epilepsy dad

Tag: family

  • Goodbye, 2018.

    Goodbye, 2018.

    Today is the start of a new year. The Earth has made another full rotation around the sun as we hurtle through space and time. Along the way, moments were left behind like discarded Polaroid photographs that littered the void with what was and will never be again.

    As the universe continues to move forward, it leaves those pictures out of reach. Except they are more than pictures. They are memories with an emotional connection to people and to a time that cannot be experienced again.

    Or changed. If I do try to stretch in to the past, it’s usually to try to hold it and wish I had something different. But that often leaves me feeling sad or empty or guilty.

    There are so many memories that I want to forget. I’m afraid if I reach back to grab one that it will pull me back into the vacuum and suffocate me. Maybe that explains why I’ve never been particularly good at looking back.

    So I try to focus on the present, except that I’m not always great with that, either. I’m better than I was, but I still miss a lot of what is happening in front of me. Maybe things are moving too fast. Or maybe I do it intentionally because sometimes what I see in front of me is hard.

    My son is stills seizing. His anxiety is worse and it is isolating him. The keto diet is particularly hard right now with a lot of sneaking food. The VNS surgery that I resisted for so long has left my son with a vibrato in his voice that occasionally makes him insecure.

    But if I could reach out in to space and pull one of those pictures from the past and hold it up to the present, I would see how different this year is ending than the last. I would see how much progress we have made.

    We met new people and built stronger relationships with the people in our circle.

    We have found a nanny and a tutor that has made our lives better in so many ways.

    We had countless examples of people showing my son and our family immeasurable kindness and compassion, from his baseball coaches making him feel like a part of the team to strangers that saluted him when he wore his Captain America costume.

    After a long struggle, we have our IEP and are getting the supports put in place to help protect my son and get him the education that he is entitled to.

    We were honored by the Epilepsy Foundation Eastern Pennsylvania at their Mardi Gras fundraiser and joined their board to give back to the organization that has given so much to us and others in our community.

    We returned to the National Walk for Epilepsy and my wife and I both ran events at the Philadelphia Marathon to raise money as part of the #AthletesVsEpilepsy team.

    This blog has connected me with so many people.

    And throughout the year, our life was sprinkled with countless tiny, special moments. Like stars shining through the black curtain of space, we only needed to look up to see them. To let them in. And to be amazed by their splendor.

    Last year was a year of transition, taking us from where we were to where we are. I’m looking forward to this year as the year that will get us closer. Closer to my son’s seizure dog. Closer to an answer on the VNS. Closer to each other and to the people around us. Closer to who I want to be. And closer to understanding our place among the stars.

    I’m not great at looking back. And I’m not always good at looking up. But I want to be.

    Maybe that is something to look forward to in 2019.

  • Around The World

    Around The World

    I’ve always loved to travel. I lived in Germany when I was in the Army and I traveled to Japan and China in my single days. My wife and I honeymooned in Fiji and Australia. Almost as soon as we stepped foot back on American soil, I began looking for jobs in Sydney and Melbourne.

    When my son was younger, he took French classes and we planned to start with Montreal before exploring France and then, ultimately, starting a second career working in kitchens across Europe as a chef.

    Our move from Colorado to Philadelphia was part of that adventure. We left the relative safety of the whitewashed suburbs and moved to a diverse, gritty city and everything that brings with it. But as soon as we landed, my son started having seizures.

    In a way, I’m grateful for the timing because we are within ten minutes of one of the top children’s hospitals in the country. The people in that building saved my son’s life and continue to care for him. But now I feel tethered to that place. If we go too far away for too long, his seizures snap us back, sometimes violently, into their care.

    The daily seizures, the weekly doctor and therapy appointments, and the monthly medication refills make it impractical to look too far outside of our little bubble in the city. There isn’t a way to accommodate my son’s needs while chasing the dream of a life unbounded.

    But I’m not resentful. As much as that might have been the life I wanted, this is the life I have. I wouldn’t trade that life for the moments I’ve had and the lessons I’ve learned in this one.

    The dream of living in another part of the world seems so far away. But the reality is that we are exactly where we need to be.

  • The Art Of Disappearing

    The Art Of Disappearing

    I’ve perfected my ability to disappear. Only, it’s not a magic trick. It’s the way I have trained myself over the years to deal with difficult situations.

    I developed this ability at a young age. For most of my childhood, I navigated the world alone. I figured things out by myself. Sometimes, I figured out really hard things and I was rewarded with praise that reinforced my growing belief that this was the way to operate in the world.

    I wasn’t quite a loner. I had friends, but I found comfort in being alone. Friends were for making mischief and playing sports. But when it came to solving problems, I worked alone, whether the problem was a difficult project or the increasingly complex emotions that come with growing up. I solved those, too, internally, in my way, and away from everyone else.

    Again, I was rewarded with harder projects and better opportunities. At the time, I saw my detachment from other people as an asset because it made it easier to shut them out when I faced a problem. But as the matters of the heart got bigger and more complicated, I started to put those matters on a shelf and not deal with them at all. I would find distractions or try to solve other people’s problems so that I didn’t need to face my own. Even then I was rewarded by better opportunities and more people coming to me for help, feeding my ego if not my soul.

    But in the last few years, it became clear that what got me here was not what was going to get me there. Where I wanted to be. Who I wanted to be.

    I had this moment of clarity after taking a leadership class that included a behavioral assessment. When the results showed that I was a thinker, I beamed with pride. It described me perfectly, solving hard problems, concentrating on my thoughts. But then the instructor talked about how thinkers are perceived by the people around them and I felt a wave of reality crash into me.

    The thing about disappearing is that it leaves the people around me alone. It leaves them wondering where I am. It leaves them wondering if they are important to me. It leaves them disconnected in times when being together…being connected…is what is most important.

    Clips from my memories started playing in my head. My wife and my friends told me in their own way that they felt alone or wondered whether they were important to me. Bosses wondered if I cared about the project or the job. And my response to these big questions was to disappear so that I could think and process. I thought about how I would feel if someone did that to me and it made me sad. I thought my wife as we watched our son get poked and prodded and seize and as we listened to doctors tell us more bad news. I thought about how when she turned to me for comfort or connection how I wouldn’t be there because I would be off trying to deal with it by myself. I felt sick.

    What got you here won’t get you there. ~Marshall Goldsmith

    It’s not easy to face the realization that such a core part of who I was had such a negative impact on the people around me. It’s even harder to change more than forty years of programming. But there is no question in my mind that it needs to be done.

    Even with the small progress that I have made, I can see changes in my relationships. I may not be able to stop myself from disappearing, but I feel it happening so I tell the people around me so that they know I am still there. I’m more aware when I am in that place and it’s less comfortable than it was, so I don’t stay there as long. I’m getting braver and facing challenges instead of avoiding them. Most importantly, I’m starting not to do it alone. Because no one can. And no one should.

  • 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.

  • 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.