epilepsy dad

Tag: epilepsy

  • Probabilities

    Probabilities

    I spend a lot of time thinking about probabilities. Usually, it’s for my day job in artificial intelligence, data science, and analytics. Predictions abound in that world as we figure out the likelihood that something will occur and make a decision based on that likelihood.

    Guided and confined to a business context, the probabilities are mostly numbers I can understand and that are useful for the business to take action on. The other day, I was thinking about my son’s upcoming surgery, and my mind wandered through all of the events that had to happen to get us there.

    The material was drawn from the earth to manufacture the instrument and the tools to perform the surgery.

    The elements that made up that material had to be captured and combined to form a planet capable of creating life.

    A boy on that planet had to grow up to be a neurosurgeon to do the surgery.

    A girl on that planet had to grow up to be a neurologist who saved our son and recommended the surgery.

    My wife and I had to be born, live more than thirty years of our lives, find each other, get married, and create a life.

    Thousands of generations before us had to be born, meet, and multiply.

    A gene had to be passed down through those generations, evolve, and mutate to cause the seizures in our son.

    The cosmic material that formed the genes and the elements had to be forged in the heart of stars over billions of years and make their way to this part of the universe, on this planet, and in these people.

    At any point, a variation could have changed the course of the billions of years of possibilities and choices that led to each successive moment. But all of those possible points of diversion led to this path, to this universe, to this planet, to these people, to my wife, to our son, and his condition.

    Maybe there’s a version of our family without epilepsy in another universe. But there are also infinite versions of me without this family. With the unfathomable probabilities against existing in this moment and with this family, I am exactly where I am supposed to be.

  • Milestones

    Milestones

    The Latin is “milia passuum,” meaning a thousand paces. The Romans also erected stone markers at mile intervals to notify the passerby of distances covered or the number of miles to go to reach their destination.

    The Lower Merion Historical Society

    We sat in our chairs among other parents, siblings, grandparents, and friends. The gymnasium was filled with nervous energy as we waited for the ceremony to begin.

    It was a day that we weren’t sure would ever happen. For 10 years, my son struggled with unrelenting seizures, medication side effects, and behavioral issues. After he was stabilized, although never seizure-free, he faced social and intellectual challenges in learning environments tailored for students who were not like him. At the same time, my wife and I fought school districts that seemed motivated to make him disappear. That was until we found his current school.

    For the past 3 years, he was in a place where he belonged. He was in a place that saw him for who he was and celebrated it. He was surrounded by peers on similar journeys and was able to bond, make friendships, and learn. When we received the results of his recent neuropsychology test, it showed progress. He was below his grade level, but there was progress. After his testing a few years ago, the doctors predicted only regression. We started looking at functional schools, assuming the academics would be too challenging. That was until we found his current school.

    As I took it in, Pomp and Circumstance began playing, and the room collectively turned to face the door. Our son, dressed in his blue suit and tie that matched the school colors, led the procession of 8th-grade graduates to the stage.

    I looked at the faces of the families around me in the gym. I listened as they spoke about their experiences with the school and how proud they were of their children for reaching this milestone. My heart swelled as I watched the video the school made, combining pictures and videos of the students being interviewed about what they learned and what they would take away from their experience at the school.

    When it was time to hand out diplomas, I walked to the back of the room and hid behind my camera. I’ve gotten to know many of the graduates and their families, and I knew it would be emotional for everyone.

    There is a tradition at the school where the teachers put together an acrostic poem using each student’s name. As each student stood on the stage, teachers took parts to read. Every line of every poem showed how well they knew each student with a great mix of pride, humor, and recognition.

    My son was the last to the stage. He stood tall as he climbed the steps, but I could tell he was nervous. The anticipation of this day and this moment had been building for weeks. As he stood to the side, the teachers read his poem, which, appropriately, included a Marvel reference. He looked so happy when he received his graduation certificate, and he and his teachers exchanged big, warm hugs.

    And then it was done. Students, faculty, and families came together and filled the gym with love, and pride, and gratitude. I found my son in the crowd and he fell into my arms as I gave him a long hug. My wife came over and we all embraced and shared the moment as a family.

    There are milestones and there are MILESTONES, and this was definitely the latter. It is a moment set in stone to let us know how far we have come along our journey, even if we don’t know how far we have to go.

  • Relax, It’s Just Brain Surgery

    Relax, It’s Just Brain Surgery

    At a recent appointment, our neurologist suggested deep brain stimulation for our son.

    Brain surgery.

    A recommendation for another surgery was unexpected. We had just weaned off the Onfi and were down to only two seizure medications. The switch from keto to modified Atkins proved challenging to keep his ketones up, which is shifting us to a trajectory that will place him on a normal diet for the first time in almost 10 years. Still, with those changes, we haven’t seen an increase in seizures. Considering the toll puberty has taken on his body physically and emotionally, I was grateful to be where we were.

    But we’ve been at this long enough to know it’s not just about seizure freedom. Our focus has always been on finding the balance between seizures and quality of life, since heavily medicating him never stopped the seizures but turned him into a zombie. At one point, he was on 4 medications, the ketogenic diet plus the VNS, and even then, seizures would break through. That he can go to school and learn, play baseball and video games, and have a life at all is more than we could have hoped all those years ago, watching seizures wrack his tiny body.

    We also know that our choices aren’t just about the present. We also have to think about the future, and that future includes the potential dangers that come with uncontrolled seizures and epilepsy. Our son’s condition presents similar to Lennox-Gastaut Syndrome, and with that comes an increased risk of SUDEP.

