Maybelle vs. The Memoir

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Over the last few months, I’ve been reading memoirs by parents of kids with disabilities. Most of these are fairly recent, written in the last decade, about kids with Down syndrome, autism, and other developmental disabilities. And what keeps surprising me is that the overriding emotion in most of these memoirs is grief: “I was happy, but my life has now been derailed in such a terrible way. Because of my child’s problems, I’m miserable. Let me tell you for the next 150 pages, in great detail, how sad I am.” Generally the memoirs have a turning point around three-quarters of the way through and end on a happier note, but the damage is done. The books leave you as a reader with the feeling, “God, I’m so glad I don’t have a kid with a disability!”

The thing is, I do have a kid with a disability. And I don’t appreciate a book arguing, or even just implying, that a child like mine is a rational cause for 150 pages of misery.

I understand some grief. When I learned, a day after she was born, that Maybelle has Down syndrome, I did feel that my life had been derailed. I was shocked. I had heard of Down syndrome, and I suspected it was very bad news. Bad news as in, will she ever communicate with us? Will I be able to keep my job? Is it okay for me to love this little person? Am I cut out for this sort of work? I cried for days.

I’m not alone in that grief. The community of friends I’ve made, friends with kids who have Down syndrome, have shared similar stories. Some of that grief was sharp enough that we cry, even now, describing it to others.

But that’s not where the story ends for any of us. That’s not 150 pages of the story. That’s roughly one paragraph, the main point of which, for me and my friends, is that we were really uninformed. As it turns out, society had given us a lot of poor information about what it meant to have a child with a cognitive disability. The rest of my story would go like this:

Starting almost as soon as she entered the outside world, one of Maybelle’s favorite things has been music. For her first year of life, listening to her daddy play guitar to her would calm her almost indefinitely, her attention locked onto the strings and onto his face with a satisfied intensity. Now, at age two, she’s not a person who reclines and listens to a guitar. She grins when he gets it out and then as quickly as she can, stands up and gets her hands all over it, trying to imitate what his hands do, strumming and plucking the strings.