The New Order News from the home front: I have finally recovered from the flu. I'm working on a very long article for The World of Fine Wine which ought to have been finished by now but for the flu.
When you have a baby with a genetic disorder, they send you to see a geneticist. Sort of like a fortune-teller. I really only had one question left for him: Do people with Down syndrome ever have curly hair?
In our house, hair is a big deal. Specifically, hair that curls. For weeks afterward, my husband Ray and I watched her head carefully for signs of curls. Perhaps Ray and I are so obsessed with hair because both of us 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 had required hours with the blow-dryer, round brush, and iron.
Okay, so with the perm I looked like Dee Snyder from the heavy metal band Twisted Sister, but that was stylish in the late s, and finally, I felt good about myself.
I dated cute boys all summer. No way am I telling you anything. No, just an entire bottle of No-More-Tangles. She loved to shake her curls. She knew they made her special. But what about Sophie—so tiny in her carrier, with straight black hair and a feeding tube up her nose, chromosomally challenged and days away from open-heart surgery?
Would her hair ever curl?
From the look on his face, neither could he, a sweet older man with a booming practice and a packed schedule. In the time it took us to get in to see him, Ray had done his own homework on the topic of Down syndrome.
Before the doctor joined us in the exam room, we met with a genetics counselor who gave us some history. After Sophie was born and we got her diagnosis, Ray and I took very different approaches, which is weird, since he and I are both journalists, each of us in the habit of soaking everyone and everything for information on any given topic.
Instead I focused on the day to day. I decided I could only live with my baby and learn to love her and get her what she needed. Echocardiograms, rows of pill bottles, a mini-hospital set up in the nursery. Scariest of all, a few days after this appointment with the geneticist, she was scheduled for open-heart surgery.
I survived by taking deep breaths and focusing only on the immediate. I wanted to know about her hair.
The day before Sophie was born, I had an ultrasound. And so was Sophie when she arrived, right down to her full head of straight hair.
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