Since we got the diagnosis mere days after I gave birth, I worry that my brain has therefore been somewhat permanently altered to be manic about Malachi's disability.
Already today I have had enormous mood swings about whether or not I think Malachi might walk someday and whether what I'm doing is helping him get there. As I lay down to sleep... well, of course I can't sleep, can I? The weight of a hundred schools of thought and excruciatingly little scientific evidence of what works with kids with cerebral palsy is bearing down on my shoulders. I work myself into a frenzy debating the various options for what I think is quite literally the millionth time.
This afternoon I used Mom Power to locate a very small manual wheelchair for Malachi to try. Our hospital PT had been trying unsuccessfully for six weeks to get one but I finally just asked my local Facebook group of moms and got two offers within hours.
So, I sit Malachi in it and... what did I expect? He cried and was scared of falling out of it until the other mom helpfully offered her belt to help secure him in. Once he felt safe, I had to resort to some tricks to get him to even touch the wheels. Then I relaxed a little and started a game: "Touch the wheel; touch the iPhone." Then: "Push the wheel in any direction; touch the iPhone." And finally: "Push the wheelchair towards me; touch the iPhone." This took about 15 minutes and then he asked to get out, so I let him. Point being... he can probably use it. But he sure isn't going anywhere fast anytime soon.
Meanwhile, the other mom keeps telling me about what a long road it was for her now-8-year-old daughter to get to the point she is at today — walking with a walker, etc. — and essentially telling me that I shouldn't give up hope.
I believe her. And even though progress is screamingly slow with Malachi, I do see many of the elements he needs to walk already here now. As I drove away, the sun shone on puffy white clouds and I wondered how I could ever doubt that things will turn out OK. Of course Malachi can learn — he's awesome at learning and learning never stops! And hey, even if Malachi does use a power wheelchair his whole life, what's the big deal? He's smart, funny and personable. So, who cares?
I do, goddamn it, says a little voice that growls louder with each passing hour. I'm the one who's going to have to schlep him up stairs and transfer him into beds, etc., etc. And for goodness' sake what am I doing all this unconventional therapy for if he's going to be at the bottom of the charts anyway?
As I lay awake, I think, and not for the first time, that I've totally messed up, turned our lives upside-down for nothing. I agonize that I really need to do more therapy with him and that I don't put him in his various contraptions enough. I worry that the environments I put him in could be more conducive to moving and that I haven't even tried whatever idea it was I had two weeks ago.
I worry that if I get him a power wheelchair that I'm "caving" or "giving up" on him ever walking, because why would he want to try crawling if he already had something that propelled him around? (Indeed, he already does that with me.) But I worry that if I force him to be in a manual chair that it will just become another piece of unused equipment that he hates being made to try and I will lose out on all the developmental and social benefits an effortless propulsion system would offer him.
Then I worry that I care too much. And then I worry that I don't care enough. I wonder how I could have possibly thought a few hours ago that things were OK.
And through all of this I tell myself: STOP! It's not up to you! There isn't a magic bullet and you're doing the best you possibly can!
But before I know it, those compulsive voices start up again and I hear the tack-tack-tack of the roller coaster as it climbs to the sky.
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Need a baby shower gift? Dark & Light: A Love Story in Black and White is a beautiful and insightful board book available here. All profits go towards my son's medical needs.