Sunday, April 18, 2004


We rented a pretty decent comedy called "Window to Paris." A group of Russian in 1993 discover a window that is some quantum portal that transports them to Paris and back. Hijinks ensue.

I have a couple of times forgotten to take the riluzole, once until 5:22 in the afternoon. So I have decided to always take it upon waking up, even if I eat breakfast within an hour. Ritual is your friend.

Some very nice people have organized a dinner brigade and have been bringing us dinners once a week! I think the group is large enough that it works out to once every two months for them. This is so generous.

I love my son so much. And I hate my role as a warden. But a major part of his mission right now is to find rules and break them. And I don't mean rules like which fork you eat with. I mean like not grabbing the hand of our neighbor who comes over for a visit, and jumping up and down laughing while milk spurts out of your mouth. OK, maybe that was just over excitement rather than deliberate rule-breaking. But a lot of the rest of the time his quest is to find something you feel compelled to correct him on ("Don't tip that! It'll break!") ... and then once you have offered the constraint it's like you took the bait and are now on the hook, for he has a number of options, which include ignoring you, defying you, joking about the transgression, and others. Then you are correcting him for ignoring you on something important or dangerous (and whatever that is, he's still doing it while you give the lecture on ignoring you), and the whole thing escalates from there. This is what the parenting books call the power struggle. He wants to force you to be the warden so that he can feel the sense of empowerment that comes from defiance. It's normal. It's natural. But I don't get to be with him when the warden is with him, and I miss him. Desperately.

The other day at a birthday party he did a smart thing. They had a bubble machine which blew soap bubbles automatically. They also had twirly things on sticks, that twirled in the wind. The kids were chasing the bubbles around and popping them by hand. My son too. Then later, he picked up one of the twirly things and held it in front of the bubble machine. The air coming out made the thing twirl, and the twirling bit chopped up all the bubbles. I thought that was inventive. A small girl came over and told him to stop. I let them work that one out between themselves.
Weblog Commenting and Trackback by