posted Thursday October 21st, 2010

I love the new Sesame Street song! In case you haven’t caught it, I’ve posted it here. It gave me a reason to crank up the way-back machine and dig up a piece I wrote when Sophie and Annabelle were much younger. Today, their hair isn’t all that different. (Isn’t that interesting?! Actually not so much — most curly-headed 2-year-olds don’t stay that way I know now), But when Annabelle was a toddler, she had an amazing head of curls. Sophie did not — and will not. That inspired this piece:

When Annabelle was a few months old, her straight brown hair fell out and she was bald. Ray and I watched her head for signs of curls, because in our house, hair is a big deal. Specifically, curly hair.

Both Ray and I had transformations when we learned to let our curly hair be curly. For me, that happened my junior year in college, when I spent a semester in London and got a spiral perm – going to the other extreme from my previous hairdo, which required hours with the blow dryer, round brush and curling iron.

OK, so with the perm I looked like Dee Snyder from Twisted Sister, but that was stylish in the late 80s, and finally, I felt good about myself. I dated cute boys all summer.

Ray won’t tell me exactly when his mother stopped blow drying his hair. I asked once and he got a funny look on his face and said, “You’re going to write about this, aren’t you? No way am I telling you anything.”

No matter. When I met Ray, he had dark curly hair and everyone told us how cute it was that someday we’d have a little baby with curly hair.

We did. By the time I was pregnant with Sophie, Annabelle had a full head of perfect blonde ringlets. Old ladies in Target would stop me to ask if I used a curling iron on my 2-year-old’s hair. No, just a bottle of No-More-Tangles at a time. When Annabelle’s hair is wet, it stretches almost to her butt. She loves to shake her curls. She knows they make her special.

And so when Sophie was born, I only had one question for the geneticist: Do people with Down syndrome ever have curly hair?

Even now, I can’t believe the words came out of my mouth. From the look on his face, neither could the doctor, a sweet older man with a booming practice and a packed schedule. It took months to get in to see him, and in that time, my husband Ray had become one of the world’s leading authorities on Down syndrome. Before the doctor joined us in the exam room, we met with a genetics counselor who gave us some history. “Down syndrome was first identified by a man named J. Langdon Down in the 17th or 18th century,” she started in a well-rehearsed spiel.

“Actually,” Ray said gently, “It was 1866.” After that, Ray did the talking and the genetics counselor took notes.

Since Sophie was born a year, I’ve taken a much different approach, which is weird, since Ray and I are both journalists, both in the habit of soaking everyone and everything for information on any given topic.

But this time, I don’t want to know. When I was little – and even now, sometimes – when I’d hear a noise at night, I would pull the covers over my head, confident that if I couldn’t see it, it couldn’t hurt me. It’s not smart, but it’s instinct — yes, there’s a difference — and I feel myself doing it now.

When I had the chance to take the amnio, I didn’t. I didn’t want to know. And now that Sophie’s here, I don’t want to know. I don’t want to know what’s lurking behind the corner, in the dark. I can only live with my baby in the present, and love her as much as I can and get her what she needs today. She’s needed a lot, so far – a feeding tube, open heart surgery, therapy three times a week. Eccocardiograms, medication. For months, we couldn’t lift her under her arms. (Think about how you always lift an infant.)

And now, one of those bands to fix her flat head.

With each challenge, I take a deep breath and focus on the immediate. I don’t think about — can’t think about — next month or next year or kindergarten or when she’s 18. I tell myself I can handle anything that comes along, and so far I have. If Sophie’s not like the rest of us, if she’s not like Ray and Annabelle and me, that’s okay. I just don’t want to know about it in advance.

Except for Sophie’s hair. I want to know about her hair.

The day before Sophie was born, I had an ultrasound. The technician never saw the hole in her heart, but she pointed out my baby’s hair, floating in the amniotic fluid. It was beautiful, and so is Sophie. She has a full head of straight hair. When the babysitters play with it after a bath, they can work a cowlick in. One of the residents in the pediatric intensive care unit said she looks a lot like Conan O’Brien. It’s true.

I keep watching for Sophie’s hair to fall out, to be replaced with thick ringlets like her sister’s. That sounds so ridiculous, almost cruel, to focus on something so petty when this child has a six inch scar running down her tiny chest and a future, if she’s lucky, bagging groceries. But selfishly, instinctively, I want her to be just like us. I want her to have curls. Not the kind you get from a perm or an iron, but real curls — snaggled-at-the-back-of-the-neck, need-to-be-coaxed-with-conditioner, on-the-verge-of-dreadlocks, don’t-touch-I’m-in-the-critical-drying-stage curls.

I don’t have curls anymore, not really. About halfway down that list of things no one ever tells you about pregnancy is a brief mention that your hair will change. I can barely get my hair to curl anymore, particulary given my time limitations in the morning. I love to say that Annabelle took my curls, and I’m happy she has them.

But I can’t give my curls to Sophie.

The doctor stared at me. Then he explained that people with Down syndrome do not have curly hair. African-American hair might wave a little, but otherwise, no.

I hadn’t read any of the books or surfed the web sites or talked to the parents whose names we get regularly, but I knew before I asked that Sophie’s hair would never curl, and I knew that there were so many things about Ray and me that I already see in Annabelle that I’ll never see in Sophie. But there will be hints, like in Sophie’s cowlick, or the waves that pop up just behind her ears.

And for today, that’s okay.

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Tags: Filed under: Down syndrome, family by Amysilverman

7 Responses to “Curls”

  1. I love this Amy. Sophie has taught you how to live.

  2. I love Sue’s comment :)
    I’ve noticed that very many children with Down syndrome look alike! Kayli has hair that people often comment about how beautiful it is- it is thick and glittery and do you know what I do for curls? I braid her hair into two or three braids, often pull three braids into a ponytail and leave them there without brushing for a couple of days. She gets a nice, poofy, intense wavy look that is fun for variety. Everyone always wants what they don’t have with hair!

  3. so true — we all want what we don’t have!!! and sophie does currently have a bit of wave.

    sue, particularly considering the source, your comment means a lot to me!!!!

  4. Add the “no curly hair” to the long list of mysteries about DS. It truly is a fascinating, in so many ways. Now if only they could locate the stubborn gene on the extra chromosome!!!

    Leo has amazing hair. Thick and mostly straight with just the right amount of wave (can you tell I covet straight hair?). You always want what you don’t have–aint that the truth!

  5. O.K., this post is interesting to me for several reasons. First, I too have a dark, curly-headed husband, and a daughter with curls and a daughter without. I get the whole curl thing. But when it comes to not thinking about the future, I am your polar opposite. I am always tempted to sneak peeks of the future. Especially if I am scared. I approach the future, and any fears I might have about it, the same way I approach swimming in Lake Michigan during our summer vacations. I really don’t like to prolong the splash of cold water on my skin, so I usually dive in to get it over with quickly. But your post reminded me of an afternoon last summer when I was with my teenage daughters and their friends; we were walking into the waves, shrieking as the chilly water splashed higher and higher up our legs, and I told them maybe we should consider this a spiritual practice – maybe we should try wading into the waves with the intent of making the unwanted, wanted. They followed me into the water and we relaxed and held our arms wide open and instead of shrieking, we whispered,” Bring it on.” Until we arrived into deep water, warm and snug, bobbing in the waves.

  6. Beautiful post, Amy

  7. Um, hate to burst that doctor’s bubble but my daughter is african american, 3 1/2 years old, and has curly ringlets of light brown hair. I was doing a search to see if this was common among children with down syndrome as she is very light skin and her hair color does not run in either family.

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