A Girl Like Jo Jo

I meant to write a post in honor of World Down Syndrome Day yesterday. I really did. But I woke up to a flooded downstairs bathroom (turns out there was a small leak in the kids bathroom upstairs) topped off by Geoffrey running a 103 degree fever in the afternoon due to an ear infection. To say the whole day was shot would be an understatement.

This morning I sat at my computer, Geoffrey squirming on my lap and Teddy climbing all over me while I scrolled through Facebook status updates glumly looking at pictures of other families celebrating WDSD. I don’t usually read many blogs, but I stopped at one to view pictures of a gaggle of toddlers with Down Syndrome congregating at a Florida beach. They looked so clean and fresh and…happy. I could never get shots like that. My kids would be covered with sand and snotty nosed and screaming as they fought with each other over beach toys.

I was just about to start silently berating myself about being a bad mother (after all, couldn’t I have taken my kids to a local beach yesterday?) when Teddy pointed to the computer screen and said, “Look, mommy. It’s a girl like Jo Jo.”

I looked and did a double take. He was pointing to a little girl with Down Syndrome.

It was a bit of a shock. Teddy and I have never had a talk about Down Syndrome before, and as far as I know, he doesn’t have a clue that there’s anything “different” about Jo Jo, anything that sets her apart from typical kids. Then I wondered if maybe I was over analyzing the situation, that maybe he was simply pointing out there was a girl in the picture around the same age as Jo Jo.

“You’re right,” I said brightly. “And look, next to her, there’s a dog like Ivry.”

He shook his head. “No,” he said.

“That’s a dog,” I said encouragingly.

“But Ivry’s bigger Mommy,” he said in his sing song voice. Then, solemnly, “And black. That dog’s brown. And little.”

I didn’t really know what to say. As I scrolled down the pictures, he pointed to another little girl and said, “Jo Jo. That girl’s like Jo Jo.”

Sure enough, it was another little girl with Down Syndrome.

 “That’s right Teddy,” I said. “She’s like Jo Jo.”

He was staring at the pictures thoughtfully. “They’re all like Jo Jo,” he finally said.

“Yes,” I said. “They are.”

I left it at that. As bright and perceptive as my two and a half year old son is, I’m not sure he’s ready for a whole discussion yet about Down Syndrome.

To be honest, I’m not sure I’m ready.

But it’s there, the knowledge that my small son realizes something about his sister is different. Right now, it probably doesn’t seem like a big deal to him. He’s still in his bubble of innocence, and if Jo Jo ambles along doing things at her own pace and in her own way, it doesn’t seem to faze him at all. He’s still too young to understand the way the world works, how it views children like Johanna in a completely different prism than how it views typical kids like Teddy or Geoffrey.

I dread when that time comes. I want these moments to last forever, watching my two eldest children hold hands as they chase the dog around the house giggling. I want Teddy to always see his sister as he does now: as his confidante, his partner in crime, his best friend.

That all will change, I know. On Sunday, I spoke to a mom who has 12 year old triplets, one of whom—her daughter—has Down Syndrome.

“How do the boys interact with her?” I asked, thinking, of course, of my two boys themselves.

She was honest. They adored her, and were fiercely protective of her. She told me about how one, every time he passes by her daughter at home, bends down and gently kisses her on the top of her head. But sometimes, when they’re out in public with her, it’s a different story. “They’re in middle school,” she shrugged. “When you’re that age, you want everyone to be the same. If someone sticks out, it’s embarrassing.”

I don’t want to think about that time, those moments a decade from now when Teddy and Geoffrey look at their sister and feel a twinge of something—shame, maybe, or annoyance.

After all, these moments happen with all siblings, and there will be many more moments when my sons look at my daughter and are filled with love.

But still…I’d be lying if I said I didn’t want to be at this place yet. Sometimes, as stressful and overwhelming it can be, I prefer the simplicity of babyhood.

Happy belated World Down Syndrome Day.