seizure Archives - Page 7 of 16

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.

The Importance Of Scoring Goals

Coming out of the womb, all my son wanted to do was play hockey. He started skating before he was two, and we played floor hockey almost every day, even when he had a broken foot. When he was five, before we left Colorado, we signed him up for an “Intro To Hockey” class. Watching him step on to the ice (and fall) for the first time in full hockey gear was one of my favorite moments. I remember him skating around during warmups as if he was preparing for an NHL game. His energy was electric. Every time he made eye contact with me, I saw the look on his face that, as his father, I’ve strived to replicate ever since.

The onset of his seizures changed our lives in many ways. Huge ways. Profound ways. But one of the hardest things for me to accept was taking away that look my son had when he was on the ice. When the seizures started, he would ask when he could get back to playing hockey. When he was at his worst, he stopped asking altogether. It was like taking air from him when he desperately needed to breathe. He needed to feel a connection to something to take away the fear and uncertainty. We couldn’t play floor hockey. We’d watch hockey on the television but I didn’t know if that was helping or hurting. They were pictures of a lost love that stayed just out of reach.

After a long recovery, but amidst continuing seizures, he picked up his hockey stick again. Our epic battles of floor hockey returned. He skated, but it was inconsistent and only as his endurance, balance, and ataxia would allow. We found a coach to work with him off the ice on hockey skills. It was good to see him back in the world that he loved, but those activities were only parts of the whole. As he was able to do more of these activities, he started asking about ice hockey again. Every time he did, I still didn’t have an answer. It broke my heart.

For two years, that question stabbed me every time he asked it. Finally, though, after grueling rehabilitation, we did something I thought was impossible. We signed him up for another hockey class. Granted, the first class didn’t go as planned. As I mentioned in a previous post, that first time back on the ice include a handful of seizures. But he stuck with it and he’s been going as much as his body and mind will allow. There were a few sessions he missed because he was too exhausted. But he kept going back, even when the drills were hard and as he struggled to control his body. He falls a lot, maybe not more than other kids, but every fall takes its toll more on him. Physically and emotionally, after practice he is spent, wasted and unraveled. But during class, he’s so, so happy.

Last week, they set up nets and let the kids move the puck from one and to the other and shoot. Unless you’re a goalie (or even if you are), scoring a goal represents one of the defining moments for a player. Watch a young player in the NHL score his first goal and you can see that lifetime of waiting finally end. I felt the same way watching my son push the puck across the ice and take a shot. It seemed like a lifetime had passed since that class in Colorado. But after he took a shot, and after the puck slowly crossed into the net, he made eye contact with me. I saw the look that I wondered if I would ever see again.

During the car ride home that night, we watched the videos I took of him on my phone. “Did you see me score a goal on the backhand?” he asked. “Of course, ” I replied and restarted the video. We watched it over and over. Every time, I was more grateful than the last.

Backhanded goal and celebration…

A post shared by David Monnerat (@davidmonnerat) on Feb 20, 2017 at 2:44pm PST