decisions, my role has changed. No longer do I give him direct supervision, but rather wait for him to come to me when he needs feedback. Important decisions are his to make.  After all the years I spent trying to raise him to be all he could or ever want to be, I now get to watch it all come together. I wouldn’t miss it for the world. Neither would Max. Why would anyone?

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Lyra’s Eyes: The Latest

Seeing Red

“We gotta go,” I mouthed to Hugo, who nodded at me while pounding out rhythm and blues on the school piano, playing back up for a couple of guitarists. It was an odd Valentine’s Day. Jules was in Florida and Max was having dinner with his 90-year-old godfather, whose younger brother had died earlier that week. That left just Hugo and me, along with the babies. Rather than cook, we went to the Waldorf school for a potluck and open mic. Leif, who had uncharacteristically clung to me since we’d arrived an hour earlier, softly chanted I want to go home for several minutes before I reluctantly pulled Hugo off the piano.

Once home, I changed Leif into his pajamas. His torso was warm, too warm. I tilted him back in my arms and felt his forehead. Hot. “You don’t feel good, do you?” I asked him and the eyes looking back at me were glassy.

The next day, Lyra, who turned six month’s old on Valentine’s Day, had her latest check up with Dr. M, her pediatrician. Just shy of twelve pounds, Lyra remains in the less than 4th percentile for typical children, but around the 40th percentile for children with Down syndrome. The biggest “problem” with her size is clothing. Those sized 0-3 months clothes are generally for children weighing 8-12 pounds. Some of her clothes this size, especially those with footies, are getting small, but clothes sized 3-6 months are voluminously large on her. The few things that fit well get washed often.

At Lyra’s appointment, I negotiated the supplementing of iron with Dr. M, which she strongly advocates because anemia can lower a child’s IQ (it has to do with oxygenation of the brain). Unfortunately, iron can also cause constipation, which happened with Lyra as soon as we gave it to her. In order to avoid a potential problem, I feel we have created a real one. Constipation is a commonly associated with Down syndrome and something Lyra did not have until we introduced iron to her system. I have taken her off of the vitamins and pointed out to Dr. M that the cereal we give her (Happy Bellies brand) also contains iron.

“Why don’t you try adding some extra fiber to her cereal to get her going again,” said Dr. M and she wrote down a brand name on the “Babies at Six Months” handout. She then said, “Before you go, do you want me to look in Leif’s ears and throat?” Leif was still hot. Some people are sweet when they don’t feel well (Claude and Jules) whereas others are crabby (Hugo, Leif and, to be frank, me). During our appointment, Leif had thrown himself on the ground several times, tried to run out of the room when the nurse came in, pushed the stool to the wall so he could reach the light switch. Thank heavens Dr. M blocks out extra time for visits with children with DS.

“His ears look fine, his nose is clear and I don’t see anything in his throat,” she told me after I wrestled him down for her. Other than a fever and an attitude, Leif was fine. That was Friday.

Two days later, we were at Akron Children’s Hospital’s Emergency Room. By Sunday evening, Leif’s head had become a ramped up mucus factory that poured its products not only from his nose, but also from both his bloodshot eyes. His eyes were slits in his puffy face and he looked like he’d been stung by a swarm of bees. When we put him to bed, he had slept briefly before waking up, screaming in pain. But most concerning, and why we ultimately made the call to go to the ER, was he had refused to eat or drink for much of the day and his lips were cracked and bloodied from dehydration.

Leif was diagnosed with rapid onset, bilateral, acute conjunctivitis and bilateral, acute otitis media or in lay terms: a bad case of pink eye in both eyes and equally bad ear infections in both ears. They put him on Augmentin and because he’s never been on antibiotics before (and Augmentin is really strong), Leif’s eyes cleared up within 24 hours.

What’s This Got to Do with Lyra?

I wear contacts, I’ve had pink eye. You can’t wear contacts when you have pink eye. For me, that’s no biggie, I just wear glasses for a while. But if Lyra gets pink eye and cannot wear her contacts, she effectively cannot see. Recently, my own eye doctor, who also fits contacts on children who have had lensectomies, showed me what Lyra can see without her lenses. In an open container the size of a shirt box, the doctor keeps glass lenses lined upright in several rows, like poker chips. He handed me one of these diagnostic monocles by the tab in its wire frame and told me look through it with one eye closed. It was like looking through glass block. I could see light and color about as well as before, but shape and distance were impossible to comprehend. Were that my vision, I wouldn’t be able to walk safely down an open hallway.

When Lyra is older, she could wear glasses if she needed to. For her condition, however, it would require lenses that are extremely thick and made of glass, not the lightweight polycarbonate most eyeglass lenses are made of today. Right now, she’s too little for the glasses she’d need and taking a break from her contacts would potentially affect her brain’s vision development. In order to literally grow the part of the brain that processes vision, the brain needs the eyes to see, and see well. As I described in the post “I See You and You See Me,” this is why Lyra had her lensectomies at such a young age (six and seven weeks old).

Lyra’s Eyes

Lyra’s surgeries were dramatic, so it’s no wonder people often ask for updates on her eyes. The good news is that there is not much to report. Her eyes healed from surgery without any complications. She wears extended wear contacts that are aphakic. Aphakia simply means an eye without a (natural) lens. Eyes have lenses that, when working perfectly in pairs, provide 20/20 vision. Thus, aphakic contact lenses (or glasses) are not corrective lenses, but rather replace the surgically removed lenses. Many people, particularly as they get older, don’t have perfect lenses and need either glasses or contact lenses to correct their vision. Less common, and not universally recommended, is refractive surgery in which a corrective lens is surgically implanted over the natural lens to correct nearsightedness.

Lyra’s aphakic contacts do not look like my contacts. It is easy to see them in her eyes—the edges often look like a piece of Saran Wrap that isn’t fully adhering to her eyeball. Also, her pupils are clearly magnified, which makes them look huge, like manga pupils. I asked Lyra’s surgeon about the way her contacts look a week after her second surgery. Something I love about her surgeon is that he clearly gets geeked up when I ask him to explain how what he does works.

“So you wear contacts, right?” he asked and I nodded. “Well, your prescription is probably somewhere between three and six.”

“It’s about a four,” I said.

“Lyra’s is a 20. And that’s why they are shaped this way,” he said as he showed me the lens he was about to place in Lyra’s left eye. On the tip of the surgeon’s forefinger the contact rested as it would in her eye. He held it up so I could see it in profile. My contact lenses when viewed from the side look like the arc of the sun just before it sets on the horizon. Lyra’s look like a UFO because the center of the lens pops up, like the control room where the aliens sit when they fly their saucer ships. That’s where all the magnification is and why her pupils look so big.


The pupil on Lyra’s right eye is not round but elongated at the top, looking a little like a cat’s eye. A small portion of her iris, just above her pupil, was unintentionally removed in her lensectomy. When I pointed it out to the doctor, he said it happens and her blue eyes made it more noticeable. He didn’t seem concerned, but I was and wanted to know if it would affect her vision.

“No, not at all,” he said. “She’ll just have this one unusual looking eye. You know, the other night I was watching the news on TV and I saw a reporter who had the same thing. Years ago, that reporter would have tried to hide her elongated pupil with a cosmetic contact, but we’ve come a long way. Your daughter will be fine both physically and socially.”

What Sucks

Early on, the surgeon told us he’d keep Lyra in contacts as long as she’d tolerate them, forever even. I thought by “tolerate” he meant something medical, but he didn’t. It became clear to me what he did mean when I spoke with another mom in the waiting room just before Lyra’s contacts were cleaned for the first time. This woman’s daughter, who does not have Ds, was born with a cataract in one eye.

“After my daughter’s surgery,” she told me, “she wore a contact, but I couldn’t get the thing in or out, you know? And it popped out all the time! I mean she would just scream and I couldn’t hold her still, so they gave her the glasses, but she kept pulling them off. Finally they agreed to do the surgery. But now I don’t think she’s seeing in that eye and that’s why we came in.” A pretty child of about three, she wanted to see my baby. Seated with Lyra in my lap, I looked into the girl’s big, brown eyes when she came over to us. Her left eye looked blind.

“That’s because her mother has a hard time getting her to wear a patch on her good eye,” said the surgeon. In the exam room, I told him how upset, no, completely freaked out I was at the idea that after the surgeries our Lyra could still be blind. “Things are ironically easier for your daughter because she had bi-lateral cataracts. She doesn’t have a dominant eye.” As for the difficulty that mom had changing her daughter’s contact lenses, the surgeon told me that because of Lyra’s Ds her eyelids were very different, making it harder to insert and remove the contact lenses. Therefore, he told me, they will be conducting the cleanings in his office for the foreseeable future.

Okay, that was a relief to hear. But then we went through what was to become a nightmarish monthly ritual:

1)    A nurse’s aide comes into the exam room and has me lie Lyra down on my lap with her bottom against my tummy and her head near my knees. After thoroughly washing her hands, she tries to hold Lyra’s eye open with one hand so that she can place a small suction cup (designed to adhere to contact lenses) on Lyra’s contact. As soon as the aide tries this, Lyra clamps her eyes shut and screams like she’s been cut with a scalpel.

A baby's eyes opened with optical specula. This is not Lyra, but it is how she looks when they are used to remove and insert her lenses.

A baby’s eyes opened with optical specula. This is not Lyra, but it is how she looks as she lies in my lap while I hold her down. It’s no wonder she fights.

2)    The aide leaves the room and comes back with a nurse. The nurse pulls an optical speculum out of a drawer and, after two or three attempts, manages to get it properly in Lyra’s eye. This is never a pretty site. With her eyelids forced open, the aide again tries to suction out the contact. It still doesn’t work, so she instead tries to use a long cotton swab to push the lens off of the center of Lyra’s eye. Once, this made the eye bleed. All the while, Lyra is screaming and sweating as I continue to hold her arms to her sides and the nurse firmly holds her head.

3)    After several attempts, the aide again leaves and brings back the surgical fellow, a woman from India, who attended both of Lyra’s surgeries. Using a different speculum, the surgical fellow quickly removes both contacts. As soon as the second lens is out, I pull Lyra up and hold her on my chest to calm her down.

4)    Putting the cleaned contacts back in is almost as difficult as getting them out and only achieved, again, by the surgical fellow.

“I won’t do it next time,” I told Max after the second time I had to be the thug who held Lyra down while they tortured her in the exact same fashion two months in a row. “Her appointment to clean her contacts next month is at 8 a.m. You can take her before you go to work.” When he took her at the end of January, I told Max before he left, “Insist they bring the surgical fellow in first, not last.”

“It wasn’t that bad,” said Max when he called me after the appointment. “The surgical fellow was in surgery, so they sent in the nurse’s aide and she got the first lens out on the second try.” Unbelievable. I certainly want this to be as easy and painless as possible for Lyra, but it seemed unfair that it had been such an ordeal when I had taken her. Perhaps the team had gotten their technique down. Perhaps Lyra has become better accustomed to having her eyes messed with. But I’m afraid she did worse with me because she felt my emotional distress at holding her down against her very strong will.

“Also,” said Max after returning from Lyra’s breezy appointment, “the doctor upped the strength of her lenses and we both agreed that her left eye was crossing in and so we have to start patching her right eye for one hour every day. Oh, and she doesn’t have to get her contacts changed for two months now.”

Lyra looking unusually happy during morning eye patch hour.

Lyra looking unusually happy during a morning eye patch hour.

I don’t know if it is the increased strength of her new lenses or the fact that we are now several months past her surgeries and her brain has had time to catch up to the visual input, but the way Lyra sees has changed recently. Maybe it’s the new lenses working together with the more developed brain. Whatever the underlying causes, it is as though Lyra has awakened. She quickly turns towards the direction of sudden sounds. She recognizes people and rewards them with full-faced smiles.

We find we do best  when we treat patching Lyra’s eye the same way we do exercise: Do it first thing in the morning or it probably won’t happen. And because of the little girl I met in the waiting room at the surgeon’s office, you can be sure we do. Lyra fusses most of the time while the patch is on and after about half an hour, she often shuts her left eye. She isn’t sleeping, but seems to be telling us, “If you don’t take this damn patch off of my good eye, I’m outta here.”

Keeping Her Eyes Clear

Pink eye is extremely contagious. And even though antibiotics might have rendered him non-contagious, the fact that Leif cannot keep his hands off of Lyra makes me anxious. Five days after Leif began taking Augmentin, I took Lyra to her surgeon’s office to make sure she didn’t have conjunctivitis. I had lost all objectivity and her eyes looked symptomatic to me. We saw a different surgeon in the practice and he told me Lyra’s eyes were clear, but gave me his cell phone number with instructions to call if anything changed.

That same afternoon, my eye doctor told me I had a mild case of bacterial conjunctivitis. Mild enough that he would not have prescribed antibiotics except that I live with Lyra. The next morning, the same doctor told Max that he had a pretty bad case of it. That’s three out of six of us currently living in the house. My hands snag our clothes when I fold laundry because they are so dry from how much I wash them these days.

I love winter. I love the snow and the deep freshness of cold air. I love being cozy in a warm house with a fire in the fireplace or pies baking in the oven. But I want this winter to end. I cannot remember a cold and flu season that has come close to affecting us as much as this one has, where all of us have been sick more than once. Leif is still not 100% himself and it’s been two weeks since he first came down with a fever.

The next day the mercury is over 50 degrees Fahrenheit, you can be sure the windows of our house will be wide open. Meanwhile, we wash everything we can and often. Linens, hands, surfaces, faces. Knock on wood, so far it’s working and Lyra remains clear eyed.


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This Is Whoopsie Piggle

“You know it feels like I’ve been in Florida for only three days, not a week. But when I think back to when Grandma met me at the airport, that seems like a long time ago,” Jules said to me on the phone.

Jules with Grandma Ann & Grandpa Clark

Jules with Grandma Ann & Grandpa Clark

“Well, you’ve packed in a ton into one week,” I told him and, thanks to the grandparents, he really had. On the Whoopsie Piggle Facebook page, the family photo shows Jules looking at the camera through binoculars. His Grandma Ann gave him those binoculars at Christmas because, like her, Jules is an avid birder. In our yard, Jules maintains multiple feeders, each designed to attract different species of birds. Last fall, Jules helped to pay for the purchase of a serviceberry bush after angling for one all summer. Do you know how many birds are attracted to the serviceberry bush? Was the rhetorical opener we heard repeatedly and just prior to a litany of species. Jules has worked his way through innumerable bird guidebooks, which he reads like gripping novels. He prefers the drawings of Roger Tory Peterson to those of James Audubon and can tell you the migratory, mating and dietary cycles of more species of birds than you might have known existed. And he does. Tell us, that is. Endlessly.

Ah, the great goodness of good grandparents.

At The Villages, where Max’s mother and her husband, Clark, winter each year, a population of “active seniors” eagerly awaited the arrival of this young birder. The residents delighted in showing Jules birds he had never before seen and were impressed by his knowledge, both wide and deep, of the avian class, among other things (last summer, Jules’ other grandfather nicknamed him “Encyclopedia”). After six days in Florida, Jules told me he had seen 83 species of birds, 80% for the first time. He saw them around The Villages, on a day trip to the Gulf Coast and also on a two-day trip to the Atlantic Coast and Merritt Island.

Grandma & Grandpa Christensen with George, ca. 1978. It seems to be the only photo I took of them.

Grandma & Grandpa Christensen with George, ca. 1978. It seems to be the only photo I took of them.

