epilepsy dad

  • Avoiding Reality

    Avoiding Reality

    A while ago, I went with my parents to an appointment with an estate planning attorney. We’ve been pushing them to get a new will and legal documents since they moved to Pennsylvania, but it never seemed to be a priority.

    Over the last year, though, both of my parents have continued to struggle with health issues and it has only gotten worse. While their nest egg wasn’t substantial, they had specific wishes for what to do with their estate and it wasn’t enough to just tell me what they were.

    As I sat in the lawyer’s office and listened to his questions, I thought about our plan. Or rather, our lack of a plan. The extent of our planning is adding beneficiaries to our accounts, which is a) not a plan and b) not enough. If either my wife or I pass away, the other can manage to keep things going. However, the elephant in the room is what happens when both of us are gone and, more importantly, what happens if that happens when my son is young or if he’s not able to be on his own.

    A few years ago, I started to write a post by jotting down what was in my head:

    • I know he is going to get older.
    • I don’t want him to.
    • I want him to stay this age.
    • I want him to be able to stay with us.
    • I want to be able to take care of him.
    • I don’t want him to have to face the world.
    • I don’t want him to have to take care of himself.
    • I don’t want him to have that burden.
    • I don’t want him to fail at it and to have a hard life.
    • I have to set him up to do it himself.
    • I have to put in a safety net.
    • But I’m not going to be here forever.
    • I’d fail him if I pretended he wouldn’t get older, or didn’t do anything because I didn’t think he would get older or because I don’t want him to get older.

    There is a lot to unpack there, but the thoughts and questions I had years ago are still relevant today. Each year, I’ve thought “this is is shaping up to be the year we get things under control.” However, each year ended with the same questions remaining unanswered.

    Who will take care of him if he is still a minor? At one point, we had a plan there, but it’s been too long and so many years that the family who would have taken him is no longer viable.

    How will he make a living? What if he isn’t able to work or generate an income? What if the only money he will have is what we can leave him? I make a good living, but there are a lot of expenses that come with any medical condition, both normal living and trying to have a good life, medical expenses, educational expenses, and other things that chip away at the nest egg.

    Facing these concerns and answering these questions is the only way we can realistically try to secure the future we want for our son. But being realistic means accepting and facing reality, which is not a trait I am always known for, especially when it comes to my son’s future. There is always a reason to put it off. There is always “one more thing” we want to do to get everything in order before we talk to someone. The result is another year without a plan, which is such a disservice to him.

    It’s time to do different.

  • Reacting vs Responding

    Reacting vs Responding

    Growing up in Florida, I played a lot of tennis. Even though I lived near one of the best tennis schools in the country, I never took any lessons. My friends and I would bring our rackets and a can of balls to an open court and play for hours.

    I wasn’t the best player, but I was able to present a good challenge. My untrained backhand had a severe backspin, making it difficult for my opponents to reach. My serve was chaotic but fast, so it was hard to return in the rare instances when it went in. But the main reason why I was a tough opponent was that I was fast and could get to balls anywhere on the court.

    I started playing more tennis when we moved to the suburbs a few years ago. At first, I took a few lessons and clinics, then leaned in and played a few hours a week. I’ve slowly progressed in my technique, but I still have speed. I can still react. But reacting is exhausting.

    Reacting is instinctive. It’s fast. It’s unconscious. Reacting is about survival, but that can get me into trouble. I might keep the match going, only to put myself in a worse position than before. Reacting begets reacting, which, in tennis, means a lot of running around.

    Responding is intentional. It’s slower, but that intention can create more space. Responding keeps the match going and aims to put me in a better position for the next shot. That looking ahead and control is more efficient and effective.

    When our epilepsy journey first began, all we did was react.

    Seizure. React. Status. React. Medications. React. Side effects. React. Ataxia. React. New seizures. React. New medications. React. New side effects. React.

    There was no time to think, no time to plan, no time to be intentional. There was no space. Every time we reacted, we’d hit the ball back over the net only to have our opponent easily smash it back across the court and force us to rush to reach it. Our opponent was trying to win the match, and every desperate reaction we had was to keep our son alive.

    This went on for years until his condition stabilized, and we could finally catch our breath. Initially, the feeling of not having to react was foreign and unsettling. We had been reacting for so long that I had forgotten there was another way, and I had no reference for what that other way looked like when it came to epilepsy and our son.

    After a while, though, we began adjusting to this new way. The ability to introduce intention into our decision-making has given us the space to catch our breath and make choices that move us forward. Rather than sending him to a school that couldn’t accommodate him, we could take the time and find a school that was right for him. Rather than being afraid to schedule activities, we began living our lives.

    That’s not to say that we don’t still react. Epilepsy is a crafty opponent that can catch us off guard and force us to scramble. But reacting is not the only thing we do, which makes a big difference.

  • 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.

  • Farewell, Onfi

    Farewell, Onfi

    Dear Clobazam,

    Well, it’s been a long road, Clobazam. May I call you Onfi? We’ve known each other long enough now that I feel like we can use our informal names. You can call me Dave.

    As I was saying, it’s been a long road. We’ve known each other for more than eight years. Our doctor introduced us when our son was in bad shape. She said although you were relatively new, you had been known to help other children like our son, and, let’s face it, we weren’t in a position to turn away anything that could potentially save him.

    I don’t need to tell you, but the list of side effects with benzodiazepines is intimidating, especially for children. There was also the matter of cost since our insurance didn’t fully cover you. But we were trying to save our son, so we’d pay anything, and we were fortunate to find the National Organization for Rare Disorders that helped us.

    While we were trying to figure out the financials and come to terms with the side effects, we started to see a reduction in seizures. As messy as everything was, that was the light that we followed. As you know, we had tried so many other medications, and they either didn’t help or made things worse or came along with catastrophic side effects like your cousin Klonopin or the nefarious Keppra.

    When we started to see behavior issues after increasing your dose, we feared the worst. What Keppra had done nearly broke us, and it was happening again with you. The thought that the only way to control the seizures was to let the emotional regulation get out of control was a choice I didn’t know that I could make. Fortunately, backing off on how much of you my son used brought him back to us—too much of a good thing, as they say.

    We made a few adjustments over the years regarding how much of you and when my son needed you. Eventually, you were only required at night and became part of our nighttime routine, like tea and bedtime stories. Even though you couldn’t make all his seizures go away, you gave him a chance at a much better, less seizure-filled sleep which also resulted in a better quality of life.

    When our doctor brought up the idea of letting you go, I was nervous and skeptical. It’s not that I forgot the dangers of long-term use, but you were one thing I knew had worked. She said we would take our time to make sure the separation didn’t cause more stress or seizures. It would be a long goodbye.

    About halfway through, we noticed a few changes in our son. The seizures mostly stayed the same, but he was always exhausted and sometimes irritable. We paused the wean for a few weeks until, fortunately, we saw our son stabilize. Even though it turned a ten-week wean into a few months, the extra precaution was warranted, given our track record.

    Once we continued to reduce the dosage, we didn’t stop until it was done. When I filled his medicine containers, I did it for the first time in a long time without adding any of you to the nighttime compartment.

    And here we are. We’re a few weeks past our separation. Our son is doing well. We increased the dosage of a different medicine to help compensate for not being under your…protection? Influence? I don’t know what the right word is.

    We may not need you now, but you will always have been a part of our journey and one reason why our son has made it to where he is today. For that, I am grateful.

    Farewell,

    Dave

  • 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.

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About

I’m Dave. I write about raising a son with refractory epilepsy.
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