epilepsy dad feature one thing

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.

Also published on Medium.

4 thoughts on “One Thing”

  1. Our son has epilepsy since about 18mo old and diagnosed at about age 5. His seizures always presented at night then gradually worked into the day time. He has been on seizure meds since age 5. This time last summer he suffered a major set back due to a Dr’s error and ended up in ICU in danger of neurological and respiratory failure. Fast forward a year and he just signed with University of Houston Victoria as a pitcher. Baseball has given him purpose and focus. I know this can’t be possible for all with epilepsy as the severity varies. But for our little guy who has been on the baseball field since he was 5 BASEBALL has been his everything, his safe place where really no one knew what daily battles he fought to be on that field. From migraines to fatigue he just wanted to be with the guys playing ball. BASEBALL is magical for our family and has really made life with epilepsy a little easier. Finding balance is difficult but I hope for your little guy to be able to continue ball or anything he loves.

    1. Thank you so much for sharing, Kimberley. And congrats to your son! I have hopes that my son will continue to play, but we’ll definitely do it as long as we can. Being a part of the team has been magic. ~Dave

Leave a Reply

Your email address will not be published. Required fields are marked *