epilepsy dad

Category: lifestyle

  • Inconsiderate Epilepsy

    Inconsiderate Epilepsy

    It was a few days before a big meeting that I was organizing at work. I was pulling together the leadership teams involved with a project that I am working on to talk about our progress. It was a big deal and I wore my anxiety like a jacket. Even if I wasn’t preparing for the meeting, I was thinking about it. I was stressing about it.

    The meeting was on Tuesday. On the Sunday before, we were having a good day. We saw a movie. My son went to the park with a friend and I worked on my slides for the meeting. That night, though, my son started to act strangely. He was skirting boundaries. He played with an outdoor ball in the house. He started to play a little too dangerously with his foam baseball bat. I asked if he was okay and which way his brain was going and he said he was fine and that his brain was going forward, but I sensed something was off.

    When it was bedtime, my wife started to get him ready and I fired up the laptop to work on my presentation. But when she asked him to clean up his toys, he started to throw a fit. It escalated quickly and before I knew it, I was sitting on the ground holding him. We tried to work on his breathing exercises and his coping skills but he was past the point of listening.

    He was trying to hit us, spit on us, and calling us by our first names and saying mean things. For more than thirty minutes, I sat on the floor, holding my son, trying to comfort him. A few months ago, these episodes were happening all the time. Now, they are rare. But whether they are constant or rare, the impact of seeing your son struggle with his emotional regulation and become someone else is painful. After he finally came out of it and we put him to bed, I tried to work on my presentation, but I couldn’t. I was so shaken up.

    The next day, I went to work thinking about the night before and also stressing about the meeting that was now only a day away. It’s not easy to go in the next day and tune out the night before. It’s the same when he has more seizures during the night than he normally does. I show up to work stressed and tired but try to focus on my work. I just hope it doesn’t happen on a day where I have to be “on.”

    Epilepsy doesn’t care what else you have going on. Epilepsy didn’t care about my big meeting. It doesn’t care that we’re on vacation. It doesn’t care that we have plans.

    My son had seizures on the baseball field. Seizures in Hawaii. At Disney world. A seizure in the pool. At school. But it’s not just seizures, it’s the overmedicated, the behavioral issues, the fatigue. Epilepsy and its entourage can show up anywhere, anytime.

    When it does, you can’t send it away. Everything else gets pushed down the priority list. You have to deal with it right now.

    And then, after you are done dealing with it, you figure out how to transition out of crisis mode. You go to work or you go to school and figure out how to go back to normal.

    “Normal”, as if it’s a different place. But it isn’t. This is our normal.

  • Happy Anniversary, Epilepsy

    Happy Anniversary, Epilepsy

    Four years ago this week, my son had his first seizure.

    Four years.

    Almost half his life.

    He doesn’t remember the time before. Most days, neither do I. Our memories are of our new life that started the night his body contorted and stiffened on the floor of the arcade. It was the night that time stopped as we prayed that our son would come back to us and when I held his frozen body in a thunderstorm waiting for the ambulance to arrive.

    Even though his second seizure wouldn’t be for nearly two months, the fear and uncertainty that the first one had caused lingered. It turned out that time was the quiet before the storm…that feeling you get when the clouds darken and the air changes and you know the storm is close. The air filled with the same electricity that would soon wreak havoc on my son’s developing brain.

    And then it happened. The second seizure burst free just as my son sat in his seat onboard an airplane. Another thirty minutes and the plane would have been in the air but, thankfully, the crew got him safely off the plane and on his way to the children’s hospital. Within a few months, his seizures would be out of control and we’d be back in the same hospital learning firsthand what status epilepticus was.

    It would take nearly two years before my son was stable. But even then, we were still adjusting medication, dealing with side effects and behavioral issues, and occasionally using his rescue medication. He was stable, but not living the life we had planned. But by then we were beginning to realize that we needed a new plan.

    Four years in, we’re still adjusting that plan. There hasn’t been a day that has not been affected by epilepsy. He’s had countless seizures. He’s been on and off medications and suffered endless side effects. He’s had a barrage of blood draws, EEGs, and other testing and had a myriad of therapies trying to restore what epilepsy had taken away. He’s been isolated from his peers and falling more behind in a world that doesn’t wait for people who can’t keep up, or are different, or need help.

    After four years, I thought we’d be further along. I hoped he would outgrow his seizures or we’d at least have them under control. I thought we would have figured it all out. I thought we’d be able to get back to normal. But, instead, we had to change our definition of “normal” and learn how to live life with different expectations.

    In these four years, I’ve learned a lot of other things, too. I think I am a better man, husband, and father than I was before this started. And we’ve had so many wonderful experiences and met some amazing people on our journey. But I can’t bring myself to be grateful. I can’t allow myself to acknowledge the things that are good because I don’t want to reward the monster that continues to attack my son. Our life is what it is in spite of epilepsy, not because of it.

    Four years is a long time. But I know we have many years to go. We didn’t ask for this, and we don’t want it. But it looks like we’re going to be together for a while.

