Playing Teeball Again For The First Time

Last year, we signed our son up for teeball. He was only out of the hospital for a few months and was still having seizures and suffering from severe ataxia and behavioral issues from the seizures and medicine, but we wanted to give him a bit of “normal”.

There were times when he would be in the field, in the “ready position”, wobbly and shaking from the ataxia, and he would have a seizure…the audible cue, his body glove slumping down and his body sagging. These seizures were short, he would spring right back up, back in position and waiting for the ball. If we tried to get him to leave, he would say no so we would monitor him and he was usually able to finish the game.

When the game was over, though, he would be so exhausted, and the exhaustion was sometimes followed by episodes of his extreme, angry behavior. We’d put him in the stroller to take him home, and he would be saying mean, hurtful things, or spitting, or hitting. We’d get him in to the house and hold him until the storm passed and he was able to calm down and take a nap.

There were good moments, too. Towards the end of the season, the coaches used a pitching machine instead the tee. Most of the kids would go up and strike out since it was obviously their first time trying to hit a moving target. But I’ve been pitching to my son for years…the tee we had was too big so we just pitched it to him and he would hit it. So he would step up to the plate, ataxic and off-balance, like a drunk stumbling down the street. He would go through the motions to get his feet set, his hands around the bat that he would lift up to his shoulder, and sway back and forth waiting for the pitch to come. When it did, his soft, fluid motion would bring the bat in perfect contact with the ball and he would crush it, and the look on his face made every other thought disappear.

It was a balancing act…trying to give him an opportunity to do something fun with other kids but managing his seizures and minimizing the behavioral issues. There was no right answer. I felt like I was a terrible parent for putting him in the situation, and I felt equally terrible on those days where we’d skip the games and he would sit inside, isolated, lonely, and just as angry and having just as many seizures.

We’ve come a long way in the last year. My son is again playing teeball. His ataxia is better but still visible, but his behavior is much more under control. He’s cheering on the other batters and saying “Batter up!” and “Good job!” as the other team crossed the plate. There have not been any on-field seizures and, after our last game, he played at the park with his friends because we didn’t need to rush home because of seizures or to brace for the oncoming fatigue-induced anger.

teeball epilepsy ataxia

My son doesn’t remember much about his first year of teeball, one of many holes that was caused by the seizures and the medicine. There are times when I wish I could forget last year, as well. But even though he doesn’t remember, I saw moments of joy and a sense of accomplishment as he hit the ball or ran to a base, and those are the memories that I choose to think of when I look back. If any memories from that time do come back to him, I hope that is what he remembers, too.

But if he never remembers last year, and if he only remembers his experiences this year, I’m grateful that we have this opportunity for him to play teeball again…for the first time.

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.

reminders of epilepsy seizure

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.

reminders of epilepsy seizure

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.

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.