epilepsy dad

Category: epilepsy

  • Holding On to Moments That Last

    Holding On to Moments That Last

    A few weeks ago, I took my son to the airport. It was the first time he was going on a trip without me. And not just without me, he was traveling for the first time as an unaccompanied minor.

    He was growing increasingly nervous leading up to his trip, and each day, his anxiety showed more on his face. I woke him up early that morning to give us plenty of time to check in and get my gate pass, which added a slow, sleepy haze to his nervousness.

    We passed through security and headed towards the gate. I checked his boarding pass and looked at the signage. We were two terminals away and the gate was the second to last in the terminal, which meant we had a hike in front of us.

    I led the way as he trailed behind me, his loaded backpack hanging over his shoulder, adding weight to his burden. I offered to carry it for him, but he declined. His face was blank, his mouth slightly open, drawing in air, as we pushed forward until we entered the terminal for his gate.

    “I’m so hungry,” he moaned.

    “Ok, pal, we’ll find something closer to the gate.”

    We pressed on through a largely empty terminal, the stores and eateries closed. He reminded me every few minutes of how tired and hungry he was, in case I forgot. I said a little prayer that there would be a place for him to get food and that he would have enough time to get it near his gate. Fortunately, there was a food court with a Sbarro within view of the gate.

    He slumped into a chair, dropping his bag off his shoulder, as I went to order him food. I glanced over, and he had the same exhausted, blank expression on his face. I brought him a slice of pepperoni pizza and a glass of water, placing them in front of him.

    After it cooled, he hunched over and took a few bites.

    “I’m too tired to eat.”

    “Ok, pal.”

    I packed up his food and picked up his backpack.

    “Let’s get you to the gate,” I offered.

    He stood up slowly and followed me the rest of the way.

    His flight was already boarding, so I went to the desk to let them know he was there. We stood off to the side as they finished boarding, which is when there was enough of a pause for me to start missing him, even before he left my sight.

    I thought about the previous day. When I dropped him off to school, he asked me if I would play basketball after I picked him up.

    “Maybe,” I said. I knew I had a big day at work ahead of me, and I didn’t want to commit and then disappoint him if I was too busy or tired.

    And I was. But the first thing he said to me when he stepped into the car was to ask about playing basketball. Every exhausted fiber of me wanted to say ‘no,’ but I knew I’d miss him terribly and wanted to spend every minute with him.

    “Only if you want to lose,” I responded. The smile on his face, followed by him cracking his knuckles and neck, was everything, followed closely by our time on the court playing, and laughing, and being together.

    Standing at the gate, I reminded him of our games the day before, including the game where he beat me 21 to 0. There was a glimpse of energy, and a smile, and I felt lighter.

    The agent finished boarding the other passengers and came to us to escort my son to the plane. I gave my son a hug and a kiss, put on a brave smile as he disappeared down the jetway.

    I stood at the window, watching the pilots finish their preflight checks before the jet bridge was retracted. The airplane pushed back and entered the flow of traffic to taxi to the runway. Once it disappeared from my view, I began my long journey back through the airport, to the car, and finally to the house, which felt emptier without my son.

    It was terribly quiet.

    But as I left later that morning to go to work, I saw the basketball on the floor of the garage and was instantly reconnected with my son through the memory of our games the day before.

    He’s growing up so quickly. Each step he takes towards independence means there will be fewer moments like the ones we’ve shared. Each year, he’ll need me a little less, and that’s how it’s supposed to be.

    But until then, I’ll seize every chance to create more memories, so that even when we’re apart, it feels like we’re still together.

  • More Than Survival

    More Than Survival

    When I was young, I didn’t have a lot of support learning how to manage big emotions. When things got hard, I would go internal, like a turtle pulling itself into its shell. I’d get anxious and scared, pulling my extremities closer to my body to make myself as small as possible until the danger passed.

    That was a survival skill, but while it helped me get through the danger, it didn’t address the fear and anxiety that remained. I never learned to regulate my emotions and nervous system. As a result, I spent much of my life being an anxious, introverted, scared little boy and hiding from the world.

    I developed other skills to compensate. I found the courage to join the Army. After the army, I started a career, got promoted, and led teams. I got married and started a family. That’s when those compensatory skills began to fail, and I reverted to the safety of going internal, which had worked for me. Still, it didn’t work for deepening a relationship or dealing with difficult situations together.

    The stress of starting a family is real, and it was terrifying to bring another life into the world and be responsible for keeping it alive. I knew I wanted to give my son a better childhood and life than I had, which felt like a huge responsibility especially considering I had no reference or idea what that meant. It was easy to do the fun stuff with him, but the stress and anxiety brought some of those survival skills back to the surface which created distance between me and my family. But we managed.

    The bigger test was when we moved to Pennsylvania. We moved across the county into a new city for a new job and, within a few months, my son also began having seizures. Within that first year of moving, we spent nearly six months in the hospital trying to get his seizures under control, dealing with side effects from his medications, behavioral issues, and the fear of losing him, all in a new environment where we had no support.

    Again, those survival skills that I learned as a child came back in full force. I forced my emotions down inside my shell and focused my energy on the logistics and on getting things done, rather than dealing with the fear, anxiety, shame, and despair that were trying to make their presence known.

    That could be what was necessary. I needed to keep my job, maintain our insurance, put food on the table, and create a sense of normalcy in an unstable and unnatural time. While the crisis was happening, I needed that focus and detachment. But afterward, when the danger had subsided and what was left was the rebuilding of our son, that detachment became a divide, a chasm I couldn’t reach across to connect with my family.

