Tuesday, November 10, 2015

He Ain't Heavy

The Friday before Halloween, Dawn sent Willy to school in his Marvel pajamas and a sign that said "I'm Super Willy, the Superhero." That's as good as it got. Neil Patrick Harris's family we ain't. Still, it had a certain Willy style and sass. It worked.

When a child dies, we often grieve not just for the loss of life itself but for the loss of potential, for all the things that child won't be or experience -- the prom, a wedding, their own children. Dawn remarked to me the other day that with Willy we're also grieving for everything he couldn't do or be in the first place. 

For all that we tried to give him, we couldn't give him the chance to make the winning goal in soccer, or get an A on his science project, or experience his first crush (though he was a bit of a flirt). His needs were such that we called it a win if we could just keep him fed, diapered, and properly medicated.

We did try to give him a personality. Since we had no way of knowing what or how much was going on inside that smooth brain of his, we ascribed things to him. We blamed him for things he couldn't possibly do, like eat all the Oreos or leave the toilet seat up. It was slightly less probable than blaming those things on the dog, but funnier.

We accused him of timing seizures to get out of doing things or just to make more work for us. "Anything for attention" I'd say, pretending to be exasperated. We accused him of being petulant in age-appropriate ways: "Tweens, amiright?" Another of my favorite jokes (and timing was key here) was "I know, right? It's like there's something wrong with his brain or something." 

We accused him of being grumpy with people he didn't like and of having an eye for the ladies. I used to seat him at the table to grade papers or play games. We narrated his life in the way that we wished he might be actually experiencing it, even though we knew that was probably not the case.

In light of this, it seems all the more appropriate that many of us imagine him, in whatever version of the beyond we're able to conjure, running and jumping and playing Nintendo because those were things he couldn't do in life. It's standard fare at funerals, and the images offer solace and comfort.

I don't want to make light of that. Those things are true in the best sense, in the way that they need to be true. If you thought or said or believe those things, thank you. It's touching and beautiful. I mean that.

But -- and I tread lightly here -- it doesn't quite work for me, and not because I have a less robustly kinesthetic view of what happens when we die. To me, that running and jumping and Nintendo-playing kid isn't Willy. I don't say that to be churlish or contrary or pedantic. It's a beautiful thought, but it's not the Willy I know.

Maybe it's because I came late to the party and never had cause to lament what his life might have been. I get that. I don't want to take anything away from someone else and how they need to process.

Nobody is glad that Willy had lissencephaly. It was not a gift. Neither Dawn nor I cop to a deity doling out special needs kids to parents who apparently don't have enough shit to deal with.

We never wanted Willy to be defined by his diagnosis. But he did have lissencephaly, and it was part of who he was for us. He was one of the "Liss Kids," an elite cadre.

The Willy I knew couldn't walk on his own, or even crawl or scooch down the hallway, so he had to be carried. Of course his parents scooped him up and carried him thousands of times before I ever had the chance, but that's what I remember: carrying him.

Willy had the reach that he had precisely because he had lissencephaly. Dawn and Todd made the connections they did because they were thrown violently into that world. A large chunk of the hundreds of people that paid their last respects to Willy we only new because of his disorder. 

Willy's superpower wasn't something he had in spite of his lissencephaly; it was his lissencephaly. That doesn't make it good or right or something for which we should be grateful. But it made him who he was and it made us who we are.

He needed us. Completely. He showed us, collectively, what we were capable of in the face of such abject need.

And he showed us it was okay to need. That's a superpower.

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