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.
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.
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.
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.
My son thinks he can do anything. It’s one of his best qualities. He’ll say “yes” to everything with complete confidence that he can do it. However, it’s one of his biggest challenges because there is often a disconnect between what is possible and what is required to accomplish the goal.
It’s one of my biggest challenges, too. When my son says he wants to do something or can do something, my reaction is to sometimes question his ability to dissuade him from wanting to do it or believing that he can.
I think I’m doing it to protect him. I don’t want him to be disappointed when he can’t do something. I don’t want him to disappoint other people who might depend on his ability to do something. I don’t want him to feel like a failure, so I convince him that he can’t do something so that he doesn’t try.
Baseball started again and, at his age level, my son is surrounded by kids who are more athletic, more experienced, and more skilled than him. They already know the intricacies of each position, how and where to move in most situations. While there are a few more dropped balls, errant throws, and wild pitches, it’s like watching a scaled down version of a professional game. The pitches are getting faster, the balls are getting his harder, and the level of competition is higher.
The start of the season was rough. We hadn’t practiced much in the off-season, so it was as if my son had to learn the basics again, while most of the team looked like they never stopped playing. My heart would sink every time my son missed an easy catch or fumbled a ground ball. I felt anxious every time he was on base, worried that he wouldn’t understand his coach’s instructions or be fast enough to get back to the base if the pitcher tried to pick him off.
Despite those mishaps, he showed up every game. He did his best and had great moments of big hits and dramatic defensive plays. His coaches and his teammates were supportive and celebrated his successes, and, above all, he felt like he was part of the team. He was so much a part of the team that, when his coach was talking about giving the players chances at different positions, my son said he wanted to pitch.
My first thought was to talk him out of it. The pitchers at this level were already throwing a variety of pitches. They were shaking off signs from their catcher, giving looks to keep runners close to the bases, and occasionally trying to pick them off. They changed the speed of their windup and delivery to confuse the batters. Imagine a professional pitcher, only shorter. My son does not fit that description.
Instead, I told him if he wanted to pitch, he would have to practice with me every day. The next day, the first thing my son said to me after work was to ask me to go outside and practice. That first time, we measured out the 60′ 6″ distance from the mound to the plate, and it seemed impossibly far.
We started with warmups to get his arm loose, mixing in a few grounders and popups. When he was ready, we pretended it was the bottom of the 9th inning, and his team was leading, and he had to get three outs to win the game.
He stepped onto the makeshift pitcher’s mound, and I squatted at the plate. He went through the motion of his windup, let the pitch fly, and I watched it sail over my head. Our make-believe team lost that first game as he walked batter after batter, but mixed in with the wild pitches were a few perfect strikes.
By the third day, he was throwing more strikes, and rather than losing, we tied and had a wiffle ball home run derby to settle the score (he won). On the fourth day, he walked only two batters before he got the third out. He threw so few pitches that we had to change the story of our game to start in an earlier inning to give him more pitches to throw.
My son talks about those backyard simulations as if they were actual games, causing a few confused looks from his team when he doesn’t give them the context. But the smile on his face after striking out an imaginary opponent filled my heart with joy.
I promised my son that I would reach out to his coach to let him know that we were practicing pitching. But as much as he had improved in the backyard, my fears and concern crept back into my mind. What if he couldn’t deliver in a real game? What if the other kids made fun of him? What if that ruined the joy of the game for him?
Each day I would think about contacting his coach, and each day I would convince myself not to send the message. But it felt wrong, not only not honoring the promise I made to my son, but because I knew these were my obstacles, not his, that were preventing me from taking the next step. I had to trust that the coach would make the right decision and would be able to navigate the situation in a way that wouldn’t catastrophize the situation and hurt my son’s heart.
I typed out the message, trying not to lower the bar too much. I said that my son has been practicing his pitching every day, and if there were an opportunity in practice or an upcoming game, he would like to give it a shot. “Ok” was the only response.
A few days later, at our next game, we were short a few kids, and the score matched our player deficit. I’m not sure who initiated it, but toward the end of the game, my son came over to tell me that he was going to pitch. I smiled and said, “Awesome!” but inside, I could feel my body tense up—the moment of truth.
I watched as he warmed up with another player and was pleasantly surprised that he reliably got most of his pitches to the catcher. With only a few innings left, the coach told me that unless we scored a bunch of runs before the last inning, my son would go in. We did not score those runs, and I watched in slow motion as my son stepped through the gate to the field and took the mound.
I had one of those moments where I wondered whether my presence was helping or hurting. He would look at me after every pitch, but I couldn’t tell if he was looking for my approval, guidance, encouragement, or support. But he was on the mound. He was pitching. And, while there were more than a few pitches that got past the catcher, there were just as many that sailed over the plate.
His pitches weren’t fast, so there were a few big hits. He walked a few batters. But he kept stepping back on the mound. His teammates fielded a grounder and got the first out. My son snagged a scorcher right back to him as casually as I’ve ever seen him field a ball and made the throw to first for the second out. And then, after being up 1-2 on the pitch count, the last batter hit a soft grounder to first for the final out. My son had pitched a complete inning.
“Awesome,” I said again, and I met him on the field. It was awesome, in the literal sense of the word. I was in awe of his dedication to his goal, his bravery in stepping into the unknown, and his willingness to have doing his best be enough.
