dreams Archives - Epilepsy Dad

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.

Before my son was born, we already had his name picked out. The name came from a hockey player on a team that I liked…not my favorite player, mind you, but rather a player who’s last name sounded like it would be a cool first name for a future hockey star. And so he was named, and so began his inevitable indoctrination in to the world of hockey.

On my son’s second night of life, he and I laid on the couch in hospital room watching the Colorado Avalanche on television. Well, I was watching. He was sleeping and absorbing the game through osmosis.

When he was two, even before he had his first haircut, he got his first hockey stick. He was just learning to run, but we were already playing floor hockey almost every night after I got home from work. The more exposed to the game he got, the more aspects of it we incorporated in to our play, from national anthems, to player introductions, to raising the Stanley Cup after the last game of the night.

When he was three, he broke his foot jumping off a chair. The break required a cast (or four casts, since as new parents, we hadn’t quite figured out how to keep his cast dry between the bath and the snow on the ground). But that didn’t stop him from playing hockey, shuffling around and taking slapshots from his knees.

Once his foot healed, we bought him his first pair of hockey skates. We went to a hockey store where he was surrounded by every pad, stick, and puck he had imagined himself playing with while watching the games on television. He sat on the bench getting sized for his stakes, ready to take the ice.

When he finally hit the ice, I half-expected him to skate circles around me. He didn’t, of course, and he spent most of is time on the ice (either from falling or intentionally sliding on his belly), but there were moments pushing around the skating aid where I could see his gears turning, imaging himself crossing the blue line for a breakaway goal.

From there, we took a parent-tot skating class before he joined the “learn to skate” program. During every class, he would look down the ice at the older kids in the hockey class, and he would ask how much longer before he could join them. It motivated him to get better and, a few months before his fifth birthday, he was finally registered for the “introduction to hockey” class.

The first day of class, he filled the locker room with electricity as he was finally able to put on all his hockey pads and jersey. He lined up with the rest of the class, ready to take the ice. The door opened, and the miniature hockey team took to the ice. When it was my son’s turn, he put one foot on the ice, then the other, and then fell straight down. Of course, wanting to record this moment, I have this inauspicious start on video, and I had planned on showing his teammates someday when he was playing in the National Hockey League.

But then, shortly after his classes started, he had his first seizure. By the end of the year, his seizures had gotten out of control, and his fatigue and the side effects of the medicine made skating a dangerous impossibility. He lost control of his body that he was once able to control so completely. He was ripped away from the sport and the activity that he continued to talk about and watch on television every day.

We no longer thought about skating or the NHL, we just hoped that the seizures would stop, and that the damage done from the seizures and the toxicity and side effects from the medicines wasn’t permanent. There were days when my son was too tired to function and too wobbly to stand but he would try to go in the basement and take shots. It broke my heart to see him like that, but I would go down and play with him, sometimes fighting back tears on the really bad days.

There were days when I thought that was where our story would end. But thanks to the amazing people who cared for him, my son’s condition started to improve. Although we are not seizure free, they happen mostly at night. As we continue on the ketogenic diet and adjust his medications, my son has regained much of his balance. We started working with an off-ice coach so that he can be more active and build his stamina doing something that he loves. Then, a few weeks ago, a day we had almost stopped hoping for came.

We hopped in to a taxi and headed to our local ice rink. My son put on his helmet, his jersey, and we helped him put on his skates. He stood and started walking down the hallway towards the ice. The next few steps felt like they came in slow motion. I held my breath as he grabbed the side of the boards with his right hand and stepped on to the ice with one foot and then the other. After a few seconds, he was free of the boards, the edges of his skates digging in to the ice and propelling him forward.

Even though we only spent a short amount of time on the ice, it was enough for mark a milestone in our journey with epilepsy. We don’t know what the future holds, how long the diet or the medicine will work to control his seizures. We don’t know if he’ll be able to continue to skate if his seizures spike again or if he develops new side effects or complications as he ages. But for as dark as things have been, as much as my son has gone through, and as impossible as everything had seemed, for one afternoon, he was able to do what he loved, and we celebrated that moment as if he had just won the Stanley Cup.

Tag: dreams

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