    I’ve spent a lot of time since then to cross that divide. Therapy, self-reflection, and the hard work of being present have brought me closer to my son, and I hope they have also set an example for him on how to balance survival with connection. It’s not easy, but it’s worth it because my son deserves more than just survival.

    He deserves me.

  • Alone Together

    I don’t know where you’re going, but do you have room for one more troubled soul?

    That’s a line from the Fall Out Boy song Alone Together. The title itself is an oxymoron. How can someone be both alone and together at the same time?

    There are a lot of ways to interpret it. Some people hear it as being about drugs. Others think it’s about two people in the same physical space, but still feeling isolated and apart.

    That idea feels familiar. During the pandemic, my family and I were together in the same house, but often living separate lives. We ate in different rooms. We passed each other in the hallway with only transactional conversations. We were together, but we were also alone.

    Sometimes, that distance can feel easier. It can be exhausting to be emotionally available all the time, especially when there is no break or separation. But if that becomes the norm, it’s a dangerous road. The road to ruin, as the song puts it, “and we started at the end.”

    There’s another way to look at the phrase, though. You can also be physically alone from the rest of the world, but emotionally together with someone else. That’s how I often feel with my son. We are separate from much of the world—by circumstance, by hospital stays, by the realities of epilepsy—but in that separation, we are together. Us against the world. Not really alone at all.

    That’s the tension at the heart of the song. It’s also the tension I feel as a parent and caregiver. Lonely, but not alone. Together, but sometimes separate. Finding connection even in isolation.

    Let’s be alone together. We can stay young forever. Scream it from the top of your lungs.

  • Scars and Survival

    Scars and Survival

    Last summer, I was at the pool with my son.

    It wasn’t that long ago that he needed to stand on his tiptoes to keep his head above the water. Now, standing over six feet tall (the tallest in our family, as he likes to tell everyone), only his waist is submerged. His skinny torso sticks up like a twig in a pond.

    His body carries many markers from his life. There are scars from his adventures and falls. There are stretch marks on his lower back from his growth spurt. And there are remnants from the incisions on his chest and neck from his surgeries that implanted the two devices and the leads to his brain.

    It’s hard not to notice, prominently pushing against the skin on his chest, the two implants. Against that skinny frame, with no fat or muscle to buffer them, the devices look huge. They are a permanent alteration to the contours of his body, captured on his chest like a relief map, describing the differences in elevation and the way the land rises and falls. And similar to the permanence of mountains in our lifetime, they will remain a defining part of his body’s landscape.

    Of all the recorded history on his body, the implants are the hardest for me to see. The scars, even those from his surgeries, can be rationalized away as everyday occurrences of a growing child. I’ve had a scar above my eye since I was five, when I chased my sister under a glass table and forgot to duck. I’ve had a scar under my chin from when I was ten and tried to jump over a softball on my bike. And I have scars on my hands and arms from the countless times that I clumsily pulled something from the oven without protection and burned myself.

    But the implants can’t be explained away as normal consequences of living. They are more than just damaged or healing skin and tissue. They are unnatural, and there is no alternative explanation to the reality that they are devices inserted into his young body to help reduce his seizures. They are visible reminders of his challenges—challenges, like the devices themselves, that he will likely carry for the rest of his life.

    Seeing them, it’s easy to fixate on the implications and miss out on the significance of the moments that they enable. He’s alive. He’s having fewer seizures and has stopped a few medications. He and I were in a pool playing basketball, spending time together, and laughing. The reason he has the devices may be overwhelming, but the life they allow him to live is a medical miracle.

    I still see the devices when I look at him, but I’m learning to see them differently. They don’t just mark his struggle—they also mark his survival. They are symbols of how far medicine has come, of how far he has come, and of the moments we still get to share.

  • Ballpark Memories

    Ballpark Memories

    Growing up, I didn’t spend much time with my biological father. My parents divorced when I was two, and my mother had custody of my sister and me.

    Our father would pick us up for holidays, or to swim in our grandparents’ pool on those hot New England summer days. We would occasionally visit his mother in New Hampshire. But my favorite visits were the ones when he would take us to New York to see the Yankees.

    A few weeks ago, a friend gifted my son and me tickets to see the Philadelphia Phillies. It was our first game this season, and I’m glad we got at least one in before the season ended.

    Since it was just the two of us, it reminded me of the Yankee games with my father. I remember going to the games early and watching the players warm up. I remember running down to the first row next to the field, getting a closer look at them, and catching a ball tossed into the stands as they left the field. But even though I know he was there, I don’t remember my father at those games.

    I don’t remember having meaningful father-son conversations. I don’t remember even talking about the game. I don’t remember us joking or celebrating the wins and the dramatic plays, or sharing the misery and disappointment of a defeat. It wasn’t a shared experience.

    As I sat there with my son, I wondered how he would look back on this time with me. Will he remember how we bring our gloves to every game in case of a fly ball? Will he remember how I act surprised every time he eats an inhuman amount of hot dogs or a whole pizza? Will he remember how we call out to our favorite players, and will he see me on the other side of the high fives after a big play?

    I am not trying to rewrite the past, but I can shape the present. My father’s absence taught me how important it is to be fully present when we are together. Not just sitting in the seat next to my son, but sharing in the joy, the laughter, and the heartbreak that come with the game.

    I don’t just want him to remember going to games.

    I want him to remember that we went together.