One year ago today, in a pool at a water park, as we were killing time waiting to ride the Polar Express, Edward had a seizure. I don’t want to use hyperbole and say it was the most terrifying one he’d ever had, and honestly after so many of them you do get, if not “used to” them, at least more prepared for them, but it was the first one he’d had in water, and so it added that extra bit of panic to the mix. My wife was right with him, she took him out of the pool, nobody else in the crowded room seemed to even notice, and it capped off a year of terror, horror, and hopelessness for our family. And then he stopped having them.
We don’t know why he hasn’t had another seizure, and honestly I don’t think the doctors do either. He is on the same medication that he was on before that didn’t work, only now it works. Perhaps his brain is older and more developed? Perhaps there were environmental factors in play? Perhaps God and the devil finally settled their bet and went home? We have no idea. But, not to look a gift horse in the mouth, Edward has not had a seizure in one year. And it is fantastic. We will certainly be having cake tonight.
Of course the first month doesn’t count. He had been a month without a seizure before, only to have them return, more violently than ever, so in that first month nothing had really changed. Business as usual for parents of children with severe epilepsy. By the second month that glimmer of hope started to shine through, although it had to be quickly extinguished because you really can’t get complacent when your child’s life is literally at stake. You have to remain vigilant. Even at the end of the third month, every little noise from his room was cause enough for us to rush in and make sure that he was okay.
As we moved into the fourth month, and his incredible Make-A-Wish trip, we were still fearful that a week of excitement in the big city would trigger something. Stress, lack of sleep, bad eating, all of these things can be seizure triggers, and there would be plenty of all three on this trip. Good stress is still stress on the body. And yet he made it through. And so did the rest of us. I think it was after that trip that we finally started to relax a little.
Month five, post wish, was a funny place to be at. He still had to wear his helmet at school, and the doctor’s orders really hadn’t changed at all. We had rescue meds with us wherever we went, and yet he had never been that long without a seizure before. Could the streak continue? It started to seem possible.
At six months it became time for swimming again, which brought all of those old fears right back. He would be at camps (where he had had a seizure the year before). He would be in the water (where his last seizure was). Everything he did seemed like a potential threat, and you didn’t want to jinx the string of good luck. The year before that, his medication had caused him to stop sweating. Sure it was a different medication, but you can be quite sure I checked to make sure he was damp almost every day this summer.
Seven and eight months passed and now we started to assume he might not have another seizure for a while, although the fact that his sister’s (much less threatening) epilepsy had returned and put her back on meds was troubling for the whole “gone away forever” narrative that we were attempting to create internally. Still, we asked his new school for no restrictions. No helmets. No limitations on the playground. After all, if he were an adult with no seizures for so long, he could drive again! Why couldn’t he go on the play structure? Thankfully they agreed with us. His new school is turning out to be a great fit.
Nine months. Ten months. Eleven months. We almost don’t think about it every day now. Almost. When I hear him make a weird gurgling noise from the backseat (which he does every damn day) I only give it a 50/50 chance of a seziure and I calmly glance back in the mirror to confirm that he is just being a weirdo and not dying, rather than slamming on my brakes in a mild panic attack. This is good. It is progress.
Today it has been one year. There are no more days when I can look back and say “Well, last year he had a seizure doing this at this time…” Nope. Starting tomorrow, last year he was fine. Every day I can say it. Last year he was fine. We still don’t leave him in the tub by himself, and we still keep the floaty on him while he swims, an arms-length away from an adult, but I do let him play in his room by himself without checking on him every five minutes. I let him out of my sight without too much worry. He is six, and he needs some moments without a parent breathing down his neck. And besides, even when is out of sight, if you know Edward you know that he is never out of earshot.
A year with no seizures. Who’da thunk. Here’s to another one.