seizures Archives - Page 3 of 23

There Is No Blue Wire

We don’t really know how long our son was in status epilepticus.

We had moved to a new city only six months before, around the time when my son had his first seizure. He had his second a few months later, which lit a fuse inside his brain. We started to see more “ticks”. I didn’t think anything about them, at first, because they looked very different from the seizures we saw. But he started having more of them. The fuse was burning and it was quickly reaching the explosives.

In movies, when a hero defuses a bomb, it’s very dramatic. She’s on the radio with the experts who are talking her through the process.

“Take off the cover.”

Our hero unscrews the cover, exposing a spaghetti of wires. “Done,” she says. “I see the wires.”

“Now, “ a voice says through her earpiece, “carefully trace the wires back to their source. You should see a control board with a power source.”

Our hero uses the back of her hand to wipe the sweat from her brow. She squints her eyes as she uses the screwdriver to carefully push wires out of the way to reveal a circuit board with a series of glowing lights.

“Done. I see the board, ” she confirms.

“Ok, coming off the back of the board you should see a red wire and a blue wire. You need to cut the blue wire.”

Our here slowly grabs the wire cutters from her pocket. In her left hand, she uses the screwdriver to push back the wires further. As she starts to weave the wire cutters into position with her right hand, she stops.

In movies, when a hero defuses a bomb, there is a blue wire. In our story, there was no blue wire. The spark ignited. The bomb exploded.

Inside my son’s brain, an uncontrollable chain reaction began and sent electricity coursing through every cell. His body contorted. He was disoriented. He slept. The cycle repeated for days as another team of doctors tried to contain the secondary effects of detonation, like stopping the spread of radiation after Chernobyl.

While the doctors managed to prevent the worst possible outcome, the damage was done both from the seizures and the tactics employed to put out the electrical storm. We’re still dealing with those consequences years later. But our son is here, and he’s happy, and we are grateful.

Yes, And…

We didn’t ask for this. One day, we woke up the same way we always did, and that night we were walking back to our hotel room from the hospital in a strange city after my son had his first seizure.

That was six years ago.

For many of those years, I fought what was happening. I didn’t want it, and I thought if I resisted it that it would go away. I looked at what was happening, and I led with “no.”

That “no” manifested as resentment and anger. I wasn’t angry at my son. I was angry at epilepsy. I was angry at seizures. I was angry at the medication and the side effects. I was angry at the universe for doing this to my little boy. The seizures, the meds, the side effects. The impact on his future.

Even though I wasn’t angry at my son, based on the way I was acting, to him, it probably felt like I was. I worried that he was internalizing what I was projecting. For years, he walked around saying, “I’m sorry” every time I corrected him or asked him to do something.

I tried to change how I was showing up for him. Instead of fighting what was happening with a “no,” I moved on to a “yes, but…” I admitted that epilepsy was happening, but made excuses so that I wouldn’t have to give in to that reality fully. “Yes, this is happening, but someday it won’t.”

The “but” in “yes, but…” wasn’t about giving up hope. It was about a lack of acceptance. There was still that resistance that got worse as things with my son got better. Instead of a bump in the road, every setback, every new symptom, every increase in seizures felt like falling off a cliff.

That falling, too, surfaced as frustration and resentment. I had little tolerance when things weren’t right. I would snap when the smallest thing went wrong. I thought that I could correct our way out of this if I could get everything perfect. I kept trying to control and change the situation into something that it was never going to be.

When we are no longer able to change a situation – we are challenged to change ourselves. ~Viktor E. Frankl

In the world of improv comedy, there is a concept of “yes, and…” The idea is that a participant takes what is given and adds to and expands it. Instead of “no” (the brick wall) or “yes, but..” (the resistance ), the “yes” encourages acceptance and the “and” expands.

Yes, my son has epilepsy, and he is amazing. Yes, he has seizures most days, and he also goes to school and plays baseball and loves Fortnite. Yes, we are on a different path than we thought we were going to be, and the future is full of new possibilities.