    Any options that lower his risk but still allow him to have a life are worth exploring, especially because our list of options continues to shrink. I hope for continued advancements in technology and medication; deep brain stimulation is a good example. It wasn’t an option for children with epilepsy until recently, but now it is being offered for our son.

    Which brings us back to…brain surgery.

    I’m not sure what I expected before we met with the neurosurgeon. Correction: I expected brain surgery to include opening up our son’s skull with power tools. When the surgeon explained what the surgery actually entailed, I felt a sense of relief. Other than the fact that, yes, things would be inserted into our son’s brain, it sounded similar to the VNS surgery. It also helped that the surgeon, the same surgeon who did our son’s VNS surgery, is the epitome of cool and has done the surgery enough that it sounds like he’s describing a routine task.

    I’d imagine it would be the same as a pilot describing how to land an airplane. Sure, it makes sense, but there’s enough awareness and humility on my part to know that a) I can’t do it and b) you obviously know what you’re doing, so I can relax and let you land the plane.

    I left the consultation feeling less overwhelmed and in favor of the procedure. We also talked to our son about it because he’s old enough to have an opinion about his body. He had a few basic questions but did not hesitate before agreeing to the surgery.

    And, with that, the decision has been made.

    Let’s land this plane, doc.

  • My Apologies

    Last spring, my son and I went to a baseball game with friends to celebrate their son’s birthday. We had a great time, mixing cheering for the home team with ballpark food and catching up. Our Phillies won in dramatic fashion in the bottom of the ninth inning, which the birthday boy thought was an amazing present from the team.

    After the game, I texted to thank them for inviting us. As we chatted, our friend included an apology for his son’s relentlessness, which, during the game, I took as enthusiasm and excitement for the experience. Instinctively, I responded by telling him that he should never apologize for his son and assured him that we had fun and that it was a delight to be a part of his son’s special day.

    I’ve been thinking about that interaction a lot since then.

    We’re fortunate to have people in his life who know our son and appreciate him for who he is. These include the teachers at his school, for example, and the doctors, nurses, therapists, and other healthcare providers with whom we interact regularly. They see and accept him, and they don’t make him feel like he needs to apologize for being himself. It includes friends who have children with similar conditions and other friends who have taken the time to get to know him.

    But how many times have I apologized for my son to the outside world, whether it’s his inability to know when to stop telling a joke, his impulsiveness, or his awkwardness? Where is the line between apologizing for an act and apologizing for a person? Is there even a line? What if you can’t separate the actions from the person or the condition?

    I apologize when he doesn’t understand something other kids do, when he’s unaware of the world around him, or when he’s too tired to function. Even without the special circumstances, I feel like I’m the type of person who would apologize for him doing things or just being a kid because the expectations I often set are based on how I think he should be, what society expects him to be, or, also unfairly, what an adult is expected to do.

    Whether it’s because he sees me do it or not, I have noticed that my son apologizes a lot, too. In some cases, it’s justified to apologize for an action that impacts a person around him. Other times, he’s apologizing for something he can’t control or a symptom of his condition, like his struggle with his memory or his attention. Those are the times when the apologies can bleed into his identity and how he feels about himself, which is what I am desperately trying to avoid.

    Because we never want him to feel like he needs to apologize for who he is.

    Ever.

  • Family Matters

    Family Matters

    When my son first started having seizures, we had just moved to Philadelphia. We were in a new city with no family and no support system in place. We navigated the fear of losing our son by ourselves.

    My parents were elderly living in Florida. There wasn’t much they could do. My wife’s mother was running a business in Colorado. We told our parents that there was nothing they could do partially because we didn’t know what anyone could do, and partly to free them from the burden of responsibility.

    Along the way, we were supported by our children’s hospital, and the doctors, nurses, therapists, and other caregivers. We hired nannies to help with caring for our son at home. But these were either health care professionals or people we had to seek out and pay for. That made our support system transactional and expensive, and left us still feeling isolated and alone.

    A few years ago, my parents moved to Pennsylvania. It was nice to have them closer, and we were able to occasionally leave our son with them for a night so that we could go on late date nights or spend a night away. My father doesn’t drive anymore, but my mother could also pick up our son from school if we got stuck. And while we desperately needed help when my son’s health was at its worst, it was still nice to have the help now.

    Around the time when my parents moved, we also reconnected with my family in Connecticut. During the pandemic when we made our excursions to Maine, we would stop to visit them. My cousin started coming down occasionally, too, to spend time my with parents. When my parents moved into the assisted living facility, our cousin would stay with us and it was awesome.

    This spring, my mother had a stroke. I learned about it when I grabbed my phone lying in bed next to my son after he had the biggest seizure he has had in years. It was a rescue medication type of seizure, followed by messages from the nursing facility and my father about my mother.

    My wife and I switched into caretaker mode and made a plan. She would stay with my son and I would attend to my mother and check in on my father. I quickly got dressed and headed to the hospital.

    When I got to the hospital, my mother was in poor condition, but she was stable in the intensive care unit. Once I got the report from the nurse, I texted the family. That was mid-morning, and by early afternoon, my cousin and an uncle had made plans to come to Pennsylvania.

    For as familiar as navigating a hospital in response to a crisis was, it was a different experience knowing that help and support was coming. That feeling of having someone show up for you is one that I’m only used to with my wife, who constantly has my back. Having family here meant that we could also focus on my son without worrying about my mother, and also mix in time with my father and time to rest, which we are not typically able to do when these crises occur.

    What could have put an overwhelming amount of stress on my wife and I turned out to be manageable thanks to the support of our family.

    I’m happy to report that my mother continued to recover and went home the following weekend, and my son took a few days off but was able to go back to school and even play baseball that weekend.