“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.
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.
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.
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.
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.
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!!!
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.
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.
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.”
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.