seizure Archives - Page 6 of 15

Windows, Light and Hope

The last few months have been all about change. After a long search, I found and started a new job. We sold the house that we lived in when my son was born back in Colorado. And next month, we’re leaving the apartment we landed in when we moved to Philadelphia.

This is the apartment we lived in when my son’s seizures and side effects were at their worst. The couch by the front window is where we held him for hours during his mood and behavior. I would sit on this couch and stare out the window at the street as he spat, and hit, and screamed terrible things. I would watch the people walk by, normal families with normal lives doing normal things. I wondered if that would ever be us again.

I felt like the world was watching us from the other side of that window, too. We were in full view of the passersby who could see how ill-equipped and unprepared we were for what was in front of us. They saw us sitting on the couch reacting out of fear and desperation. They saw every mistake my wife and I made dealing with our son and with each other.

The way our apartment is laid out, the window by the couch is the only source of natural light. In an otherwise dark apartment during a very dark time, there was no other place to go. So we sat in view of the world outside so that we could see it and let in whatever light we could. We traded agony and exposure for light.

But sitting on that couch and in that light also gave us hope. No matter how dark our apartment and our life got, we could see that there was more. As our son fought against us, we could close our eyes and feel the light on our face and hope.

After a seemingly endless struggle, hope won out. Our son came back to us. He was weathered, as we all were, and different, and stunted in some ways, but he was our boy. Instead of holding my son on that couch to protect him, he would sit next to me reading or playing on his tablet. Instead of me staring at the people walking by with envy or feeling judged by them, I felt like we could join them.

Eventually, we did join them. And now, we’re taking the next step in our journey. We’re not moving to a new place with a blank slate. Our son still has seizures. He still suffers from the side effects of his medicine and the damage that they and his seizures did. We’re bringing our scars with us. But we’re bringing his progress, too. We’re bringing the lessons we learned and the closeness we feel from having survived it. And we’re moving into a place that is full of windows, and light, and hope.

One Thing

Lately, my wife and I have started a new routine. We sit next to each other on the couch, flip open our computers, pull up our calendars, and look at the week ahead. Even though it’s all digital and we share our calendars, it gives us a chance to get on the same page. We can add any events that we miss or decide who is picking up dessert for dinner at a friend’s house later in the week. But it also gives us a chance to create a manageable week for our son.

Fatigue plays a big part in the frequency and severity of my son’s seizures. If he gets too mentally or physically taxed, they break free from their confinement. Instead of happening only in the morning, he’ll have them during his nap or after he goes to bed at night. The more seizures he has, the less rested he is, which causes more seizures. It’s a cycle that we work very hard to avoid.

In most cases, that means we only plan one activity a day. While other kids his age go between team practices, play dates, and birthday parties, he’ll do one thing. Instead of “and”, our lives involve a lot of “or”. A birthday party or a movie. The museum or the park. A play date or a baseball game.

Some days, that one thing is school. Other days, that one thing is therapy. Those activities are so draining to him that, if he goes in already tired, he can barely function. We see that, too, when he leaves school early to go to one of his appointments. But on those days, we don’t have a choice. He wills himself through it but then he stays exhausted through the next day. If that happens, we adjust his schedule to try to prevent those demanding days from adding up. If we can’t, or if we miss the signals that he’s running on fumes, we lie next to him in bed, watching him pay the price.

We had a few of those nights in early summer. School was ending and we tried to juggle therapy and baseball practice. He loved baseball, but it broke my heart to see what the physical exhaustion did to him at the end of the night. It was all too much, but deciding what to cut and when was impossible. School is important and provides social opportunities. Therapy helps rebuild those skills that he lost and reinforce those that he will need. And baseball…baseball made him feel like he was part of a team. And that he was a normal kid.

I wanted to take this post in a positive direction. I wanted to say that “in lives packed with activities and distractions, having to choose what to do helps clarify what is important.” I do believe that, but I also hate having to decide what to take out of my child’s life. I hate having to limit him in any way. To have to pick one thing. For every day. Every week. Every month. With no end in sight. There is no positivity in that.

But as conflicted as I am, it has inspired me to try to make that one thing amazing and special. And I try to be mindful, present, and grateful for that one thing. Because I know that, no matter how much it hurts, one thing is better than nothing.

Heroes

It was the second game of the baseball finals. My son’s team won the first game and another win would secure them the championship. But the good guys found themselves trailing late in game two. With only an inning to play, the top of the batting order came around. If a rally was going to happen, it needed to happen then.

And it did. A leadoff single, followed by another put runners on base. A strikeout came next laying a thick blanket of tension over the spectators. But our team kept hitting, and a base-clearing triple made the game closer. Another few hits, they had rallied to take a one-run lead. With two outs, the bases were still loaded, and my son stepped up to the plate.

It’s impossible to describe the feelings I had watching him knock the dirt off his cleats with his bat. Being down so late in the game, I had already resigned to a loss. The excitement of coming from behind already had my heart racing. With my son at bat, my heart felt like it was trying to escape from my body.

I watched my son as he stood in the batter’s box and took the first pitch. There are no called strikes off the pitching machine, so he watches the first pitch to get the timing. He looked up at me and gave me a thumbs up.

The next pitch came in. My son took a big cut and fouled the ball back to the backstop. He did the same with the following pitch, so he stood in the box with two strikes, two outs, and the bases loaded.

My heart went from thunderous pounding to absolute silence. I stopped breathing. This is one of those scenarios that I replayed over and over as a kid. Now, my son was living it. The chance to put the game out of reach for good. The chance to be a hero.

I wanted him to get that big hit that I imaged myself getting when I was his age. I wanted him to be hero. I wanted for him to hear everyone cheering his name. I wanted him to come back into the dugout and have his teammates tap him on the helmet in celebration.

I thought about how hard this kid had to work just to be on the field. How he had two seizures earlier that morning. How he put up with the ketogenic diet every day. How he takes a handful of pills every morning and night. How much these games take out of him. How much he gives of himself in these games to contribute, even if that means that is all he can do that day.

I wanted the universe to balance things out.

My son stood in that batter’s box and got himself ready for the next pitch. He went through his setup routine and eyed the pitching machine. With a three-count from the coach, the ball left the machine. I held my breath and watched my son take a big swing over the top of the ball.

The mighty Casey had struck out.

My heart sank as my son walked back to the dugout. I didn’t know what to say to him. I wasn’t sure how he was going to react, so I waited for him to say the first word.

He looked at me and said “I hope I get to hit again. Next time, I’ll get a hit.”

He walked past me and his coaches and teammates tapped him on the helmet and said “nice try”, and “good job”, and “nice swing”. Then the team, my son included, took the field with smiles as they looked to protect their lead.

I walked over to talk to my wife. We both wanted him to get that hit. We felt like the universe hadn’t given us what we needed for things to feel fair. But after I told her what he said, we both fought back tears.

It wasn’t about being the hero or winning a championship. It was about being on the field. It was about being a part of a team. It was about doing the best he could. It was about getting hits and striking out. I had gotten so wrapped up in wanting him to feel like a hero that I almost forgot to be grateful that he was there at all.

There will be plenty of opportunities for him to be a hero on the field. But every day, he teaches me lessons about what is important. He lives fearlessly in spite of his challenges. He lives generously even when things are taken from him. He lives every day pushing through failure and willing to try again. He lives his life with a smile.

For that, he’s my hero every day.