Thinking about it after I hung up the phone, it reminded me of my time with my grandparents who retired to Arizona in 1973. Like Jules, I had been a child from Ohio flown to a state that was exotically different. My grandparents also packed up and traveled the state with me, though they brought along a fifteen-foot Aristocrat trailer. Over the period of three summers, we traveled through Cochise County in the southeastern corner of the state all the way north to the Grand Canyon and Lake Powell. Like Jules, when visiting my grandparents, the dramatic landscape and its creatures transfixed me. I took many photos of mountains and lizards and saguaro cacti, but woefully few photos of my grandparents. I have none of the three of us together. The next time Jules called, I told him to get photos with his grandparents, even if he had to ask a waiter.

For Jules, a week alone with his grandparents is a week in which he does not have to be one of five children. He is the sole focus of two adults and their community who, by all accounts, are having as much fun with him as he is being there. At home, Jules is a mini-me. After nearly a decade of being the youngest child in the family, he transitioned easily into role of big brother. When I tell people that Jules makes my life easier, it is no exaggeration. All three of the older boys are wonderful with three-year-old Leif and baby Lyra, I could not imagine they’d be any more loving and helpful were they three older daughters. Jules, however, is uniquely able to play like a child with Leif because Jules still is a child. Yet, at twelve, he has a foot in adolescence. Which shows when he helps with Leif and Lyra; regularly doing things like getting them food and drink, changing their diapers, bathing and dressing them, putting them to bed and plucking them from their cribs when they wake up. He does so without prodding, often taking Lyra from my arms whether I need him to or not.

In my girlhood visits to Arizona, I too soaked up the attention of my grandparents and their friends. However, for practical purposes, I was an only child. I did not see my father between the ages of five and fifteen and my only siblings are the two daughters he had in his second marriage. One of the most positive components of my mother’s parenting was her neglect, which, thankfully, was also her default setting. Her attentions were rarely positive and commonly violent, so neglect was preferable. For many years, she left for work as a bar maid within an hour after I came home from school. My stepfather, who sold farm machinery in multi-state territories, was rarely home on weekdays. Most afternoons, I ate my dinner and did my homework in front of the kitchen TV, washed the dishes, watched more TV, took a bath and read in bed until I fell asleep.

In Arizona, my grandparents planned their days around me. Oh, sure, we still went to their events, such as botanical society meetings or church outings, but even when there wasn’t much for me to do but sit and wait, I didn’t mind because I felt included, just as Jules did in Florida. This hit home when Jules told me Grandma and Grandpa taught me a new card game, I don’t know what it’s called, but we’ve been playing at night. I remember sitting at a card table my grandparents’ living room playing a game that required four decks of cards. Their wirehaired terrier, George, would hang out under the table, ready for someone’s hand to drop and scratch his ears. Night after night, once the dinner dishes were washed, my grandparents had no other desire than to spend time playing cards with me. These little things, in no small measure, buffered me through the years with my mother.

Who Are These People?

My grandparents in Arizona were my father’s parents. Even though my mother aggressively forbade any communication with my father for over a decade, her parenting default setting made summers with his parents possible. For the price of a plane ticket, she was childfree for three months. And I had three months to sample childhood.

My boys don’t have a relationship with any of their biological grandparents. With my mother, it’s a generational mirror. My adult relationship with her has consisted of long gaps of estrangement punctuated by brief periods of reconciliation in which I would cautiously hope she had changed only to find out all to clearly that she had not. I came to the conclusion a few years ago that there is absolutely no healthy reason for me to ever communicate with my mother again. My boys, who have their own stories to tell from their few interactions with her, have no desire to see her either. This week on Slate, I read an article validating our choices

The boys never hear from their father’s father, a widower who lives in Mexico.

None of the grandparents in our family are blood relatives except for Max’s mom. And she is not related to the three older boys. At Thanksgiving, I posted about spending yet another warm holiday with the boys’ grandparents, i.e., my stepmother and her husband, who is not my father. After divorcing my father, Liane married Bob a couple of months after Claude was born. Together, they have been the primary grandparents of my boys’ lives and now are significant to Leif and Lyra, too.

I wasn’t thinking of what kind of father Max would be when I fell in love with him. But knowing him as I did, for we had been friends for years before we became a couple, I would not have been surprised to learn that he would be devoted to his children. That he is equally as devoted to my three sons defies typical expectation. In terms of Darwinian fitness, i.e., survival of one’s own packet of genetics as the species continues, a child from another man is competition for the resources of his own children. But Max is not a base animal. He’s not even a base human. He loves and tends to Claude, Hugo and Jules just as he does Leif and Lyra.

As the old Ronco ads used to say, But wait! There’s more! Max also brought my boys a set of grandparents who are so good at it, I suspect they’ve been preparing for it all life long. And not just for the fun stuff. Last summer, when Claude had to go to orientation at the University of Michigan, he took a bus from Charlevoix, Michigan, where he was living with Grandma Liane and Grandpa Bob while working for the city streets department, to Battle Creek, where Ann and Clark live nine months of the year. Max’s mom was out of town, visiting relatives in Colorado. So it was my partner’s mother’s husband, known around here as Grandpa Clark, who spent the evening with Claude and then drove him first thing the next morning to Ann Arbor.

This Is Whoopsie Piggle

We’ve piggled ourselves up a family and it is good. Sure, there are times when I wish Max and I had met and fallen in love in our late 20s, that we had been together through our 30s and not had to wait until our 40s to create this family. But the longer we are together and the more normalized this family becomes, the less I pine for the decade when we weren’t raising these kids together. The way the boys love Max is as open as the way he loves them. Claude calls Max to discuss assignments he’s working on and when he comes home, the two of them go out for dinner together at least once.

“Hey, I hear you’re my mom’s boyfriend,” said 11-year-old Hugo in September of 2008, “Can I have twenty bucks?” Max told him no, but was not offended, and we still laugh about it today. Soon thereafter, Hugo turned to Max for help with his homework, advice on how to handle social issues at school and just to talk. Before Max, I was unaware of the void in the boys’ lives, one I had not been able to fill. Yes, I could show them how to be adults, but they also wanted to be parented by a man.

A few months after we had informed the boys that we were dating, Max joined us at a school event. When we left, Jules decided to ride with Max. As Claude and I watched from my car, Jules first got in the back seat of Max’s car. Then he popped back out. With his arms and legs moving in all directions, Jules looked like a gangly scarecrow as he scrambled into the front seat. “Jules likes Max,” said Claude. “We all do. He’s…well, he’s just so humble.”

There are some who believe that before they are born, children choose their parents. I have a hard time reconciling that idea with the parents I have. I do not believe biology trumps love. Being related is not reason enough to have a relationship with someone who is cruel or neglectful. Whoopsie Piggle is about a group people who actively love each other—all the time, not just when it’s convenient. Or in the booty-shaking words of Sister Sledge, “We are family.”

Claude, Leif, Max, Lyra, Holly, Jules and Hugo. All piggled up for a photo.

Claude, Leif, Max, Lyra, Holly, Jules and Hugo. All piggled up for a photo.

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Love Stories, Sexuality and Secrets

“You know what movie we should get for Valentine’s this year?” Hugo recently asked. Many years ago, I began a tradition of buying a movie musical on DVD for the boys, many of them from Hollywood’s Golden Age, each year for Valentine’s Day. While I try to keep a low media household, I have always been a fan of family movie night. I suspect my original reason for buying musicals was to expose the boys to something family friendly other than Disney and, perhaps more importantly, enjoyable to me. I used the excuse that most musicals are love stories and, therefore, apropos for Valentine’s.

IMG_1363The first Valentine’s musical I gave them was Seven Brides for Seven Brothers, which to this is day one of our all time favorite movies. There are love scenes and fight scenes and plenty of lush singing by Howard Keel and the cast. Back then, films were cast with Hollywood unknowns, pulled from the theaters of New York, and the professional dancers in Seven Brides for Seven Brothers are delightfully athletic and graceful. (I wish Hollywood musicals today would do the same, particularly with professional singers, something I believe would have greatly improved last year’s Les Miserables).

Romantic Comedy Not Just for Chicks

This past weekend, Parade Magazine published a piece by syndicated columnist Connie Schultz on what women want for Valentine’s. Schultz describes a friend who wants to watch a chick flick with her husband so long as she can duct tape shut his mouth to prevent his running (and presumably condescending) commentary. TIMG_1365hat just won’t be a problem my boys’ partners will ever have. For example, when Claude was eleven and Hugo eight, they insisted upon watching, in one sitting, both disks of the Colin Firth and Jennifer Ehle version of Pride and Prejudice. Originally broadcast as a TV mini-series, the movie is over five hours long. And they didn’t just watch it with me—they devoured it. That same year, all three of my older boys watched the French film, Amelie, so many times I found them viewing it without the subtitles (if you take nothing else from this post, watch Amelie and you too will fall in love). I wonder if I can take credit for cultivating their love of romantic comedies or if they were born predisposed to love them?

On a winter’s day when school had been cancelled because of snow, I piled onto the couch with then fourteen-year-old Claude, eleven-year-old Hugo and seven-year-old Jules to watch When Harry Met Sally for the first time. The younger two would hop off of the couch and cover their ears and eyes when the scenes became mushy. We now watch that film every 6-12 months. Having seen it so often, I focus on the late Nora Ephron’s writing, which made art out of the Unknowninner lives of women. (Sure Woody Allen does the same for men, but he’s a guy and the both the outer and inner lives of men have long been considered art while the lives of women have been typically viewed as, well, mundane.) Also, I now find Meg Ryan’s acting amateurish compared to Billy Crystal’s. I cringe at the scene in which she is sobbing because her ex-boyfriend is getting married. I just don’t feel her pain or believe her tears. Yet that scrappy Billy Crystal, with a chest like a 12-year-old boy, is convincing, time and again, as the leading man. Every time we watch it, we root for that guy to get the girl.

Are They Gay?           

First of all, I have succeeded (as opposed to erred) on the side of being wide open. The boys might tell you too wide open. I’m like the dad Liam Neeson plays in another DVD we own, Love Actually. When his young son tells him he’s in love, Neeson’s character responds, “Well, who is the lucky girl…or boy?”

“I swear you want me to be gay!” Hugo regularly jokes with me when I’ve made another either/or comment.

“No, my dear, I don’t want you to be gay any more than I want you to be straight. I just want you to be happy in your own skin,” I tell him.

What I think is going on is that, in certain circles, it is easier today for men to enjoy any number of things that in the past would have been considered exclusively female. Typically, it is easier for a subordinate population to adopt characteristics of a dominant population but not the other way around. For example, in western culture women wearing pants (i.e., the clothes of men) became normalized in the mid-twentieth century, but men wearing dresses did not. Today, and again in certain circles, men can openly express interest in everything from fashion and art to personal care (read: fancy treatment of hair and skin) without worrying what others will think. I believe this is  because fewer people today, especially younger people, consider sexual orientation as something to judge any more than the color of one’s eyes or hair. We all benefit from this long overdue advance in attitudes and civil rights.

Years ago, when Claude was perhaps in kindergarten, I read The Courage to Raise Good Men by Olga Silverstein. She describes how boys in our culture have long been expected to deny their softer emotions only to wind up as adults who struggle in relationships precisely because they are emotionally disconnected. Rather than worrying about feminizing my sons, I have shared with them things I enjoy and also followed them when their passions developed in areas new to me, such as sports. I find sports dull and never understood the freakishly intense emotion it brings out in some fans. Who are those people? I used to think. Then I attended Claude’s first basketball game and discovered one of those freakishly intense people lives inside of me. Every time he played, I cheered for Claude and his teammates (and even the kids on the opposing teams) until I was hoarse.

First, Framework and Tools. Then, Step Aside.

Max remarks on the openness with which my boys discuss things with me that he would never have shared with his mother or his father. Yes, things like their bodies and sex. But also money and bills. Politics and religion. In my mother’s house, money was only discussed as something she never had enough of and I was forbidden from looking at the bills. Politics and religion were also expressed as an exclusive and obvious choice—those who didn’t believe what my mother believed were described as fools.

I have chosen to go the other direction. I talk with my children as people and, when appropriate, am transparent with them regarding adult matters. When they were each about thirteen, I sat down with Claude and later Hugo and showed them my bank accounts, pointing out the few deposits and the many expenses. We are a team with finances, working together to achieve both our mutual and individual goals. I’m confident all of them will successfully manage their own fiscal lives.

The boys know my politics. I have taken them to Democratic events all their lives, from hearing presidents speak to canvassing neighborhoods. When Bill Clinton was running for re-election, I was eight and half months pregnant with Hugo and carried two-year-old Claude on my shoulders at a rally on OSU’s campus. The staff moved us to the front of the crowd. I suspect we made for good optics. All my children have worked on elections and gone to the voting booth with me. On Claude’s eighteenth birthday, before I took him to lunch, we went to the Summit County Board of Elections so he could register to vote. I hope they remain Democrats; I’d be lying if I said otherwise. But more importantly, I want them to consciously consider the role of government in their lives and be active in the democratic process. Yes, even if they vote differently than I.

As for religion, recently Claude and Hugo both have expressed that they see the Buddhism they’ve been raised with more as an ideology than a religion. I do not disagree. The form of Buddhism we practice mirrors key aspects of twentieth century western philosophy, particularly that of existentialism. That said, can meditation be a pathway for a more open mind and heart? Yes, of course it can. Are Buddhist teachings religious? Yes, of course they are. Does it matter if my boys and I don’t believe everything we learn through our studies in Buddhism? No, for I hold suspect the unquestioning believer of any religion. I have given my children an awareness of their spiritual lives. What each of them, or anyone, believes is each soul’s purview and never mine to dictate.

Secrets and Lesser Parenting

When I have the time to reflect, I see the long view as a mother, including the diminishment of my importance in the lives of my boys, as they become men. But in heated moments, I’m not so mature.

One evening in late December, Max and I sat at the kitchen table talking with the boys as they cleared the dishes after dinner. Lyra was in my lap when Claude stopped and, standing next to me, began texting on his cell phone. Suddenly, he was off in another conversation, separate from the one occurring in the physical space his body occupied. For several minutes he giggled, typed, paused while reading, giggled and typed again.

“Who are you texting?” I asked him.

“A friend,” he answered without looking up from his phone.

“Well, yeah, but who is it?”

“Just a friend,” he said more emphatically, his eyes still locked onto the small screen of the iPhone I had given him at Thanksgiving.

Okay, I don’t know how other parents feel, but when my kids don’t answer me directly, I become something like a hardened detective. If I can’t get a straight answer, it must be because the child believes I won’t like the answer. But in this case it didn’t make sense because there isn’t anyone Claude shouldn’t text.

“What is your friend’s name?” I asked Claude more pointedly.

“You know,” he said with surprising intensity, “I’m an adult and I don’t have to tell you who I am texting if I don’t want to!”

At another time I might have been able to calmly say, “Well, let’s talk about that.” But at that particular moment, it stung. Perhaps it stung because I had just spent all my savings paying for Claude’s first semester of college when his fees included an Apple laptop and expensive software. Perhaps it stung because just a couple weeks earlier Claude had called me repeatedly and with no small amount of confusion as he tried to figure out how to proceed with a young woman who had been giving him mixed messages and now I was being yelled at for a pretty unintrusive question. But mostly I believe it stung because I felt displaced. I felt the first twinges of no longer being the most important woman in my child’s life. Even though I know this is a inevitable and good thing; they all need to launch out into their own lives.

“If you are such an adult then why is it you are on my phone plan and not one of your own?” I asked and behaving badly, as many a scorned woman will do, I followed with a string of similar questions. I even felt like returning his Christmas presents, though fortunately I had the sense not to say so. Taking the baby with me, I went upstairs and sulked on my bed as I nursed her to sleep.

Later, after talking with Max, Claude came up and stretched out on the foot of the parental bed, which feels like the boat for family emotions. It is on that bed that our teenagers often lie with us and tell us their dreams and their fears. They have asked us what to do and sometimes even what to think. That night, Claude told me he needed to figure his love life out on his own. I agreed. That is, afterall, the goal of all my parenting: for them to become successfully independent adults, with fully formed minds, spirits and bodies. That doesn’t mean letting them go is easy.

