Like Everyone Else

A few weeks ago, we went to a birthday party for one of my son’s friends. It was a small gathering, done safely. We didn’t know the other family there, but they were very friendly, and the kids all got along.

Near the end of the party, we gathered together and sang “Happy Birthday.” After the birthday boy blew out the candles, the other children eagerly reached for a cupcake. My son, however, was sitting off in the corner. I walked over to him. “Hey pal, you ok?” I asked, knowing what the answer would be.

“I don’t feel included.” The words came from his mouth and punched me in the heart. It had been so long since we attended a birthday party that I forgot to make my son a keto-friendly cupcake.

I sat on the bench next to him and put my arm around him. “I’m sorry, ” I said. “I forgot.”

I told him I would make it up to him and that I would make him a cupcake as soon as we got home. But I knew it wasn’t the same thing. He’d be eating that cupcake at home, all alone, instead of surrounded by his friends, participating in what they were doing, being just like them. Right now, he wasn’t included. He was on the outside.

He’s been on the ketogenic diet for so long, and he started so young that it seems like it has always been this way. I take for granted that he’s always had a different meal than us. But, as he gets older, he’s noticing more how that makes him different. At his new school, the other kids have sandwiches and bags of chips for lunch. He brings keto ice cream and a few chips. They have cookies for dessert. He has cheese or macadamia nuts. When they have special events or cooking, he has to eat the substitute we send in. He never gets the same.

Change is on the horizon, though. After more than seven years on keto, we’re moving to a modified Atkins diet, opening a new world of food for him. The other day, we found a low-carb bread and made sandwiches for lunch. As we sat at the table, I smiled and watched him close his eyes and take a big bite out of the middle of his sandwhich. He chewed for a few seconds, then opened his eyes and looked at me, smiling. “I can have sandwiches for lunch at school, ” he said. “Just like everyone else.”

What Is Left To Say?

When I started this blog almost 5 years ago, we were only just beginning our epilepsy journey.

The first few posts were written from his room on the neurology floor of the children’s hospital as I watched the doctors tried to stop his seizures. I wrote as a way to process my thoughts and feelings as I worried about losing my son and learned about words like status epilepticus and refractory.

After we left the hospital, I wrote about how our life changed. I shared stories of how we tried to rebuild my son after those initial waves of seizures took so much from him. I wrote about his therapies and how the exploration and experimentation with different medication led to the same frustrating results or unbearable side effects. I wrote about my fears about VNS surgery and my frustration with the hardship of the ketogenic diet.

For the past year, very little has changed. In spite of having a VNS implanted, adjusting his medication, and continuing the ketogenic diet, my son is still seizing almost every day. I still worry about the risk of SUDEP. I still worry about the long term effects of these seizures as I watch him slowly fall behind his peers at school.

When I would sit down to write, it started to feel like I was always wanting to write the same things and that I had already put my thoughts and feelings down. I wasn’t sure what was left to say, so I didn’t write anything.

Not writing had the additional benefit of not having to look beyond the surface of our lives. I could stop probing how I felt about the challenges my son faced and what it meant for his future. I could just live in the present and deal only with what was in front of me. But that began to feel like I was shirking my responsibility as a father and doing a disservice to myself and to my son.

During the time I stopped writing, I also received a number of messages from the epilepsy community. They reminded me that that others were going through the same challenges. I started this blog for myself but it brought me into a community of people who had already been where I was as well as people who were just starting on this path. The unexpected benefit of putting ourselves out there was that is reminded us that we weren’t alone. When things were dark and scary and uncertain, that gift provided immeasurable comfort.

I was worried that because nothing has changed that I wouldn’t have anything to write about, but that is part of this journey. The ups, downs, and the long stretches in between filled with uncertainty, frustration, accomplishments, and joy are all part of life. They are the things that remind us why we are here and bring us closer together. They are our outstretched hands reaching in to the darkness that are met by the hands of others grasping for connection.

As the new year began, I have started waking up early again. I make my coffee and sit on the couch in a quiet house staring at a blank page. I think about our life, past, present, and future. I think about the people we’ve met along the way, and I start filling the page with words.

It turns out, I might have more to say after all.

The Night Watch

Every night before he goes to bed, my son takes a handful of pills.

The pills are the last line of defense that my son has against the unrelenting seizures that constantly lurk on the horizon. Especially at night, when his brain slows down to recuperate from the day, my son’s brain isn’t strong enough to defend itself against attack.

His medication is meant to strengthen his defenses so that his brain can rest. They are the guards on the parapet defending the residents inside the walls throughout the night. But the gaps in my son’s wall are too wide for the guards to cover. It’s not a question of whether a seizure will break through; it’s how many. It’s how much damage will the attackers do before the sun rises.

We’ve tried to boost his defenses. New medications. The ketogenic diet. VNS surgery. But none of them have prevented the nightly raids from exacting their toll on his developing brain. Even combined, they are no match for the electrical storm the flows wildly across the neurons and floods the cells.

It could be worse. It has been worse. Before we knew what this was, the flood nearly took my son. The uncontrolled pulses flowed through the gaps in his natural defenses and eventually breached them entirely, leaving his body frozen and his mind disconnected. We managed to beat back the invader and rebuild. We strengthened the walls. We bolstered the night watch. But our seizure calendar records the history of attacks, painting cells with yellow markers revealing every defeat in long ribbons of sequentially colored squares.

Every night before he goes to bed, my son takes a handful of pills because there is nothing else to do. We stick to our routine because it is better than the alternative. His pills, his diet, and his VNS play their part. But as he drifts off to sleep, I turn on the monitor and take my post watching over him, too. Because it’s my job on the night watch to be there when his defenses ultimately fail, to comfort him after the attack, and to help him rebuild the next day before we do it all over again.