epilepsy dad

Category: parenting

  • Play Ball

    Play Ball

    My son stepped out of the car and headed to the facility without waiting for us. The near-full moon lit his way from the parking lot to the bright light shining through the glass doors.

    I jogged to catch up with him. I said what dads are supposed to say.

    “Remember what you’ve learned.”

    “Try your best.”

    “Have fun.”

    He nodded as I held the door open, and we stepped through the threshold and into baseball evaluations.

    I scanned the waiting area while my son headed to the bench to prepare his gear. The kids were clustering in groups, classmates and previous teammates catching up on their year. There were a few familiar faces from last season, and we exchanged greetings. A few made a point to say hello to my son, too.

    My attention shifted to the players on the field. The evaluations are comprised of fielding, throwing, and batting exercises. First, a coach hits about ten ground balls that the players field and throw across the turf to a mock first baseman. After fielding, they grab their batting gear and head into the cage to face ten pitches from a pitching machine.

    For most of the players, these activities are routine. In fielding, the coaches try to hit difficult bouncing balls, but for the most part, the players catch the ball in their glove and rocket it across to the awaiting glove. A few kids had missteps but, for the most part, recovered in stride.

    It was the same with batting, although the differences between the elite players and everyone else were more noticeable. The compact swing, the crack of the bat, and the speed at which the ball left the bat were impressive for most grownups, and these players were only fourteen.

    I watched as my son walked over to check-in. He told the coach his name and stood near the netting, waiting for his turn. The other kids continued to chat and joke while my son stood alone. He tried to join a joke at one point, but it landed flat. I’m not sure he noticed, but it was all I could see.

    We’ve noticed the drift between my son and his peers growing wider. At school, it’s less apparent because he’s surrounded by other children with similar intellectual, emotional, and social challenges. But in situations outside that bubble, there’s a spotlight on those differences.

    When it was his turn to step onto the field, I gave him a smile and a thumbs-up.

    Even during the brief warmup, I could see how tense he was. His feet weren’t moving, and it looked like he was doing the drills he does with the off-season coach we hired rather than casually warming up with the other children. After every throw, he’d look our way…I’m not sure if it was for approval or comfort. But it was making me anxious with worry, so I continued to smile and overexaggerated a deep breath that I hoped would encourage him to relax.

    His fielding started off slowly, and his throws were off. A few went wide, while others bounced short but were on target and made it to the coach’s glove. Still, he stuck with it, resetting himself after every throw to receive the next ball.

    After fielding, he grabbed his helmet and bat and stepped into the cage. The balls were faster than he had seen in a while, but he made contact with a few and then started to struggle. I heard the coach who operated the machine encourage him and, after he made contact with one, told him that was a good swing to end on.

    When he stepped off the field, I could he see the disappointment on his face.

    “I didn’t do as well as I could have,” he said with his head down.

    My heart sank. The conversation with his coach last year about the skill bar getting higher every year came back to me. We had no aspirations of our son being a professional player. Still, baseball was one sport he’s been able to play all through his health struggles, partly because of the nature of the game itself but also because we’ve been very lucky with the coaches we’ve had that supported him and made him feel part of the team. Compared to where we had been with his challenges, every catch, every hit, and every smile was one we never thought we’d see. The idea that we’re close to losing that was hard to process. I did my best to keep those thoughts from appearing on my face.

    We spent the short car ride home trying to understand his feelings, which is often difficult. My son doesn’t always know or have the words, which occasionally leads to him agreeing with whatever feelings we ask about, so we’re never quite sure if they are his feelings or our projections.

    By the next morning, he was feeling a little better. I don’t know if it was because of our talk or because he forgot how it made him feel. Either way, I was grateful.

    I felt a little better, too. It’s easy to get stuck on what he can’t do or what is taken away. The losses seem so much bigger than the gains, even though there are many more gains than losses. That he was able to play baseball at all was such a gift, one that we enjoyed for many years. If and when the time comes when he isn’t able to do it, either because he can’t keep up or because he doesn’t enjoy it, we’ll try to be grateful for what we had and find that next thing that brings him joy.

