Epilepsy Dad

Facing Things Head On

My son feels the need…the need for speed. Ever since our last trip to an amusement park (which ended with two missing teeth), he has asked to go back. So, on spring break, we surprised him with a visit to Busch Gardens.

For the hour-long car ride, we kept our destination our secret. But as we pulled near the parking lot, the tell-tale blue track of a roller coaster poked above the trees. His excitement filled the car. As we drove around the parking lot that bordered the park, all he talked about was riding a roller coaster. He wanted to go back on the one that had claimed his two front teeth last time. Calling it out was more because it was one of two “big boy” roller coaster that he was tall enough to ride. But I liked to think he wanted revenge.

Unfortunately for my son, his date with his nemesis would have to wait. Grandma had bought us tickets for a special safari. The disappointment was clearly visible on my son’s face, but we still had a great time. As soon as we waved goodbye to our guide and collected our things, though, he led the way to his date with destiny.

The last time we rode this roller coaster was my son’s first time on a big one. It includes an unexpected acceleration right out of the gate that launches the cars into the sky. My son’s face hit the harness, leaving him bloody and toothless. But otherwise, he seemed to enjoy it and he even rode another roller coaster later in the day.

This time, I expected him to have a much better experience because he was older and a more seasoned rider. That was not to be the case. After the initial speed burst, he was audibly questioning why he made this “bad choice”. I held my hand across his chest as best I could to comfort him (and try to keep his new teeth in place). After another dip and a barrel roll, he said he didn’t feel good. I could see the end of the ride coming up and hoped he could keep his breakfast from coming out. Fortunately, we made it. The ride stopped, the harness lifted, and he carefully climbed out of the car. For the next 30 minutes, he continued to question his life choices. Eventually, he decided that he needed to be “maybe 20” before he tried again.

I felt terrible. Partly because, when we stopped to see our picture from the ride, I laughed. A lot. Also partly because we bought a copy of the picture. And also because I posted it online. And now because I’m including it in this post.

But I also felt bad because my son was genuinely disappointed in himself because he got scared. Not because he has epilepsy, which has often been a source of frustration. Not because of his meds or because of how many seizures he had. But because he was a normal kid that bit off more than he could chew.

Over the past few years, my son’s condition has limited aspects of his life. It’s easier to blame epilepsy when things go wrong. It’s more convenient to have a culprit. But we taught him to listen to his body, to be brave, and that he doesn’t need to do anything that he doesn’t want to. That guidance has served him well, and he’s one of the bravest kids I know. It’s helped during those long hospital stays with relentless testing and needle pricks. It turns out those lessons we taught him are the same he will rely on when things don’t work out.

After a long afternoon playing games and riding the kid’s coaster, my son looked at me with a serious look. He took a deep breath, stood in front of me and told me that he wanted to go back on the big roller coaster.

My first instinct was to protect him. I didn’t want him to have to put on another brave face and will himself through one more thing. He does it at the doctor. He does it when his body is exhausted but he wants to play or feel normal. I told him that he didn’t have to and that we could ride it next time. But he was determined.

We walked back over to the where our day began. Without hesitation, my son walked past the height check and made his way up the tunnel towards the line. He was meeting this challenge the same way he had faced those presented by his epilepsy.

Head on.

Balancing Out The Hard Stuff

I followed my son as he ran on to the field at the football stadium. He sprinted down the same tunnel as the players, past the same motivational signs, and on to the same grass. Underneath his coat he wore the team jersey but with their dark green helmet clearly visible on his head. We stood on the field and looked at the 60,000 seats from the same perspective that the players do. The experience was very, very cool.

I was grateful to be standing on the grass with him. I smiled as I watched his face wear a combination of amazement and excitement. This wasn’t an experience that many people get, but it was one of many that my son has had. When he was in the hospital, he met athletes and superheroes. He attended movie premieres and dance recitals in the lobby. He won bingo and has appeared on the hospital’s closed-circuit TV. He was in a fashion show and a music video.