    So, Happy Anniversary, Epilepsy.

    I didn’t get you anything.

    Because I hate you.

  • Out Of The Storm

    Out Of The Storm

    “And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” ~Haruki Murakami

    We never saw the storm coming. Before we knew what was happening, we were surrounded by it. The pounding rain and furious wind disoriented us and knocked us from the path that we were on. And the lightning. The lightning shot through my son’s brain and contorted his tiny body. With relentless force, it changed our lives forever.

    When the storm first hit, it scattered us. It pulled us away from each other and left us feeling lost and alone. I was angry at the storm. Angry for trying to take my son. Angry for trying to take my family. Angry for making me feel helpless. I shouted at it. I kept shouting, but it didn’t relent. Even after I lost my voice, I kept shouting until I realized that shouting wasn’t going to help me find my family. So I stopped shouting and began my search.

    It took awhile for me to catch my bearings. The storm forced me to shed some of the baggage I was carrying to make progress and move forward. My wife was on a similar path, and she had started moving forward, too. Eventually, we found each other through the endless rain. We found our son, too. His frail body was exposed to the storm more than ours and we weren’t sure if he would recover. So we took turns covering him until he was finally able to move. Tired, battered, but together, we set off as a family to find our way through the storm.

    It was years before we could see even a few feet ahead of us. Years where our hands would slip for each other’s grasp but we managed to reach for each other before we slipped too far apart. Some days we would take turns carrying our son or carrying each other. We kept moving, but it felt like we were going in circles. The storm would seem to let up only to return in force with another step. We’d tread over the same ground, seeing the footsteps we’d left pooled up with water.

    After years of wandering, we stopped walking. If we weren’t going to make it out of the storm, we knew we needed shelter. At first, it wasn’t much. The wind would easily push over our weak walls, forcing us to rebuild. But we learned and built stronger walls. When the weight of the rain was too much and collapsed the roof, we rebuilt it, too, stronger than it was before. We found other people who were in the same storm, and we helped each other. And there were people living outside the storm who would send in their support, too.

    Today, we find ourselves both out of the storm but still in it. We can see it through the window, threatening to take down our shelter if we let our guard down. So we continue to reinforce the walls we used to build it. We’re doing it as a family, closer than ever before because of the journey we are on together. None of us are the same people that we were when we walked in. We are changed. Tighter. Stronger.

    The storm isn’t over and it won’t give up. And neither will we.

  • Awareness Never Ends

    Awareness Never Ends

    This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!

    We sat at a large, round table in the special education classroom with half of us seated uncomfortably in child-sized plastic chairs. My wife, our advocate, and I sat on one end of the table. The district’s lawyer, psychologist and special education coordinator, the school’s principal and special education teacher, my son’s second-grade teacher, and his aide filled the remaining seats.

    We were reviewing my son’s IEP that had just been approved. After two years of providing our own DIY education for our son under a makeshift 504 plan, we hired a lawyer to finally get my son a formalized education plan and the protection that it affords him. It was clear as we reviewed the supporting documentation that we needed that protection because the system is not set up for children like him. It was even more clear as we reviewed his test results that they didn’t really know my son.

    They made comments about his learning without fully grasping how hard he works when he is outside their walls. They made judgments based on a few hours of testing and observation but they didn’t really understand him or what he was going through.

    When the special education teacher said that she had other kids with epilepsy, I cringed. “I had another kid with epilepsy” is like saying I’ve seen one shade of blue. The spectrum of what epilepsy is to a person is as broad as the hues and tones that make up every color imaginable.

    This wasn’t the first time that someone at my son’s school generalized epilepsy. The one-size-fits-all seizure plan hanging in the nurse’s office is another symptom of the lack of understanding around his condition. Sometimes, having a little knowledge and convincing yourself that you know everything about something is worse than having no knowledge at all. So we did what we always do and explained how epilepsy is different for everyone and how it affects our son specifically.

    We know that won’t be the last time we need to provide that explanation because awareness never ends.

    There will always be a new school year.

    A new teacher.

    A new aide.

    A new babysitter.

    A new parent.

    A new doctor.

    A new nurse.

    A new coach.

    A new team.

    A new boss.

    A new colleague.

    A new friend.

    Every time a new person comes into our lives, it is an opportunity to help them understand my son. It’s an opportunity to help them understand epilepsy from the perspective of a child and a family living it every day.

    It is not always easy. It’s not easy to retell the story of how epilepsy tried to take our son. It’s not easy to describe how hard he has to work every day or to explain how epilepsy is more than just seizures. But every time we do it, we create understanding. It makes the world around my son a bit more accepting of him and his condition. And, I hope, it creates a bit more understanding in the world for other children like him.

    NEXT UP: Be sure to check out the next post by Clair at http://www.epilepsybumps.com/.

    TWITTER CHAT: Save the date for the  #LivingWellChat on June 30 at 7PM ET.

  • Paying The Toll

    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.