Monday, February 11, 2008

I was at a meal recently when someone said, "My baby is so easy because God only gives you what you can handle."

I snorted and said, "Yeah, I used to believe that. It's totally not true. I don't know who the hell God thought He was dealing with, but I am completely not equipped."

Of course, everyone at the table protested. "You do such an amazing job. You are such a fantastic mother. D. is so lucky to have you."

Bullshit.

Yes, OK, there are a lot of things we do right, because we don't really have a choice. We forgot to ask for the gift receipt when we got D., and they have really cracked down on the return policy at the store. So, we're kind of stuck, and since it's generally frowned upon to just leave your child in a ditch and walk away whistling, this is where we are.

I don't think we can "handle" D. I think we get by, we do the best we can, perhaps at the expense of our other children, perhaps at the expense of ourselves, perhaps at the expense of us, of our marriage. (Oh, stop worrying, we're fine. We're not even fighting. I'm speaking in generalities right now.)

Sometimes I think that D. does well in spite of us. In spite of our laziness, our inertia, our indecisiveness, our lack of advanced degrees in special education, our cluelessness.

When you have a child with special needs, it is assumed that you have read - and subscribe to the theory presented in - Emily Perl Kingsley's "Welcome to Holland." It's a lovely essay with some beautiful sentiments, and it works for a lot of people.

The first time I read the essay was long before D. was born. It might even have been before Z. was born, and I remember thinking how insightful and accurate it was.

(Yes, you may feel free to throw things at me.)

When D. was in the NICU, I read the essay to Mr. WG, and he loved it. About a year ago, I read it to my parents, and they liked it, too. And there are days when it still makes me tear up a little (although, frankly, these days a handful of crumbs on my freshly washed floor can bring me to tears, so whatever), but there are more days when it irritates me.

And it turns out that I'm not the only one.

I mentioned my feelings of gracelessness to a friend who said, “I can’t believe you really think that. You’re the example we give other people who have kids with special needs.”

That’s kind of a terrifying thought. And when I try to tell people that I have no idea what I’m doing, they look at me funny. But that’s because they’re not there to see everything that I see. Like yesterday, when I took D. to his first soccer class for kids with disabilities.

Now, all things considered, I guess D. did pretty well. I mean, he didn’t scream or throw a fit. He was pretty happy to get his own soccer ball. And at the very beginning, he went and sat in a circle with all the other kids. Of course, I immediately whipped out my phone to take a picture of D. acting like all the other kids, because I so desperately crave those moments, but by the time I lifted my phone to shoot the picture, all the kids were heading over to stand on the white line, and D. was still sitting in the circle.

So I went to help him over to the white line, but he wasn’t interested in that or in playing the red light, green light game, and we spent the next forty minutes trying to get him to participate even a tiny, tiny bit. Unsuccessfully. And when I left with him, a little bit early, I was very careful not to make eye contact with anyone else, because I didn’t want to see That Look that says, He’ll do better next time. You’re doing such a great job!

I think I hate that sentiment so much because it feels like a crappy consolation prize.

5 comments:

lisa said...

I hate Welcome to Holland too. This stuff is hard and Welcome to Holland sort of negates that.

I'm sorry his first class didn't go better for you.

Lisa b said...

I never, ever liked that Holland analogy.

I only clicked the first link but it is interesting to see how others got dropped by their medical professionals too as things got rocky. Seems nobody wants to go to Holland.

spaceranger said...

For what it's worth--I also think the "God doesn't give you more than you can handle" line is a bunch of hooey.

Andrea said...

Oddly, one of the reasons I admire you so much is because of posts like this. :) You're real. You have real fears and expectations. You see it all instead of just focusing on the good and ignoring the bad. I admire that. You've been handed challenges that would have buckled many people, yet you make it work.

I think the "God doesn't give you more than you can handle" thing is a load, too. I think He gives us some things just to see how we handle them. We still have to make our own way...

Denise said...

Thanks for writing this. I have been feeling like this month. One daughter has Sotos Syndrome, the other is on the autism spectrum. I feel like "Holland" tries to smooth over the reality of dealing with the disables child. Thanks for the other 2 essays. Hadn't seen them, and those are much more real.

Hugs to you--we just have to take it one day at a time.