Who knows if what I have done has been good or a bunch of hogwash? And how much influence do parents have really? How much should they be allowed? I think of poet Philip Larkin’s dismal take on parenting (Larkin – This Be The Verse) and hope I have done my children no harm. Having a second set of younger siblings has made the boys nostalgic for their own childhoods even before they’ve fully left them. So either I’ve done okay, or we have a strong case of the Stockholm syndrome developing here at Whoopsie Piggle.

Chitty Chitty Bang Bang, that’s what you should get us for Valentine’s Day,” said Hugo. “I loved that movie so much when I was little and I know Leif will too.” 



The afternoon I posted this piece, Hugo read it when he came home from school because I’d told him he had been quoted. Sitting in front of a laptop he said outloud to his brother who was a whole state away, “Oh, my God, Claude, I can’t believe you said that, what were you thinking?” referring to Claude telling me that as an adult he did not have to reveal who it was he was texting. Then looking at me across the room after reading further Hugo said, “Yeah, no, Mama, there is no other time Claude could have said that and you’d have been cool.”

“Well, sure, maybe in the morning when I’m not so tired,” I said.

“You mean, Ms-Don’t-Talk-to-Me-Until-I’ve-Had-My-First-Cup-of-Coffee? No, I don’t think so,” Hugo said as he laughed.

Nobody knows anyone so well as children know their parents.

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Lyra’s Latest: Finding a Pediatrician or The Continuum of Jewish Women

Newborn Lyra

Newborn Lyra

The day after Lyra was born, I called my obstetrician, who had willingly provided prenatal care and medical back up for my home birth. And I explained that while otherwise healthy, Lyra appeared to have Down syndrome. Within minutes, I received a call from the pediatric practice she uses for her own children telling us to come in immediately. Lyra was seen before she was even 24 hours old. The doctor who examined our newborn daughter gave us the necessary referral to the Genetics Center at Akron Children’s Hospital where we went the following day to confirm that Lyra has Down syndrome.

True Confession: My children do not go to a pediatrician

Okay, so maybe it’s not such a biggie, as in confessional biggie, that my children go to the same family practice as I do. But let me add that I have never scheduled “well baby visits” for my children. My kids are, for the most part, fabulously healthy. I take them to the doctor, or in our case the nurse practitioner, when they are sick or need a physical for sports. How my children are growing compared to other American children was never something I was interested in enough to spend time in an office and pay good money to find out.

Frankly, the point of these so-called well baby visits is primarily to keep the American Academy of Pediatrics (AAP) vaccination schedule, which I do not follow. Vaccinations have been a controversial issue since before Claude was born nearly 20 years ago. Like many things (such as hospital vs. home birth, educational approaches, how the food we eat is grown or raised), I have questioned the status quo on vaccination, but I also avoid zealotry. Proponents and opponents of vaccination are both ardent in their opinions. I am not opposed to vaccines, yet neither do I follow the recommendations of the AAP. I wait until my children are a year old to begin vaccinating them (except for Hib); I don’t give them all the vaccinations that are recommended (most children are not at risk of contracting hepatitis, for example), and I do not have them administered all at once. I am not advocating my approach for other families, but rather this is the compromise I have come to for my family after much research and many conversations with a wide array of health care providers.

Max and I soon understood, however, that with Lyra we would have to adjust our approach. This included finding a pediatrician with whom we felt we could develop a relationship as we encounter health care concerns with our daughter that we’ve never had with our other children. The pediatric practice my obstetrician sent us to seemed appropriate for a number of reasons. First, since they are affiliated with Akron Children’s Hospital, it presumably would be easier to coordinate Lyra’s care and records with other ACH docs, such as her ophthalmologist. Second, one of the pediatricians in the practice has a nephew with Ds, something I had learned through the Upside of Downs support group. Finally, it seemed appropriate precisely because it is the practice to which my OB takes her own children, as she is the physician whom I have trusted through two “advanced maternal age” home births.

But then, after our first visit, I had to call this pediatric practice without the assistance of my OB. On three separate occasions when I called, the phone rang once and then I was put on hold without any human interaction. For up to 15 minutes, I listened to techno hold-music that was regularly interrupted by the recording of a woman’s voice that went something like this:

Letters to keep heat on in the home are only signed during the months the state accepts the letters and will only be signed if there is a medically compromised child in the home.

After hearing this condescending message up to 30 times per call to the office, I felt like it was my heat that was going to be turned off and that I really ought to argue with someone about it.

The last time I called that pediatric office was to ask for a prescription to have Lyra’s hearing tested. When a live human being finally answered, she told me I would need to leave a message on the nurses’ line and someone would call me back within 24 hours. I left the message but never, ever received a return call. No matter how qualified their physicians might be, a practice with a phone system that bars access is not a workable option.

The Continuum of Jewish Women

One of the beauties of middle age is some narrative arcs reveal themselves. And so it is that at nearly every significant, if not extremely stressful, juncture in my adult life, Jewish women have helped me out. I can’t say why that is, though I no longer believe it to be coincidental because it now seems predictable. Here are three examples from a much longer list:

1)    University. When I wrote my undergraduate thesis in religious studies at Ohio State University, my departmental advisor was a committed devotee of the then-rampant theory of Deconstruction. He felt I worked like an old-fashioned historian, one who looks for facts and truths. While I understood irreducible truths are hard, if not impossible, to find in human interactions and events, I was never able to discern how he wanted me to approach my project. I met with him regularly and left every time feeling frustrated and rather dumb. In the end I went with what I knew how to do (hypothesis, research, results), and my advisor was unwilling to approve my thesis. On my thesis committee was a history of art professor with whom I had taken four classes and who later became the dean of the graduate school at OSU. While strongly disagreeing with my advisor, she told him she would work with me to craft my thesis to his satisfaction. And she did, even though her own scholarly research and writing, along with teaching, made her one of the busiest professionals I have ever known. Ten weeks later, my thesis was unanimously approved, even though the substance of the work remained the same.

2)    Children. After several frustrating years of trying to understand why my oldest son, Claude, wasn’t learning in school, a triumvirate of Jewish women helped turn things around. An Orthodox psychologist first diagnosed his dyslexia and then she helped me to navigate his remediation. For several months, Claude worked every Sunday morning with an Orthodox occupational therapist at her home in an Orthodox neighborhood in Cleveland (during his appointments I went to the neighborhood bakery and bought seeded corn bread). For several years, I took Claude twice a week to the home of a tutor I found through the American Dyslexic Association, who, yes, is also Jewish. After Claude finished tutoring, Jules too was diagnosed with dyslexia and back we went. With little break in between, I’ve been going to this woman’s house for a decade. Without these three women, I don’t know how I would have facilitated my boys’ mastery of reading (mastery may sound like hyperbole, but Claude scored 34 in reading on his ACT, which is nearly perfect).

3)    Divorce. There is an aphorism in the legal profession that clients choose attorneys who have similar personalities to their own. Jerks pick jerks, efficient types pick efficient types, et cetera. I like this adage because my divorce attorney is a class act who worked with me for just shy of four long years (including post-decree enforcement). Highly regarded by her colleagues and the courts, she and her associates are hard negotiators who worked to end things quickly without sacrificing either what my boys and I needed or an ounce of their own professionalism. That the process took so long is due largely to the fact that the defendant went through a series of four attorneys and with each succession, we had to start all over again. Divorce sucks. A protracted divorce with someone driven by animosity is a nightmarish ordeal. I can’t imagine how I would have gotten through it with any other attorney.

Back to finding a pediatrician

Through the Upside of Downs organization I have met a number of families from Medina whose pediatrician has an eight-year-old daughter with Ds. People in Akron don’t often go to Medina, 15 miles west, for things like doctors, even though they commonly drive 40+ miles to physicians in Cleveland. I decided to meet Dr. M and after the first call, I knew we had found our practice. The person who promptly answered the phone also scheduled our appointment, asking me, “Dr. M loves patients with Down syndrome and she schedules longer visits with them, is that okay?” When Lyra and I went to that first appointment, Dr. M spent over an hour and a half with us. At the next appointment, only a couple of weeks later so we could monitor Lyra’s weight, Max came too. Again, Dr. M spent another hour and a half with us and she told Max, as she had previously with me, “I’m a New York Jew and I’m just gonna tell you what I think.” Well, of course she is.

And what does Dr. M think?

She thinks we can have a respectful dialogue about vaccines and she backs up her recommendations with data. Just as importantly, she doesn’t try to make me feel like a bad mother for not following the standard of care on this issue.

She thinks that the more intelligent the parents, the more likely a child with Ds will have a higher IQ, but the kids with Ds who have higher IQs also have greater rates of ADD. “I know what you’re gonna ask,” Dr. M said when I was going to ask what was the highest IQ we could expect, “but first you tell me the highest level of education you and her father have.” It was only after I answered that she told me the correlation between parental intelligence and that of children with Ds.

She believes in pushing early reading because it comes easily to many kids with Ds and not only does it give them another way to communicate, it makes them feel good about themselves. Note: Many kids with Ds read by age three. They are visual learners with strong short-term memories.

She believes in physical and speech therapies and wrote prescriptions for me on our second visit. Crawling strengthens the brains of all kids, making it particularly important for kids with Ds to learn. But kids with Ds often don’t crawl without intervention (they scoot or roll to get where they want to go). Speech therapy involves anything related to the mouth and we have not had much success in getting Lyra to take a bottle.

Basically, Dr. M believes in getting in there with all available resources and pushing these kids to be the best they can be. In so many ways, it is little different than what I learned to do with Claude and Jules to overcome their dyslexia. It doesn’t mean abandoning all else and focusing our entire lives on Lyra, but rather incorporating into our daily lives what will help her develop and succeed to her highest potential. For years, driving to school with Claude and Jules has been the time to practice sight words. Whenever I sit with Lyra in my lap, I move her around in ways that help strengthen her back and core muscles. Not the entire time, but a little here and a little there.

At our last visit, Dr. M went over the results of the echocardiogram Lyra had in late November. “So they think there’s a shadow here,” said Dr. M as she drew on the exam table paper a box divided into four sections and then told me to imagine it was a heart. Pointing to where the shadow was on Lyra’s echocardiogram, she said, “This is the patent foramen ovale and it is found in all fetuses because they are not using their lungs and, therefore, the heart circumvents the lungs in utero. After the baby is born, this hole closes up in the first weeks of life. Typically. But in 20% of adult autopsies on the general population, this hole is still there. So, we’ll check again in a few months. Other than finding nothing, this is the best result you could get on her echo.”

Yes, that’s how she talks and it comes out rapid-fire fast. I love it. Hit me with more than I already know and if I don’t understand, I’ll ask. If Lyra really does have a patent foramen ovale hole, it will likely close on its own. If it doesn’t, that doesn’t necessarily mean she’ll need it surgically closed. But if she should, it is not open-heart surgery, which is hard on a patient. Instead, foramen ovale holes are surgically closed by going through a vein in the artery.

“So let me get this straight,” said Dr. M at the end of our last visit, “her heart is good, her hearing is perfect, her growth is average. Other than the cataracts in her eyes, it looks like this kiddo has no other major health concerns, right?”

“Yep, none that I am aware of,” I said.

“You are really, really lucky, you know that?”

Lyra today. Her feet love each other and she is most happy without socks

Lyra today. Her feet love each other and she’s most happy when rubbing them together sock-free.

Yes, yes I do. We are very grateful that our daughter does not have any of the many serious medical conditions that often accompany those diagnosed with Down syndrome. Max and I frequently say so to each other. But we still have a child with a genetic disorder and we are lucky because of the enormous support we have in our community as we meet the needs of our youngest child. Not only the professionals, like Dr. M., not only the other families we’ve met through the Upside of Downs, but people who are part of our wider community and have been since before Lyra’s birth. Friends from the Waldorf school, friends from our professional lives, friends who are just friends—so many of whom have step forward with a kind word, a meal, prayers, offers to transport other children, teach us all sign language. Our day care provider, who performs reiki and went to speech therapy with us, so loves Lyra that I don’t ever worry about leaving her.

I have at various times in my life felt isolated, even when among others. This is not one of those times. If, as I wrote in my last post, Lyra galvanizes us as a family, she also resonates outside our family, revealing to us just how we are connected to and held by our larger community. For this, we are indeed really, really lucky.

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Lyra’s Latest: Wee Teeny Peanut

Weighing the difference: the cat is bigger than the 5-month-old baby.

Weighing the difference: the cat is bigger than the 5-month-old baby.

In the roughly three months in which I’ve been writing this blog, the stats reveal far and away that the most popular posts are those about Lyra. While Whoopsie Piggle will never be exclusively about our daughter, I have decided to include periodic updates on her, titled, “Lyra’s Latest,” and, like today’s post, will have a secondary title regarding the specific update. I came to this decision while writing about the past few months of Lyra’s life, which made for an unreasonably long post—even for me. This week I plan to post a handful of “Lyra’s Latest,” cut and refashioned from that intial tome of a post.

* * *

Here is a near verbatim conversation I have several times a week:

Friendly Stranger: Oh, what a sweet baby, that’s a new one! How old is she?

Me: Five months.

Friendly Stranger: Really? Oh, my, is she small. Was she a preemie?

Me: No.

Friendly Stranger: How much did she weigh at birth?

Me: Seven pounds, ten ounces. She has Down syndrome and they tend to be smaller.

Friendly Stranger: Really? Oh, bless her heart, she’s so beautiful.

I think so too, but Lyra is not beautiful in the conventional sense. For one thing, she’s still pretty bald, as were all my babies for the first six to twelve months of life. And some of these well-meaning strangers tell me Lyra doesn’t look like she has Down syndrome, which in my opinion isn’t true. Her eyes have small openings and turn slightly upward in the outer corners as do those of most people with an extra 21st chromosome.

A dear friend, whom I’ve known since I was fifteen, has a niece with Down syndrome. She called me a few days after I had written about Lyra’s diagnosis on Facebook. But first, she called her sister to ask advice on what to say or, perhaps more importantly, what not to say. I have had the occasional person apologize when I told them Lyra has Ds. Just last week someone asked me if I was devastated when I learned. No, I wasn’t but neither am I offended by these questions and comments. I put them into the same category I put the things people say to someone who is undergoing a difficult time in life, be it the loss of a job, the loss of a loved one, or a divorce—it’s better to say the wrong thing than to say nothing at all.

On the other hand, many people tell me how all those they’ve known with Ds are incredibly loving. While I cannot speak to another person’s experience, I hesitate to categorize any group of people so broadly. It reminds me of the “noble savage” theory taught in anthropology classes. It is easy to dismiss the humanity of a group of people, such as indigenous populations, if they are described as entirely savage (generally prior to being conquered) or more advanced spiritually (generally post-conquest). Kids with Ds have behavior issues just as kids without Ds do. A mother told me that her daughter with Ds would use her hypotonia to make her body entirely limp when she didn’t want to do something. Ever hear of “dead weight?” It’s used to describe how heavy someone is to carry when they are unconscious and what a child with Ds is like when they make themselves go limp. Imagine that as a tactic in the arsenal of a toddler’s tantrum. In public. For now, Lyra is too young to have tantrums and so small it wouldn’t matter if she did.

