epilepsy Archives - Page 73 of 84

The Lesson I Can’t Teach

When my wife told me that I was going to be a dad, I think I did what most guys do when they are given the same news…I freaked out. Once I had sufficiently calmed myself down, however, I did the next thing that many guys do…I thought about all the wisdom that I had to pass on and the lessons that I would be able to teach my child.

How to throw a ball.
How to tell a joke.
How to shoot a puck.
How to ride a bike.
How to program a computer.
How to cook a meal.
How to change a light switch.
How to drive a manual transmission car.

The first five years, I was checking things off my list all the time. My son had a wicked slapshot, he could throw a ball, and he could expertly tell three knock-knock jokes.

Knock-knock.
Who’s there?
Banana.
Banana who?
Knock-knock.
Who’s there?
Banana.
Banana who?
Knock-knock.
Who’s there?
Orange.
Orange who?
Orange you glad I didn’t say banana?

(It’s still funny.)

Of course, that was before he had his first seizure. After that, his epilepsy got complicated. We spent weeks at a time in the hospital trying to get a handle on his seizures and, suddenly, my list didn’t matter. What mattered was something that I was woefully incapable of teaching him, and that was what it meant to live with epilepsy.

It was a punch to the gut. When I dreamed of being a father, it always involved my son coming to me with a question and me, for some reason around a campfire (we haven’t camped since long before he was born), wisely answering his question with a profound philosophical response, expounding on complex theories and providing fatherly guidance. But here he was, on only his fifth trip around the sun, and I had already run in to an answer that I could not give and a lesson that I could not teach.

I’m never going to be able to teach my son how to live with epilepsy. But I can teach him to never give up. I can teach him, even when life gets hard, to believe in himself and to stand up for himself. I can teach him that he can rely on his mother and me, and that he is never alone. And I can teach him that his life and what he can accomplish is still wide open.

In the end, these are the lessons that are most important, anyway.

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.