Friday, May 05, 2006

A little bit

On an outing with my special wife and daughter yesterday, the front wheel of my wheelchair scraped up against a small protrusion, and the solid rubber 'tire' peeled off the rim. A mechanic pulled up in a truck, and he couldn't get the tire back on. Neither could a bike shop. The people who provided the chair are mailing me a new front wheel. Sheesh!

My loving wife and I had agreed (before the ALS clinic visit where they kept trotting out the "whole family is involved" trope) that we should talk with the kids about whether they have questions or concerns about my condition.

But events conspire to forestall intentions, so one night after dinner, while my brilliant wife was in the kitchen, I asked my son if he had any questions about my problem. He's the kind of kid who wants to know everything about everything, and we're concerned that he may be suppressing his worries about me.





I figured I'd struck out. Then as he was clearing his plate, he said: "Maybe a little bit."

I nodded. "OK. Well, you think about it, and we'll talk again in a few days."

That night, when they were in bed, he asked me to come over so that he could hug and kiss me. We've done plenty of hugging and kissing, but as he's gotten older he's dropped that bit from his bedtime routine.

"Dad," he said, as I knelt by his bed "I wish there was something that could help you get around quicker."

His voice sounded caring and a little bit sad. What a great kid.

"Yeah, me too," I said, and patted him on the back. "But what are ya gonna do."

Then I knee-walked over to kiss my daughter, slowly and precariously levered up to standing while using two support points, and edged downstairs to clean up the kitchen.

A few days later I asked him if he had more questions, and he did, though I don't recall them all. One was why I didn't eat breakfast at the same time they do, usually. "It takes me a long time to shower and dress." One was whether I might have already had this problem as a kid, and not known it. "Maybe, but no one knows the answer to that." Another was not so much a question as a ramble on his part that contained the assertion he wanted me to react to: that when you can no longer move you are dead. I didn't affirm that one, but because of the flow of conversation I didn't lay out a formal refutation. My face probably expressed doubt.

He enthusiastically said that he would write all his questions on a piece of paper, and I would write my answers on the same sheet.
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