How being a special needs parent is like the Iraq War

Yesterday, I told you about "Including Samuel," a documentary primarily about a little boy with fairly severe CP who was enrolled in a typical kindergarten class.

Imagining a world where disability is normal and Malachi is seen as just another child would take a huge load off my mind — and I do think that inclusive education is a giant step in the right direction.

But I have to be honest and say that it's not the entire equation for me. Malachi's functionality and independence is important to me too. It's for those reasons that I've worked very hard ever since his diagnosis to find and implement as many therapies and interventions as I can.

Jessie Kirk Photography

Without that fire, that burning need to help him overcome this, I know in my heart Malachi would have less functionality than he has now and be set up for a more constrained life. (How much more? That I couldn't say.)

Beyond a doubt, my husband and I would have been happier if we could have just shrugged and said: "OK, cerebral palsy, cool, whatever." But here's the rub: Until a person is two years old, "more" (Again, how much more? No one knows.) can be done to rewire the brain than at any time afterwards. This is a biological function. It enables babies to learn lots of complex tasks like walking and talking without having to study, something I'm sure they would be very bad at.

So that puts me in this weird place of at once being Malachi's biggest cheerleader and his biggest critic. I did the best I could and gave him as many opportunities as I could and so mostly I feel OK about where we are now because I honestly don't think I could have done better. But many days I feel like screaming at Malachi — and, I'm ashamed to admit, some days I do — that I am working so hard to teach you to roll/sit/crawl. Why don't you know how yet??? Even other children with cerebral palsy can roll/sit/crawl by now!

So it's very hard for me to "accept" Malachi's CP when I'm working so hard to help him overcome it. As his second birthday approaches, though, I am beginning to feel like I can shift focus toward accepting him the way he is and urging others to do the same.

I'm looking forward to that time. I think it will be a relief in many ways. But I also don't think I could have skipped straight to it without jeopardizing some of his functionality.

For some reason this puts me in mind of the Iraq War. There was this huge burst of energy to try to "accomplish" an undefinable goal, lots of sacrifices made, small battles won, and probably some big badness avoided. But after all's said and done it's hard to claim "victory," because real life is messier than that. It's hard to know if what we did really made a difference or if we just want to believe it did.

At least we can draw down our "troops" in two years instead of 10....

(Tomorrow I have the final part of my thoughts after watching "Including Samuel.")