When someone apologizes because I’ve told them my daughter has Ds, I take it as an acknowledgement of the work I have ahead of me that I had not anticipated when I was pregnant. Like my mother-in-law once said to me, “No matter how sweet they say people who have Ds are, it is not something you asked for.” No, it wasn’t. But there are many things that a child can be born with that are not so easily diagnosed as Ds. Most autistic children do not begin presenting their symptoms until they are toddlers. And children with mental illness often appear perfectly healthy until adolescence or even later. The emotional journeys of parents who have children with autism or mental illness is as challenging, if not harder in many instances, than having a child with Down syndrome. The test for Ds is not subjective, it is clear and many families, like us, know their child’s diagnosis almost immediately after birth, if not before. Because I have two sons with learning disabilities, I have a sense of the anguish of parents who know something is not quite right with their child, but for years cannot figure out what the diagnosis is and, therefore, how to provide the appropriate support.

Little Lyra and big Boggart, January 27, 2012

Little Lyra and big Boggart, January 27, 2012

As for her size, at her five-month check up with her pediatrician, Lyra was one ounce shy of weighing eleven pounds. That puts her in the fourth percentile on the growth chart for typical children. But there is another growth chart, one for children with Ds. On that chart, Lyra is in the 40th percentile for weight, 50th for height and 60th for head circumference. In other words, pretty average. My boys, on the other hand, were all big babies; Hugo weighed ten pounds at birth and Jules was just two ounces smaller. None seemed to lose any birth weight and people often assumed my newborns were at least three months old. Before Lyra, I’d never used newborn-sized clothing for any of my babies. At five months plus, Lyra still wears some newborn items and nothing bigger than size 0-3 months. It’s like having a baby doll. In fact, more than once have I been asked, “Is that a real baby or a doll?” Seriously.

Most of the time, I don’t notice Lyra’s size. She’s just our baby. It is when I see other babies that I realize how diminutive she is. At the home daycare where Leif and Lyra go each week, there is a family with whom we share some uncanny similarities. The mom has the same first name as me, though she spells hers “Hollie.” Last year, she and her husband were, like us, expecting their fifth child in August. Baby Jack is two weeks older than Lyra but when I see them together, they look months apart. For one thing, Jack is a third as big as Lyra, weighing more than 15 pounds. He has huge eyes and is developing beautifully. Next to him, Lyra looks like the newborn people mistake her for.

And really isn’t that how it is with much of life? By comparison with others, we gain perspective on our own lives. What we do with that perspective is up to us—whether we open ourselves to envy or just observe an apparent difference, understanding that other differences, as well as similarities, exist. Throughout my childhood and into my 20s, I envied the lives of other people—from friends and family to complete strangers. I used to wish I’d been given up for adoption at birth or given to my grandparents to raise, so that I could have had a different life. But as time has passed and I’ve watched our lives unfold, I see everything before led to where I am now, with the family that is far more than I had ever imagined. Sometimes that means far more chaos and complexity than I’d imagined, but for the most part it means more love and contentment. And our wee teeny peanut, like some mighty-mini superheroine, galvanizes the seven of us as a family.

Definition of GALVANIZE

transitive verb


a : to subject to the action of an electric current especially for the purpose of stimulating physiologically <galvanize a muscle>

b : to stimulate or excite as if by an electric shock <an issue that would galvanize public opinion>


: to coat (iron or steel) with zinc; especially : to immerse in molten zinc to produce a coating of zinc-iron alloy

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Writing is not my hobby. When I am not writing, my brain writhes.

In the fall of 2008, I enrolled in a course at the University of Akron titled “Southern Women Writers.” After first reading Florence King’s Southern Ladies and Gentlemen, a humorously accurate guide to the characters, both real and literary, of the American South, we studied a different writer each week. The first was Civil War diarist, Mary Chestnut, and from there we journeyed through the decades and read some authors I’d long admired, such as Flannery O’Connor and others I was shocked to have not previously read, such as Katherine Anne Porter, who in my opinion deserves greater attention in the canon of American literature. Well before the course ended, I had become resolutely jealous of the language resources any Southerner, from the Atlantic Coast to Texas, can rely upon without sounding hokey. A Yankee cannot plausibly employ colorful phrases like He doesn’t know me from Adam’s off ox. But a southerner can.

Beyond language, there was a more personally significant take away from the class. Several weeks and authors into the semester, I noticed a commonality among all the women we had read: None were mothers. In fact, by semester’s end only a handful of the writers assigned were also mothers and those women lived and wrote exclusively after 1950. I asked the professor why this was, as if I didn’t already know, and he explained the difficulty women have had in either choosing to have a career or choosing to have children.

In 1929, Virginia Woolf published A Room of Her Own, an extended essay about women both as writers as well as characters in fiction. In it, Woolf writes: “a woman must have money and a room of her own if she is to write fiction.” I find her essay, which also expounds the importance of formal education for women, to be as relevant today as it was 84 years ago. After years of sharing my writing space with others—be it as a shared office, a dressing room, and finally a baby’s nursery—I finally have a room of my own in which I write. I hope to one day save enough money to have the wall behind my desk built out with floor to ceiling bookshelves. But for now, I focus on my computer monitor and try my best to just keep writing, ignoring the towers of boxes stacked where the bookshelves will one day be. My mantra, given to me by my MFA thesis advisor, is Ass+Chair. Though crude, it is an effective reminder that being a writer means you have to write.

Enter five children

Previewing this post with my assistantWell, so they came one at a time, but their effect was immediate. When I write, I need a quiet house and prefer no interruptions. The best way to achieve this condition is to get everyone out of the house. Alone in a room of my own is what I need. Babies rarely sleep when you need to write or when the writing juices are flowing. Luckily, I have a partner who sends our two pre-schoolers to daycare three days a week. However, Lyra only stays for three to four hours because she refuses to take a bottle and by noon she comes home and nurses mightily. Some afternoons, she falls asleep and lets me write a little bit longer but, like I said, these gifts of time are rare and certainly not predictible.

During Winter Break, not only were the big boys home, our daycare provider reminded us how much we need her by taking off for a week and a day. Writing was catch as catch can. A regular stream of offspring sluiced up to my desk and asked me questions that could either wait or be sorted out without my input. Towards the end of break, when one of the Great Interrupters wanted to know if he could scramble eggs for everyone, I yelled at him, “Is the house on fire? Are you bleeding? Is someone else in the house knocked unconscious? Then don’t come in this room!” It might seem ironic because I was writing about random acts of kindness that day, but I do not confuse kindness with martyrdom. When I finally posted that last week of Winter Break, I felt tremendous relief to have finished but I was also late in picking up Lyra. In my rush, I hit the post button before filling in the title block. It was sent to everyone and posted on Facebook sans title.

Re-entry to normalcy, or at least scheduled time for the kids to be away and me to plunk my rear end in my desk chair, has been like working with an untamed animal. Just when I think I can grab it, it bolts away. On Tuesday, instead of writing, I drove Claude back to school. On Wednesday, nothing went as expected and Lyra was only at daycare for an hour. I treat writing like a job and let things like laundry and dishes go during my scheduled writing time. But the first week after break I also used some of that time and applied for other jobs, the kind with paychecks.

Money and a Room

I have the room and, limited though it is, structured time to write. But the money is another problem to solve. Flannery O’Connor was supported by her family. Katherine Anne Porter often depended upon the largesse of friends to house and feed her. Virgina Woolf herself came from a wealthy family and her husband, Leonard, supported her writing career.

I tell my children that how rich or poor you feel is all a matter of choice. I also tell them that if there is something they want to do, we just need to think of a creative solution, don’t let the funding be an obstacle. Hard work helps too and all three of the big boys work for the money they need to fulfill their own desires. Claude and Hugo are employed in the typical sense—Claude works as a monitor in an art studio at his university while Hugo washes dogs at a dog salon. Because he is only 12 and cannot yet be hired, Jules has a trickier time making money. Last fall, I suggested he put together a business proposal and present it to Max and me. Jules now cares for the household pets, providing what goes into, and cleaning up what comes out of, the two dogs and four cats. He is also responsible for one dinner a week, generally on Fridays. Rapidly becoming an excellent cook, Jules is working his way through The Best Recipe cookbook. This past Friday, he made hoisin chicken kebobs with broccoli and shitake mushrooms. There were no leftovers. On Sundays, Jules presents us with his invoice for the week past.

But it’s not as easy as I tell the boys. I graduated with my MFA in the middle of the worst economy of my lifetime. While I was in graduate school, I made ends meet by substitute teaching and taking out significant student loans, loans I have not even begun to pay back. The year after I graduated, I continued to substitute teach at the Waldorf school and also worked in the school’s office up until Lyra was born. We all thought that long before Lyra was born, I would find fulltime employment—I’m well educated, experienced and have applied to more jobs than I care to innumerate. Listening to stories on NPR of how despondent job seekers have become in this economy hits home. Time and again I have applied for positions for which I am ideally qualified and yet I do not even make the first cut. I have applied repeatedly for work I have done in the past, jobs that at the time I thought of as just stepping stones in a longer career. Friends who are employed tell me their employers receive so many responses when hiring that one résumé blurs into another and another and another.

My big boys and I are lucky because Max will not let us starve. But neither can he, nor should he, fund my children’s every needs. That is up to me alone and, frankly, it is important that my children see me—a woman—capably managing adult life, including supporting their ambitions when it makes sense. To purchase the computer Claude was required to have at school this past fall, I obtained a credit card with zero percent interest for 15 months even though I hate credit card debt. I lacked that kind of support in my own upbringing and while I still managed to put myself through college, I floundered on my own. I see Claude, a freshman in college, as not only a better student than I was, he is asking better questions of himself. He regularly talks with Max and me about what he wants to do in life and how he should get there.

Back to Art

Throughout history (and presumably before) the majority of artistic work by women has been consumable items—food that is eaten, rugs that are walked on, clothes that are worn, blankets that are slept under, and so on. On the other hand, the artistic work of men resides in museums and libraries. Think things have gotten any better? Each year, who gets published and who wins the important writing awards reminds us that this gender imbalance in the writing professions is hardly a thing of the past. For an article on recent statistics, click here: The Count.

Many men manage to have both families and jobs with paychecks and successful artistic careers. And, perhaps most consistently, those men who manage it all have something few women do: A Wife. The inaugural edition of Ms. magazine included the essay, “I Want a Wife,” by Judy Brady:


Many considered this essay, in which the lives of wives are shown to be little different than indentured servitude, to be a manifesto for Second-wave feminism. As women entered the workforce in the 1970s and beyond, this depiction of wife=servant (or slave) was considered a thing of the past, but this essay reads like the script for the marriage I left in 2007. I think that, not unlike racism, which has become perniciously subtler in the post-civil rights era, so too have women of my generation struggled with implied expectations. The published male authors I know who are also dads may have wives who work, but overwhelmingly their wives are the ones getting the kids to to everything from playdates to the dentist. In all professional families, women are still putting in 40 hours a week to family care while men put in 21. Last October, Barnard College president, Debora Spar, wrote in Newsweek:  “See who in any houshold schedules the kids’ dental appointments. My own husband, lovely though he is, seems not to be aware that our children even have teeth.”

I was six years old when the first issue of Ms. was published and by all means should feel I am the direct beneficiary of Second-wave feminism. But I didn’t make the leap so well. I long assumed it was because I was not encouraged to think about a career in which I could support myself and perhaps my children. My parents never discussed educational or career plans with me. I now see how the choices I made as I launched into early adulthood fit into a larger context, which has been described in the past decade by a few writers including Judith Warner in her book Perfect Madness. Women of my generation, Gen X, were caught at the pivotal point of social change in women’s roles. As such, we were told we could be more than is humanly possible, i.e., we could have it all: better careers than our fathers while also being better mothers than our own by raising children attachment-style. And all the while we would stay thin and young looking and able to converse on any au courant topic. We would be Super-Professionals and Super-Moms looking Super-Sexy and, to round it out, live in Super-Stylish Homes. And it wasn’t just that we could have it all, to have less was a certain sign of failure as a modern woman.

Who Defines Success?

So here I am today with five kids who are turning out just fine and a résumé that barely grazes upon my actual skills because it’s so hither and thither. For a time, a friend and I had a job search support group of two. She also began looking for work when the economy went south and we would share information on job listings we thought might be good for each other. Eventually my friend was hired as an administrative assistant at a local university, but she continues to let me know of any appropriate positions she hears about. She’s been working now for over a year and listening to her I am reminded that jobs come with politics and personalities as well as paychecks.

A few months back she asked me what my ideal job would be. Easy. To get paid to write. “Yeah, well, all right, dearie. But seriously, what kind of job do you want?” Because we were on the phone she could not see me blush at her chiding me for wanting to make money as a writer. I had been honest when she had asked of my “ideal” rather than “likely” employment.

I know mothers who manage to publish and work jobs that provide paychecks. However, either their children are older or they have significant help from their families—as in retired parents who, when needed, act as de facto nannies. I also have a friend whose book should be published and, in my opinion, optioned for film. But she has two children under the age of five and works two jobs to help support her family. That doesn’t leave much time or energy for the business end of publishing and I cannot help but wonder if her situation would be different were she a man.

True Confession: I live a comfortable life. But as a woman, I feel required to justify my need to write and my desire to publish.

I must write. I must raise my children. And I must earn money. The first two dovetail for as much as they interfere with my time at my desk, my children provide for me both a life and material that are endlessly rich. Virigina Woolf didn’t have to earn her money nor raise children, yet her assessment of what women need to write resonates into this century because our society does not yet value equally women’s writing with that of men. Successfully writing is an even trickier task as a mother, and though certainly not impossible, the emotional, if not financial, support of family is essential, at least for me.

Postscript of Sorts

This particular post has taken me more than a week to write due to the aforementioned actors and activities. Along the way something changed: two days ago I was officially hired for a job I can do at home that is related to writing—proofreading. While it will not provide the security and benefits of a full-time position, it does give me the flexibility to continue writing and take Lyra to her appointments.

Next act: balancing while juggling!

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Beginning Today

A laminated sign that hangs on our cereal cupboard knob.

A laminated sign that hangs on our cereal cupboard knob.

Each morning the Plain Dealer is delivered to our doorstep. On school days, Hugo gets up at 5:30 am, starts the coffee, feeds the dogs and retrieves the paper. Because of his intense performance and rehearsal schedule, mornings are when Hugo does most of his homework. But first, Hugo reads the comics. Jules usually calls second and because Max is hurrying off to work, I let him read them before I do. Some days I don’t get to them until the end of the day and when that happens, I verify whether my horoscope panned out accordingly or not.

But now, on the dark mornings of winter break, the boys have been sleeping in and I read the comics while they still dream in their chilly bedroom over the garage.

On Monday, the comics dwelt overwhelmingly with New Year’s Eve and specifically with resolutions for the New Year. I had moved on to the other sections of the paper when the boys joined me one by one at the table with their coffee and cereal. “Have any of you thought of anything you want to do differently in the New Year?” I asked them. Nobody responded coherently and taking advantage of the relative silence, I went on. “We’ve had a wonderful year if you think about it: Claude has just finished his first semester of college, Hugo is doing well in Madrigals, band and school, Jules has just grown up in so many ways. We had Lyra this year, Max is in a good place at work, I’m writing regularly.” It would be fair to say that Leif has been tyrannical as a two-year-old, but kindly nobody did.

I also mentioned the dark events in the past month—the shootings in Newtown and upstate New York as well as the horrific rape and murder of a young woman on a bus in India. Violence and suffering are at the elbow of merrier holiday cheer this year. None of the victims could have predicted these events and taken preventative measures. Which means there is nothing to rule out similar events happening in our own lives. Thinking of the loved ones of victims of events known and unknown subdues my joy at what a good year 2012 has been for my family.

Less notably so too has the cold and flu season subdued our holidays. Often, I don’t catch the colds that the boys bring home and share with one another like a pocketful of tricks. I eat well, take my vitamins and wash my hands frequently. When I do fall to their viruses, I’m often last. I fell to the latest sinus virus two days after Christmas and, as Hugo says, it’s a hell of a cold. After talking with the boys about their resolutions, I took more medicine and by nine in the morning was back in bed. Lying there, I caught up on email with my phone.

