Having a Sibling With Down Syndrome

Nathaniel and Serena, Eric’s older brother and sister, arrived in Seattle last week to visit me before school starts. They got in my car, looked around, and then at each other.

“It feels weird without Eric here,” Nathaniel said finally, seeming a little lost without the familiar presence of his little brother, a kid eight years younger than he is and with Down syndrome. Eric didn’t make the trip because of the ladder to my little house’s 2nd floor, where the kids were to sleep during the visit. He’d be unable to scale the ladder, and I pictured him falling through the ladder-hole in the 2nd floor to the hard tiles below. No. My house is not Eric-safe.

For the next several days Nathaniel and Serena proceeded to include the absent Eric is almost every conversation. Nathaniel’s Wii avatar was called Thamok, Eric’s approximation of pronouncing his big brother’s name. Every time they played Wii (all day, every day), Eric’s spirit was invoked and I’d hear cries of “Go, Thamok!” as both kids shouted at the Wii screen. And when Serena wanted to enter a room she’d call, “Na-nock,” Eric’s word for knocking at a door. I’d hear her from the next room sometimes, just saying, “Na-nock,” for the hell of it.

Eric’s presence was inescapable. Eric is a huge part of his siblings, one that they clearly missed greatly. I couldn’t help but notice this and decided to interview my kids on What It’s Like Having a Brother With Down Syndrome.

Big. Mistake. Ever want to hear your words repeated back to you verbatim? Then interview your kids on a subject. Any subject. Go on, pick one. (Upside: at least you know they’ve been listening to you.) And then type their answers.

What do you like about Eric?

I like how he’s different from other people but I don’t know what’s going to happen to him when he gets older, because it’s hard for people with Down syndrome when they get older.

[stage whisper: That’s what you always told us, right?]

I’ve mentioned to them, years ago at this point, some bits about life expectancy for people with Down syndrome  — somewhere around 50 for Eric, who has profound retardation. I’ve also mentioned some bits about the difficulties he could experience due to the laxity of his joints. Eric has the flexibility of a rag doll ; you can easily bend him in half. While that makes certain yoga poses easy for him now, other things that require strong joints (like walking and standing) could be difficult and uncomfortable as he gets older. And there’s not much we can do about it.

He won’t be very happy if he has to live alone.

I’ve told the children that I’d like to see Eric living with other people when he gets older.  A group home, maybe. He’s very social (“if you set him loose in the neighborhood he’d probably go to people’s doors and knock and make friends”) and follows people from room to room. Kind of like a dog. Could Eric maybe just be a dog when he grows up?

He looks fine now but when he gets older his face is going to change.

Um. I have no explanation for this. People with Down syndrome have varying degrees of the “Down syndrome look,” the manifestation of the facial characteristics we associate with Down syndrome. Eric’s appearance is in the middle of this spectrum, but for those who know him he’s just Eric.

How is your life different with a brother like Eric?

He’s very cute.

No argument here.

Sometimes he’s a challenge but he’s also very special to have around.

I tried for further elaboration on this point and got a blank look. Here’s my interpretation: Eric just feels good to be around. Even with a crusty nose, a hoarse raspy voice, and grubby fingers, the space inside the six feet circle around him just feels better than the space outside that circle. His hugs come straight from his heart.

I think of his differences as because he’s Eric, not because he has Down syndrome.

Maybe this is the most profound thing they said, the one that sums everything up. Eric’s brother and sister just don’t see “Down syndrome” when they look at him. They see Eric, their brother. Why would they see anything else?

Any final comments or thoughts you want to share?

He’s nice to you when you’re sad, and he comes and helps.

We’ve all felt Eric’s hand gently patting our arm and we’ve seen his amused-yet-beseeching gaze, the one telling us not to take life so seriously, that everything is fine, and that he’s here to help.  Lots of people spend years trying to figure out their life purpose, but Eric, at five-and-a-half, clearly already knows his.

So here’s my question: who is more lucky — Eric, for having such great, accepting siblings who love him just as he is, or his brother and sisters, for knowing Eric?

It’s a toss-up.