Wednesday, April 20, 2011

Follow Up

**updated below**
Maggie had an rather uneventful follow-up appointment. We already knew her tests were normal. But it was nice to hear it officially.

On the way up to the doctors' office, we saw a little girl in a wheel chair. The kind that supports your head. Probably the kind that kids who have symptomatic infantile spasms would have to use when they got older. At first I wanted to reach out in some way. Tell them, I know I don't know what your life is like, but I know I've probably spent more time imagining it than most moms.

But then I remembered something I felt when I imagined Maggie getting a neurological diagnosis. There was this sense of anger that I didn't want other people looking at her and thinking, "thank God my kid isn't like that." In a way, they immediately would assume their kid was better than mine. No matter what, their kid "wins" because he doesn't need a wheelchair or have extra doctors and specialists to see. And it really pissed me off. I felt like, I'd just want to scream at people, "you don't even know my [hypothetical] kid! She is kind of awesome just the way she is. So back off!" I know parents wouldn't consciously be feeling smug or superior or writing my child off as "less than," but it certainly seems that way from a certain perspective.

I guess I'd never realized before how sympathy can feel so patronizing. How gratitude for what you don't have can look so ignorant. And the thing is, I am grateful for what I don't have. All the time. How can you not be? I'm grateful for weird and random things, like the fact that my kids don't need feeding tubes. Who is grateful for stuff like that?? I don't know. But you just hear from one coworker about their granddaughter who needs one and how can you not thank god that your kid can swallow just fine? I'm grateful that I can leave my kids with a babysitter who doesn't need medical training. I'm grateful we've never needed occupational or physical therapy for our kids. I still feel a sense of relief when Maggie reacts to loud noises or tracks objects with her eyes. I thank God almost every day that Hannah has never shown signs of autism. And I could go on and on.
I guess my point is, that I don't really have one. Except, I am very lucky that even though our lives are crazy right now and there is a little more shoe throwing in our house than I'd like, we have it pretty good. But I feel like the family I saw at the doctors' office feels the same way (maybe minus the shoe throwing). At least, I really hope they do.

**update** I saw this the other day and felt vindicated:

Don't cry for us, Argentina. When we tell people about our kids' disaiblities, they sometimes say things like "I'm sorry." Or "you poor thing." Or even, "I'm so lucky my kid is OK." There's no need to pity us when we have children who make us appreciate the small things in life, who show us how to love unconditionally, and find strength in ourselves that we never knew existed.


  1. Do you think I should ask the blind people I see in the subway if they need help?

  2. So they didn't cover that in my ADA training at work and I've wondered that too. But I've seen other people offer and the person who was blind accepted. So I say sure. Even if they say no, I'm sure they still appreciate it.