Tag: epilepsy

Scars and Survival

Last summer, I was at the pool with my son.

It wasn’t that long ago that he needed to stand on his tiptoes to keep his head above the water. Now, standing over six feet tall (the tallest in our family, as he likes to tell everyone), only his waist is submerged. His skinny torso sticks up like a twig in a pond.

His body carries many markers from his life. There are scars from his adventures and falls. There are stretch marks on his lower back from his growth spurt. And there are remnants from the incisions on his chest and neck from his surgeries that implanted the two devices and the leads to his brain.

It’s hard not to notice, prominently pushing against the skin on his chest, the two implants. Against that skinny frame, with no fat or muscle to buffer them, the devices look huge. They are a permanent alteration to the contours of his body, captured on his chest like a relief map, describing the differences in elevation and the way the land rises and falls. And similar to the permanence of mountains in our lifetime, they will remain a defining part of his body’s landscape.

Of all the recorded history on his body, the implants are the hardest for me to see. The scars, even those from his surgeries, can be rationalized away as everyday occurrences of a growing child. I’ve had a scar above my eye since I was five, when I chased my sister under a glass table and forgot to duck. I’ve had a scar under my chin from when I was ten and tried to jump over a softball on my bike. And I have scars on my hands and arms from the countless times that I clumsily pulled something from the oven without protection and burned myself.

But the implants can’t be explained away as normal consequences of living. They are more than just damaged or healing skin and tissue. They are unnatural, and there is no alternative explanation to the reality that they are devices inserted into his young body to help reduce his seizures. They are visible reminders of his challenges—challenges, like the devices themselves, that he will likely carry for the rest of his life.

Seeing them, it’s easy to fixate on the implications and miss out on the significance of the moments that they enable. He’s alive. He’s having fewer seizures and has stopped a few medications. He and I were in a pool playing basketball, spending time together, and laughing. The reason he has the devices may be overwhelming, but the life they allow him to live is a medical miracle.

I still see the devices when I look at him, but I’m learning to see them differently. They don’t just mark his struggle—they also mark his survival. They are symbols of how far medicine has come, of how far he has come, and of the moments we still get to share.

Ballpark Memories

Growing up, I didn’t spend much time with my biological father. My parents divorced when I was two, and my mother had custody of my sister and me.

Our father would pick us up for holidays, or to swim in our grandparents’ pool on those hot New England summer days. We would occasionally visit his mother in New Hampshire. But my favorite visits were the ones when he would take us to New York to see the Yankees.

A few weeks ago, a friend gifted my son and me tickets to see the Philadelphia Phillies. It was our first game this season, and I’m glad we got at least one in before the season ended.

Since it was just the two of us, it reminded me of the Yankee games with my father. I remember going to the games early and watching the players warm up. I remember running down to the first row next to the field, getting a closer look at them, and catching a ball tossed into the stands as they left the field. But even though I know he was there, I don’t remember my father at those games.

I don’t remember having meaningful father-son conversations. I don’t remember even talking about the game. I don’t remember us joking or celebrating the wins and the dramatic plays, or sharing the misery and disappointment of a defeat. It wasn’t a shared experience.

As I sat there with my son, I wondered how he would look back on this time with me. Will he remember how we bring our gloves to every game in case of a fly ball? Will he remember how I act surprised every time he eats an inhuman amount of hot dogs or a whole pizza? Will he remember how we call out to our favorite players, and will he see me on the other side of the high fives after a big play?

I am not trying to rewrite the past, but I can shape the present. My father’s absence taught me how important it is to be fully present when we are together. Not just sitting in the seat next to my son, but sharing in the joy, the laughter, and the heartbreak that come with the game.

I don’t just want him to remember going to games.

I want him to remember that we went together.

The Cleverness of Me

“Oh, the cleverness of me.” (Peter Pan, Barrie 1911)

In Peter Pan, after teaching Wendy and her brothers how to fly, Peter proudly declares, “Oh, the cleverness of me.” It’s a line that sparkles with the joy of discovery but also reveals the limits of his childlike perspective. Peter delights in his own ingenuity, yet he lacks the maturity to see the risks or responsibilities that come with it. That mix of brilliance and blindness captures both the wonder and the danger of living only in the moment.

I am constantly amazed by my son’s ability to devise clever creations. He often comes up with inventive workarounds to the challenges he faces, ideas that make me marvel at the way his brain works.

He made a custom case for his phone using cardstock and markers. He created a marble run by tracing pieces of track on paper and taping them together. He taped a “lock” on his door so that he could use the key that Santa gave him. And he finds clever ways to win the games of skill at the arcade.

But like Peter, he doesn’t always have the executive processing or life experience to recognize when those solutions carry risks or could be dangerous. He figured out how to use my wife’s devices to disable the screen time and parental controls on his devices. He installed different browsers on his computer when he was blocked from visiting inappropriate websites. And he finds interesting places to hide the evidence from a candy binge.

Eventually, though, he gets discovered and we have teachable moments as I expand the ways I need to monitor his behavior as he expands his bag of tricks. In these instances, his behavior is generally age-appropriate, although the technology makes it easier for him to have access to inappropriate content.

But it also makes it easier for him to find himself in dangerous situations. The websites he visits are also full of predators and scammers looking for teenagers to manipulate and extort, and the reality is that my son is more susceptible than a typical teenager. His emotional immaturity and challenges with executive functioning often prevent him from fully understanding the dangers associated with using his cleverness to bypass the safety measures that we put in place.

It’s a reminder of how thin the line can be between brilliance and vulnerability, and how much he still needs us to guide him.

However, I struggle with striking a balance between celebrating his cleverness and protecting him from dangerous things, and celebrating creativity when he lacks the maturity to recognize its limits. Most of the time, I lean too heavily on protectionism, and it feels as if I am constantly criticizing him or pointing out the flaws in his creativity. I tell him how his idea won’t work, or how to make it better. I don’t spend enough time encouraging him to experiment with his ideas and continue trying to figure things out.

He will need that cleverness to adapt to a world that wasn’t built for him. He will need that ingenuity to navigate challenges that most people will never have to face. My job isn’t to stifle it in the name of safety but to help him learn how to use it wisely, to guide him as he figures out when to leap and when to look first. It’s not easy to let go of protectionism, but I know that if I can nurture his creativity instead of only policing it, that cleverness—the same spark that sometimes gets him in trouble—might one day be the thing that helps him fly.