The Day My Son Stopped Skating

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.

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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.

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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.

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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.

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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.

epilepsy hockey seizure skating keto

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.

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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.

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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.


What Can’t Be Seen

Earlier this year, we bought a stroller for our 5-year-old son. After his condition deteriorated in the hospital, he came home with very little physical or mental stamina. Every exhaustive mental activity drained him, and ever labored step sapped his energy. Since we live in the city, getting anywhere involves walking, so we found ourselves isolated in our apartment. With no social interaction, no friends, and no sunshine, our confinement raised the tension in an already strained situation, which was not good for our family or for his recovery. The stroller gave us a way of getting out of the house without having to carry him so that we could rejoin the world outside.

Our son is tall and weighs 45 pounds, so we bought the biggest, most durable stroller we could find. Even so, he barely fits inside with a small bend of the knees and his head is a bit taller than the top of the canopy, but he is comfortable and the stroller lets us get to where we need to go without completely exhausting him.

what cant be seen epilepsy

One day, we headed across town to the market. As we turned up a street, I saw a woman sitting on a bench on the sidewalk. She was looking at us as we approached. It’s the city, so of course I know not to make eye contact. But as we passed, she pointed to the stroller and blurted out “Why is that boy in a stroller? Is there something wrong with him?”

We didn’t respond and continued past her as she raised her voice. My son didn’t hear her, or he didn’t understand what she was asking.  Her question didn’t sound curious. It came across as accusatory, a reaction to seeing a big kid being pushed around in a stroller that was almost too small for him. It was the tone that is used to admonish a parent that is spoiling their child, not one of compassion for a difficult situation or even an innocent inquiry in to a situation that she didn’t understand.

I read a related story a few weeks ago about the family of a disabled girl having a note left on their car for parking in the handicapped spot because “they didn’t look handicapped”. The girl actually has a brittle bone condition, invisible to anyone that doesn’t know her story, hidden on the inside, behind a curtain of skin.

My son doesn’t look disabled, either. Unless you know him, you might not notice his drooping eyes that reveal his exhaustion. You might not know that his exhaustion comes from seizing all night long or that, in an unforgiving cycle, the exhaustion also leads to an increase in seizures. You might not see his behavior or psychological issues that come from an uncontrollable seizure cluster or the side effect of a medicine that he is taking to keep his seizures just barely on the side of control. You wouldn’t know about the nights that he has been so overtired that it took us hours to calm him down so that he would sleep.  You wouldn’t know that the dark circles under our eyes are from the endless watching of the baby monitor and waking on every sound that comes from his room.

As I was writing this post, I shared it with my wife. I was struggling to find its meaning and the lesson that I hoped to share. In response, she posed a number of questions. Do I wish people wouldn’t judge my son for what they cannot see? Do I wish my son would learn to accept this judgement and not let it bother him? Do I want my son to learn from their mistakes and not do the same to other people?

Of course, I want all those things. I want my son to not be made to feel different, even though he is. I want him to understand that the world is filled with ignorant and callous people who will judge him for being different, and I want for their comments to bounce off him, even though I know that they will always hurt.

I want him to remember what it feels like to be made to feel different by people who don’t know him or his situation. Even if he can’t change the people around him, he can remember that feeling and can choose to be a person that leads with compassion instead of an ignorant judgement.

I’m just as guilty of rushing to judgement as the woman on the street. I make assumptions and use my own biases lunging in to situations without stopping to consider the entire story. Maybe the person that is angry on the other side of the phone just lost a loved one or is having a problem at home. Maybe the dad that snapped at his kid isn’t a bad father but is frustrated with something going on at work or is trying to deal with behavior issues stemming from side effects of an epilepsy medication.  Having gone through those situations, I know how much a little empathy would have meant to me. Maybe the lesson is that if my son can lead with compassion and understanding, then so can I.

On second thought, maybe the lesson is that if he is going to do it, then so should I.

Learning To Be Brave From My 5-Year-Old With Epilepsy

A few weeks ago, before school started, my son was invited to a play date with other kids that were going to his new school. It was a good opportunity for us to meet the parents and for our son to meet his future classmates, and he was excited, even though he was having more seizures in the days prior. The day of the play date, he took a nap, woke up, and had another big seizure as he was getting dressed. With eyes full of tears, he said that he didn’t want to go anymore. I sat down on the floor next to him, held him and rubbed his back, and I asked him why. “Was it because of the seizure?” Initially, he said yes, but then he said that it was because he was nervous.

I let him know that it was okay to feel nervous, and that everyone gets nervous. I told him we didn’t have to go, or we could go and leave if the playground became too overwhelming. He cried for another minute, then he took a deep breath, put on a very stern face, and said out loud “I can do it.” He stood up and finished getting dressed. I checked in with him a few more times as we packed up his stroller, giving him probably too many opportunities to change his mind, but he was committed and we headed down the street to the park.

When we got to the park, he stayed by my wife and I initially, but he introduced himself to the other children. Eventually, one of them led him over to a tree that they were climbing, and my son eagerly joined in. He would climb the tree, maneuver to a branch, and drop down, Ninja Warrior-style.


On one of his climbs, he had a seizure. I saw his body stiffen and heard the tell-tale sound that accompanies his seizures, so I grabbed him and gently lowered him to the ground.

Once the seizure stopped, my mind started to race. Did the other kids see? Would they cast him aside? He wet his pants during the seizure. Did the other kids see that? Would they make fun of him? I questioned whether we should have brought him to the park at all and why I convinced him to put himself out in front of these new people when I knew he was already having a bad seizure week.

As he started to regain his composure, I asked my son if he was alright, and if he wanted to go home. “No,” he said. “I want to stay.” After a few more minutes, he stood back up. We dusted him off and did an inspection. His pants weren’t that wet and, aside from being a little hazy, we couldn’t see anything wrong. I asked what he wanted to do, thinking that running away and going home was the best option. “Climb the tree,” he said, as he walked back over to the tree. He grabbed a think branch with both hands, put his foot on the trunk, and pulled himself up.

I was never very brave, and I struggle to not project my fear on my son. I want so desperately to not poison his bravery with my overbearing desire to protect him from the world.  I was different as a kid. I was awkward, and uncomfortable, and afraid. I know what it is like to be picked on for being different. The world can be a cruel place when you are different.

My son has epilepsy. He has seizures. That makes him different, too. There will be times where those differences are on full display, in front of his friends and his peers. I don’t want him to feel shame for who he is or because he has epilepsy, so my natural tendency is to hide. But he is teaching me that the right answer isn’t for me to encourage him to run away when he has a seizure or when he falls down. It’s my job as his dad to encourage him to put himself out there, even on those days when it’s hard. It’s my job to encourage him to get back in to that tree and climb.