When I go to bed, particularly in the daytime, I imagine a sonar implant going off in each of the children’s brains because within five minutes they start appearing in the bedroom I share with Max. The first to arrive on Monday morning was Hugo, still in his robe. “Go and get Claude and Jules, Max too, and tell them to come up to the bed,” I told him. Each Sunday, NPR sends me an email of the previous week’s most emailed stories, it’s a great feature and I highly recommend signing up for it. Once everyone had flopped onto our queen-sized bed, I read to them one of the top stories.  It was about a study of 9- to 11-year-old children who intentionally performed daily acts of kindness. These kids were found to be happier and more accepting of their peers than the control group. Furthermore, the piece mentions similar findings in studies on adults. (Random Acts Of Kindness Can Make Kids More Popular : Shots – Health News : NPR)

“You know,” said Max, “I heard on the news yesterday about someone giving a Starbucks barista $20 to pay for the people behind him in line. One of those people also gave money and for most of the day everyone’s drinks were paid for by someone else.” I had heard that report too but then Max went on to tell me something none of us knew, which is that he regularly buys coffee for the person behind him at Starbucks. Max has a long commute to work and many mornings he stops halfway for a cup of coffee. “It makes a lot of people uncomfortable and I have to tell them ‘No strings, just let me get your coffee for you,’ but last week there was a man who came up and said to me, ‘You probably don’t remember me, but once when I was having a bad day, you bought my coffee for me and it made a real difference.’”

So instead of generic New Year’s resolutions, I asked everyone to think about doing random acts of kindness for a day or two and then talking about them at dinner. On New Year’s Day, Hugo shoveled the back parking area without being asked. Jules made bacon and pancakes for everyone for breakfast. Claude shoveled the sidewalk by the street, which is difficult because the pavement is uneven and the snow, much of which was plowed off of the street, is crustier. Max fixed a small wooden bowl my grandfather had made and my grandma had given me, which had cracked and sat in stacked layers on my dresser for nearly two years. But I who had initiated this kind act challenge, found it difficult to find an act of kindness to perform. I think the word “intentional” has me hung up. It seems like cheating if in an impromptu situation I am nice as opposed to planning a kind act. By day’s end, I felt as if I’d been generally nice but had failed to produce a planned act of kindness.

Human history is woefully stuffed with tales of aggression. Last month’s headlines were horrific, but little different than any month previous when considering all countries and not just our own. And the past is unchangeable. I like the political mantra Think Globally, Act Locally. I recycle, buy locally when possible, consider how the food I put in my mouth was raised and prepared. I always vote, I volunteer for campaigns and I give money to local candidates. I wonder if, along with environmental and political issues, random acts of kindness fulfill the grassroots goal of local action affecting global outcomes? I think most often I am a local optimist and a global cynic. Is Think Globally, Act Locally just a placebo to feel better about an individual lack of empowerment to change the world’s problems? Occasionally one person, like Dr. Paul Farmer who is the subject of Tracy Kidder’s book Mountains Beyond Mountains, is able to change a segment of the world for the better, but few of us have the ability or desire to be a Paul Farmer. The best we can do is facilitate the Paul Farmers we know while ethically comporting our own lives. (Mountains Beyond Mountains: The Quest of Dr. Paul Farmer, a Man Who Would Cure the World: Tracy Kidder: 9780812973013: Books.)

Back to the Role of Parent

I stated in my first post that I do not want this to be a just another mommy blog, that discussed in these posts will, yes, be my family, but also questions on life and politics. But so often, if not always, all points swing back to family.

Family Is Practice

My children have been raised as Shambhala Buddhists and so far continue to view their spiritual development within that paradigm. They all know how to meditate, which is in some ways the equivalent of prayer in other faiths, and ideally done daily. While I don’t monitor them, I’m fairly confident that nobody in this house can claim daily meditation practice. What I do hear is from all of us is a desire to meditate more. It’s hard. Finding  15 quiet minutes in a house where seven people live, two of whom are babies, is nearly impossible when the sun is up. Yet those same meditation interrupters are the best teachers. Being a good parent means regularly putting the needs of your children ahead of your own desires. You desire sleep, but you stay up with a sick child. You desire listening to the radio in the car, but you listen to a Kindermusik CD for the umpteenth time. You want to react to your teen’s anger with equal anger but you don’t, or if you do, you later apologize with sincerity like you’ve not shown in an apology to anyone else. And for these and so many more examples, a fellow Shambhala Buddist once printed up T-shirts with the phrase “Family Is Practice.” One needn’t be Buddhist to understand this.

I would like to say that I am actively raising empathetic children who are growing into compassionate adults who will approach life with mindfulness. As their mother, I question my objectivity to analyze my sons’ qualities. What I do see is three teens (okay, Jules is still 12 ½) who enjoy their younger siblings. They are patient with Leif when he throws tantrums, they play with him in ways that border the worlds of adults and children and which Leif loves, and they pay attention to when he needs something, including a diaper change. All of them hold Lyra like she’s the best bundle of goodness they’ve ever come upon, which she is, but they’ve figured this out on their own. And that means they are considering someone other than themselves. Who knows if they’ll take that out into the world of their adult lives? I don’t, but I hope they do.

No Easy Pieces

I told Max before my last post that again I hadn’t written anything light and funny. “You’re Scandanavian, you can’t help that you keep going back to you inner Kierkegaard.” I don’t know if it’s my heritage or my personality, but I do brood. I’ve been working on this post for several days, contemplating the richness of my personal life and the contentment I see, at this moment, in all my children and my partner. All of this contextualized in the dark events reported last month.

True Confession: I love Facebook. I have issues from time to time with the policies of the company, but as a tool for communication, I embrace the technology. Before Facebook, family and friends rarely saw photos of my kids, as I’m just not efficiently organized enough for printing and mailing hard copies. With Facebook, I have stayed in communication with people who have moved away or I don’t see regularly. I have rediscovered old friends and become better acquainted with people I barely knew from my childhood. I don’t friend everyone and rarely unfriend someone.

When I checked Facebook this morning I found the following post written by someone with whom I went to junior high school:

I have come to the conclusion the only reason there are so many stupid people is that it’s against the law to shoot them!

Besides being profoundly tone deaf to the news, I imagine the person who posted this does not actually wish to shoot, and by implication kill, anyone. I imagine that this person had a frustrating day. Perhaps the traffic was bad getting home from work. Perhaps the cashier at the grocery store was rude. And, yes, perhaps someone did something stupid. I’ve been frustrated on days when things don’t happen as I want them to. Sometimes I can look past it, but other times it can put me in a foul mood. I may yell at the kids to clean the kitchen when asking them would have gotten the same, if not better, results. I withdraw in my own home, wishing to be left alone, which I will categorically tell anyone who tries to talk to me.

I don’t assume this person meant shoot people with limited IQs, such as my daughter. I don’t assume this person meant shoot people who aren’t college educated, such as my parents. I don’t assume this person meant shoot people with high IQs who have learning disabilities, such as two of my sons. I assume this person’s definition of “stupid” in this context was “anyone who prevents me from having what I want when I want it.” We’ve all been there. I imagine the people being called stupid were also not the family or friends of the person who posted. Random acts of kindness are easier given to those we know and love. It is harder for those we don’t know and harder still for those whom we don’t like for whatever reason. If there is transformative power in being kind, I suspect it is even greater when being kind to a stranger or an enemy.

This person’s post provides the perfect illustration of a commonly quoted Buddhist slogan:

Desire is the foundation of aggression.

It also causes me to think of my own language. At times, I speak with words that would convey a violence I don’t intend. For example, I recently said I wanted to pinch Leif’s head off when he was in the throes of a full-blown tantrum. And

My Random Act

I haven’t committed one that is intentional. Perhaps I will stop before speaking and think of what my words mean before I say them. Today is a new day full of promise and opportunity for me to do so. I hope anyone who reads this will consider doing the same. According to the aforementioned study, it may make you happier. I can’t tell you it will change the world, but the effects can ripple beyond you and your day, just as they did for the person whom Max bought a cup of coffee. Maybe acting locally while thinking globally is a placebo. But for most of us, it’s what we have to work with. Just try it.

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We Are All in Newtown

It is mid-December 2012 and in the background of daily life are the impending holidays and the end of the Mayan calendar on December 21, which some people suggest predicts the end of time. Last week, I thought I would write this week about the holidays, celebrating Christmas in all its pagan glory when my children have been raised exclusively as Buddhists. Last week, I finished my weekly Whoopsiepiggle post on Thursday and planned to edit it one more time before posting it the next day. But last Friday, before I had posted, a friend told me of the shooting in Newtown, Connecticut. I didn’t post on Friday. I wondered whether or not to post on Saturday. Would posting, by resuming my weekly routine, help process such an emotionally eviscerating event? Or would holding off on posting show respect for the dead much like a moment of silence? I posted on Saturday and I’m still not sure if that was the better choice.

Mayan calendar or not, it may feel like the end of time has come for the families of the 20 first-graders murdered in their school. The friend who told me of the shooting takes my sixth-grader, Jules, to school each morning with her own first-grade son. After she called, I wanted to back up time to earlier that morning when we were chatting in my driveway while Jules climbed into her Jeep. The air was crisp but not frigid, the matte finish of frost coated the lawn and the sky pinked the horizon. At just past 8 o’clock, it was the beginning of the last hour of life for twenty little children and the adults who tried to protect them.

People die everyday. Approximately 150,000 of them worldwide. In 2000, it was estimated that roughly 1,500 people are murdered each day on our planet. Sometimes these events hit us because the person who dies is someone we know, someone we love dearly and when they pass, it can feel as if something inside us dies too. Other times, strangers die in ways that captivate our sensibilities and make us pause in our otherwise self-absorbed lives. The destruction of the Twin Towers on 9/11/01, the South Asian tsunami in 2004, last year’s tsunami in Japan. We gasp when other humans, particularly those who live most like us, suddenly stop living with little or no warning. If it could happen to them, it could happen to us is the feeling deep inside. Perhaps even relief that it happened to someone else and not to us.

This past year brought an onslaught of mass killings in the U.S. Humans killing other humans whom they didn’t even know for no apparent reason other than insanity. Last February, after a boy in the nearby town of Ravenna, Ohio randomly shot and killed three students, we practiced a lockdown drill at the school where I worked and Jules attends. The community at the private, Waldorf school feels like that of a healthy church community in the way we come together to help out the school and one another. The dogma is the Waldorf pedagogy we have all chosen for our children. I have long had a list of things I would buy the school were I to win the lottery—things like energy efficient doors and windows. After the Ravenna shooting I became acutely aware, as I sat at a desk from which I could see the main doors to the building, that our school was not adequately prepared for an intruder with an assault weapon. My wish list for the school is now very different. Then again, the fact that Sandy Hook elementary was far more prepared was of little consequence when the assailant just shot his way into the building.

A week after the Ravenna shooting, we learned of an Episcopalian school’s headmistress being murdered in her office by a recently fired teacher. They had let him in because they knew him and never suspected his guitar case contained a gun. Working at the K-8 school my son attends is the only job I have ever had where I felt a deep concern for my physical safety. Not because there was anyone I was afraid of but because it is clear that nobody at any of the school shootings this past year thought they were in any danger of inexplicable violence.

What’s Different?

With each mass killing this past year, not only at schools but also a movie theater in Colorado and a Sikh temple in Wisconsin, I observed something as grim as the murders themselves: We as a nation have become desensitized to mass murders committed with alarming efficiency. Until last Friday, I never expected uproar for gun control because I knew, as apparently did the politicians, that it was pointless. I have long had the sinking feeling that we will just live with these crimes in this country, that it is one of the negatives in the cost benefit analysis of living in the richest country in the world. People talk about Canada having a preferred approach to a number of social and criminal issues but I do not know a single American who has moved to Canada in response to American policies.

I wrote in Whoopsiepiggle last week that having children changed me, made me a better person. I was not a bad person before and, if anything, my kids have taught me to be kinder to myself. Losing a child under any circumstance would also change me. Perhaps more deeply than having them in the first place. To lose a child to unspeakable violence, to wonder what your baby’s terrifying last minutes of life were like, and to know that as the parent you were utterly incapable of protecting your child, these things shatter my heart as a distant observer.

That’s the difference.

According to a recent study, mothers who lose a child, even a child out of the home, have a 133% greater chance of dying themselves in the subsequent two years. This horrific event has made many turn inward, go deeper than we did in any of the multiple mass killings of the past year. This time there is much discussion of gun control, access to mental healthcare, and the fact that middle class white men have perpetrated the overwhelming majority of these massacres. These discussions are happening because this crime, even given our gun death saturated news cycles, was too much for us.

I don’t doubt that many people have turned to their faith to help them process this event. There’s nothing to make sense of, the killing of 20 innocent children and their adult educators is insane. My faith does not ascribe spiritual causation to events whether they are good or bad. But I have learned through my practice to observe our behavior when things are very difficult. Particularly at times of grief can our hearts become softer, more open, vulnerable and compassionate. It is a tenderness we would do well to cultivate, to carry into our interactions for as long as possible.

In the days following 9/11, the French paper, Le Monde ran the headline, “We Are All Americans.” As a nation and perhaps beyond our borders I see many people grieving as if we are all family with the people of Newtown, Connecticut. A friend posted on her Facebook wall yesterday: “I have to stop watching television. All I’ve been doing is crying.” Another person responded that she too had been crying and her TV was off.


An longtime friend who now lives in California stayed with us over the weekend. Also Buddhist, she and I briefly discussed that in this or any situation the question of why is irrelevant. Whatever has happened has happened, so now what?

But the soul cries why. Why were these children born if only to be taken? Why did the killer pick that day, that school, that classroom, those children? Why had the killer not been treated, hospitalized, or jailed? If I were a parent of one of the murdered children, I imagine I’d ask myself why I hadn’t kept the child home that day.

Questions of why only lead to despair because in the end, we have no control over what happened. The dead are gone, many now buried. And nothing will bring them back. We will all die and soon, in relative terms. For most of us, 99.9% of the world’s population will not notice our passing. And soon thereafter, within a few decades, we will be forgotten in the vast darkness of time.

What will we do with the very limited time we have? We will cry for those little children as surely as we cry for their families whose pain breaks us open and for the moment brings us together with people we will never know. We will try to sustain the compassion we feel for one another in the shadow of this tragedy because right now, in this holiday season when shopping seems so hollow, when the fiscal cliff now seems inconsequential, our perceptions of “us and them” are momentarily suspended while we grieve for the dead in Newtown, Connecticut.

And maybe, before we re-swaddle our conscious minds with our busy lives, we will finally address the complex issues of these now common massacres. Twenty children were heinously sacrificed. It need not have been in vain.

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What We Keep

Max and I have a new fantasy for disposing of our extra furniture and belongings: buy a small house in Charlevoix, Michigan and haul it up there. We’ve picked out the house, it’s right next door to my step-mom and her husband and where we occasionally stay we visit. It’s small enough to be easily maintained and the kids can roll right over to Grandma’s in the mornings when we are there.

In our minds, we have already moved in. We know where the extra dressers will go, the three double beds we don’t need, the antique shelves, the 1950s dinette, the extra dishes, cookware and linens. Don’t forget the decorative objects, original paintings, coffee table books. All fit perfectly in our little pied-à-terre.

Never mind that the cottage is not for sale. Nor that we couldn’t afford it if it were. Nor that we already own three homes. And what about the fact that not only does the house we live in have a three car attached garage, there is an outbuilding that is the equivalent of a four car garage? All full, yet only the mini-van gets parked inside.

