epilepsy dad

  • Different, in a Good Way

    Different, in a Good Way

    He said he wanted a Clone Hero competition.

    I could have said, “Sure. Have your friends over, they can play.” That would have been a fine birthday. But I wanted it to be special, and I didn’t know how.

    Then I thought of a bracket. It felt like a good idea, and it felt like it had come too late. That was the pattern all week. The good ideas kept arriving after the point where I could use them.

    The poster was a week out, and I didn’t know what the turnaround was. The passes I could print at home, except we were low on toner, because he’d been printing Avalanche pictures all week. Then it was when can I pick up the poster? Then, oh, a trophy. How do I get a trophy in time?

    It was controlled scrambling, right up until the last minute. I kept it away from him. I wanted him to see a birthday, not the work behind it.

    Saturday morning, I slid his PC out from under his decks and felt the dongle bend against the floor.

    My first thought was I just ruined his birthday party.

    What I said was, “Let’s get the computer downstairs and test it.”

    We tested it. It was broken. I told myself what I’d been telling myself all week: Focus on the next step. Not the eventuality. The next step was Best Buy. Then the one after that, then home at 11:58. I texted him on the way, in case the kids showed up before I did. I texted their parents. I didn’t pass any of the worry on to him.

    When we plugged in the new guitar and nothing happened, and then we remembered to charge it, and the lights came on, it felt like the whole week let go at once.

    I think the dongle was the week at its smallest size. All of it had felt that way. Late ideas, tight deadlines, a plan that only held if nothing went wrong, and the plan was mine.

    I’d been afraid that this year would be different, and that different would mean worse. His birthdays had always been special because of who was in the room and the work that went into them, and I was afraid I couldn’t build that on my own. That what I could pull together wouldn’t measure up to what he was used to.

    I still don’t know that I can do it every time. Some of these days won’t turn out the way I picture them. Some will go wrong, and we’ll recover. Some will go better than I imagined.

    This one did all three in one Saturday.

    It felt different, but in a good way. It was exactly what it needed to be. I didn’t need to compare it, or minimize it, or wonder if it could have been better. I felt like we nailed it.

    The party was over at three. Before I went upstairs, we talked about how fun it had been. I asked if he’d had a good time, if it was good to see his friends. Then I told him I was tapped and wanted to rest a little before I cleaned up. I told him he didn’t have to help. He should go rest, or do whatever he wanted.

    I crashed fast. One holy crap, we pulled it off, and I was out.

    When I woke up, I went down to the kitchen, ready to head to the basement. All the plates we’d used were stacked in the sink, ready for me to load into the dishwasher. I went down anyway, and the basement was clean. The vacuum was still down there. He’d vacuumed.

    I’d told him to go rest, and of course he didn’t.

    I went to find him. He asked if I’d seen what he did.

    I didn’t say he didn’t need to. I didn’t say he shouldn’t have. I didn’t want him to think he’d done something wrong. I thanked him, and told him I was so grateful.

    I could see it was another moment for him to feel proud of himself, for doing something amazing for someone else. It was just perfect.

  • The Neurodefender World Tour

    The Neurodefender World Tour

    The week had three big events in it for him: the Avalanche game on Friday night, the party on Saturday, and the Clone Hero championship at the party. All three mattered the same.

    (more…)
  • Some Good, Some Bad

    Some Good, Some Bad

    We were in the car, on the way to an appointment. It was after school, and we had done our “three things” conversation already, where he tells me three things about his school day.

    We passed a car on the side of the road, and the conversation shifted to owning a car. Maintenance, or insurance, something about what it costs to keep one running.

    “At least I don’t have to worry about that,” he said. “Because I can’t drive.”

    He said it the way he’d say anything else. No weight on it. It sat in the middle of a sentence about something other than him.

    (more…)
  • Someone Who’d Been Asked

    Someone Who’d Been Asked

    The summer was ending and he wasn’t looking forward to going back to school. The summer is never long enough.

    A few weeks before the first day, the principal called. She asked if my son would be willing to talk to some prospective upper school students. He’d been a leader last year, she said. The school had a program. The older students called themselves ambassadors. She thought of him.

    I told him she’d reached out. I told him what she said.

    “Really?”

    He sat up a little taller. His chest puffed out just slightly. I told him I thought so too.

    The family ended up not needing him that day. He was still going back to school, still to the same hallways and the same people, but now as someone who’d been asked.

    Every year, the week before classes start, the school holds a welcome back gathering. We go every year. I stand in the hallway and talk to his teachers, the ones who’ve known him for the last few years. I think they’re a big reason for his progress. They cared about him and I’ve never doubted that.

    This year there was news. The school had added eleventh grade, which meant a dedicated upper school floor and dedicated upper school teachers for the first time. He’d be moving up. I hadn’t fully realized what that meant until that night. The teachers I’d been talking to for years would be one floor down. Not gone, but different. I was going to miss them.

    One of the new upper school teachers was someone he’d had before. There was also a teacher we hadn’t met, and we met them that night. And his teachers introduced us to a new student and their parents, someone transferring in and nervous about starting somewhere unfamiliar. We talked about things my son liked about the school, how long he’d been there, what made it feel like the right place. We told them he’d help them get settled.

    When school started, I checked in every few days. He said he was helping. He was.

    A week or so in, I walked into his room and he was on the phone. I asked who it was. The new student, he said. They were on speaker, so I said hello.

    They said my son had made them feel very welcome. They said I was raising a nice boy and a good person.

    He was sitting right there.

    I left the room. They were still on the phone.

  • Once a Month

    Once a Month

    The text came in at 7:15 on a Thursday night. Hey. Please do me a favor and play tomorrow. No charge. I hate 5 players. Messes up the drills. Pleeeeeeze.

    I’d told him a few weeks earlier that I was cutting back. Tennis had been my thing for years. I liked the people. I liked him. I’d driven him to a cataract surgery once, sat in the waiting room like it was nothing. We had a rhythm on the court, the kind that builds up over enough Saturdays that you stop thinking about it.

    The divorce didn’t leave room for it. French lessons went first. I’m still doing Duolingo, which keeps something alive even if it’s not the same as sitting across from a real person working through conversation. Guitar lessons went too, mine, not his. His stayed. That wasn’t a hard call.

    (more…)

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I’m Dave. I write about raising a son with refractory epilepsy.
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