Neverland

Early in the morning, my son had a seizure. As his body tensed and contorted, his lungs expelled air through his vocal chords. The sound it made traveled between the open door of our rooms and woke me up.

I pulled off my covers and made my way into his room. He had sat up, but he was already making his way back on to his pillow. Standing at the head of his bed, I reached my hand through the slats and stroked the top of his head. I whispered to him that he was going to be okay and that he should go back to sleep. He eventually did, so I returned to bed.

I checked the clock. There might have been enough time for me to fall back to sleep, but it was also close to the time that I needed to wake up. While I pondered what to do, I stared at the screen of our monitor. My son was asleep, with a blanket draped over him and his two fingers that he still sucks in his mouth.

My restless, exhausted brain started to drift. Someday, I thought, he’s going to grow up. Instead of the sound of a child, I will hear the deeper sound of a young man echoing through the hall. I shuddered at the eventuality and gave up on the idea of going back to sleep.

I started to think about what else was going to change but stopped myself. I see the boy on the monitor and can’t think of him being anything else. If I knew where Neverland was, I would take him there so that he would never have to grow up.

In Neverland, he could stay the boy who sleeps in our bed when he is sad or afraid. The boy who sits on my lap when he needs to be held. The boy who looks at the world with wonder and compassion. The boy who doesn’t feel the pressure of the adult world. The boy we can shield from how ugly that world can be.

I want to keep him at this age because it’s only going to get harder for him. He’s going to start questioning his value and his worth. His gentle soul and open, hopeful, dreaming nature will be tested, as will his belief in magic and possibility. I don’t want him to ever doubt that he can fly because the moment he does, he will cease to be able to do it.

I know that instead of wishing for him to not grow up, my responsibility is in preparing him for the world. Instead of trying to keep him young forever, my job is to help him grow in a way that encourages the magic inside him. Instead of losing it, it will be what helps him believe that he will always be able to fly. But I thought we would have more time before the real world penetrated our existence. Maybe I thought it would never happen.

When Peter invites Wendy to forget everything and join him to live in Neverland and to never grow up, Wendy answers “Never is an awfully long time.”

I stared at the monitor and thought that “never” was not nearly long enough.

It Can Always Get Worse

We finally got a second opinion. Not because we didn’t think the doctors at our hospital were doing everything they could. But because that’s what responsible parents do.

I wasn’t expecting a miracle. I wasn’t expecting someone to tell us we missed something that would cure my son’s epilepsy. We were looking for another perspective or treatment that we missed. We hoped that someone out there had another case like ours and could provide some insight. We wanted a little more hope. We wanted a little more of something to hold on to.

The hospital sent the report to my wife. That night, she tried to tell me what it said, but I didn’t let it in. I nodded as she spoke the words but I put my guard up and those words bounced off me and fell to the floor. For the rest of the night, I stepped over them as I distracted myself with other things until it was time to go to bed. But I didn’t sleep.

The next day, I started to feel the effects of the night before. Not only the report but how I reacted. How I tried to ignore it to make it less real. How not facing it doesn’t make it go away. And how I left my wife holding that emotional weight by herself.

When I got home from work, I hugged her and apologized for leaving her stranded. I asked her to send me the report, and I read the pages of detailed notes that the doctor had put together. It was a thorough summary of the last three years of our lives. It included confirmation that our doctors are doing the right things and that there wasn’t anything we missed. Then, towards the end, I saw what I didn’t want to see the night before.

What should we expect in the short and long term? Is there any other information you feel would be helpful for us to know?

I do worry that his clinical picture has raised suspicion for a myoclonic epilepsy that may be progressive, in which case, continued difficulty in treatment and learning decline can be seen.

It wasn’t the first time we heard that. We’re three years in without seizure freedom, and it’s feeling like a more elusive goal every day. Our doctors alluded to the possibility but kept us focused on stabilizing what we can now. The near-term goals were a welcome distraction from the long-term possibilities. But I also don’t think about it getting worse because I can’t think of anything worse than what is happening to him now.

That night I laid next to my son as I put him to bed. I told him that I loved him. That I would always be there. That I was sorry that his life was so hard. I was trying to communicate my feelings to him. But he’s eight and doesn’t understand the words we use to express those very big feelings.

Somedays, neither do I.

But I feel the need to get them out and hope that he will someday be able to understand. I worry that there will be a window between now and if things get worse where he is able to grasp the meaning in my words. I don’t want to miss that window. Even if it only cracks a little, I want to get something through. Because if things do get worse, I need to know that he will have something to hold on to.

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.