I’m not going to lie, even as I typed the sentences above, I struggled to think of the “and…” My brain isn’t wired to find the positive in impossibly difficult situations. But the more I do it, the easier it will become. The more I practice, the more my brain will automatically find the possibility. I can’t change the situation, but I can change how I approach it and how I engage with him. Because he truly is amazing, and he needs to feel that from me.

Yes, my son has epilepsy, and I am the luckiest dad there ever was.

Different Dreams

I don’t remember ever having dreams of what I wanted to be when I grew up. I had friends who wanted to be cowboys, or baseball players, or astronauts when they were children. As they matured, they wanted to be doctors, or lawyers, or police officers. And I once knew a person who dreamed of being a circus performer, which might seem weird, but I knew him in a city that had a “clown college.” But I don’t remember having dreams of my own. I knew someday that I would be older, but I didn’t know what I wanted to be doing when that day arrived.

After we moved to Florida in my mid-teens, I got it in my head that I wanted to be a marine biologist. It seemed like a good fit. I spent most of my summers when I was younger in the water, catching fish and crabs. I wasn’t afraid to pick up the random sea creatures that I’d come across. And, most importantly, a girl that I had a major crush on also wanted to be a marine biologist and she agreed to be my lab partner because of this newly developed common interest.

I would have made an excellent marine biologist. Ignore the fact that I won’t go in water that is below 80 degrees. Ignore the fact that I’m more of a sinker than a swimmer. Ignore the fact that I don’t like being cold and wet. Ignore the fact that I get seasick. If you ignore all the things that are in the job description that involves being in or on the water, I would have been great.

So, I signed up for a marine biology class in high school and sat across the room, watching my romantic interest instead of the fish. But she was watching the fish, but also started seeing one of the popular kids. As a result, my interest in her began to wane, and, coincidentally, so did my interest in becoming a marine biologist.

My son, however, has known since he was born that he wanted to be a hockey player. He and I started playing hockey together before he could walk, and his love for the sport has only grown. Over the years, he’s added careers like a baseball player and professional video gamer. But they have been “in addition to” never “instead of.” Even now, at ten years old, he’s waiting for the call from the Colorado Avalanche or the Vegas Golden Knights to tell him they need him, and we’ll be on a plane.

To help him pursue that dream, I took him to skating lessons starting when he was two. At four, we added the hockey classes. The look on his face when he got his first official jersey is etched in my mind.

But then, just before his fifth birthday, he had his first seizure.

The first seizure didn’t adjust his course, but the second one did. And the third. And the three months in the hospital battling status. And the exhaustion and side effects of the medication. For more than two years, we struggled to get him back on the ice. We’d play hockey in the basement, but the level of exertion necessary to be on the ice and playing hockey was too much. We’d try a few classes, and his body would shut down for days. During one class, he had a seizure. The fighter that he is, he got right back up and tried to participate, but we needed to keep him off the ice for his safety until we could figure something out.

We added tee-ball and baseball since those sports were easier to manage breaks and his level of effort. He is good at baseball, and he likes it, but he keeps asking about hockey. He has a friend who has been playing for a few years now, and I can hear it when he talks about his friend that he wishes it was him on the ice instead. But it isn’t. And the reality is that I don’t know if it ever will be.

The reality is that my son’s seizures are still not under control. The reality is that the more he pushes himself, physically and mentally, the more exhausted he gets, and the more seizures he has, which perpetuates the cycle. No one can tell us if that will ever get any better, so we’ve tried to structure his life in a way where he gets the most out of it while minimizing the impact of his epilepsy. But the thing that he loves the most, the thing he’s dreamed about all his life, is the thing we haven’t figured out how to give back to him.

I never had dreams when I was younger, so I don’t feel any remorse or regret for where I wound up. I think I am where I am supposed to be, with the family I love and a job in a field that I’m good at and find rewarding. Looking back, the choices that I made, even subconsciously, all aligned on a clear path to here.

I believe the same will happen for my son. He will be where he is supposed to be. But I’ve always wanted to give him every opportunity to succeed, every opportunity to explore every possibility, and to feel supported every step of the way. Part of my purpose is giving that to him, and doing everything I can to help him achieve his dreams.

It breaks my heart to think that I may need to tell him that he needs to have different dreams.