"Close my hand," my little guy says in the morning and at lunch and when he thinks of it.
Because his version of that phrase actually sounds more like hose sand, until today I thought he was asking to go to the beach.
He looks down at that hand and moves it with his right hand and seems to know now that there's something missing. He's doesn't display any anger or frustration (not yet anyhow), he's just puzzled I think.
He'll look up at me or his mother or sister and repeat the request until we can distract him with some other activity.
There's no way to explain it to the boy (not yet anyhow), and very little to do beyond what we are doing, but like the tax notice or the mortgage adjustment or the dental x-ray I knew was coming, that day is now.
There's a silver lining in all this of course. He's aware of that left hand, and so he'll try to use it more and more. Even though it's affected by his cerebral palsy, it belongs to him and knowing my little guy, he'll find a way to make it useful. Like any kid with a toy that's a little beyond his years, he'll fumble with it for a bit until that day that he learns to make it do what he wants it to do.
But that knowledge that his early days held back like the warm days hold back the frost is now settling in upon him. I can't hold it back. I can't bring back the forgetful summer.
I wish he had more time to be innocent. I wish those little shoulders didn't have to heave up that load so early. I wish I could make it easier for him. As vain as those wishes are, I wish them.
He's a strong boy though. And more tough minded than some adults I work with. I know too he'll do what he has to do; I know there are a village of people standing just behind him and beside him. He'll be all right.
Good night.
5 comments:
Oh David, I'm going with the glass half full view of this. I think it means he will use his hand more, and using it more will wire his brain to use it more, and then he'll use it more, etc. My daughter is younger, I don't know what she thinks but I know she knows she has to run that hand differently and she puts obvious effort to start with opening from the pinky end so she can put an object in it. I think in many ways this is exciting, but then there is that bitter part too. I know one day someone will notice our kids and mock them and that keeps me up nights, sometimes. Hugs to you and yours.
Thanks Ginger for the positive thoughts. I know that's the right mind set, and my boy certainly has it; it's me that wavers sometimes when I'm tired - once we get adjusted it will seem natural and be a good thing I'm sure.
David
This is a beautiful piece of writing.
He may be aware that his left hand doesn't work the way his right does, but he doesn't view it as a 'dis-ability.' Like you say, it's just a puzzle to him.
It reminds me of a mom whose son was born without a hand and when he first started referring to his arm with the 'little hand' -- the shorter one with some residual digits. And luckily the family already had contact with a family with a daughter with the same limb anomaly, so they could talk about how he had an arm just like this other girl.
I think there are simple ways you can weave in the fact that it's harder to use his left hand than his right: "Sometimes that hand doesn't listen to you, does it?"
We used to talk about how Ben knew what he wanted to say, but the muscles in his mouth wouldn't listen to him.
Remember that he doesn't see the difference with any loss or judgment. To him, it simply is.
I think you have a wonderful opportunity to talk very naturally about this. Maybe you can even give one of his animals or characters a similar challenge -- look, bear wants someone to help him close his hand -- he has to work harder to use that hand, doesn't he? -- or whatever makes sense.
It's AMAZING that he is speaking so much.
Remind me of how old he is. It's great to hear about your whole family!
Thanks Louise. Those are some wonderful ideas for my boy - he's going to be three in a few days. I think he would respond well to the "that hand doesn't listen so well" idea; he likes to have things personified. And making one of his stuffed animals a confederate is also something he would like. I will try that with him and let you know how it goes.
I can't BELIEVE he is going to be 3! Wow. What are the plans for celebration?
Yes, please do let us know how it goes with the animal and his stiff paw.
When Ben was 4 he had a g-tube placed. A friend sent me a doll with a real g-tube sewn into it. Kids thought this doll was the coolest thing. It completely demystified and normalized the g-tube.
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