    A few days after the evaluations, we’re not there yet. My son seems ready for the season. We’ll keep our fingers crossed for another kind coach and supportive team and look forward to the experience ahead.

    Play ball.

  • The “P” Word

    The “P” Word

    Other than dying, I think puberty is probably about as rough as it gets.

    Rick Springfield

    I can relate. We’ve faced both of the top items on Mr. Springfield’s list during our epilepsy journey. There were many times when we didn’t think our son would reach puberty. There were long stretches when our son was in status, when we were in the hospital, not knowing if there would be a tomorrow. Once his condition stabilized, even though his seizures not being under control led to an increased risk of SUDEP, we worried that when puberty did come, his seizures would get worse because of the hormones and the changes in his body and brain.

    Well, we have reached that part of our program where our child begins the transformation into a young adult. That thing we weren’t sure would happen that then loomed over us when we thought it might happen is here.

    Puberty.

    Part of me appreciates the miracle. The body is an incredible, complex system that changes as it matures and grows. We literally started as a clump of cells and were able to invent medicine, computers, and space travel. It’s also a miracle that our son is here at all. In a different time, in a different place, his journey could have gone in a very different direction.

    Another part of me is right there with the man obsessed with Jessie’s girl.

    Puberty is rough.

    I don’t have any good memories of puberty. I do remember that I didn’t have any real guides or explanations for what was happening, so I largely experienced it alone. My parents and friends didn’t talk about it. In school, we learned the basics of biology from a book, but that didn’t cover the confusing, very personal, and very real changes that were happening to me. That experience left me feeling lost and insecure, and those insecurities carried well into my adult life, even today.

    I want my son to have a very different experience than I did. I want him to have more answers than questions. I want him to feel supported rather than alone. But helping him navigate this part of his journey feels like asking for directions from a tourist. Oh, and also, there is a seizure monster that may or may not attack you along the way.

    I’ve had enough therapy to know that the first step is setting the intention for it to be different for my son than it was for me. Check. We’re also very fortunate to be supported by his school and the team of people at our children’s hospital. There are many more well-informed, science- and data-backed resources available today. And I have an amazing partner, so our support system is in place. Check.

    The next thing to do is start, although admittedly, I’ve felt like I’ve stumbled a bit taking those first steps. His access to both good and bad information and our evolving understanding of gender and sexuality have left me unsure of where we are starting. But with the right resources and support, we are starting to get our bearings, and we are on this journey together.

    That’s already a better start than I had.

    I wanted to pass along this book that has been helpful in grounding my understanding and the language we use when talking about gender, sexuality, and related topics. The book is For Goodness Sex: A Sex-Positive Guide to Raising Healthy, Empowered Teens by Al Vernacchio. Al also has a few TED talks and videos available that are wonderful resources for parents.

  • Where Do We Go From Here

    Where Do We Go From Here

    I’m coming up on the 8th anniversary of the Epilepsy Dad blog. That’s more than 200 posts documenting our journey since my son was diagnosed with epilepsy in 2014.

    The beginning of that journey was pure chaos. We were coming through nearly losing our son when the doctors couldn’t control his seizures when I wrote my first post. I captured the endless and severe side effects of the medications we tried. I shared our experiences with therapy as my son lost control of his emotions. I documented every attempt to control seizures, from CBD to the VNS, that were never able to silence them fully. And I captured not just my son’s challenges but the impact that this complicated condition had on my family and me.

    Admittedly, the last few years have been sporadic with posts. I’ll get the inspiration to write when we reach a new milestone or when we encounter a new setback, but largely it’s gotten more difficult to find that inspiration because our life feels pretty settled.

