Tuesday, December 07, 2004

Light on

There are some things my kids do that I remember doing. I remember when I used to sing "Row, row, row your boat" in my own way, and my parents would try to teach me the right way. My daughter does that now. I remember when it made me feel good to turn on the light in my room and then leave the room, as a way of starting the day. My son does that now.

We have an online parents' group for my son's preschool, and when I joined it, I let the other parents know about my ALS, and thanked them for any measures they were taking to keep sick kids home, since I'd had to much bronchitis. I also said that with both parents working, it's often not possible to keep sick kids home, and that I knew they were already doing the best they could.

One mom responded by email saying my message was very brave, and offering her support. Another called and said she would do anything we needed, including watching kids. The other day she watched our kids while we went to the parent-teacher conference, and then we watched hers while she did the same. Then we all had dinner together. What a madhouse, but it was fun.

This morning I pushed my son to preschool as usual, using the jogger stroller, and thought about how this is a good practice. I had made a point of taking walks while they were away over Thanksgiving, and benefitted from it.

On the way back, this car arrived at an intersection at the same time I did, and I angled to cross behind it as I usually do. But rather than proceeding to the stop sign it stayed there in my way, which I found annoying. I increased my angle, and began to mutter "Get out of my way!" I noticed that the driver's window was open, despite the cold morning, and wished I hadn't begun muttering out aloud, since the driver might hear me. I didn't so much mind that they might be offended, as that I would have been offensive without intending it.

Then I recognized the driver, one of the dads, who I had seen only minutes before at the preschool. He was the husband of the woman who'd emailed that I was brave.

"We saw your message to the group," he said. "That was very brave."

I was smiling now, and said thank you.

"We think about you a lot," he said. "We think of you."

"Thank you," I said, flapping my arm and releasing a cloud of vapor from my mouth. "So far I'm doing well!" I sounded cheerful.

"Yeah," he said. "Good." He smiled and returned his attention to the road. I said "Bye Will!" Will is his son's name.

"Tom!" he said.

"I mean, bye Tom!"

I continued to the other curb, wondering if my gait betrayed that odd, hip-centric motion that I feel so mildly, and that disabled people often exhibit.

It occurred to me that Tom and his wife might think my message "brave" because they wouldn't know that I'd already told many people about my ALS, wouldn't know that I drooled about it almost daily in this blog. They might think it was the first time I'd revealed it to a group of people I didn't know all that well.
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