World Down Syndrome Day by Lauren Ohnesorge
The call came just as I was pulling onto Ridge Road, my regular workaround way to the office as I try to avoid Crabtree traffic at all cost.
“Are you sitting down?” she said.
“I’m in my car, driving to my office.”
And she just started talking. I kept driving, remarkably. Even circling in my office parking lot as I turned back on Glenwood to head back the way I came on I-440.
“Something’s wrong,” I told my editor. “Something’s wrong with the baby and I can’t work today.”
“Go home,” he said. “Keep us updated.”
My hands were shaking on the steering wheel as I kept driving. I called my husband. I called my father. I kept driving, all the way back to Knightdale in rush hour traffic.
The next few hours were a blur. I paced with Ellie – my (now 19-year-old) Sheltie mix – in the yard.
Somehow we were turning into a building next to Wake Med.
There were conversations. Tests.
A big one with a needle because it was too early for the other “big test with a needle.” It was called a CVS test, and in a week, they could basically count the baby’s chromosomes.
How many babies are carried to term with this condition? We asked. Oh here over half, we were told.
We were give two websites. The dark website, where women talked about the tough choice they had made and how deeply it impacted them – but most were confident with their decision. And the happy website, with photos of families and kids with wide eyes.
We knew nothing.
The doctors and nurses were amazing. The people on the phone who called me about scheduling “decisions” who were telling me that, in the state of North Carolina, I was “running out of time,” were not so amazing.
It passed by in a blur and none of it was happy. At the anatomy scan, which we had to schedule early (because male politicians had decided they needed to be part of the process, I guess), most women are looking to catch a glimpse of what their baby would look like. We were looking for nasal bones and something called a nuchal fold. We were looking to make sure it had a face (we had been given an initial diagnosis of T13, which, thankfully, was not accurate, but exacerbated our paranoia), had a heart.
It wasn’t fun or heartwarming or touching.
We didn’t know it was Henry.
When we actually met Henry, he hadn’t had a great day, honestly. And neither had I. His heart rate had dropped, and my blood pressure had tanked. I was in and out of consciousness, and he was purply and goblin like (though the cutest goblin in an ever). But he liked us. It turned out he liked us a lot.
We watched Golden Girls and listened to “Shakedown Street,” and we were a family that first night at WakeMed.
Children with Down Syndrome aren’t always happy. They don’t just go to “special people.” They are little punks just like the rest of us (albeit cute punks). They’re really just children.
A friend I met at a Buddy Walk right after the diagnosis (pro-tip – don’t go to a Buddy Walk right after your diagnosis, you might be a basket case) told me her kid was just a kid, but I didn’t get it.
I get it now.
Today is World Down Syndrome Day and while we’re celebrating our kids, we’re also celebrating our families and what we’ve learned along the way.
We’re also eating cupcakes. With blue dye. On school picture day. Oops.