epilepsy dad

Tag: life

  • Rock On

    Rock On

    The image above was 10 years in the making.

    The photograph on the left was taken in July 2014. We were in Philadelphia ahead of our eventual move from Colorado. My wife and son had a long week of exploring and house hunting, and we thought we’d unwind and play games. About an hour after that picture was taken, we’d be standing in the lobby waiting for a taxi and watching our son have his first seizure.

    Over the next 10 years, we’d see our son have countless seizures. We’d have many nights where we thought we would lose him. We would spend months in the hospital saving his life and then years trying to rebuild what was damaged. We would struggle to find his place in the world.

    The photograph on the right was taken at Dave & Buster’s a few weeks ago after our son’s last school day before winter break. As I walked around the corner and saw him pick up the guitar, I had the image of my present-day and my son 10 years ago, like two different realities, crashing together in my mind.

    While we’ve had struggles and challenges in the last ten years, the significance of that moment was that we’ve also had successes and accomplishments. Our son is 15 now, and we’ve had so many years we weren’t sure we would get. He plays baseball, enjoys gaming and streaming, and has friends. He’s in a school for kids like him, which gives him a place to learn and grow.

    When the picture on the left was taken, we didn’t appreciate how little knowledge and control we had over the future. Later that night, any vision we had for the future was shattered. The picture on the right reminded me that we can never predict the future. We can only learn to embrace every moment, victory, and opportunity to pick up the guitar and rock on.

  • Perceptions of Time

    Perceptions of Time

    A nurse led us into the recovery room, where the first thing that struck me was the stark change in my son’s appearance. His familiar Bryce Harper haircut had been replaced by a closely shaved head, but it wasn’t just the missing hair. As we rounded the bed, my wife and I froze. There, across our son’s skull, were the sutured incisions, and beneath the skin, the faint, raised outlines of the leads that connected deep into his brain, extending down to the generator implanted in his chest.

    We both gasped, instinctively reaching out, trying to bridge the chasm between shock and reassurance.

    I don’t know what I was expecting. Maybe nothing could have prepared me for the reality of seeing those physical marks—a visceral reminder of just how serious his condition is. It was more than jarring. It was a harsh collision with the truth that no matter how much we try to normalize life, this—his reality—is never far away.

    Seeing him reminded me of the last time he was in a recovery room after having his VNS implanted. The visible signs of that surgery were less intense. However, it was still our little boy sleeping on a bed in front of us who had, only hours earlier, been sedated and opened up on an operating room table, then carefully stitched back up after inserting a few extra parts.

    The DBS and the VNS were only two of the many procedures that our son has had at this hospital, the same hospital that saved his life and the same hospital that continues to look for ways to improve it. He’s had almost every type of scan, given gallons of blood, taken piles of pills, received tons of therapy, and otherwise been poked, prodded, and tested in every way possible.

    After he woke up, he was moved to the neurology floor, which had been our second home for a long time. Once we settled into his room, a wave of comfort washed away the shock and anxiety of the surgery. With that comfort also came the familiar change in the perception of time.

    Time on this floor doesn’t pass the way it does in the outside world. Inside these walls, it feels suspended, each moment stretching out between visits from the doctors, nurses, and support staff. We’d sit on the blue couch that doubled as a bed, gazing through the windows at the city rushing by below. We’d try to fill our time with distractions—phones, TV, bingo—but no amount of distraction makes the intervals between visits any shorter.

    Minutes stretched to hours stretched to days as they monitored our son, and we waited our turn for the final scans he needed before we could go home. To our real home, not this second home. To the real world, not this isolated, supportive, comfortable world. To the place where we would now wait, again, for our son to recover and to see if the procedure and the device make a difference.

    Looking at the past, at everything that happened to get us to this point, time passed in a flash. In the hospital, in our bubble of comfort and support, time stood still. Looking at the future, waiting for another answer, time stretches out for eternity.

  • Discovering What’s Next

    Discovering What’s Next

    Our son is officially a 9th grader, adding to our list of milestones and events we weren’t sure we would see.

    We are very fortunate to be able to start high school in the best way possible. The school he has been at since 6th grade offers a transition year, which we are taking advantage of with the support of our school district. That means he will have the same teachers, peers, and environment to continue his journey for another year. Especially with the looming surgery, recovery time, and uncertainty with his tolerance for calibrating the brain stimulator, keeping him in a place where he is comfortable and cared for is a gift.

    This is going to be a year of changes. Unless higher grades magically appear, this will be his last year at the school, and his peers who have been concentrated at his school will find high schools in their home districts. This will likely be his last year of baseball, as the level of play and competition at the next level may not be something he can manage. His peers will get their learner’s permits and start driving, something he won’t be able to do while he is still having seizures.

    No one knows what is on the other side of these changes. I am sure he will find friends among his new peers and that other interests will replace baseball. While he won’t learn to drive with his peers, there will be other rights of passage to conquer and other ways to grow.

    But many of these changes are still on the horizon. He has 9th grade to look forward to and another baseball season. He has his school, teachers, peers, and friends. He has and will always have his family. And together, we can navigate these changes and discover what’s next.

  • Making It Up As He Goes Along

    Making It Up As He Goes Along

    For as long as I can remember, my son has struggled with his memory. Whether it’s his school day or details about anything in the past, when we ask him about it, he doesn’t remember, or his answers are vague or confusing.