    Settled. It’s a strange word to be using. My son still seizes every day. He still takes handfuls of pills multiple times a day. He still struggles in school, socially, and emotionally. His future is still uncertain. From the outside, it must look anything like being settled. But this is our normal. This is our every day, and less and less does anything happen outside that normal.

    That’s not to say that we don’t celebrate the exceptions when they do happen, no matter how small. A good report from his teachers or doctors. A hit at a baseball game. A dominant win at Uno. We also have the good fortune to have had amazing experiences and see interesting places. In many ways, we’ve worked hard to get to this place so that this could become our normal, in spite of the challenges.

    But where do we go from here?

    When I sat down to write, my intention was to make that question about the blog. What else is there to write about? What other part of our story was there to write about when most days feel like a re-run of the previous day?

    It was different when the blog started. I used this blog as a way to process my thoughts and feelings about my son’s diagnosis when every day brought new challenges, or when I was reacting to a new obstacle or achievement. It felt like every day there was something to write about, then it was every week, then every month. And now, I’m writing about how there isn’t much to write about.

    As I pondered that thought about the blog, though, the act of writing down my thoughts changed to thinking about the future of my son and our family. So much of the last few years have been reactionary, but now we’re trying to shift our gaze from looking backwards to looking forward. From being reactive to being proactive.

    Where do we go from here? Forward. Where we go from here is to experience what is ahead of us. Where we go from here is unwritten and unknown, but it is also something we can influence and contains the potential that we can work towards. And maybe, there will be something to write about.

    I don’t plan on shutting the blog down, but posts may not be as frequent as we step into the future. But I hope you’ll check in. I hope you’ll be in touch, whether its leaving a comment or sending me an e-mail. And I hope, wherever you are in your journey, that when you find your normal, you can be grateful for the progress, make the most out of every single moment in the present, and be hopeful and intentional about the future.

  • Walls and Doors

    Walls and Doors

    A few weeks ago, we attended the yearly fundraising event for my son’s school. The event was an opportunity to interact with other parents, teachers, faculty, and board members and to collectively celebrate that a place exists for kids like my son.

    This year, the guest speaker was a Hollywood movie producer who attended the same school when he was my son’s age. The producer accepted the school’s Achievement Award and gave an emotional speech about how much the school helped him learn and grow and how it changed how he felt about himself and his outlook on the future.

    Earlier in the day, he spent time with the kids, including my son. The kids worked together to create movie pitches and presented them to the producer. My son came home beaming, feeling proud of himself for his accomplishment, and also because the producer gave my son the inside scoop that there would be another Captain America movie.

    We didn’t learn all the details until we spoke with one of my son’s teachers at the fundraising event. He often has a hard time remembering and sharing details, but his teacher was so proud of him, and we were equally proud and grateful that the producer had spent time with the children.

    In his speech, the producer talked about his experience with the kids. He said it reminded him of what it was like to find a place like this school after struggling for so long in other schools. He looked at the faces of the kids and wanted to inspire them and show them that, even though they have challenges, with a loving family and by the right support, anything was possible.

    When he said that, I felt a light come on.

    I think a lot about my son’s future. I wonder what he will be capable of, and what options will be available to him. Often, those thoughts are about the things he won’t be able to do because I see how much he struggles today. But I think a part of that is because we traveled so much in the unknown, without the type of support that schools like this provide. Based on our experience, the unknown is dark and scary, and we spent so many years navigating potential futures in that dark, feeling around for a way out.

    When it’s that dark, everything feels like a wall.

    But that moment in the producer’s speech when the light came on made me think about how much our life has changed in the last few years. Our new home in our new town, my son’s new friends, and my son’s new school have all changed his life. They’ve changed our life. The school, in particular, has given him a sense of belonging in a safe space and the tools he needs to learn. He is surrounded by other kids like him. He is being taught in a way that works for him. And now, he’s seeing examples of what other kids like him have done.

    The school has provided light in the dark, and, for the first time, we can see a little further ahead.

