The same, but different ...

One of my most embarrassing public moments as a parent happened at the zoo two summers ago. Most of you know the story; it's the time Megan threw an unbelievably violent tantrum at the zoo. It's also the time she discovered that my Adam's apple is my weak spot. Unfortunately for me, she discovered that weak spot while I was trying to carry her thrashing, screaming, kicking, frenzied little body out of the zoo without getting a black eye or throwing a tantrum myself. It was a long, hot march of shame from the monkey house to the parking lot, and it was made even worse as she kept jamming her forearm into my Adam's apple, causing me to choke and flinch and try to hold her at arm's length without dropping her.

In my telling and re-telling of the story, I've managed to turn it into a comic scene, complete with Megan's tearing off her shirt in the van like an English Premier League prima donna protesting a red card. But it was definitely a day where I felt seriously unsure about my qualifications as a parent, and about Megan's emotional health.

I was thinking about this story this week after Julie's experience Wednesday in the waiting room of cardiology at Children's Hospital. I won't bore you with the long story, but by the time she and James got to cardiology, it had already been a crappy day. (Though not health-wise, as James's heart looks good.)

The waiting room in cardiology was fairly crowded. A tired James walked around the room a few times, then settled in to rocking from foot to foot and shaking his head—a kind of self-stimulation, we think. And then a little girl walked by while he was sort of rocking and sticking his arms out, and he grabbed her hair and pulled it hard enough to pull her backwards onto the floor.

When we were talking about this Wednesday night, neither Julie or I could think of a time when we felt like people were looking at James in some unusual way—with pity or some other uncomfortable kind of look. We couldn't remember ever having felt awkward about being out with James before, or awkward about people noticing him. Yes, we're aware that when we're at school or church or gymnastics or wherever that people probably notice that something is different about James, but that hasn't bothered us—and really, why would it? The (fairly frequent) times someone has said "retarded" while we're in their presence—now that's a different story, for a different post. But being out in the world with James has mostly been more or less like being out there with Luke and Megan.

Julie was mortified, of course. The mother of the now-crying little girl was really nice, calmed her daughter down and brought her back over to James, showed her he was a nice boy, and so on—really good stuff. But Julie had already felt like people were looking at James differently, and the moment bummed her out, made her sad. (We also both agreed last night that the mere fact that all of this happened at Children's Hospital put it into a certain perspective pretty quickly. There are always people there who are going through things exponentially more horrible than us.) It was a moment when she was self-conscious that everyone was looking at James and her differently, and I think, or imagine anyway, that she had that feeling of the train leaving the station and you suddenly decide you don't want to be on it, but you're stuck.

But what's interesting for me to think about this story is that, in the end, I can't quite say whether Megan at the zoo and James in the waiting room are a good example of how similar or how different things are between our kids. It's always kind of both, I guess. Each us felt that sort of panicky embarrassment of being caught in public; maybe the difference lies in that it sometimes feels more difficult to have faith that James can or will grow out of what he's doing.

With Luke and Megan, we operate with the unspoken, unexamined, even unconscious assumption that their lives will have a certain arc. With James, that arc feels much more unknown, and we think more consciously about it sometimes, and that's probably not always good. We don't want any of our kids to grow up too fast; we're trying to enjoy the moments as we have them, like all parents. And the truth is that we don't really know how things will turn out for Luke or Megan, either, or for anyone in our family.

Maybe that's the trick I have to learn: how to think about just how much alike in kind, if sometimes different in detail, James is to Luke and Megan, and how much that likeness can serve not just as a way to understand James, but the other two as well. I've heard parents talk about how they don't think so much about their child having Down syndrome after a while, and the Down Syndrome Association's ad campaign last year was, "We're more alike than different." I think I still have a hard time making my gut believe that, even if my mind understands it.