Thinking back on those experiences, I wonder how many of them we would have had if my son hadn’t had epilepsy. Not because they were at the hospital, but because I wouldn’t have taken advantage of them. Or I would have let my wife take him by herself because I wouldn’t have known how special those moments were. I would have missed how brave he was raising his hand to ask the ultimate frisbee team a question. I would have missed how special he felt seeing a movie before any of his friends. I would have missed the look on my son’s face standing on that field. I would have taken those opportunities for granted and missed out on them completely.

As grateful as I am for those opportunities, I struggle with the unfairness of it all. Why my sweet, innocent child was burdened with such an unfair, unrelenting condition. Why he walks around in a fog of medication. Why he has difficulty processing and why he is always exhausted. Most days, the scale seems very much tipped against him.

And yet, these moments make him smile. They let him be a normal kid. They also make him feel special. They’re a gift from the universe trying to balance out the hard stuff that my son goes through every day. They are also to teach me to appreciate the opportunities and to be present during them with my son.

I don’t know if the scale will ever be even. As his father, nothing can undo the memories of how bad things got for my son. But the part about being present? I’m grateful for the lesson.

Doing The Best I Can

As parents, we have to figure out what lessons we want to teach our children. The balance of our “when I have my own kids, I will/will not” promises are finally called due. We get to decide what to keep from our own childhoods and what to throw away. But knowing what to keep isn’t always clear and, worse, it can be terrifying. It involves shifting perspective enough to question some fundamental truths.

When I was growing up, I never thought anything I did was good enough. I took little joy from what I achieved because there was always someone who did it first, faster, or better. There was always room to grow. Accomplishments were expected but rarely celebrated. Humility was a virtue and pride was a sin. These messages became the foundation for how I felt about myself and how I lived my life.

It wasn’t always obvious to me that this part of my philosophy wasn’t something that I wanted to pass on to my son. After all, I turned out okay. I am humble and grounded. I’ve had amazing experiences. I have a good job and the best family. Knowing that there is always someone better means striving to work harder, to learn more, and to do better. It made me a perpetual student and a life-long learner.

This spirit of growth and learning is one that I want my son to have. But before he started having seizures, I wouldn’t have thought to teach him that lesson in a different way.

I remember sitting by his bedside in the hospital. The dark room was lit only by the light coming from the EEG monitor that showed constant, wild activity. His body had gone toxic from a bad reaction to one of the medicines we hoped would stop his seizures. It didn’t. The seizures raged on, and the toxicity left my son immobile, ataxic, and unable to form thoughts or words. I felt helpless. I was afraid. I prayed. This lowest of points stretched on for days.

When he could start to form words again, it was the most amazing thing I had ever seen, and we cheered. When he could hold his frail body up by himself, we cheered. When we left the hospital, even though our boy was not quite himself, it was another cause for celebration. With each milestone he passed, we cheered. If he stumbled, we acknowledged how hard he was working. There was no “but”. “But, you used to be able to do it better.” “But, those other kids are faster.” For the first time in my life, I saw what it meant to work hard and to do your best and for that to be enough. “That was great, buddy. You worked so hard to do that. I’m proud of you.” Full stop.

I hate epilepsy. I hate what it does to my son. But I would hate myself if I didn’t learn the lessons that this experience is teaching me. I don’t want to raise a child that always gets a trophy. But I also don’t want to raise a kid that thinks there is a trophy for everything and that he never gets one. I want him to be proud of doing the best that he can. That should be a good feeling, not one that should lead to shame. Epilepsy showed me how dark things can be, and these moments of grateful hope and joy can shed a little bit of light.

It turns out that this approach has led to my son working hard and liking to learn new things. Except he feels good about where he is. He is also braver than I ever was, willing to try new things outside of his comfort zone. He’s also a good sport and as grounded as any 7-year-old should be. Those qualities that I had hoped to pass on to him are there. Except his motivation isn’t based on feeling less than everyone else. His motivation is based on being the best him that he can be and being able to feel joy in that.

Before you feel bad for the other little boy in this story, this experience has taught me the same lesson. In celebrating my son’s accomplishments, I’m starting to acknowledge my own, too. Just a little. But I’m doing the best I can.