Tag: seizures

Breaking The Mold

Regardless of who actually said it (it probably wasn’t Einstein), at times I feel like I’m living the definition of insanity by doing the same thing over and over again and expecting different results.

At the center of this insanity is a compulsion to fit my son into the world’s definition of “normal”. There is a mold made up of societal norms and expectations that I try to force him into, even though it is clear that the mold is the wrong shape.

Still, I try to make it work because I’m scared that, if I don’t, the world won’t accept him and it will cast him out. Or label him. Or make him feel “less than.” As a result, I correct him when he does something that makes him look different from everyone else rather than celebrating his uniqueness. I spend more time trying to make him work inside what the world expects of him rather than finding ways to make the world work for him. And I keep repeating that pattern, in spite of all the signs that it isn’t working and that it isn’t the right thing to do for my son.

I think that is partly because I don’t know what does work for him. The things I try are the things that are familiar to me. They are the things that I know exist. They are the things that I grew up with because somehow, in spite of feeling very different, I managed to get a traditional education, and go to college, and get a job. I was able to existing inside of the “normal” that most other people seem to also make work for them.

My wife is much better than I am at flipping the narrative and seeing that it is the world needs to change to include our son. She looks for places where our son can feel like he belongs rather than making him fit into any molds. But given the state of the world and its indifference or intolerance to anyone who is different, I can see her frustration and anguish every time the world doesn’t understand him, or us, or our situation.

She’s the reason that we are looking at alternative schools for our son. She’s knew it years ago but no one would listen. I might have thought I was listening, but I was too afraid to act on it because I thought things would get better. I thought I could make my son fit into that mold if we just kept trying. Worse, even when I knew it wasn’t working, my fear led me to just keep trying the same things because it was less scary than going into uncharted territory and discovering that he doesn’t fit in anywhere. I was as accomplice in the notion that we could simply remove a few expectations from him to make him fit the mold better. But all that did was make him disappear.

I am trying to stop the insanity. I am trying to redefine my view of the world and what I expect my son’s path to be because I am seeing that his path does not need to look like my path. His path will be made up of his experiences, tailored to who he is. It’s big and it’s scary and I don’t know what it will look like, and it may take endlessly battling the world to make room for him. But that is something worth doing over and over again.

The world seems intent to prove that it is my son who is the wrong shape, but the world is wrong. My son broke that mold the first time he had a seizure. Actually, he broke that mold the day he was born.

Tapped

My son does this thing where the muscles in his face loosen. His cheeks look chubbier as they drape softly down to his jaw. His mouth separates a little, and I can see the tip of his tongue pushing through. Sometimes he’ll swallow slowly, which at the same time seems automatic but also like it takes all of his concentration and energy.

That is one of the signs we see that lets us know when he is tapped.

There are other signs, too. He has an even harder time with his executive functioning and memory than he normally does. It’s more difficult for him to regulate his emotions. He gets angry and frustrated. But that look on his face is the look of someone who has given everything they can for the day. It’s how we know he’s done.

This isn’t something that only happens occasionally.

It happens every day.

There are days when it happens sooner, usually around this point of the school year or when we did such things after a baseball game. There are days when it happens later, like on a lazy weekend. And there are days when it happens more than once, usually once before and then later on after a nap. But it always happens. Every day. Every day, my son gives everything to get through the day.

Every day, my son gets tapped.

The other day, I sat on the edge of the bed with my son and studied his face as he leaned against his pillow, watching his iPad. I tried to be present with him. I asked him what it felt like and if there was anything I could do for him, but even asking a question forces him to try to muster enough energy to think and respond. He’s such a good kid that, even tapped, he tried to find enough energy to process my question and think of an answer. It felt cruel. I felt terrible. And so I didn’t ask any more questions, and I sat with him and rubbed his head and let him tune out.

Unless you knew him, you wouldn’t know that anything was going on. He might just look like a tired kid. Its invisible nature is one of the many curses of epilepsy. His doctors, who have seen the same in other patients as they see in my son, understand it. But it’s harder to convey to others because they don’t know him and because they don’t have a reference for that level of exhaustion.

“Imagine climbing a mountain. Now, imagine if everything you did felt like climbing a mountain. Now, imagine if that is what you felt like every day. “

Every day, my son climbs that mountain. Every night, he falls asleep only to find himself back at the base of the mountain when he wakes up. Then he starts to climb again. He pushes, he grinds, he stumbles, he gives everything he can until his body, and his brain can’t do anymore.

Every. Day.

He’s eleven years old.

The Long Plateau

We are standing on a plateau.

For the past few years, my son’s condition has remained the same. He still seizes almost every day. He’s still on a handful of medication multiple times a day and the ketogenic diet. He still struggles in school and navigating relationships with his peers.

I should be grateful that he hasn’t gotten worse.

The beginning of our journey with epilepsy was the equivalent to falling off a cliff. We went from a normal childhood to fighting for his life in the matter of months. We went from school and friends to hospitals and doctors and nurses and therapists. We went from playing hockey to being toxic on medication and needing to be carried to the bathroom. Back then, I would have longed for things to stay the same.

Once he was stabilized, we spent the next few years trying to rebuild what he’d lost. Progress was agonizingly slow, especially as we discovered more pieces of him that could not be rebuilt. We stumbled every time we pretended that things were ever going to be like they were before. While we were no longer falling, the slope of ascent was so gradual that it was hard to tell if anything was getting better.

Eventually, some things did get better. There were fewer seizures, confined mostly to the early morning. He graduated from a handful of therapies. He stepped foot in school again. Some things did get better, but not back to where he was before that first seizure. And not any further.

Are we really plateauing or does it just feel that way? Are we doing everything we can to keep making progress or, like a person trying to lose weight, are we giving the appearance of doing everything but secretly skipping workouts or sneaking in extra calories? Or have we truly reached our limit of progress?

Years ago, when the direction of my son’s condition turned around, every day probably felt this way. I wondered whether things were as good as they would get, much like I’m doing now. I wondered if we were doing everything we could and whether we we doing everything right. I looked for someone to blame rather than accepting the reality of the situation. Because it’s impossible to believe that, no matter what you do, things will never be what you though they were going to be.

The longer things stay the same, the more I forget how far we’ve come. The more that “this is it” feeling takes over. The longer I sit in that feeling, the harder it is to hold on to hope for better.

And this plateau feels so long.