Amy Silverman: Some things you can't change

June 29, 2012

KJZZ Commentator Amy Silverman shares stories about her daughter Sophie, who has Down syndrome. She blogs at Girl In A Party Hat

It happened in Paradise.

Paradise Bakery, to be exact. The girls were getting lemonade from the fountain while we waited for soup and grilled cheese. Annabelle stuck a straw in her cup and announced, "Sophie says she doesn't want to have Down syndrome."

I looked down at my younger daughter. "It's true," Sophie said.

Ever since her pre-school teacher told me she was one of the brightest kids with Down syndrome she'd ever seen, I've worried about this -- worried that Sophie would be just smart enough to know she's not smart enough. Whenever she's talked over the years about wanting to drive a car or have a baby or be a dentist, I've cringed, waiting for the day when she realizes none of that will happen for her.

I've worried about this -- but I thought I had more time. After all, Sophie just turned 9.

We sat down at a booth, where I absentmindedly picked at a white dinner roll (forgetting I've given up carbs). I didn't know what to say. Finally I asked, "What don't you like about having Down syndrome?"

"I want to be taller," Sophie said around a mouthful of grilled cheese.

I wasn't surprised. Sophie isn't just the shortest kid in third grade, she's shorter than just about any of the kindergarteners at her school. On her birthday this year, I got out the thickest Sharpie I could find and posed her in front of the height chart in our playroom, ready to mark her progress.

My heart sank. She hadn't grown. Not at all. In fact, it appeared Sophie had actually shrunk a bit -- which obviously couldn't have happened. I must have cheated a little last year. I distracted her with a game of Go Fish, but I knew it bothered her.

Of all the things associated with Down syndrome, I'm most comfortable talking about height. "It's okay," I told Sophie. "We're all short in our family."

Annabelle shook her head. 'That's not all it is," she stage whispered from behind her hand. It's about being, you know, different. She's been talking to me about it for a while."

"How long?" I asked. Annabelle shrugged.

At home later, I asked Sophie if it was okay to tell her dad about the conversation. She nodded.

"Oh, Sophie," Ray said. "You just can't worry about that. It's like wishing you were a boy instead of a girl."

I thought that was a pretty good answer. Last night, when Sophie crawled into bed with us and started kicking me, I didn't try to get her to go back to her own room. I was awake anyhow, thinking.

The truth is that in this world, you can change almost anything about yourself, if you want to enough. You can even become a boy instead of a girl. But you can't change the fact that you have a genetic defect that lowers your IQ -- and your height.

I think I'm going to have to get Sophie a shrink. And maybe one for me, too.

I told a friend what happened. Her response was sweet and heartfelt. "Sophie is Sophie because she is Sophie and this is why the world has fallen in love with her," she said. "Who needs more, really?"

Apparently, Sophie does.