epilepsy dad

Author: Dave

  • 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.

  • Poopsicle, Popsicle, Dreamsicle

    Poopsicle, Popsicle, Dreamsicle

    Since my son was little, we have had a tradition of ending our nights by talking about our days. It started as “poopsicle, popsicle, dreamsicle” but it has evolved over the years to include a few additional reflections:

    Poopsicle – Something bad that happened today

    Popsicle – Something good that happened today

    Dreamsicle – Something you want to happen

    Grateful For – Something you are grateful for

    God Bless – Someone you are thinking about that could use your thoughts or prayers

    Mistake – A mistake you made today (because mistakes are opportunities to learn)

    Proud Of – Something you did today that you are proud of yourself for

    Each night, we would take turns going through the list. But for the past few months, I haven’t been participating. My wife has been reading with our son before bed and the reflections became part of their routine. Instead of joining them, I busied myself by cleaning the kitchen or working on the computer.

    I don’t remember exactly when I stopped. It could have been near the end of my last job when I was so unhappy and stressed and just wanted to get out. It could have been after I started my new job because I was so exhausted trying to prove myself to my new team. It could have been any number of times when life got hard and complicated and fast.

    Ironically, it was probably when I needed to reflect the most that I stopped doing it. I didn’t just stop reflecting with my family, I stopped reflecting at all. I didn’t notice the day, I survived it. I spent all my energy moving things forward without appreciating where I’ve been or what I’ve done. Instead of acknowledging the really hard things and being proud of myself for having done them, I moved on to the next thing on my endless list of things to do.

    This Father’s Day, my wife surprised me with a special Japanese tea ceremony. It was a beautiful ceremony in which a teacher described each step as it was demonstrated by his students. He described the ritual of serving the tea, but also introduced a mindfulness aspect from the perspective of the guest. During the ceremony, the guest would inspect the different things in front of her. She would lift the bowl and examine every side of it. Because this moment may never happen again. She may never see the bowl again. She may never see the host again. So she was appreciating this moment and these objects and being mindful and present in the moment.

    Three minutes into the ceremony, I caught myself wondering how long we had been there and how long we had to go. But after awhile, I settled in on the experience. I settled into the space. I noticed the way the host and assistant walked in and out of the room. I noticed how they folded the silk cloths they used to wipe down the bowl. I noticed the way the guest turned the bowl to examine it. I noticed my son watching the ceremony.

    Drink your tea slowly and reverently, as if it is the axis on which the world earth revolves – slowly, evenly, without rushing toward the future. ~Thich Nhat Hahn

    It was as if the world slowed down enough for me to see what was happening. Instead of moving on to the next thing, I was seeing the things that were in front of me. I wasn’t thinking about my to-do list. I wasn’t thinking about work. I was there. I was present. I hadn’t felt that way in a long time. It felt good. I missed feeling that way.

    I have gotten into the habit of doing instead of experiencing. It’s easy to measure a day by how much gets done because there is no end to the list of things to do. But that keeps my eyes focused on the horizon instead of the ground beneath my feet, or noticing the footprints I left behind me, or being aware of who is at my side.

    My son has a serious medical condition that can change our lives or take away his without warning. We are not guaranteed any moments beyond the one we are in. I want to be better and being present in it with my family. I want to share these moments with the people around me. And I want to reflect on them and acknowledge what they mean to me. Because I want life to be about more than checking things off an endless list of things to do.

    That night, I laid next to my wife and son as we put him to bed. “What’s your poopsicle?”, I asked him. Then, we took turns reflecting on our day.

  • 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.

  • That Parent

    That Parent

    The stories about the overly competitive sports parents are true. I’ve seen them in the stands yelling at their kids, yelling at the coaches, and yelling at the umpires. They’re the parents trying to make their kid the next Micky Mantel, or Jackie Robinson, or Randy Johnson. Or they’re the parents that felt robbed of a chance to be the star and are reliving their glory days through their children.

    I never wanted to be that parent. When my son started playing hockey, it was because he wanted to. When he moved on to baseball, it was because he wanted. He loved it. I thought my great advantage was that I never played organized sports as a child so I had no delusions of fame and fortune for myself or him. He could play a sport because he wanted to without fear of it being a proxy for my unfulfilled dreams or the pressure of making it his career.

    But at a recent game, I caught myself yelling at my son about his mechanics. Get your elbow up! Keep your eye on the ball! I yelled to get his attention when he wasn’t in the right position or was playing with his hat. What are you doing? Pay attention!

    During one of his at-bats, I was louder than his coaches. I could see that he was anxious and overwhelmed by all the other voices coming in at him. I knew he was also nervous because he was in a hitting slump. I wanted to be louder so that he would focus on my voice because I thought that would settle him down. When he struck out, I got mad at everyone else for yelling at him and distracting him. When my wife tried to talk to me, I snapped at her. Then, it hit me.

    I had become “that parent”.

    I tried to convince myself that it was different. I wasn’t trying to live through him on the field or get him a contract. I thought he would be happier playing baseball if he did better and I knew he could do better. I was trying to help him stay on task and remember his steps so that he would be able to draw some enjoyment from something in his life. It was for him, not for me.

    But from his perspective, his dad is yelling at him because he is doing something wrong. My son walks around apologizing for everything, anyway. I can’t help but think those things are related. Am I snapping at every little thing and making him feel in a constant state of disappointment where he feels the need to apologize all the time?

    I know that that’s like. I grew up with an unhealthy expectation of perfection. I’m still struggling with it today, and I see how it limits me. I wasn’t placing expectations on my son to become a professional baseball player. I wasn’t trying to relive my youth. But I still risked ruining the game that he loves by transferring my baggage to him and, worse, watching it seep into the rest of his life, too. I desperately want to learn those lessons before it’s too late because I don’t want him to turn away from something he loves because of me. I don’t want to be “that parent” who takes the joy out of the game. Because I can’t get out of the way.

    Baseball has been very good for my son. It continues to teach him how to be a part of a team. It gives him opportunities to believe in himself and work through difficult situations. It teaches him how to be a gracious winner and loser. And it shows him that he can get better at something through practice because he can see how he is better at the end of the season than he was at the beginning.

    Baseball has been good for me, too. It gives me opportunities to see my son in different situations where he can fail and succeed. It shows me that he can do so much more than I think he can, and it shows me when he can’t. And it’s causing me to look inward at my issues with perfection so that I don’t make them his.

    I want to do better. I think I am doing better. I hope I am doing better. Because at the end of the season, I want to see how much better I am than I was at the beginning.

  • 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.