    It’s because of that light that, for the first time, we can see that we’re not just surrounded by walls. We can see doors, too.

  • The Right Path

    The Right Path

    I spend a lot of time wondering how I am doing as a parent. I often feel like I’m focused on correcting and not always celebrating behavior. Rather than settling into a positive, I stay on guard and wait for the next negative. When I focus on the negative, it often becomes the only thing I see. But every once in a while, my son will do something that gives me enough pause to reflect on where he is and where I am as a parent, and it makes me feel like I’m doing okay.

    For the past few months, my son has been obsessed with AirPods. My wife and I both have a pair, but my son had been using his tired over-the-ear headphones. We eventually got him an inexpensive knock-off set of earbuds to try out. They were red and came in a case that lit up, and he liked them, joining the “What?” crowd that comes from talking to someone who has earbuds in their ears that you can’t see. As much as he liked them, he still had aspirations of getting a set of authentic AirPods.

    A few weeks ago, my wife and son met up with my son’s friend from school and his family at one of those arcades that also has laser tag and go-karts. Another thing the arcade had mixed among the video games was claw machines.

    We love claw machines. There’s a hotel we stay at in the mountains that has a small arcade in the basement, and we’ve spent more time and money on those claw machines than the other games in the arcade. There was a claw machine at the Walmart near my parents’ house in Florida that we would hit regularly. Basically, if we are anywhere with a claw machine, we’ll play it.

    My wife is the Queen of the Claw Machines. I’m pretty sure she is the one that got us hooked. If there was such a thing as a professional claw machine player, my wife could go pro. She also has a natural feel for it. Me, I have to look at the machine from different angles to line up my approach. Sometimes I’ll do the same for my son. I try to get the claw in the correct position, checking from the top and both sides, before giving him the nod. We’ll watch the claw slowly lower and grab our target and hopefully carry it over the prize chute.

    At the arcade with his friend, my son played the role of a spotter. From the side of the machine, he called out instructions while his friend commanded the control stick to navigate the claw over the prize. Once it was lined up, his friend pushed the button to release the claw. They watched as the claw lowered and came to a rest before lifting upward. The moment of truth with a claw machine is on the rise, seeing if the claws can wrap themselves around the prize.

    They did.

    The next test is whether the claws have a firm enough grip to withstand the shaking when they reach the top and then jerkily slide over the chute. Between the shaking and the elevated chute designed to knock the prize out of the claw, even second of that journey is tense and often leads to heartache.

    The boys watched as the prize made it safely through each obstacle and came to a stop over the chute. The claws loosened and released their grib on the small white box. Excitedly, my son’s friend reached his hand into the collection box and pulled out a new set of AirPods.

    The details of what transpired next are fuzzy, but my son’s friend said he would give the AirPods to my son. It was such a sweet gesture, but I’m sure he really wanted them, too. My wife stepped in and said that because it was his friend at the controls, he should be the one to keep them. I’m sure my son was disappointed, but he didn’t pout or argue or throw a fit. After all that time wanting those AirPods, he was just happy for his friend.

    I wasn’t there, but my wife and son relayed the story to me that night. I suspect there was still a tinge of disappointment inside, but my son was still happy for his friend and proud of his role in winning the AirPods. When it was time to get ready for bed, he popped in his red knock-off earbuds and pulled up Spotify. I could hear him singing as he brushed his teeth, the pitch of his voice muffled as the toothbrush changed the shape of his mouth.

    As much as I want him to have everything, it’s these moments of unguided generosity and empathy and friendship that reveal the kind of child that we are raising. I sat with that feeling as long as I could, alongside my wife, who was equally as proud of him as I was.

    We never know how things are going to turn out, the only thing we have is now. And, in that moment, it felt like we were doing okay.

    When we went upstairs, he way lying in his bed. I said something to him that he didn’t hear, and he pulled out one of his earbuds.

    “What?” he asked with a smile.