Endurance

My son just turned 8 years old. It’s been amazing to watch the changes in him over the last few years. He’s reading more on his own. He put together a 500-piece Lego set by himself. He’s doing more things by himself that he used to need our help with. This stage of life and of development has continued to surprise me.

Many things have not changed, though, too. He’s still having seizures in the morning. He’s still juggling medications and side effects. He’s still on the strict ketogenic diet, which means he still can’t eat what he wants. He still gets constipated. He still feels different. He is still having a hard time making it through the week and sometimes through a school day.

We’ve been on this part of our journey for more than three years. More than two years on the diet. More than ten medications. Hundreds of doctors appointments, tests, and therapy sessions. We’ve seen countless seizures, and they keep coming with no end in sight.

Earlier this year, I read Endurance about Ernest Shackleton’s journey to Antartica. It’s an incredible tale of a failed overland expedition to the content. The title of the book was taken as much from what the explorers went through as it was from the name of their ship. They survived the loss of the Endurance, treacherous conditions, and a lack of food in an unforgiving part of the world. Along the way, groups were left behind to establish camps while others continued the search for help. Imagine the feeling of watching your best chance of survival disappearing in the distance, hoping they will return.

I called to the other men that the sky was clearing, and then a moment later I realized that what I had seen was not a rift in the clouds but the white crest of an enormous wave. ~Ernest Shackleton

Some days I feel like Shackleton, pushing through, fighting for my son, stopping at nothing until I can save him. We’re trying to function, to get up every day, to go to work, to try to live a normal existence. Because we have to. Because there is no alternative, even under the siege of enormous waves. Because, like Shackleton believed, there is too much at stake.

Other days, I feel like the men he left behind. Stranded on an island, waiting, and hoping that someday we will be rescued. Every day, they woke up, walked down to the shoreline, looking for a ship. For months, that ship never came. Like them, we’re afraid. Every day, we wake up and look to see if we will be rescued. Instead, we watch our son lose control of his body. Every day, we see how hard he fights. Every day, for three years, with no end in sight.

Most days, I fluctuate, rising and falling like the cold waves crashing on to the frozen shore. I am not brave enough or strong enough to face every day like Shackleton. It tears me up to see what is happening to my son. To see him struggle every day in so many ways. It strips away my courage and leaves me wanting to be rescued. But the unbounded love I have for my son and my family forces me to soldier on, to fight for everything we get, and to not let epilepsy take more than it has.

Eventually, Shackleton’s journey came to an end. After more than a year of impossible challenges, Shackleton and his team found help. They went back and rescued the rest of their men. One day, those men that were left stranded make their way to the shore and looked out on to the horizon to see their captain returning for them. To see their lives returning to them.

I can only imagine the glory of that feeling. We are standing rocks, piled together on the shore looking in the expanse before us. I long for the day when I will look out on to the horizon and see a different life than the one we have been leading. A life where my son doesn’t have seizures. A life where he doesn’t struggle to do what so many others take for granted. A life where he can be free.

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

The World Outside

I’m lying in bed next to my son who I haven’t seen all week. With my right hand on my laptop, I reach my left hand over and rest it on his back, making sure he is still there. I can feel his breathing, my hand rising and falling with each of his breaths.

On the other side of him is my wife, who I was also missing. The last few weeks have been a whirlwind. A new job. A new house. A new school year for my son. A new medication for his seizures. A new outlook. A new focus.

With so many changes going on, I’d been so consumed with my life that I hadn’t looked up to see the world outside. When I finally did, I wished I hadn’t. The world kept turning. Things kept happening. Hurricanes, mass shootings, fear, and hatred. Human beings being cruel to each other and using their power to silence their victims. It seemed that the world had been uglier than usual in the time that I’ve been away. I felt both selfish and grateful to be away from it. To not experience it. To not get involved. To focus on my life and to shut out the world.

But that couldn’t last. The world seeped in, overflowing an already stressed situation. The combined strain tested the strength of that connection to my anchor. Our stressful lives during a chaotic time in an especially cruel world. Survival became about pursuing the path of least resistance. It was easier to hide from the world than it was to be a part of it. It was easier to not write than it was to write. It was easier to use the excuse of being too busy in life to avoid being a real part of it.

I pushed myself away from the world but I had nowhere to go. My family is my anchor, and I was thousands of miles away in every meaning of that phrase. A cross-country trip that followed added physical distance to the emotional. But on the plane ride back, I could feel the weight of the last few weeks lifting. The world in conflict sped below me as I looked out the window from a familiar, distant perspective. But it wasn’t the world I was eager to get back to. It was my family that was pulling me back, and I couldn’t get to them fast enough.

And so here I am, restlessly lying in bed next to my family in our new home. My obligations to our new life and the workday ahead steal my focus. But my son’s breath serves as a metronome that brings my attention back to this room. The cadence of his breathing and the rising and falling of my hand on his chest connect me to him. I find my wife’s hand in the same place, so we’re all connected together once again. The world outside and my insecurity conspire to keep the attention of my head and my heart. In this moment, though, I know that it will be my family that gets me through.