From the look on his face, neither could he, a sweet older man with a booming practice and a packed schedule. Instead I focused on the day to day. Sort of like a fortune-teller.
No, just an entire bottle of No-More-Tangles. I really only had one question left for him: The doctor stared at me.
She knew they made her special. No way am I telling you anything. I looked down at her, strapped carefully into her carrier in her sweet pink-and-white onesie with her straight hair, and knew what I had to do. She loved to shake her curls.
I wanted to know about her hair. There was no other option. I dated cute boys all summer. Scariest of all, a few days after this appointment with the geneticist, she was scheduled for open-heart surgery. And so was Sophie when she arrived, right down to her full head of straight hair.
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.
In our house, hair is a big deal. Do people with Down syndrome ever have curly hair?
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?
And so, I wanted her to have curls. Would her hair ever curl? The day before Sophie was born, I had an ultrasound. When you have a baby with a genetic disorder, they send you to see a geneticist. Before the doctor joined us in the exam room, we met with a genetics counselor who gave us some history.
I picked up the infant carrier with this foreign creature inside, and we went home. I have to admit that I felt a little cocky for having figured it out—but mostly, I just felt sad.
Specifically, hair that curls. And dizzy, both literally and figuratively. I survived by taking deep breaths and focusing only on the immediate.
I decided I could only live with my baby and learn to love her and get her what she needed. Cooing at appropriate moments. The hair was a symbol of all the ways she would continue to be different from us. 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.
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.
Sophie would never have curly hair.
Selfishly, instinctively, I wanted her to be just like us. 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.
I was going through all the paces that a new mother takes, feeding Sophie, clothing her, rocking her, keeping her alive. Then he explained that people with Down syndrome do not have curly hair.
She lives in Arizona with her husband Ray and daughters Annabelle and Sophie. For weeks afterward, my husband Ray and I watched her head carefully for signs of curls. Echocardiograms, rows of pill bottles, a mini-hospital set up in the nursery.By Sharon Holbrook.
We bought my son’s dresser when I was pregnant with him, my eldest. The blond-wood dresser matched the crib, and it used to have a changing pad attached to its top. Download-Theses Mercredi 10 juin Archives and past articles from the Philadelphia Inquirer, Philadelphia Daily News, and fresh-air-purifiers.com Get the latest breaking news across the U.S.
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