“We live like hoarders!” I plaintively whined to Max this past weekend as I listed the rooms stacked with boxes. We’ve been in the house just over a year and, as the demands of our daily lives overtook the formerly pressing need to unpack, we became oblivious to the boxes. So much so that now we blithefully trot the goatpaths between the walls-o’-cardboard. Yikes! We really are hoarders!

For every improvement, there is an attendant cost.

That sounds like a quote from someone historical, but it’s just me (I wish I could say, an equal and opposite cost, because it sounds catchier. But that’s generally not the case). I first struck on this notion when I was an undergrad and at the time was pondering computer software. Computers were beginning to make automatic corrections and, as someone who began writing in the days of electric typewriters, I wondered if grammar and spelling would degrade in younger generations. Looking at the writing of my teenaged sons, I think it has. Hugo especially has pervasive capitalization errors because he relies on auto correct to clean it up for him. Sometimes it does and sometimes it does not.

The word “cost” sounds negative and sometimes it is.

Take for example, buying a house. You might improve your financial situation by paying for a mortgage, in sense paying yourself, rather than giving your money to a landlord. However, as the homeowner, you now must do the yard work and maintenance on the house. Maybe you love yard work and maintenance, so that’s great for you. But all homeowners have had those times when things unexpectedly break and you, not your landlord since you don’t have one, have to replace them.

When I divorced, I got the house. The same month I took sole possession the water heater broke. A few weeks later the dehumidifier died. Followed in short order by the refrigerator, the washer, the dryer, the oven and the garage door opener. I became well acquainted with Alan, a sales clerk in the appliance section at Home Depot.

I believed then as I do now that I had greater security for my children and myself by owning my home. But without Home Depot’s wonderful 12 months-same-as-cash programs, I would not have been able to replace everything that broke in a timely fashion. Even with interest free financing, my money was pinched making those payments.

In other cases, improvements may only seem like they have an attendant cost but as those cute t-shirts say, it’s all good.

In the first few months after I had Claude, my first child, it was impossible to get anywhere on time. Born in January, I’d feed and burp him, change his diaper and dress him in his little snowsuit. I’d put on my coat and as I picked him up to walk out the door, he’d poop. I’d take off my coat, his snowsuit, his pants and diaper, clean his butt and then rewind. Or he’d spit a belly’s worth of milk down his front, causing another adventure in tiny clothing. It was then that I realized I had lived a completely self-absorb existence pre-baby.

Six weeks before Claude’s third birthday, I had my second baby. I was better at getting a baby out the door and would often have wee Hugo bundled into his car seat before suiting Claude up for the cold. Still, anything that involved getting in and out of the car overwhelmed me. There is no dashing into a store when you have two small children. The stroller has to come out, the baby goes in the stroller and then the toddler comes out. Hopefully you don’t leave the diaper bag behind, because you most certainly will need it if you do. In those days when I would see a woman pushing a stroller with one baby in it and no other children around, I would think she doesn’t know how easy she has it.

Now I have five, count them, five children! The Episcopalian Church across the street from our home has a community dinner each Wednesday evening. We are not members of the church, but have many friends who are. One in particular has made it a point to invite us to come each week and who could resist? I don’t have to plan a dinner, the boys don’t have to do the dishes and we get to visit with friends. Best of all, the food is delicious!

“You know,” I said to Hugo and Jules as we walked over to the church last week, “there are five of us here right now, but it doesn’t feel like so many people.” I was holding Lyra and Hugo had Leif’s hand. Max had gone to visit his elderly uncle that evening.

“What are you talking about?” asked Hugo.

“Well, if you had told me when I was a young woman that one day I would have five children, I would have imagined some crazy scene, like kids running around all over the place. But I’m walking with four of you right now and it’s not crazy—it’s just us, you know what I mean?”

“Yeah, well, we’re each other’s company, we’re your peeps,” said Hugo.

Granted, I don’t have five little kids, which would be far more chaotic than having a young man (Hugo) and an adolescent (Jules) help me with the two peanuts. As my mother’s only child, growing up was very different for me than it is for my own children. I spent most evenings by myself while my mother worked in bars and my stepfather traveled for his job. I cannot imagine having only one child. Or as Lena Olin’s character says about small families in the film The Polish Wedding, “You wouldn’t bake just two cookies, would you?”

I greatly appreciate the fact that the human population is growing at a rate many find alarming and I fail big time on the reduce, reuse, recycle mantra in terms of putting so many humans on the planet. But I am a better person for having become a mother. Perhaps only one or two would have done the trick. But I had five. And I have learned from my five kids both that I am not the center of the universe but it is paramount that I take good care of myself in order to take good care of them. Children have humbled me and taught me how to hold my seat as the boss. They keep me grounded by reminding me who I am while pushing me to be my very best and to reach, reach, reach. Sound familiar? That’s because it’s also how I raise them—it’s a symbiotic gig. My kids bust my butt better and more often than anyone else. And they believe in me more than most do or will. Claude and Hugo regularly tell me to publish my book. That they believe in my writing makes me want to be a better writer. Every day.

Sometimes it’s a no-brainer that what you lose is better off lost.

Leaving a soul-sapping marriage is always an improvement, no matter how difficult it is to do so.

For years, I complained about what I did not like about my marriage. Then one day I did something different: I declared what I needed. I needed a partner who showed up, both physically and emotionally, for the boys and me. I needed sovereignty and for my partner to be a real partner. To support my ambitions just as I supported his; to invest in our children just as I had done; to build a life that on most days meant being together was better, easier even, than being single. And I was no longer willing to accept IOUs for changes in our relationship. That bank had gone belly up.

I got what I wanted, but not where I thought I’d find it. My demands were too high for my ex-husband, which is neither his fault nor mine. We found the meaning of “irreconcilable differences,” the cause often cited in newsworthy divorces. Our divorce was not newsworthy, but rather followed a predictable pattern to the bitter end, routinely confirming just how irreconcilable our differences really were.

I got what I wanted when, a year later, I fell in love with my friend, Max. He hit everything on my list. I fell in love with him a second time when many months later, he stepped into the lives of my boys and filled a void. Not by buying them things or trying to impress them. But simply by showing up. Even when it is inconvenient, even for situations that simply aren’t fun.

A New Life in a New House

Max had just built a three-story addition onto his home in a northeastern suburb of Cleveland when we converted from friends to lovers. It had been the home of Max’s father, who had died almost ten years earlier. Many of his father’s things—furniture, art, collectibles, papers—were still there.  Before returning to Ohio and his father’s house, Max had lived for more than a decade in other states and had packed a household of his own into the 1930s bungalow. While the older parts of the house were as full as a funky antique shop, the rooms in the new addition were invitingly open. A new life accepted the invitation.

My house is in Akron where, in 2003, my children and I solidly rooted after years of moving. When my ex-husband moved away, he took with him many family heirlooms he’d inherited including three dining room tables and two hutches. Beautiful as they were, it was a relief to see them go for they made me feel like the curator in a museum. If the house felt a little empty, or refreshingly open, it quickly refilled with furniture like water pouring into a capsized boat. One friend gave me a couch; another gave me dressers. Max himself brought over a leather wing-backed chair, a cabinet and tables. Soon my 1909 four square was as full as it had ever been.

For three years, we happily lived in two homes. When we had our first baby together, Max decidedly began staying most weeknights at my house and on the weekends we pretended his house was our pied-à-terre. His two cats grew terribly fat and lonely.

I don’t recall when we started looking for another house. We certainly didn’t rush and had we not had the world’s most patient realtor (, we might never have bought a third home. Time and again, a house would look appealing online and appalling in person. We soon realized that as much as modern floor plans have to offer, we prefer old construction. Solid doors, brass handles, curves in the plaster, quirks in the design, windows wherever possible. We’d go months without looking at any houses.

And then, like at the end of Miracle on 34th Street when child actress Natalie Wood sees the house she’s been dreaming of and makes her mother and (soon to be) stepfather stop and go inside with her where they find Santa’s cane in the corner of a room, we knew immediately when we had found our home. All other houses we had dashed through, knowing instantly that they were not what we wanted. In the house that was to become ours, we went from floor to floor, room to room, squeezing hands, whispering, “Look at this.” Because he was the most resistant to moving, we had taken Jules with us whenever we looked at houses, including that day. “Please buy this house!” he told us. That evening, Max made an offer. It was quickly accepted.

It took us six months to fully move in. First, we emptied and rented Max’s house. Then we did the same with mine. Things we had long housed were discarded. For Max, that meant many of his father’s things. What had once been hard became easy, as we built our future instead of holding onto another’s past.

But like archaeology, it has happened in layers. Since moving in, we have had garage sales, taken a truckload of things to Habitat for Humanity, sent boxes of art to Max’s sisters in Colorado, sold things in an auction, given more to the American Cancer Society’s local Discovery Shop. And the back garage is filled with furniture that doesn’t fit in the new house. Built in 1940, it calls for a mid-century aesthetic and we both came from Arts and Crafts homes. Our Arts and Crafts pieces of furniture look incongruous in the new home. We have loved them, but they don’t belong here.

I only have one piece I’ve yet to let go of (yes, other than books of mine waiting for shelves to be built, the rest really is Max’s stuff). An antique child’s armoir-dresser built of dark wood in Mission style. It was in my room until I was in high school. Years ago, my mother called and said she was going to sell it unless I wanted to pick it up. Hugo used it for several years, but doesn’t fit in any of our current rooms. Corralled in the back garage with the other outcasts, a man spied it at our last garage sale and insisted on buying it. He kept coming back to the house to offer me more money until I cried. I just wasn’t ready to let it go. Not yet. Soon. Maybe.

p.s. Max reminds me, and wants me to inform you, that we have more rooms without goatpaths (kitchen, dining room, living room and four bedrooms) than with (our two offices and the basement). 

p.p.s. The basement is really big.

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Learning About Lyra

“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.

Lyra on her fifth day

Lyra on her fifth day

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 21karyotypeTrisomy 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.

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.

Oldest & Youngest: Claude and Lyra

Oldest & Youngest: Claude and Lyra

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.

My view of Lyra while hiking with her in the baby carrier on my chest. December 6, 2012

My view of Lyra while hiking with her in the baby carrier on my chest. December 6, 2012

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.

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Lists and Real Life

“Knife fight or sex are the only two acceptable answers, remember?” asked Max. I had just told him when people asked me about the stitches on my face, I was going to say I’d been in a car accident. But that excuse isn’t on the list.

I have various lists I keep in my head. Not like David Lettermen who counts down his lists following Mark Twain’s method of going from the odd to the outlandish (read the list of what people will bet on in Twain’s short story, “The Jumping Frog of Calaveras County” and you’ll see what I mean). My first list, started in my childhood, was promises for when I became an adult. Sadly, I didn’t write that list down and have forgotten much of it save for three items:

  1. Buy good Halloween candy. I think this is something of a universal promise of children to their adult selves yet amazingly many adults forget what it was like to get those generic nougat candies wrapped in orange and black wax paper. Sadly, we don’t get trick or treaters at our new home, not a one. Last year, the first year we were here, our teenagers who had stayed home to hand out the candy were the delighted beneficiaries of my candy largesse.
  2. Do all you can to help your kids’ acne go away. Again, a no brainer if, like me, you were ever a teen with acne. My ex-husband didn’t ever have acne, which is perhaps why he told the court that I was inappropriately spending money on non-essential medicine when I took Claude to the dermatologist when he was fifteen.  Claude’s skin had erupted like a painful field of spring dandelions and he could not shave his face. It seems the judge had acne as a teen too because he found Claude’s expenses to be entirely reasonable.
  3. Buy high quality, soft toilet paper. My mother, who was a cocktail waitress, stole the commercial POM brand toilet paper from the bars she worked in. You could use POM teepee to scrub floors it’s so rough. Charmin or Cottonelle are the only brands allowed in my house. (Yes, it makes us fall short yet again on the reduce, reuse, recycle mantra because these brands don’t use post-consumer contents, but this is a promise I am keeping)

“Knife fight or sex” fall under the list of Rules for Life, as the only responses to questions regarding physical injury in order to avoid going into the mundane details of what really happened. Saying the stitches on my face were caused by sex would only encourage further questioning. A knife fight, however, holds some water for the three incisions on the right side of my face found just under my eyebrow, below my nostril and on my cheek. The dark blue sutures add to the effect. Little Leif asked if he could kiss my boo-boos when he first saw them, but when he leaned in and looked closer, he changed his mind and just kissed my mouth instead. Fair enough.

The knife-wielding assailant was a plastic surgeon and the scene was a full-blown surgical suite at a nearby hospital this past Monday. It seemed overkill to me and I said so. I was told that insurance providers require it nowadays (and if you want to know the real reason why American health care is more expensive, with costs rising faster, than in any other first world country, look no further than insurance companies, but I digress). If I had known I was going to be required to wear a hospital gown, I might have shaved my legs for the occasion (I stopped some weeks ago when we went from skirt to pants weather).

Overkill indeed. I had removed from my face what the paperwork described as “lesions.” Years ago, I called these same spots beauty marks as I felt they were not unattractive, think of the character Peppy Miller being given a signature beauty mark above her lip in the film The Artist, which helped make her a star. But with time, and especially pregnancy, my beauty marks grew. And grew. Morphing into witches’ moles, I could have cackled, “Candy, my pretty?” at Halloween had any little beggars come to our door. When pregnant with Lyra, these grotesque growths also became suspiciously itchy. And so, after consulting with my doctor, I decided to trade in lesions for scars.

You find out how good your insurance is when you file a claim. The same it seems is true with Rules for Life. I wish just one person would play along with me. Instead, many friends and acquaintances have looked at me with a mix of horror and sincere concern and ask What happened? Or, Are you okay? And when I say, as I have many times this week, Knife fight! They say, come on, really, Were you in a car accident? (What did I tell you, Max?)

I like the idea of being mysterious, but I have lived a relatively filter free life. It’s not something I chose but rather, like Turret’s syndrome, what was in my mind used to flow unencumbered down the path to my mouth and out a wide delta of public speech. An insanely acrimonious divorce helped me cultivate a modicum of privacy and I no longer tell anyone everything. But when friends are clearly worried by my gruesome appearance, I cannot toss it off with humor. I cave and tell them I had bits taken off.

You may ask, Why not hide the evidence under Band Aids?  Sure, there’d be some questions, but perhaps not as many. First of all, the surgeon said not to, but I’m hardly a model patient and have bucked medical recommendations aplenty. I’ll tell you the real reason: because I know what I like and how I like to look. And I’m mighty comfortable in my skin and don’t need to hide my cosmetic imperfections. That is now. Consider this quote:

Those “precious middle years—those beautiful years when a man finally understands what he is about to lose and is eager to make the most of it.”

I read this line in the novel Suite Française while waiting in pre-op for my “surgery.” Published in French in 2004 and translated to English in 2006, it was written in the early 1940s by Irène Némirosvsky and left with her daughter when the Germans sent the author to Auschwitz in 1942, where she died soon thereafter at age 39. Only in the 1990s did her daughter realize it was a novel and not a collection of handwritten notes. The history of this manuscript and its author is as compelling as the novel itself, which is about the German occupation of France during World War II. For more see: Irène Némirovsky – Wikipedia, the free encyclopedia

Most days, being middle aged feels like a gift. Yes, I feel osteoarthritis in my right knee when the weather turns cold and dry as it has this past month. Yes, there is only so much good lotions can do for aging skin. But I also see that I’ve likely lived more years than I have years left to live and perhaps therein lies liberation. I’ve already had eight more years on this planet than Irène Némirosvsky, how have I made the most of it? I ask myself this almost everyday. The quotidian—I have loved my children and by all accounts raised them well—is that enough for me? It is important, but the fact that I beg the question reveals the answer. No, it is not. So far mothering my children has been the most important work of my life and perhaps it always will be. But it is not enough.

