Epilepsy Dad

Epilepsy, The Future, And The Battle Between The Heart And The Mind

If you ask my son what he wants to be when he grows up, he always leads with “a hockey player”. Sometimes he’ll add another sport, or perhaps a doctor, but everything starts with and revolves around first being a hockey player.

According to his plan, he is going to play in the NHL and whichever team he plays for, that’s where I will live, and I will follow him around as he jumps between all of his favorite teams. “That’s a great plan,” I tell him.

Inside, my heart and my brain drop the gloves.

My heart wants him to follow his dream. It wants him to watch a hockey game or to play hockey in the basement and know that hockey is what he will do with his life, and to live and reinforce that ambition every day. My heart wants him to hold on to that goal and have it drive him to be a better skater, a solid teammate, a focused student, and to know what it feels like to overcome an enormous challenge to achieve a dream.

My brain remembers what he was like last year when his ataxia and lack of balance made most physical things, including hockey, impossible. It contemplates the odds of playing a physical sport with seizures and epilepsy that is still not fully under control. My brain wants to err on the side of caution and to focus his attention on something more realistic.

Like many hockey fights, there is no winner…the two sides just tussle for a few minutes and then have a seat in the penalty box. Neither side wins in my fight, either. The skirmish only brings on more questions. Should I encourage him to continue to pursue his dream and risk devastation when I have to tell him he can’t join a team because of his epilepsy? Should I have him set more realistic goals now to avoid that heartache? How do you tear away the dream of a six-year-old boy?

I’ve decided that you don’t.

The future is too uncertain to predict the course of his life or the part that epilepsy will play in it. Yes, he might be burdened with seizures for the rest of his life. Maybe they will get worse. But he might also outgrow them. Someone may develop a better medicine, or they may find a cure, or a new device to control or eliminate his seizures.

The only thing that I can do is focus on today. Today, and every day until it is proven otherwise, I’m going to do everything I can to support his aspiration to play hockey. We have a skating coach, and work with pucks off the ice. We talk about teamwork, and strategy, and going on the road with him and the team. We watch hockey games and talk about what it will be like when he is playing as if it is an inevitability because the most assured way of him not reaching that goal is to discourage him from trying.

Always Something There To Remind Me

Epilepsy has infiltrated every aspect of my son’s life, from the time before he wakes up to when his head hits the pillow at the end of the day and beyond. Every new day brings with it reminders of his condition, and every interaction, every task, every breath carries inside of it a burden that he must overcome.

Before my son even leaves his bed, there is an occasional seizure streaming from the camera we installed in his room to the iPad at my bedside. When he comes out of his room, his first stop is in the kitchen so that he can take his first handful of pills of the day. We spend some time together, constantly evaluating his behavior to see if his brain is firing properly, looking for those signs to see if he is going to have a good day or a bad day. Every morning is filled with these little reminders of his condition.

From there, it’s on to breakfast. Usually once a week, we spend a few hours making batches of pancakes so that he can have a keto pancake with a small amount of fruit. The diet has a high-fat requirement that, if we can’t incorporate the fat in to the food itself, needs to come from a straight shot of oil. My son likes the pancakes because they incorporate all the fat and don’t require any extra oil. If there are no pancakes, breakfast, like most of his other meals, involves looking up each component to find the ketogenic exchange rate, cutting and weighing everything to within a tenth of a gram including, unfortunately, oil. Every meal is measured this way, so every meal becomes another reminder of the challenges he faces and the things he must do to manage his epilepsy.

Many other tasks during the day involve helping him stay focused, or breathing to keep his body under control, or sleeping to recover from the exhaustion that is always present on his face…all reminders, every time we look at him, about how present and real and exhausting epilepsy is.

Before he goes to bed, he counts out another handful of medicine before making his way in to his room with just enough energy to brush his teeth, put on his pajamas, and crawl in to bed. The wash of fatigue that swallows him as he is finally able to just switch off his brain serves as the final reminder of how much effort it takes him to make it to through his daily challenges.

As he drifts off to sleep, I know that we have to do it all again the next day.

There is more, though, to our day than just these negative reminders of my son’s epilepsy. There are also the reminders of how lucky we are.

Those pills that he takes, his first and last activities of the day, are keeping his seizures under control. The magic diet, with all the extra effort and measuring and restrictions, also helps his seizures and cognition. That he is able to read, and is learning at all, shows how much he continues to improve.

Every morning that he is able to get up and go to school, and the fact that his body is strong enough to ride his scooter to school, is nothing short of a miracle. That he has friends in school and that the kids are sincere when they say goodbye to him fills my heart with such gratitude, as does him having individual support in school and an essential, loving aid when he gets home. He has regained much of his physical ability, allowing him to ice skate and play hockey in the basement, two of his favorite things. Every time he puts on his skates or scores a goal in his stocking feet downstairs, it’s a reminder that epilepsy has not taken everything from him.

Tucking him in, these reminders and milestones make me grateful that we had another day together, and grateful that we get to do it all again tomorrow.

How Far We Have Come

A year ago, we sat next to our son’s bed in the hospital holding his hand and praying for his seizures to stop. That is when we learned what status epilepticus was, and we watched the monitor above the bed as the EEG machine that my son was hooked up to registered seizure after seizure after seizure. It takes a trained technician to truly understand the meaning of the spikes and waves that show up on the screen, but the Event counter kept climbing, and the increases coincided with what we saw happening to the body and mind of our little boy.

I remember falling asleep next to him, only to be woken by the sound of another seizure. I’d tilt my head back to read the screen upside down and, even though I was only asleep a short time, the counter would have increased more than it should have. My wife or I would then have to get up and push the “we saw a seizure” button and record the seizure on a piece of paper, in the dark using the light of our phone or the EEG screen so that we could fill in another row on the seizure chart with the same short pencils that they hand out to record your score at a golf course. What an odd thought to have while scribbling the duration and characteristics of a seizure, but I was delirious, and scared, and lost, and at that moment, that pencil provided a fleeting, comforting place for my mind to wander.

Thinking back to those nights, as out of control as everything seemed and as much as we felt as if we just kept falling, we had no way of knowing what would lie ahead. As dark as those first nights seemed, we were practically basking in daylight compared to the blackness that was to come.

There would be many more nights connected to the EEG, more charts, more tests, more little pencils, and many, many more seizures. There would be a string of doctors, nurses, and medications, side effects and unbearable behavioral changes. There would be discharges and readmissions, and many questions, but very few answers.

My son was not among the lucky (if there is such a thing) epileptics that could take one medicine and be under control. Instead, he’s in the very unlucky group that still struggles to find the right medicine and the right dose to stop the seizures that torment his brain. While his seizures are not completely under control, they are less frequent. He can walk, and run, and talk, and learn, and laugh, and he even has really, really good days.

We have very few answers but, in spite of that, we’re making progress. Our year adrift in an angry sea has thrown us in every direction imaginable, but we’re hopefully headed towards calmer waters.

How far we’ve come. But it feels like we still have very far to go.