To Be A Kid

We’ve seen many ups and downs over the last few weeks. An increase of dosage for one of my son’s new medications brought back unwelcome side effects. His seizures are only slightly more under control than they were before, but he’s exhausted and has a hard time sleeping through the night. His mood and behavior have been bouncing around from stable and happy to angry and defiant.

When it’s at it’s worst, little incidents explode into big ones. The escalation is so fast that it’s jarring and catches us off-guard. It’s so fast and the situation is so frustrating that we don’t always respond in the best way. Then we find ourselves in the middle of the tornado. He’ll say mean things. He tells us he wants us to throw everything away and that he deserves it. I can sense the shame and guilt swell inside and overwhelm him. We hold him and tell him that we love him and wait for the storm to pass. When it does, there are usually tears and remorse and regret. As a father, these moments rip me apart.

These side effects are cruel, especially for someone his age. Between the side effects, the diet, the appointments, and the seizures, he has little time to be a kid. There aren’t many chances for him to be free, to make a mess, and to not have the complications of his life burden him. There aren’t many chances for us to let our guard down, either. We’re always on the edge worrying about him, trying to keep him safe and regulate these side effects. We’re as confined as he is.

But, sometimes, we find opportunities where we can all have fun and enjoy the moment. My son loves dressing up as Captain America, so my wife planned a Super Hero Scavenger Hunt for his birthday. He and his friends had to chase down the evil villain the Snake Robber, the role that I was taking on. The idea of running through the streets with a mask and stuffed snake around my neck made me anxious. I’m a shy, quiet, reserved individual that follows rules and avoids chaos. But I went into it with an open mind and the singular thought that it would make my son (and wife) happy.

I made my way to the location where the superhero party would encounter me for the first time. I waited nervously on a bench in the park while curious onlookers moved further away. Across the park, I saw one of the kids spot me and point in my direction. Then, they charged. Within a minute, they had covered me with Silly String and laughter. My son had a huge smile on his face as he and his friends chased me around the park. Then I used my freeze ray to, well, freeze them and escape to the next location.

epilepsy dad kid childhood seizure

I had a huge smile of my own on my face as I ran to set up the next battle. This time, the kids trapped me until I told them that I hid a dozen of their teddy bear friends in the park. While they looked for them, I escaped again. Eventually, they caught up with me and saw me entering my lair to assemble a machine to steal their powers.

In the final battle, the superheroes found me near the pool assembling my machine. I froze all the heroes again except for Captain America who used his shield to deflect the ray. He advanced on me while his friends watched and defeated me by pushing me into the pool.

epilepsy dad kid childhood seizure

As I laid in the pool, I looked up to see my son with the biggest smile on his face and his arms raised in victory. Behind us, I could hear his friends screaming and cheering him for him. Captain America had saved the day. At that moment, there were no side effects. No appointments. No seizures. There was just my son being happy. And being a kid.

epilepsy dad kid childhood seizure

Superman And Me

When I push through the huge revolving doors at my office, I undergo a transformation. Superman had his telephone booth where he changed from a reporter to the Man of Steel. I have a spinning wall of metal and glass where I morph from the father of a kid with epilepsy in to the Man of PowerPoint.

epilepsy parenting family work superman

Once I step to the other side, I hide my true identity. No matter how little sleep I got the night before or many seizures my son had that morning, I smile at the guards as I pass through security. I say ‘Good morning‘ to my fellow passengers in the elevator and the people I pass in the hall. Inside the walls of my own Daily Planet, I separate my two lives and only show the person that my colleagues expect to see.

The thing about leading two lives is that they are impossible to separate. Clark Kent doesn’t stop being Superman when he wears his glasses. Both identities share the same thoughts and emotions and super powers. He thinks about saving Metropolis while sitting at his desk. He listens for the call of someone who needs him while he grabs coffee in the breakroom. He can’t be one or the other when he is both, regardless of which mask he wears.

For an ordinary person, it’s exhausting maintaining this separation every day. On bad seizure days, I struggle to keep my focus on my work. My thoughts often find their way back to my son, wondering if the seizures have stopped or how he is doing in school. I check my phone constantly to see if I missed a call or a text from my wife letting me know that I am needed somewhere else. Superman only had a city to protect. My son is my world.

With every interaction, it takes energy to adjust my mask and ensure that it hides the turmoil inside. After a night without sleep, it’s especially difficult but there is no other option. I have to be able to focus on my work. My job is what pays the bills and provides us with health insurance. The weight of responsibility and the need to perform often feels like it would be too much even for Superman. And yet, somehow, this is my every day.

I don’t always succeed. There are days where it is all too much. Try as I might to hide it, pieces of my reality are visible to the outside world.

Their planet crumbled but Superman, he forced himself
To carry on, forget Krypton, and keep going
~Crash Test Dummies “Superman’s Song”

On those days, I do my best to carry on and keep going, too. I will myself to get to the end of the day so that I can go back through those revolving doors. When I step out onto the concrete, I start to undo my disguise. With every step that takes me closer to home, I shed the layers of my corporate costume. No longer needing to exert the energy to maintain my facade, I drop my mask to the ground.

As I take those last few steps up to our front door, I open myself up and let the joy and fear and hope and love wash over me. Turning the doorknob, I can already hear laughter from the other side of the door. Pushing the door open, I’m rewarded for my impossible effort during the day with “Daddy!” and I let out a cleansing exhale that I’ve held in all day.

This must be how Superman feels when he takes off his glasses at the end of the day. Finally, I can be who I am supposed to be.