Up the Down Staircase

A New Times writer tells one family's unique story about life with Down Syndrome, and then shares her own

And so now I'm going to do something I've never done, in my nearly 12 years at New Times. I'm going to write about myself. I cringe as I write that, because Paul and I and our other colleagues have, over the years, made great fun of other writers and editors who have shared private details of their lives in the pages of New Times. But there's no other way to tell this story, because if I'm going to tell it, you're going to need to know that I have my own baby with Down syndrome.

Actually, Sophie's not a baby anymore, she's a year and a half old. But she still seems like a baby. She doesn't walk or talk or even crawl on all fours, although I bet she could commando crawl her way across Fallujah. Last week she figured out how to press the buttons on her musical toys, and she sways to the songs, beaming.

My husband and I have a 3-year-old, too, a little girl named Annabelle who does not have Down syndrome. Both girls are a joy, sometimes in different ways. When we went to San Diego this past summer, Annabelle refused to step foot on the beach, announcing, "It stinks!" (She's right.) Sophie sat in the wet sand, cracking up as the water lapped her toes. She let me make her into a dribble castle.

Every little girl hates to get their hair combed, and Tia's no exception. Tyler observes.
Every little girl hates to get their hair combed, and Tia's no exception. Tyler observes.
Kevin and Tyler wait to get the baby a flu shot.
Kevin and Tyler wait to get the baby a flu shot.

It's ironic that I had a baby with Down syndrome, since I am not a very nice person. I have a button on my bulletin board at work that says, "If at first you don't succeed, you'll be a loser and a burden on society for the rest of your life."

I've had to put my nice-guys-finish-last philosophy aside -- at least at home -- because Sophie is without a doubt the happiest human being I have ever encountered, and just being around her makes me feel good. If I could bottle her joy and sell it, I would be very wealthy.

That doesn't mean I'm totally adjusted to the idea of having a retarded child. The other evening, at bedtime, I was reading Sophie a book called Moo, Baa, La La La, and my eyes landed on a book I had put on her shelf before she was born, the young adult classic A Wrinkle in Time by Madeline L'Engle. I was suddenly sad, thinking that Sophie probably will never understand one of my favorite stories.

I have moments like that nearly every day.

Sophie's great. I wish you could meet her. If you did, you wouldn't feel sorry for me. Not that I haven't spent a lot of time, since she was born, feeling sorry for myself.

Just the other day, my husband looked at me and said, "Having a kid with Down syndrome isn't such a big deal."

We were sitting on the family room couch on a Wednesday afternoon, home together on a workday because Sophie had just had surgery to Roto-Rooter her clogged tear ducts and to check her hearing. Normal kids have clogged tear ducts, too, but babies with Down syndrome have smaller openings (small nasal passages, ear canals, tear ducts), so they suffer from the problem more often. Ditto with the hearing. Small ear canals mean more of a likelihood for infection and fluid buildup.

This was not Sophie's first surgery. Like Tia Huff, Sophie had open-heart surgery as an infant. The surgery was successful, and Sophie's fine, but I don't think I'll ever recover from the two weeks in pediatric intensive care or the fact that I had to shove a feeding tube up my baby's nose and into her stomach when she was two months old. After that, for several months, Sophie wore a device that looked like a football helmet to reshape her funny-looking head. The helmet rubbed a raw, bloody patch on Sophie's scalp, like the hot spots our golden retriever gets. It was a mess. Like the Huff kids, Sophie gets a lot of therapy. She has physical therapy three times a week, occupational and speech therapy once a week each, and she's even got a therapist, called an "early interventionist," who teaches her how to play. She has this horrible thing called a stander that we have to strap her into, so she can one day bear weight on her feet by herself.

All of which is to say that, yeah, having a kid with Down syndrome is a big deal. I wouldn't trade Sophie for the most typical kid in town, but I know that I don't want another child with Down syndrome. I don't want to put another child through the health risks, and frankly, I'm not sure my mental health could take it.

I also know, with equal certainty, that I could never terminate a pregnancy simply because the fetus had Down syndrome. I couldn't even turn away a fertilized egg with Down.

Frankly, I'm not sure I want a third kid. I vomited my way through every single day of my two pregnancies. But my husband really wants one -- he's always wanted three kids -- and since they haven't yet perfected the synthetic uterus that would allow men to bear children, we're in negotiations. Before Sophie, the only thing I knew about Down syndrome was that it's called "Down syndrome," not "Down's syndrome," because once, years ago, I overheard a heated hallway debate at work between two editors. I never watched the show Life Goes On. I ignored the retarded clerks at the grocery store; they made me nervous and sad.

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