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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.

Actually, My Son Is Not “Fine”. But He Is Amazing.

I spoke with an administrator at my son’s school, talking about how the year was going so far, asking about how the replacement for his one-on-one was going, and just generally checking in. The administrator said that my son seemed to be doing “fine”.

“Actually, ” I said, “he’s not fine. He has epilepsy. Some mornings, he has seizures. Then we give him his anti-epileptic medicine and try to help him keep his attention focused long enough to get dressed for school. Luckily on most days now, he can stomach breakfast. The diet that he is on is really hard on him, but hey, it helps with his seizures. Then he walks or, on good days, rides his scooter a few blocks to school. We’re grateful that the short trip doesn’t tire him out as much as it used to when school first started. Then we drop him off in to a class that has 29 kids and hope that his one-on-one (when he had one) cares enough that day to help him focus on his class work and hopefully pay attention long enough to pick up what is being taught that day. He can’t follow more than one direction at a time, and it takes an enormous amount of energy to stay focused for that long. By mid-morning, his brain is already exhausted and his body starts to follow, but he makes it to lunch, where he usually just watches his classmates eat. Recess, though, is his favorite part of the day, where he can play with his classmates with whatever energy he has left, although I think he usually wills himself to fake having energy so that he can just be with other kids. Then he packs up, heads home, has a small snack before his body and mind give up and he has to take a nap, just so he can wake up and make it the rest of the day. That’s not what I call fine.”

The administrator was caught off guard by my rebuttal. “I just meant that academically he seems to be where he should be.”

“He’s doing well academically because after he wakes up from his nap, our nanny reads and works with him to help reinforce what we’re hoping he’s learning in class and missing from the afternoon sessions. By the time I get home from work, he’s usually exhausted mentally again, but we get to play while dinner is in the oven. Well, unless it’s our night to go to behavior therapy. After dinner, we pop him full of pills again, head to bed, and then repeat the process for the foreseeable future.”

I don’t blame the administrator. He only catches glimpses of my son throughout the day. With other disabilities, there might be some external indication that a child is different, but with epilepsy and its related complications, you may not catch the signs unless you have a reference, or spend enough time with a child, or happen to catch a seizure. But while I don’t blame him, I also wanted to dissuade him from thinking that my son was just another kid and, just because he wasn’t seizing at school, that he was “fine”.

“Fine”. “Fine” doesn’t reflect the struggle he has to keep control of his body. “Fine” doesn’t show the foggy side effects of his anti-seizure medicine that clouds his brain, or the complicated, restricted diet that sometimes turns his stomach. “Fine” doesn’t capture how hard he has to work to stay focused or follow direction or put things in sequential order. “Fine” doesn’t get the help he needs at school so that he can try to keep up with the kids that aren’t filled with brain-altering drugs or seizing every day. “Fine” doesn’t convey how difficult it is for my son to make it through the day.

And yet, he does.

No, my son is not “fine.” But he is amazing.

Not Having To (Always) Say You’re Sorry

I grew up thinking that everything had to be perfect. Between the nuns at my Catholic school and my parents at home, I walked a very thin rope of perfection, calculating each step so as not to fall and raise the ire of either side. I wasn’t perfect, of course, and I probably spent just as much time suffering the consequences as I did running from them. Today, the legacy of that rigid black-and-white right-and-wrong upbringing causes me to be extremely hard on myself.

A few weeks ago, we were putting ornaments on the Christmas tree. My son was enthusiastically picking up ornaments from the pile we made for him and rushing to place them on the tree. Inevitably, one of the fragile glass bulbs slipped from his tiny hands as he rushed to stand and it crashed and broke on the floor. “I’m sorry”, he said. I told him that he should be more careful and slow down, and he apologized again.

Lately, I feel like I’m always on my son and that he spends most of his time with me apologizing. It’s a terrible feeling for me, and I can only imagine what it feels like for him. What makes it worse is that there are many times when he can’t control his body. When he’s tired, there is a disconnect between his brain and his body that exacerbates the gap that is already present in an average six-year-old.

I have gotten so used to dealing with him when the side effects of the medicine and seizures took away his ability to reason and control his body and I needed to catch everything before it escalated. Now, I can’t step back and let him explore and make mistakes.

He must feel helpless to avoid my disapproving gaze and constantly feel like he’s disappointing me. “I’m not mad, honey, I’m just disappointed” is classically the worst sentence in the history of parenting, and I feel as if I’m delivering it with every dissatisfied glance.

I’m not suggesting that there shouldn’t be any rules or consequences. Now that we’re back among the general population, I see other kids going without boundaries as their parents ignore them, and that’s the other extreme. It’s my job to teach him right and wrong, acceptable and unacceptable. But my response needs to be in proportion to the behavior, and I’m having a hard time letting go of those feelings I had when things were at their worst.

One of our therapists offered a piece of advice that I am trying to put in to practice. She said that if he’s not doing something unsafe, and if what he is doing is not the end of the world, then take a deep breath and ignore it. Especially when an innocent action now feels like one that he did when his behavior was out of control, it makes sense that my alarms would be firing. But that doesn’t mean that every action needs a response. If he is being unsafe, or if he is breaking a house rule (no hitting, for example), then address it. But if he’s flopping on the ground, or his laughs turn in to a scream, then I should take that breath.

I don’t want my son spending his childhood always having to say he’s sorry. What he is going through is hard enough, and I don’t want to contribute to squelching the bright, special light that is inside his heart by making him feel like he needs to be perfect. It’s my job to help guide him along the way to stay on the right path, but it’s also my responsibility to help him be happy and free.