A Childhood In The Clouds

I wonder how my son is going to remember his childhood. Sometimes, I wonder if he is going to remember it.

My son and I watched a Philadelphia Eagles game and we saw a player that my son had met at the hospital. I asked if he remembered meeting him and he said that he didn’t. We met the player almost two years, so at first, I chalked it up to my son being too young to remember. But he was also in the hospital because he was having more seizures and because we needed to adjust his medication.

Like other medicines, epilepsy medications have a long list of side effects. But medicine that controls seizures targets the source of those seizures, the brain. As a result, the side effects show up in those areas that the brain controls, which is everywhere. We have sees these side effects alter his mood and behavior and impact his motor control. As he gets older, we’re also seeing how much they affect his ability to learn and his memory. Those side effects were likely there all along, hidden beneath the surface. But now that those skills are being tested, the latent effects are being revealed.

We’ve passed the three year mark of my son taking medicine for his seizures. Three years of my son’s brain in a constant fog. Three years of struggling to form solid shapes around thoughts and ideas. Three years of a childhood spent in the clouds.

Three years of exerting all his energy to focus on one task at a time. Three years of that focus sapping all his energy. Three years of wondering if there is enough energy or will left inside of him to enjoy an experience.

The more we explore, the more gaps we find. Milestone events never happened. People erased from existence. It’s impossible to tell whether the failure is storing the memory or recalling it. The result is the same, though. A void where a childhood should be.

My wife and I repeat stories of our adventures to him, and we show him the albums of pictures we’ve taken. I’m hoping by continuing to expose him to those memories that he will have something to remember. I don’t know if it will be because we’re unlocking old memories or creating new ones through our stories. I’m hoping his brain doesn’t know the difference. I’m hoping that when he looks back on this time in his life, he’ll have something to find.

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.

Early Morning

Lying in bed, I opened my eyes in the early morning and stared at the ceiling. My son’s arm was draped across my chest and his head rested on my shoulder. Ahead of our move, he’s been sleeping with us. The chaos of our lives and the distance to his room has become increasingly problematic. Until we move into our new place, it’s a concession we made so that we can all be together and so we can monitor his seizures.

I brought my free hand up and rubbed his head. Usually, my wife is the recipient of his slumbery affections. I get the other end with a face-full of feet as he turns horizontally on the bed. But not that morning. That morning, I looked down to see my the beautiful face of my boy sleeping peacefully. I remember smiling as I made minor adjustments to my position and was once again comfortable. I closed my eyes, my hand still rubbing his head, and enjoyed the moment.

It’s in these early morning hours that I’ll catch my son talking in his sleep. Sometimes the words are decipherable. He has had unconscious conversations about baseball and hockey. Once he talked about his iPad, which I’m pretty sure is a sign that we let him use it too much. Other times, his voice is too low or the words are too jumbled but it’s still clear that he’s having a conversation.

Sometimes, his hands or legs will twitch. It’s like watching a dog dream of running and watching its limbs move in response. We had a cat once that would dream of drinking and we would watch him lap at the air as we laughed quietly so as not to wake him. It’s impossible to tell what activity my son was trying to do in his sleep, but it still made me smile. Dreaming at seven looks very different from dreaming at forty.

That morning, though, a different and unfortunately familiar sequence began. It started with a tensing of his muscles. As he laid at my side, I could feel his body start to stiffen and elongate. I adjusted my position to give his body room the room it needed. The room went quiet. The only sound was me telling him that everything was going to be okay as I kept my hand on his head.

At its apex, his body is rigid and long like a piece of wood. His body continued to squeeze, forcing the air from his lungs. The audible moan also started as his body expelled air past his vocal chords and out his mouth. His body relaxed before tensing up again, the rhythmic jerking of a myoclonic seizure. Every pulse of his body made me feel more and more helpless, but there was nothing to do but wait it out. So in the early morning darkness, that’s what I did.

A few seconds more and the seizure was over, but the postictal state began. Like he usually does, my son sat up, smacking his lips and looking at the world through squinted eyes. I continued to console him and let him know what he was safe until he gathered enough of his faculty to know where he was. Then I helped him lay back down and get comfortable. I draped his warm, green blanket over his shoulders and pulled it down to cover his feet. He put his two fingers that he likes to suck on in his mouth, closed his eyes and drifted back to sleep.

I could not go back to sleep. I struggled to not have my thoughts drift to all the negative possibilities. I should have gotten up to distract myself but I wanted to be near him in case he had another seizure. So, instead, I listened to his breathing and returned my gaze to the ceiling.