Not everyone who is lucky enough to live a long life becomes introspective, philosophical or spiritual (I know several choice examples of those who haven’t and I’m sure you do too), but many do. A good part of that comes with letting go. I will never look as good as I did when I was nineteen. But at nineteen I didn’t like the way I looked and now, at nearly 47, I do. At nineteen, you would never have found me in public with stitches all over my face—not if I could help it. But at 46, I not only carry on, I rather enjoy the way the grocery store cashiers struggle with the impulse to stare at my wounds. (A wee obnoxious, I know)

Still to this day women are steeped in a societal stew that encourages us to be the objects of desire. I know I was. But such an object has no real desire of its own and truly many women still struggle to know what it is they want. I know I have. Many women “d’un certain âge,” as the French put it, become lost when they can no longer trade in on their looks. And who can blame them? Consider the film Searching for Debra Winger, which directly addresses the fact that few Hollywood actresses, regardless of talent, continue to get good roles after the age of 40. (Searching for Debra Winger – Movie Trailer – YouTube)

At the top of the Rules of Life is: Don’t let someone else give you your rules to live by. That’s not as easy as it sounds and it certainly wasn’t always the case. It took me over 40 years to shrug off the rules for womanly living complicit with keeping me from following my life’s desires. Even though I studied French feminism in college, even though I had a subscription to Ms. Magazine early on, even though in my 20s I intellectually knew the very points I am making right now in this post. At 41, I realized what I was going to lose and woke up to make the most of it. The choices I made as a result were scary at the time. But I saw that death without living was far scarier and a very real possiblity. It happens all the time.

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(Over the River and through the Woods to Grandmother’s House We Go) x 2.

Reduce, Reuse, Recycle.

We blew the first rule of green living. We try to live simply, but with seven people in this family,  it’s not so simple. Our new Toyota Sienna, purchased when the cost of fixing the old Sienna was greater than its value by a couple thousand dollars, can theoretically transport eight passengers, all seat-belted.

Figure two adults in the front seats. As my two oldest sons are now 6’2” and 6’ tall, four of us fit the physical description of “adult.”

The two captain’s seats in the second row are each dedicated to a car seat—one for two-year-old Leif and the other for this year’s newest member, Lyra. The middle seat in the second row, which is almost as narrow as a coach seat on a commercial airlines, had to be removed in order to access the back row of seats.

The back row, with the least amount of leg room possible as the middle seats have to be pushed all the way back to accommodate the toddler and infant car seats, might work if we had children under ten years of age, but note the heights mentioned above. Also, in this family, our height is all leg. Hugo and I have 32” inseams, Claude’s is 34”.

Lily & Hoover, ready to roll

In the very back, where the families in the Sienna ads store their luggage, we have a folded down stroller, which we very much will use, and two Shelties. Those are dogs that look like little collies and luckily like lying together in close quarters.

Where to put the turkey? The small suitcases of clothing? The diapers? The boys’ backpacks? My laptop? So much for simple living.

We departed  in two vehicles on two different days.

I left yesterday in the Sienna with Jules and the babies, the dogs, the turkey and all that these beings needed. Max is leaving shortly in his Camry with Hugo and will grab Claude in Ann Arbor on his way up north to Grandma’s house in Charlevoix. Until the kids drive on their own to Grandma’s, I don’t see how we will be able to do it any differently.

We are a modern family.

Grandma is my stepmom. Grandpa is her husband but not my dad. My dad and stepmom, who married when I was three, divorced in the early 90s after Dad had moved to Arizona in 1990. My stepmom never joined him in Arizona and he never returned to Michigan. Fulfilling the cliché that is life, Dad met another woman with children of her own and eventually seemed to forget about us. My stepmom never did and she has been the primary grandparent of my boys’ lives until I met Max through whom they have gained a second set of grandparents. Even before Max and I began producing blonde babies of our own, Max’s mom claimed my three boys as full members, with all privileges, of her grand-brood.

Every time I’ve had a baby, my stepmom was soon there to take care of us for as long as she could stay. As soon as they were old enough, my boys began spending many weeks each summer with Grandma and Grandpa in northern Michigan,  their house just a block from sandy Michigan Beach on Lake Michigan. And we come up every other Thanksgiving for Grandma’s holiday dinner. Her herbed rolls, made from scratch and cooked in loads of butter, are worth every gram of fat. I’ve never mastered her herb rolls and I’ve told Jules, who began baking breads this fall, to pay close attention tomorrow.

For years I have supplied the turkey, fresh-killed on the farm for which I host a co-op, which makes me sound like one of those über-mom-bloggers, but the way I host it is pretty lazy. All I do is reveal to the people in the co-op the code to my garage where I keep a refrigerator for the weekly deliveries. The members take turns (in alphabetical order) driving each Saturday to pick up the orders and bring them to the fridge in my garage. As a result, my food is delivered to my home every week.

This year’s turkey was executed and sealed in a plastic bag on Monday and delivered to my garage fridge that evening. I popped him in the Playmate cooler before we left yesterday and later today I will brine the bird in the same cooler. Playmates are the perfect size for brining a turkey and with a fresh-killed bird brining is, in my opinion, necessary.

When you buy your meat straight from the farmer who raised it, you inevitably learn a thing or two that you won’t pick up with your frozen Butterball. For example, meat must age in order to be edibly tender. We’ve all heard of aged beef, right? What that means is not some secret preparation, like the Kobe beef cattle who get massaged in life. Aging means a little decomposition. My fresh Tom hasn’t aged, but the brining will meet the requirements by helping break down his tougher connective tissues. Meanwhile, because he’s never been frozen, he’s not full of water. Nor chemicals or drugs because he’s also organic.

Grandma & Lyra

Which I guess gets to my point—know what is real and what really is. Your meat was an animal with a body who enjoyed being alive but I enjoy eating meat more than letting some animals continue to enjoy life. I don’t eat animals from factory farms when I can help it. Factory farm animals didn’t enjoy life as much as my organic turkey, though I’m sure they didn’t want to die for someone’s meal. I am thankful for our food, the people who grew it and the creatures who died so we could eat them. If it sounds ecumenical, it should.

That your blood relatives are genetically related is real. But real family are the people who show up, regardless of what you call them—mom, friend, brother, neighbor. Some of us are lucky to find family in our relatives. Some of us have to look beyond genetics to find our families. And my boys and I know the difference. We are all eager to get over the river and through the woods to my stepmom’s, and their very real grandma’s, house whenever we can.

When we arrived at 11:30 last night, there was a pot of split pea & ham soup waiting for us on the stove and bread baking in the oven.

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Getting to Goals

One reason why I started this blog was to give myself deadlines. I didn’t plot out goals when I began, but I see now that posting once a week, at minimum, is my goal. I got that memo last week when I did not post and felt like my boss should write me up.

Who’s my boss? You might ask. She’s a severe taskmaster named Helga. She lives inside my head and is always ready with a pen and a long pad of legal paper, the yellow kind, to list my mistakes in grand detail. Her hair is wound up tightly in a French twist and her glasses perch in the middle of her nose so that she can look over them and glare at me, which she does often. Come to think of it, Helga looks quite a bit like me—only thinner and perpetually wearing suits (usually slate-grey wool flannel, pencil skirt ending just below the knees, silk blouse with elongated collar points).

We have a love-hate relationship, Helga and me. Not easily amused, she makes me write and miserable when I don’t.

Ah, but last week. My dedicated writing days are Tuesdays, Wednesdays and Thursdays–the days when two-year-old Leif goes to daycare. But, I tell Helga, last week was not any old week. There was the election and anxiety kept me up much of Monday night. A week later, I cannot recapture that heart-thudding anxiety, which was so real and is now literally unimaginable, though factually I know it was there. Big events will do that—wedding preparations, a set of final exams, even Christmas—all truck in anxiety in advance of their arrival. Born, I imagine, out of the desire to control something that is never controllable. I know others were feeling the same early last week, because so many (of all political persuasions) were posting it on Facebook.

Feeling groovy after finishing a four hour shift of GOTV on Election Day.

Tuesday was, of course, Election Day. Akron Public Schools are closed when we have elections because many of the schools are polling locations. Currently, Hugo is my only child in an APS school and I signed him up to work Get Out The Vote (GOTV) with me. His only complaint was that we had to be at the Democratic Headquarters at nine a.m. Four years ago, when he was eleven, Hugo walked to the Obama headquarters on his own volition, while I was at work, and asked what he could do to help. They had him roll posters for as long as he was willing.

Last week, we went together to a union hall for packets of addresses and directions to the neighborhood we were to work. If you haven’t done it before, you might think GOTV would be stressful, going to the doors of complete strangers. On Election Day, the goal is not to convince people to vote for the Democratic candidates but rather to make sure previously identified Democrats have voted and, if not, encourage them to do so as soon as possible. Generally, these voters are happy to see you, but Hugo was naturally nervous and went with me to the first few houses before we split up and took opposite sides of the streets we were working.

Working GOTV often reminds me of an issue that is important to me—the reality versus the mythology of poverty. See this piece on what these myths are and how perniciously they impact society: Lies of Plutocracy: Exploding Five Myths that Dehumanize the Poor. By chance, this year the neighborhoods I walked for the Democrats were poor, working class neighborhoods including one near the Akron Zoo, which I drive through often. When driving, I see the boarded up houses and the few that are in derelict condition.

But when going to the doors of the homes in this neighborhood, I saw what I do not when driving by at 35-45 miles an hour. Modest homes kept as tidy, if not tidier, than mine. Lawns edged around the sidewalks, weed-free gardens, porches swept clean.  Children well cared for and friendly. Ubiquitous evidence that poor people are overwhelmingly NOT lazy, no more so (perhaps even less so) than any other demographic. Many people gave me guarded looks when answering their doors—just as I do when strangers knock on my door, but once I identified myself as working for the Obama campaign, many adults were happy to talk with me about the election. Lyra was a great assist as I carried her on my chest in her Ergo baby carrier, older women often telling me to “keep that baby warm, now!”

Citizen Lyra helps with the 2012 GOTV

True confession: I enjoy working in predominantly African-American neighborhoods where I would not typically have reason to venture. It’s no secret that black Americans frequently do not feel welcome in predominantly white neighborhoods. The tragedy of Treyvon Martin earlier this year gives grim evidence as to why. So why should I feel entitled to waltz through a black neighborhood? Well, I don’t. Not because I am afraid I will be shot, I’m not, but as a white woman, I do not want anyone in a black neighborhood to think I’ve condescended to ask for his or her vote. And were the candidate for whom I was urging them to hustle to the polls for white, it just might smack of condescension. But he isn’t. The candidate, our president, is black and my children will not recall a time when a black president was unimaginable. But it is my opinion that Barack Obama is, irrespective of his color, one of the best presidents of my lifetime.

Shortly after Obama won his first presidential election, the satirical online magazine, The Onion, posted this piece: Nation’s Blacks Creeped Out By All The People Smiling At Them | The Onion – America’s Finest News Source. I suppose I’m one of those people, I felt so good after we elected (and re-elected, perhaps just as remarkably) Barack Obama. Yes, there is so much work to be done with regards to race relations and poverty in this country—and don’t think the two aren’t connected, they are. See point number three in the above piece. Seemingly the hardest part is how to even have a discussion in this country about race, particularly across racial lines. Having a black man win the presidency and then win re-election does not mean we do not have significant work to do with regards to issues of race and poverty, we do. But we are, at least in leadership, in this one instance, moving in the right direction. And it momentarily puts a white middle class mama like me on common ground with some working-class black Americans. It is a place of hope for change, real change, because we all want the economy to improve and good jobs to become more plentiful. But to move past the intransigence of “Us versus Them”–whether the paradigm is class, color, religion, sexual orientation–is tectonic change. And a worthy goal. Perhaps the most worthy goal in life.

And so Hugo and I worked our packets, going to each and every door on our lists. That night, we stayed up to watch the results come in and, as we did four years ago, when Ohio was called for President Obama, we trudged out back and shot off three Roman Candles, before filing to bed. We were spent. Wednesday, my head ached and I was tired like a sick person. I did not drink the night of the election, but I felt hungover nonetheless. It’s over; finally this long election is over. May the work of our government, the essential work, now begin. May our leaders work with sincerity and not cynicism, for all citizens, not just those they agree with, and may they guide the nation out of war and economic recession. And perhaps in so doing, guide themselves away from polemic politicking.

On Thursday of last week, we took our little Lyra to the Down’s Clinic at Akron Children’s Hospital for an evaluation by their medical team. But that is a topic for another post, which I know Helga believes should reasonably post this week. If I can be sure of anything in this world it’s that she’ll keep after me until it does.

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Addendum to Voting Like I Parent

Many of you have asked if I’ve talked to my neighbors who are, to my surprise, voting for Romney-Ryan. Briefly, yes. And then I followed up with an email asking them to read the New Yorker’s endorsement of Obama (The New Yorker’s Endorsement of Barack Obama : The New Yorker). Because it’s a magazine, and not a newspaper, the New Yorker can and does go into greater depth and detail about why Obama should be re-elected and why Romney does not deserve the presidency.

Also, the Newsweek piece by Andrew Sullivan that I cited can be found here: Andrew Sullivan on the Promise of Obama’s Second Term – Newsweek and The Daily Beast.

Finally, I forgot to add that in addition to keeping good (great) grades, Hugo obtained a job at a dog groomers just before school began. He never has a day where he has not a single obligation, be it choir, band, or work. And he seems the better for it. He has so far paid $400 of the $750 he needs to go to NYC in March with the choir. He has also had to learn to navigate with his boss a performance schedule that at times conflicts with his work schedule. We parents do our children a great favor when we neglect to save them. They are better off saving themselves. Or, as I tell them, I will always push you, but I’ve got your backs.

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Voting Like I Parent

I abruptly stopped sleeping last night at three a.m. and stayed awake for over two hours, until Max’s phone alarm signaled what I already knew—5:30, time to get up. Only then was I able to doze lightly, which I did for an hour, the comforting sounds of my boys starting their day drifted in with the smell of the coffee Hugo had brewed.

Until I was in my late 20s, I slept deeply through the night, every night. My days in college and graduate school at Ohio State University were long–each day I walked miles to and around campus and worked most nights. I had a boyfriend who marveled, was jealous even, at how easily I dropped into solid sleep for eight to ten hours.

This ended, irrevocably it seems, when at 28 I gave birth to my first child. Not only did I wake to nurse him, I roused if he coughed, cried or just wiggled. Before he moved into his own room, I had another baby and then another. All four of my boys moved into their own rooms long ago and baby Lyra has slept through the night since birth (she’s a jackpot of a baby). Yet I often find myself awake at night, most commonly at three o’clock or, as I call it, my Fretting Hour. I fret about issues both personal and global, mostly stuff I have little or no control over and that seem all the more important because in the middle of the night my rational mind can be hard to locate.

However, since mid-August when Lyra was born, I have had little trouble sleeping through the night. I’ve been physically whooped due to the birth, the many visits to doctors’ offices and Akron Children’s Hospital. And then there are the other four children who still need attention, food, driven to school. It’s all good.

What kept me up last night started on Saturday when we were trick or treating in our neighborhood. “I didn’t know they were Republicans,” said my son Jules, dressed as a mad scientist, as we walked past the house of friends. When I assured him that they weren’t, he pointed to the Romney-Ryan sign by no means hiding in our friends’ front yard. I must have had visual denial to have missed it. These friends, like me, voted for Obama in 2008 and abhorred the Bush presidency and what it seemingly stood for—a prioritization of political party interests over those of the nation, like they’re playing some crazy football game in Washington D.C. These friends also believe in the full array of civil rights for our GLBT citizens and that women should receive equal pay for their work and have full access to health care. And I thought that they believed in a safety net for those citizens who need it.

