Tag: exhaustion

Paying The Toll

We were coming off a good weekend. We celebrated my wife’s birthday on Saturday, and we ended Memorial Day visiting friends, having a swim lesson, and staying up a little later to see part of the first game of the hockey finals. We put my son to bed tired but happy.

Just after midnight, the first seizure came. I heard the sound come from my son’s room a second or two before the sound came through the speaker of his monitor. By the time I got to him, it had passed. He was sitting up in his bed disoriented, so I helped him lay back down and waited for him to fall back to sleep.

The next seizure came a few hours later. The next one an hour after that. And the next one an hour after that. It was like aftershocks after an earthquake, except each of them was just as intense as the one before it. He had at least four that I saw, but we learned during the overnight EEGs that we don’t see them all.

When he does anything that exerts an effort mentally or physically, a nap-time seizure or a collection of seizures during the night is likely to follow. We bowled for an hour and he had a seizure during his nap. After a morning baseball game, a seizure. Even though he only goes to school for a few hours, he’ll often have a seizure during his nap.

We tried to explain it to his school. It’s not just about what he can handle in the moment. The exertion carries beyond the activity itself. It show’s up as more seizures, which set him up to be more tired the next day. That lowers his seizure threshold for the next day, too, making him more likely to have seizures or requiring him to spend more energy regulating his emotions or attention. It’s downward spiral that ends with the husk of a boy too tired to function.

It feels like the universe collects a toll from my son based on how much he gets to actually live his life. It imposes a penalty to knock him back down and remind him of his limitations when he tries to exceed them. Someone with uncontrolled seizures shouldn’t play baseball. Seizures. Someone with uncontrolled seizures shouldn’t be progressing in school. Seizures. Someone with uncontrolled seizures shouldn’t be going to the skate park, or an amusement park, or a hockey game. Seizures.

Every time it happens, I question whether we did too much. But I gave up wondering if we should be doing anything at all, because that’s having no life. That’s letting epilepsy win. That’s not giving my son the life and the world that he deserves. So we’re careful and we’re calculated in deciding what to do and how much to do. We do our best to protect our son but let him be part of the world. We introduce as much downtime as possible so that we can distrupt his pattern of exhaustion and let him do the things he loves.

The universe seems committed to collecting its toll, but we’re doing everything we can to minimize how much my son has to pay. Because we’re going to keep on living.

One Thing

Lately, my wife and I have started a new routine. We sit next to each other on the couch, flip open our computers, pull up our calendars, and look at the week ahead. Even though it’s all digital and we share our calendars, it gives us a chance to get on the same page. We can add any events that we miss or decide who is picking up dessert for dinner at a friend’s house later in the week. But it also gives us a chance to create a manageable week for our son.

Fatigue plays a big part in the frequency and severity of my son’s seizures. If he gets too mentally or physically taxed, they break free from their confinement. Instead of happening only in the morning, he’ll have them during his nap or after he goes to bed at night. The more seizures he has, the less rested he is, which causes more seizures. It’s a cycle that we work very hard to avoid.

In most cases, that means we only plan one activity a day. While other kids his age go between team practices, play dates, and birthday parties, he’ll do one thing. Instead of “and”, our lives involve a lot of “or”. A birthday party or a movie. The museum or the park. A play date or a baseball game.

Some days, that one thing is school. Other days, that one thing is therapy. Those activities are so draining to him that, if he goes in already tired, he can barely function. We see that, too, when he leaves school early to go to one of his appointments. But on those days, we don’t have a choice. He wills himself through it but then he stays exhausted through the next day. If that happens, we adjust his schedule to try to prevent those demanding days from adding up. If we can’t, or if we miss the signals that he’s running on fumes, we lie next to him in bed, watching him pay the price.

We had a few of those nights in early summer. School was ending and we tried to juggle therapy and baseball practice. He loved baseball, but it broke my heart to see what the physical exhaustion did to him at the end of the night. It was all too much, but deciding what to cut and when was impossible. School is important and provides social opportunities. Therapy helps rebuild those skills that he lost and reinforce those that he will need. And baseball…baseball made him feel like he was part of a team. And that he was a normal kid.

I wanted to take this post in a positive direction. I wanted to say that “in lives packed with activities and distractions, having to choose what to do helps clarify what is important.” I do believe that, but I also hate having to decide what to take out of my child’s life. I hate having to limit him in any way. To have to pick one thing. For every day. Every week. Every month. With no end in sight. There is no positivity in that.

But as conflicted as I am, it has inspired me to try to make that one thing amazing and special. And I try to be mindful, present, and grateful for that one thing. Because I know that, no matter how much it hurts, one thing is better than nothing.

The Long Walk Home

It was one of those nights when we had to decide between bringing him to his teeball practice or letting him skip it and rest. During the previous week, we had just gotten him back up to a functional dose of his medicine that once again helped stop his daytime seizures. But, after almost of week without them, the nighttime seizures returned. That day, he was spacey, and just “off”, which brought us to having to make this choice. Should we let him go play and do something that he hasn’t stopped talking about the entire week and risk him getting exhausted and more likely to have a seizure? Or should we keep him home, let him rest, and miss out on yet another activity?

Some nights, the decision is easier. If he had a day of seizures, or if his behavior was off, or if he had those big, puffy, purple circles under his eyes, he would stay home. Or, if he had a great day, and a great nap, it would be an easy choice to head to the field.

But on the in between nights, it’s hard to know what to do or what the repercussions might be. It’s like picking the mystery box in a game show. He could pep up and participate or he could lose complete focus and throw baseballs over the fence or somersault across the field.  We decided to open the mystery box and take our chances.

With being tired and being surrounded by a gaggle of excited peers, there were a few moments where we had to remind him to stay focused, but overall he did great. Until, that is, towards the end of practice where he had a great hit but was tagged out. He insisted that he was safe, but he was not (by a mile), and what should have been a short discussion turned in to a battle and a long walk home.

He cried the entire way. There was no reasoning, and no real comforting. He was tired, and done, and he just wanted to cry. So we let him. My wife pushed the stroller and I carried the teeball bag on my back. We would occasionally tell him that we loved him, and that we were sorry he was so sad, but we mostly let him cry, his head tucked in his hands or his baseball hat, as the tears rolled down his face.

When we got home, sniffling, he pulled himself out of the stroller, walked up the steps in to the house, and fell on the couch, crying as I helped him take off his shoes and jersey. I again reassured him, rubbing his head and kissing his forehead. As I started to stand, he calmed down and asked me to sit next to him, which I did.

We are not strangers to these long walks home. Last year, they were angrier, with hitting, and spitting, and mean, angry words coming from a crying five-year old. There were days where he would stick his feet in the wheels and laugh, or jump out of the stroller and try to run away. There were attempted trips to the museum or the park that would end before they began with us turning around after only a block or two from our home. It’s hard when the threat of a thunderstorm looms over every outing and every activity. But better the risk of a long walk home after doing something than never leaving the house.