Tuesday, April 7, 2009


The kids are on Spring Break from school right now...though it hasn't felt very celebratory or fun so far. Everyone's been sick. Everyone -- my husband and all three kids. The boys have been sick enough that they are accepting of endless days laying around on the couch, flipping channels and dozing. But that's not completely accurate; Max would be accepting of that most any time -- provided a loved one is sitting next to him. What I should say is that he hasn't asked to go outside or tried to initiate any of his usual little games, and there have been fewer smiles and giggles (and more tantrums) than usual. That's more accurate.

He's surprisingly tolerant of illness. He doesn't like to cough, though, and refuses to breathe through his mouth when his nose is stuffy. So you can imagine how frustrating that can get. But otherwise, he just gets tiny. He needs extra holding and snuggling and less talking. He doesn't complain; he just carefully shushes me with a finger to his lips and shakes his head "no" very seriously and small.

That's the thing about not being able to communicate his feelings to us. There's no whining or moaning or dramatic complaints about sore throats or earaches or nausea.

But also, that's the thing about not being able to communicate his feelings to us.. There's no whining or moaning or dramatic complaints about sore thraots or earaches or nausea. How do we know?

And there it is: the first duality. It's the flip side of the coin. He is pleasant about his illnesses, but we are left with little clue as to the nature of his illness!

I've been thinking about this duality thing lately. It seems to be such a recurrent theme in life with disability.

Having a child with a disability brings such extremes. The highs are HIGH; the lows are LOW. The celebrations are joyous; the mourning is heartbreaking. It brings out the best in you. It brings out the worst in you. It solidifies the strengths in your marriage. It chisels away at the weaknesses in your marriage.

But I also see this duality in Max himself. He is cognitively impaired; but he uses the atypical brain he has with genius. And it seems he swings behaviorally, too: he is happy or sad, awake or asleep, smiling or crying, silent or loud, together or apart.

He knows his body well enough to run to the kitchen sink when he starts a gagging coughing fit. But he is surprised by his body every time he sneezes while standing there and hits his head on the counter's hard edge.

He fidgets and moves and jerks until suddenly he is asleep, as if a switch was flipped.

He's together or apart. Sitting at the table while I make supper is apart. None of that "in the same room" stuff for him. He wants to be in the same airspace. But being in a completely different room can be acceptable.

He's happy or he's sad. It changes from moment to moment, but there aren't grudges or resentments or residual annoyance. He cries to have his nose wiped, but then is over it and the offense is forgiven.

He wants to be held, but he doesn't. He wants my hand "here", but then he wants it "there". I've been holding the image of Dr. Doolittle's Push-Me-Pull-You in my head lately.

So the sickness is hard. Because I can tell -- now -- that he is sick. But I don't really know HOW sick. And there was a fairly sizable gray area early in the week when I wasn't sure if he was sick or not. He pukes or he doesn't; it's rarely due to illness. But then sometimes it is an obvious sign of illness. He eats or he doesn't; it's dependent on any number of things, the combination of which we've never entirely deciphered. It's not always about hunger.

So here is what I've been laying here puzzling over: if everything is so black and white, why is it so hard to figure out what's wrong???

It's just not always clear.

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