Practicing Life

A few months ago, we went to a water park resort for my son’s birthday.

I like water parks as much as I like dysentery (they’re basically the same thing). But it wasn’t my birthday, and the destination was an impromptu backup after the initial birthday plans had to be scrapped.

My son was understandably excited, so after we dropped off our luggage, we changed into our swimsuits and headed to the slides. The resort was massive. We navigated through the restaurants and arcade until we found the doors to the oversized Petri dish. I grabbed us a stack of towels, took a deep breath, and stepped through.

The park itself was a feat of engineering. Huge slides and pools were efficiently organized to take advantage of every inch of space. The concrete and florescent lights were clear indicators that nothing about this place was natural, but the deep scent of chlorine was very reassuring.

I surveyed the crowd, wondering which one of them was Patient Zero for the impending outbreak. I eyed the teenage staff skeptically, wondering if these were the people with whom I entrust my safety and the safety of my family. But then I saw my son’s face and his smile and I smiled back and got in line with him.

We rode a few slides that, I admit, were fun. Obviously, I had my eyes and mouth closed as tightly as a vault but, for a few minutes, I forgot how my son always winds up drinking the water in the pool and was able to enjoy myself.

From one of the slides, we caught a glimpse of an obstacle course that my son wanted to try, so we walked over and he got in line.

While we waited, I watched the other kids, mostly older, take their turns. The course was a series of platforms tethered to the bottom of the pool. They drifted further apart of closer together depending on the momentum generated by the person on them. Older kids had an easier time to reach the next platform because of their height, but then they would slide off the wet surface into the pool to the delight of their friends.

A few positions ahead of my son was a little girl, maybe four or five years old. She was much shorter than the other kids, which was more noticeable as her mother brought her up to the starting line. I watched as her mother gave her some words of encouragement then slowly backed away.

In my head, I was thinking that the mother should be closer. She was going to need to help her daughter navigate the course. She would have to hold her hand and encourage her, make her feel safe, and help her along. But then the little girl bent her knees and jumped.

She barely made it to the first platform but had enough contact with the surface that she was able to pull herself up. As she eyed the next platform, her mother smiled and the rest of the audience started to pay attention. From platform to platform, she unorthodoxly jumped and made her way across the course. At every pedestal, she’d slide partially off but manage to hold on and pull herself back up. Every time, the audience cheered.

All the while, her mother stood a few feet away. It was only as the girl reached the end of the course that her mother went over to her and celebrated with her. They held hands as they walked off together, celebrating victory.

The thing that struck me most about that situation was the mother, and how she kept her distance to let her daughter try the course by herself. It made me think about all the times I don’t do that for my son. I often feel like I am the “helicopter dad”, hovering no more than a few feet away. If I’m not doing something for him, I’m telling him how to do it so that he doesn’t make a mistake or feel embarrassed for being wrong when he raises his hand to a question he can’t answer. Instead of letting him be brave and celebrating that bravery, I keep him from figuring it out by himself.

I want to make his life easier because so many things are so hard. I want to do everything for him. I tell myself that it’s a matter of safety, or because he needs the extra help because of seizures or medications or exhaustion. But much like how training wheels prevent kids from practicing balance, one of the most important skills for riding a bike, I’m preventing him from practicing life.

I grew up (and still am, to a large extent) afraid of making mistakes. Afraid of trying new things. Afraid of what other people will say. Afraid of putting myself out there. My worst fear is passing those fears on to my son. But somehow, in spite of my best intentions, he continues to be brave. He continues to raise his hand before he knows the question. He still tackles challenges that are much bigger than him. And he still gets himself to the edge and isn’t afraid to jump.

It’s not easy, but I am learning to stand behind him instead of above him. I’d rather catch him if he falls instead of doing everything for him. I’d rather celebrate his victories and failures instead of keeping him from owning either. And I’d rather him practice life while I am here so that I can help him if he needs it, but so I can also watch him learn to balance on his own.

The Long Run

My son stood on top of the first obstacle at the start of the race. He had just given an interview and talked about having seizures that had the crowd let out a collective “aww”. In his hand, he held the blowhorn that would signal the start of our wave. The emcee counted down then helped him push the button on the horn. It called out with its loud sound and the crowd cheered in response. The race had begun.

By the time I had climbed the first obstacle to reach my son, he was already on to the next one. He thought he needed to lead our wave for the entire race, so I sprinted to reach him and told him to slow down. “It’s a long race, buddy,” I said. “This is only the beginning.”

That is how my son approaches most things…head on and at full speed. It’s inspiring to see but also nerve-wracking. He’ll push himself beyond his limits without considering the consequences. For him, the consequence of physical exhaustion is seizures. My wife and I take on the role of the governor to regulate his unstoppable, unrelenting engine. That puts us in the middle of his desire to conquer the world and our desire to keep him safe. It’s an impossible balance and one that I rarely feel successful at. But I tried my best to pace him but also let him open up a little and have fun.

He tackled each obstacle with a determined attitude and a beaming smile. There were people who saw his interview that ran by to cheer him on. He would wave in response as he eyed the next challenge. Another person came up and told him that she had epilepsy, too and that it wouldn’t stop either of them. I was proud of him, for how he was tackling the race, for talking about his epilepsy, and for that smile.

If there were ever a metaphor for our life, it was that race. There will be obstacles that we need to face. There will be times that we need to be brave. There will be times we need to lean on and be grateful for the support around us. But there will also be fun and the sense of accomplishment that comes from doing things that are hard.

As he came down the slide on the last obstacle, I could see a huge smile on his face. He put his completion medal around his neck and told everyone how he made it through each obstacle. Then, on the way home, he said he wasn’t feeling good. He went straight in for a nap and I could tell his body was shutting down. During his nap, he had a cluster of seizures, more than he has had in a while. That was the gut-wrenching part where I questioned whether I let him push himself too hard. I know that uncertain feeling too well, and it’s heartbreaking.

As his body contorted against his will, I wondered whether it was worth it. The sense of accomplishment, the fun, and the experience. Was it worth what was happening to him? The lives of the people he touched when bravely stood on top of the first obstacle and told his story. The awareness he brought to epilepsy. The support he received from the people around him. Was that worth it?

I used to think that was an impossible question, but maybe the answer is simple. What makes it worth or not it isn’t measured by finishes or medals or seizures. What makes it worth it is that feeling that, in spite of his epilepsy, he can do amazing things. What makes it worth it is knowing that we are in this together, for the good and the bad. What makes it all worth it, in the long run, is filling his life with moments that make him smile.

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.

epilepsy dad unhappy roller coaster

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.

epilepsy dad brave challenge