Though Obama and his administration have worked towards long term goals for our nation and not politically expedient goals for his re-election–goals like averting economic disaster and rebuilding the economy, ending the war in Iraq, ensuring the rights of all citizens, rebuilding our relationships with our allies and, yes, bringing affordable healthcare to all Americans–these friends of mine want to fire Obama. I have been walking around gobsmacked because I now see that the race must really be as tight as the media says it is and perhaps Obama will lose.

I have long been a Democrat, but I didn’t start out that way and who knows? If the Republicans at all resembled the party that they were in the mid-twentieth century, when states rights, personal and fiscal responsibility were the hallmarks of their platform, I may yet have continued to vote for their candidates. Like Barry Goldwater, who had little to no tolerance for religious extremists, Christian fundamentalists who twist and turn history to convince themselves that our founding fathers would have us become a theocracy and expect the Republican party to swear allegiance to their agenda. Or Bob Dole, who became a staunch supporter of Food Stamp Act in 1964 and the Americans with Disabilities Act in 1990. The key difference between the pre- and post-Gingrich era Republicans seems to be an understanding of poverty. Older, if you will, Rockefeller Republicans who lived through the Great Depression and World War II did not view poverty as a character flaw but something that can happen to anyone. Now working class Americans are, according to Romney, a group who consider themselves victims and have become dependent upon the government and whom Romney does not take into consideration. He’s written them, including my children and me, off.

How did the Republicans win the hearts and minds of people who directly suffer from the consequences of their trickle down policies? How is it that my friends can reasonably blame the Bush Administration for getting the economy in such an abysmal state and then turn around and want to fire Obama for not fixing it fast enough and, furthermore, want to hand the reins of government back to the Republicans who will return us to the policies that got us in this mess to begin with?

I don’t have the answer to that question because I cannot imagine voting for a party that has become so ideologically extreme and capricious with power when they have it. I don’t reward my children for behaving irresponsibly, so why would I do so with my vote?

Consider my second son, Hugo, to whom everything comes easily and who has required by far more of my parenting time, energy and creative approaches than all of my other children put together. From the time he was toddler until quite recently, he has resisted being held accountable for his actions. Even if he had done something on accident, say bumped into another child causing him or her to fall, Hugo could not stand to apologize and would get in more trouble for his reaction to being busted than for the initial infraction. But I’ve continued to hang in there with him, show him that his behavior has consequences while trying to cultivate in him empathy for others. Sometimes I’m less graceful at this than others. Just ask Hugo and he’ll happily tell you how I once chased him through the house and up into his top bunk bed only to tell him if he ever went to jail I wouldn’t bail him out. He’s now fifteen and last spring I found myself constantly having to ride him to do his homework, household chores and manage his money. He wanted me simply to give him money when he needed it, clean up after him, drive him where he wanted to go and, ironically, monitor his schoolwork.

We had gotten into a cycle that was, for me at least, chronically frustrating. I would tell him repeatedly to do his homework and housework, he’d repeatedly agree to do it, but then wouldn’t. Instead he’d make excuses as to why he didn’t do what he said he would and continue to ask for money and rides. When this cycle of him telling me what I wanted to hear but never delivering on it became clear to me, I pulled the plug. I stopped monitoring his homework and I made him pay in cash to have his room vacuumed and dusted. I also stopped giving him money and rides. If he wanted to be treated like a roommate, so be it.

Hugo relaxing between school and marching band practice.

But as his mother, it’s my job to push him and I did so by putting his passion on the chopping block. Hugo plays in multiple bands and sing in multiple choirs at his high school, but it’s not what he does, a musician is who he is. I never have to tell him to practice music but rather often need him to put down the guitar in order to do other things (like homework and chores). Beginning this fall, I warned him that if his grades slip below a 3.7 I will pull him from one of his bands. I don’t check online to see if his homework has been turned in, I don’t ask about his grades. It’s his responsibility to organize himself, he’s old enough. The result? Hugo is exercising more self-discipline and I’m not haranguing him. He has all As on his first grade card of the year. And he’s frankly more pleasant to be around. This only works because Hugo knows, from experience, that I am not bluffing. I don’t play poker with my children when I tell them what consequences they can expect for their behavior, both good and bad. I always follow through (and truly it can at times be harder on me than on them to do so when I have to follow through on consequences for the bad).

The Republicans love power, they love being in power. To be fair, so do the Democrats, but so far the Dems still seem to generally remember that the best interests of the country, not just the party, are why they are in government. As Andrew Sullivan pointed out in the September 22nd issue of Newsweek, a second term for Barack Obama may just shake the GOP enough to move them away from the extreme right cliff they’ve found themselves on and back towards the center where good government and the majority of Americans can be found.

By this time next week, we will know if more of the electorate agree with me or if, like my friends, they believe the unsubstantiated promises of the GOP. In hopes of a better night’s sleep tonight, I went first thing this morning to my county’s Board of Elections and voted for a second term for Barack Obama and will follow up by volunteering for the campaign in the days ahead. I hope you will all join me.

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I See You and You See Me

“Your daughter sees like a newborn,” said her eye surgeon, “even though she’s two months old.”

Two months old? Isn’t that the same as newborn or at least, newly born? Well, yes, in terms of adjusting to another child in the household. But in terms of brain development, two months old is, well, getting up there.

Lyra was born on August 14 with many markers of Down syndrome (DS) and cataracts in both eyes. Because I am 46, I underwent many prenatal tests, except an amniocentesis, while expecting Lyra. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when 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 baby had DS, Max and I passed on an amnio.

Superstitiously or intuitively, I was certain I would lose the baby if I had an amnio. My Grandma Dorothy, who was a mother to me, had four boys and I have four boys. Her only daughter, her second child, died at birth because of the Rh blood factor. Grandma had negative blood and her baby girl’s was positive. I too have negative blood and my daughter’s is positive, but since the 1970s there has been a remedy. After each of my babies’ births, I was given a RhoGam shot, which 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. I, too, kept trying for daughter (albeit with full support from my partner), and when I learned my fifth child was female, I felt an amnio 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 emotionally very strong about this connection. I still do.

Lyra was born on a Tuesday. On Wednesday, we were squeezed into an appointment at a pediatricians’ office affiliated with Akron Children’s Hospital (ACH). They referred us to ACH’s pediatric geneticist whom we saw on Thursday and before we left, a vial of Lyra’s blood was drawn for genetic testing. On Friday, the blood results confirmed Lyra’s Down syndrome. The following Monday we saw our first pediatric ophthalmologist, who sent us to a second surgeon, who immediately scheduled Lyra for surgeries at the tender ages of six weeks and seven weeks.

Why so young? Because a newborn’s brain is bubbling with growth and without any visual input, Lyra’s brain would not have developed all the necessary components to process what it is to have sight. The same can be true of hearing and the other senses. Neurologist and author Oliver Saks has written accounts of adults regaining hearing only to be miserably confused and want to return to the deaf world their brains’ knew and understood. In the Val Kilmer film, At First Sight, a blind man has an operation to regain his vision. In a poignant scene, he cannot make sense of glass and ends up breaking a window.

And that’s how Lyra came to have eye surgery at the tender age of six and seven weeks. Each eye had to be dilated for a week post-surgery to minimize scarring after which she began wearing contact lenses. She’s too young for surgical implants–her eyes are still rapidly growing. Her contact lenses are similar to mine and will be cleaned monthly and replaced every three months. The correction, however, is not at all similar—I don’t see very well without my glasses or contacts as my prescription is about a -4. Lyra’s prescription is a +20.

Lyra after her right eye had the lensectomy. That eye is clear while the left has the visible cataract she was born with.

Oddly, I did not think of Lyra as blind until the first cataract was removed. But she was. When she was a month old and coming out of the newborn sleepiness, we noticed her eyes were starting to wander around, each rambling about in its socket. Her brain was becoming the brain of a blind person.

Only one in 10,000 kids with Down syndrome are born with cataracts, though most kids with cataracts have DS. Of all the possible and serious medical problems attendant to DS (heart problems of varying degrees of severity occur in forty to sixty percent of people with DS), we are grateful cataracts is all Lyra has to deal with. We felt that way immediately and said so to the ophthalomologist the first time we met him. Just as soon as he put her second contact in her left eye, her eyes began tracking in sync, her brain quickly discovering how to process all the visual stimulation she is now receiving.

After receiving both contact lenses, Lyra gobbles up all the visual stimulation she can get.

She has now been wearing both her lenses for one week and it is as if she has been awakened. She searches for our faces when she hears our voices, looks at our eyes and smiles. I loved my blind girl fiercely, but this smile of recognition by my now seeing daughter is incomparable to any other I’ve known. No lover has melted my heart with a single gaze the way this recently born peanut has.  Many years ago, when my big boys were wee, I learned a children’s song in which the verse goes, “I see you and you see me, la-la-la-la-la-la-la.” When I sing it to Lyra, as I often do lately, it is not a sweet, meaningless ditty. It says everything about the first two months of our life with Lyra and hers with us.

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Is Anybody Out There?

My family gets a daily newspaper delivered to our home every morning and, as we all stumble down and pour our coffee (everyone down to Jules, who’s 12, have a morning cuppa), we call out who gets the comics first, second and so on. The kids read most of the strips I don’t (or don’t often), such as Garfield. I read ones that they don’t, such as Doonesbury. I get it. When I was in college in the late 80s-early 90s, I had friends who read Doonesbury regularly, but I couldn’t keep track of all the characters and didn’t know their histories and it didn’t seem worth trying. That is until George W. Bush was president and was depicted as a floating and frayed Roman helmet.  I still don’t know the storylines of most of the characters prior to the Bush II administration, but I have continued to read Doonesbury daily.

And as I start this blog, my first that is not a class assignment or private loop to connect with other writers, but a put it out there public blog, many of Gary Trudeau’s latest strips concern a previously successful writer, Rick, who now finds himself blogging for free on Huffpo. His wife is a successful political operative, his ne’er-do-well son has a runaway bestselling (wholly fictitious) memoir, while Rick struggles to even gain access to interviewees. So blogging is like hitting bottom for writers, or traditional writerly types.

Which raises a question: Does anyone else in their 40s feel caught between the new and old? I wrote my high school, and many of my undergraduate, papers on an electric typewriter. We had to look things up on the card catalog in the library (remember how they smelled? Closed up trays of paper, exuding the possibility of anything you wanted to know), haul books home and search for the facts to back up our assertations. But computers and the internet came while we were still young enough to grab on and switch gears. Today my own children have to do something called “dialecticals” whenever they have a reading assignment in high school. Very busy work, in which students must cite usually 30 passages in the book and explain why they are important to the piece, which is designed to minimize oh-so-easy online cribbing. Are paperbound Cliff Notes even still published? I can no longer write with pen and paper for any length of time, but I agonize at the thought of publishing becoming an entirely (or mostly) electronic media. I once crafted an entire (Flintstone-esque) living room suite of furniture using all my boxes of books I had yet unpacked after moving. I had a couch that could seat four, a coffee table and a recliner. I should have taken a picture, which would have been with a camera containing film (sigh).

But back to blogging: Unlike the fictitious Rick, I don’t have a successful writing career in my past. I’ve written successful academic papers, grant applications, newlsetters and so on, but I haven’t received paychecks strictly for my writing. I’m starting at the bottom. Many of my big plans have shifted over the nearly 19 years I’ve been a mother. Most recently, Max and I decided to have one more baby so that two-year-old Leif would have a sibling to grow with at home after all his older brothers had gone off. We assumed that before this last baby was born I’d have fulltime employment with benefits–career employment. We assumed incorrectly.

So here I am trying to write with small children at my breasts and knees (at least my breasts aren’t at my knees, not yet). I’m not an overachiever, try as I might to be one, so blogging feels about right. And since I started Whoopsie Piggle, all of a week ago, I find I’m thinking once again like a writer.

My 18-year-old son is coming home from college this weekend and I plan to have him help me with the technical aspects of this new endeavor. Unlike the blogger in Doonesbury, my boy won’t make me feel out of touch. Of course, my boy hasn’t published a runaway bestseller either. Not yet.

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Sunday Morning Start (Monday Evening Finish)

Blogs, hmm, who does that?

I have found the few mom blogs I’ve viewed are often intimidating or annoying–who has the time to cook fresh meals from scratch (locally grown, organic ingredients), hand wash cloth diapers and start a charity for children and their families? Hippie Martha Stewarts. Right, except there is that fantasy lurking in the depths of my soul too. Clean, yet quirky home. Artistically talented, yet always polite children. Very accessible mom who also has a successful career. Whoa, so what I don’t like about these blogs is probably what I want but haven’t managed to manifest. I stopped looking almost instantly.

Besides, who wants to be boxed into a mom-blog? Ah, Doris Day in Please Don’t Eat the Daisies is told by her husband, David Niven, that she is so much more than a housewife. “All housewives are,” she tells him. That was in 1960. Does anyone call themself a housewife today? I doubt it, but the bill of goods my generation was sold was have it all–career, children and great style. And make your parenting attachment style. And your career creative and lucrative and your style flippin’ creative as hell. Yeah, well, it seems the sales force was setting us up for failure or at least abiding frustration.

Here’s my reality:

I’m a 46-year-old mom of four boys, ages 18 to two years old, and one daughter who is six weeks old. Truly, had the two-year-old been a girl, I’d have stopped there. But I just knew this one would be a girl (yeah, so what if I’ve been wrong before?) and when our daughter was born last month the first question I asked the midwife was, “Is there a vagina?” She told me to just look myself. Yep, the ultrasound had not lied, girl, girl, girl! Yippee! I held our girl and we looked at her. Bluish, alienesque newborn, as they all are when they first pop out, we quickly noticed some other things. “Her eyes look Downsy,” I told the midwife. She calmly told me she’d do a newborn exam in a few minutes. The skin on the back of her neck was voluminous, when she turned her head she looked like she had a handle of flesh back there. And her pupils were ghostly white.

Our girl was born with Down syndrome and bi-lateral cataracts. She has been the primary focus of life this past month and a half, but not our only focus.

My oldest son, the first three children are from a previous marriage, went off to the University of Michigan ten days after his sister was born. The second boy is in the throes of marching band season and puppy love with a young woman who lives in Montreal (we are in O-HI-O), the third boy is working through hard issues with his father while the two-year-old is just that, replete with tantrums and an explosion of language and ideas.

Claude, Hugo, Jules, Leif and Lyra. Until I was in my late 20s, I swore I’d never have kids. I was my mother’s only child and neither of my parents impressed me with their parenting. Frankly, I was afraid of becoming a mother. But the urge kicked in when I was in my late 20s (hormones perhaps, mixed with a crazy love) and now here I am, the mother of a family considered large by most American standards.

I’ve been looking for fulltime work for five years. I received my MFA in creative writing at the end of 2010 in the worst economy I’ve ever lived through (and unless you are 90+ or from Brazil, it’s the worst economy you’ve lived through too). Last year, I worked at the local Waldorf school, where my kids  attend(ed) but the cost of two babies in daycare is $300 more a month than I was making. So I’m telling myself I’m on Maternity Leave (italics make it more official). I’m figuring out what’s next as things feel like a new segment of life is unfolding. One child launching, one arriving with a genetic disorder. I love having a job, feeling useful, collecting my pay. But if I’m on Maternity Leave I can ease up on the job hunt and start this blog, clean some closets, maybe even read some books. All while learning what Lyra’s needs will be long term.

It was a month before Lyra was born when a friend suggested I write a blog. It was all I could do to not impolitely dismiss her idea out of hand. But the idea geminated and I was given encouragement by my partner, Max (who is Leif and Lyra’s father). Claude started a blog as part of his homework for one of his college classes using WordPress and said it was easy to set up. And other than getting past all the ways I can give WordPress money, it was.

So here goes (yeah, the first post is mom-blog-ish).

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