From a Syndrome to a Son

It’s hard to write about Down syndrome every day.

I know that’s not the rule during 31 for 21, but I feel obligated to at least address it, as much as I can.

And like others have said before me, I think the fact that I can’t write about it every day says a lot.

Yes, Down syndrome is a part of our life, it’s a part of who Leo is, but it doesn’t define him.

This wasn’t always the case. There was a time when I thought about Down syndrome nearly all the time. There wasn’t a day that I didn’t wake up, roll over and think “my baby has Down syndrome.” And yes, I was sad about it. I'll go ahead and say that I was full-on depressed about it. I woke sad and I went to bed sad.

In the mothers pushing the designer strollers through my Brooklyn neighborhood, I saw everything that I lacked. I didn’t get the “perfect” baby. While other babies started to sit and crawl and pull up, mine wasn't doing anything when he was supposed to. And I wondered if he’d ever do anything. Or if I'd ever feel like my old self again. Or if I'd ever think about anything but Down syndrome and how much I hated it.

But somewhere there was a shift. And I credit Leo for much of this. Sure Leo is challenging sometimes (what kid isn’t?). His language delay certainly complicates our communications. He gets frustrated. We get frustrated.

I hate that Leo requires annual blood draws to check his thyroid and CBC, that he has a 20 percent chance of developing leukemia, that for a few years we had to take him to the ENT every six months, eliciting hysterical cries from him when he had to be held down and examined (I think I still have some bruises from those brutal appointments). I hate that he had to have eye surgery at age three. I hate how raw and red his cheeks get in the winter time. I hate that Leo is five and he still often runs away from me in public places. Yes, I attribute all these things to Down syndrome.

But ultimately, I think the good outweighs the bad. And Leo is just Leo. He is a champion hugger. He loves to laugh and entertain. He is turning into a great little student who works hard in school and delights in pleasing his teachers and therapists (he's way better behaved for them than he is for me!).

Leo is a boy who happens to have Down syndrome. When you first get the diagnosis, whether it’s prenatal or you’re staring down at this foreign little newborn, it feels like all they are is a diagnosis. The baby is just Down syndrome personified.

And somewhere along the line they become people. With strong preferences and opinions. With senses of humor and preferred people and places and animals. The babies who love frozen blueberries and vanilla yogurt and crinkled up newspaper become little boys who love scrambled eggs so much that they eat them with their eyes closed. They become little boys who like to zoom around the house in a super hero cape, and play “Murderball” with a doll stroller. They become little boys who like to bake pumpkin bread and take their dog on a walk. They become little boys who flat our adore their little sisters (because teasing and torment is a sign of love, right? Right?).

Now when I wake up in the morning, I’m just grateful if the kids are still asleep (anything that will buy me fifteen minutes of peace to make breakfasts and lunches) and that the dog didn’t have an accident in the dining room and that I remembered to buy half and half for my coffee.

Most days, Down syndrome is really the last thing on my mind.