    If we ask him about a choice or why he did something, he usually says, “I don’t know” or “I don’t remember.” He’ll also say “yes” to most leading questions because he thinks it’s the right answer or what we want him to say. Or he’ll answer with reasons he might think of when we ask him the question rather than those that were more relevant at the time. It’s like applying hindsight to make sense of a choice made in the past, even though the information on hand now wasn’t available when the choice was made. Sometimes, it seems like he just makes it up as he goes along.

    I assumed this condition was related to his epilepsy or the side effects of his medications. Perhaps the same factors that cause his generalized seizures also affect his brain’s ability to process and store information.

    The other day, I was listening to a Fresh Air interview with Dr. Theodore Schwartz, a neurosurgeon who wrote a book called Gray Matters. In the interview, Dr. Schwartz described how the brain makes decisions, and it sounded like what happens to my son.

    And then what studies have shown is that a person will behave in a particular way based on something that’s unconsciously being processed in their mind.

    And if you ask them, why did you do that? Why did you behave that way? They will make up a story to make sense of it based on something else that’s going on around them.

    And it makes you realize that often a lot of our behaviors are done in an unconscious way, and we make up a story afterwards to try to make sense of why we did what we did. You can stimulate the brain and make someone turn their head from the right to the left. And if you say, well, why did you turn your head?

    They say, well, I was just looking for my shoes. I lost my pencil or something. And they will create agency where no agency exists.

    And so over time, you realize that the idea of the self and the idea of a unified self and the idea of making certain decisions that we think we’re in charge of, probably doesn’t happen in the way that you think it does.

    From Fresh Air: A Brain Surgeon Opens Up About Life In The O.R., Aug 5, 2024

    Our son’s subconscious seems to control many of his decisions, more than a typical teenager. That helps explain why he can’t remember the reason for making a decision, his struggles with impulse control, and his ability to always think through the consequences before taking action.

    The interview made me think about how we’re handling our son’s condition. How can we influence now to help his subconscious make good, safe decisions in the future?

    Over the years, we’ve learned to patiently navigate the maze of his memory to get an answer, trying to extract the subconscious reasoning and make it conscious with the hope that the process influences his subconscious the next time he encounters a similar situation. That way, even if he doesn’t always remember the reasons when thinking back, we can help make his subconscious reaction the right one.

    Obviously, it’s impossible to predict every decision that he will need to make in his life, but I hope that by continuing to train his subconscious with the decisions he is making today, his brain will generalize that training and apply it to related decisions in the future. When his subconscious takes over, it can at least draw from existing associations between reasons and good choices and apply them to that situation.

    There’s no guarantee that it will work or to what degree, but we’re all just making it up as we go along.

  • Imagine That

    Imagine That

    A few weeks ago, we went to three concerts in five days.

    The first concert was REO Speedwagon and Train. What might seem like an odd mix was incredibly entertaining. My wife also has connections with both bands. When she was little, her family stayed with the lead singer of REO for a few months in California. My mother-in-law and the lead singer’s wife were friends, and when my wife’s family needed a place to stay, they landed in the guest room of one of the hottest bands at the time. With Train, at a small show a few years ago, my wife found herself on stage singing with the band.

    Wild.

    The second concert was the following night. It was my wife’s band that she joined a few months back, and we’ve been lucky to see almost all of her shows. It’s an incredible feeling to see her back on stage where she belongs doing what she love and is so good at.

    The third concert was Imagine Dragons. Our son has wanted to see them for years, but we missed their last show in Pennsylvania. This year, they released a new album and, with that, began a new tour. This tour’s first stop was across the river in New Jersey, so we got tickets as soon as they went on sale.

    My son counted down the months, then weeks, then days, and finally hours until the show. The day before, he wrote a letter to the band that he asked me to send to them.

    The day of the concert, we agreed to a game plan that would start as soon as we walked into the venue:

    1. Go to the merchandise table and get t-shirts.
    2. Put on t-shirts.
    3. Get food.
    4. Sit down.
    5. Eat.
    6. Rock out.

    We breezed through the first three steps and sat in our seats as the crew was changing over the stage after the opening band. The venue was packed with amazing energy, and every time one of the screens turned on, there was a surge of excitement until we collectively realized it was another commercial.

    Finally, the lights went down. The screens lit up with an image from the new album “Loom” and a recorded poem played over the speakers.

    Through distant lens, I see your shrouded form
    It carries there through some fervent storm
    Its promise neither wilt nor rapture bloom
    But only that it will not fade
    It looms…

    My son spent the first part of the show with his phone in his hand, trying to capture every moment as the band performed. I could see him taking in the experience as he sang at the top of his lungs. It was as if the band did the show just for our son, playing all of his favorite songs.

    I love watching him be so engaged and happy. With all his struggles, past and present, I am grateful that we can give him experiences like this. The looming surgery reminds me not to take the time we have for granted. As too many people know in this community, it can all end too soon.

    Of all the concerts I have seen, this was one of my favorites. Not just for the band and their performance but for the joy I saw on my son’s face. It was made even more special that we experienced it with our expanded family member, who was attending one of her first concerts. Watching the two of them sing and dance for the entire show was worth the price of admission.