You Can Dance If You Want To

Last weekend, we went to an art festival down by the river. The sun decided to make an appearance, and we walked the steps between the booths of artisans under its warm glow.

It was Mother’s Day, so we went down as a family but my wife shooed us off occasionally so she could inspect every object from every artist at every booth while my son and I hopped down the steps and leaned over the ledge to watch the ducks and the fish in the brown, murky water.

epilepsy dad philadelphia steps

Every so often, my son and I would wander back up to where we saw my wife last and play a game to see who could spot her first. We would join her and look at a few of the booths before again wandering off to look for toys or games or artistic curiosities.

On one of our excursions, we came to a section of steps that was near the empty stage that had music being piped through the speakers. My son asked me to take pictures of him jumping off a pillar near the steps because he’s six and he is a boy and that is what boys do.

epilepsy dad philadelphia steps

As he finished inspecting the proof of his daring feat, a new song pumped through the speakers. Without hesitation, my son started to dance.

When I say dance, I don’t mean that he danced in place. Rather, a year of hip hop classes all culminated in a Jamiroquai-esque virtual insanity explosion of choreographed maneuvers from the top of the steps all the way down to the bottom where he ended his performance with a set of finger snaps and a bow.


I was never that brave.

I would have been (still am) too embarrassed to dance in public. Even though my ten-year plan includes a TED talk, I’m terrified of being in front of people or being the center of attention.

Clearly, my brave, brave son doesn’t have that affliction.

Sure, he has his moments. He gets nervous or self-conscious when he drinks his oil in front of his classmates. He sometimes won’t do something brand new in front of other people, although, usually he says he won’t but winds up trying it anyway.

As a parent, there are a lot of things I want differently for my son than I had growing up. I never really felt secure or safe. I didn’t feel like anyone really had my back, or that it was okay to try something and fail. I always felt different, and that being different was a very bad thing.

I desperately wanted my son to grow up free from the fear that gripped me as a child and that rears its ugly head so many years later.  I think it’s even more important that he feel safe, and secure, and supported, and special because he will be made to feel different because he has epilepsy. Feeling different is okay; feeling “less than” or bad or wrong is not.

Most days, I wonder if I’m doing it right. I wonder if I tell him to “stop” too much, or if he sees my discomfort when eyes turn our way because he is being silly, or inappropriate, or simply because he is being six. But I am encouraged when he feels the need to dance and does it as if no one is watching (or maybe because everyone is watching). When he does, I feel like maybe, just maybe, he’s on the right path.

“We should consider every day lost on which we have not danced at least once.” ~ Friedrich Nietzsche

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.