Wednesday, June 19, 2013

Our real work

It may be that when we no longer know what to do,
we have come to our real work;

and that when we no longer know which way to go,
we have begun our real journey.

The mind that is not baffled is not employed.

The impeded stream is the one that sings.

--Wendell Berry, "The Real Work"

Sunday, June 16, 2013

He's no angel. I'm no saint.

He's such an angel. He's cherubic. You're a saint. You're an amazing mom. I don't know how you do it. God chose you to parent him. He has a direct line to heaven. I could never do what you do. 
I get this a lot. And I know it's meant in the most loving way. First of all, thank you for warming your heart to us so much that you can see the beautiful person that my child is, inside and out (I can't get enough of those cheeks!) and for acknowledging the intense parenting that's involved.

But also, please know: He's no angel. I'm not supermom. You'd do the same for your child. Really, you would do it too if you were in our shoes. And it could just as easily have been you and your child in our shoes.

I know the comments about my parenting are meant as compliments. You're telling me you see my efforts, and I appreciate that. But I also challenge you: Are you distancing yourself from my child, from us, when you say these complimentary things about the way I love and care for my son? Is any part of you thinking "Whew, dodged that bullet, good thing it's on her plate not mine"? When you say "I couldn't do that...," do you mean "I'm sure glad I'm NOT doing that"? I don't mean to be judgmental; I just know what I really felt when I've said the same admiring things to moms of kids with what I perceive to be greater needs, more severe disabilities. And I need to remind myself, although it seems crass: Nothing I've done made my child more enabled than the others. And you've done nothing particularly good or responsible to ensure that your child is typical, either. Neurodiversity happens. Genetic abnormalities happen.

You would and could do "this," too, you know. You adore you child, and if fate dealt you a different hand, you would rise up, just as I have. And I'll be honest: the rising up is only visible because of all the denial, anger, and depression that come before it (and often with it). I'm not a saint. Parents of special needs kids are not inherently better or even good. We're just parents. And please don't use the line "God doesn't give us more than we can handle." Many who are handed this challenge do not do well with it. Sometimes it is more than we can handle. There is abuse, neglect, handing over kids to the state, divorce, even child murder.

Yes, parenting a nonverbal autistic child is hard work--the hardest work I know. But I honestly don't think I've been chosen for this. And that's a whole other blog post, about why tough stuff happens--to kids especially--and if it even happens for a reason. Lately I think it just happens, and this world is full of beauty and agony and everything in between.

Here's where I think something in me gets tweaked when people are overly flattering about my son. When you label my child an angel, and I know you do it in the most loving way, there's something you take away from him, too. You've labeled him an Other, in a category all his own because of his differences. But he's human. He's annoying, and manipulative, as well as beautiful and inspired and a gift that God's given us. He's a boy, not an angel. There is a middle ground between labeling him a monster and an angel. And that's labeling him a boy. Just like other boys, with strengths and weaknesses and oh the annoyances. Mine looks and acts different, yes. But I want you to understand why labeling him angelic sometimes makes me feel like you don't really see him, like you're trying to find a separate place to put him in your world construct. Instead, please afford him all the nuances of being a human, a boy. Let him fail and let him shine, maybe both in the same instant.

Sunday, June 9, 2013

And a broken foot

Last week, this happened:
It was just a (very painful) stubbed toe, I thought, but after I saw bruising and swelling, I went to my doctor and came home with a cast. It will be on two weeks or so.

Oh my. This is harder than I thought. I'm not in any pain, but I've realized just much I chase Soren around and how often I go up and down stairs in our three-story house. To check on Soren to make sure he's safe, I need to follow him around. A lot. I haven't locked him in a room with me (yet), but I might need a foot-up kind of break pretty soon. I'm fantasizing about watch Bravo propped up on pillows on my bed, but that's not happening with a certain five-year-old in the house.

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