Dave, Author at Epilepsy Dad

Unnatural Times

Every morning, I like to sit near the window of our condo and look out on to the streets of Philadelphia. I watch as the empty sidewalks start to fill with people. The roads fill up with cars. Food carts appear on street corners. Lights turn on in the office buildings. Mornings are when the city wakes up.

Usually, on weekends, the process is a bit slower. It takes longer for the sidewalks and the street to fill. But eventually, they do, and the city finally comes to life. Not lately, though. There aren’t as many people. There are fewer cars. And not as many lights in the office buildings are turning on. Now when I look out the window, the city hasn’t been waking up. It’s a perpetual Sunday morning that lasts all day, every day.

Being stuck inside the house is unnatural. We aren’t used to the confinement. We are social creatures and miss those connections and contact with the outside world. Our bodies and our minds start to panic, which is only exacerbated by the fear and uncertainty of the spreading virus. It’s unnatural, but, for me, it also feels familiar.

A few years ago, my son was in a bad state. He was still seizing a lot, and the angry side effects of the medicine he was on came out as rage. He was isolated at home without social contact; no school, no friends, no playdates. My wife stayed home with him, equally isolated. A similar fear and uncertainty blanketed our lives, not knowing how long these conditions would last or, worse, whether they would ever change. Maybe that was going to be our life now, forever.

We couldn’t plan anything. We couldn’t really go anywhere. So we lived in a dark apartment, watching the city through our front window, hoping for something to change. That lasted for more than a year. Eventually, we found better medication and a nanny to help. We got therapy and found our way back to each other. But it was an agonizing and traumatic time, and our current isolation is triggering those painful memories.

Before “social distancing”, things had been better. My son was going to school for half days, but every day this year, which he couldn’t do before. He made a few real friends. We were looking forward to baseball season, bike rides, and summer. But now we find ourselves, along with the rest of the world, wondering what comes next.

It feels like another test of our strength and capacity to adapt to another “new normal.” Fortunately, we’re starting from a better place. My son is doing better. Our family is stronger. And we know that because we made it to the other side of those dark days years ago that we can make it through these challenges, too.

These are unnatural times. But as parents of children with epilepsy, we are no strangers to unnatural times. Hang in there. Remember to be kind to each other. Remember to make room for yourself. And we will make it through together.

Practicing Life

A few months ago, we went to a water park resort for my son’s birthday.

I like water parks as much as I like dysentery (they’re basically the same thing). But it wasn’t my birthday, and the destination was an impromptu backup after the initial birthday plans had to be scrapped.

My son was understandably excited, so after we dropped off our luggage, we changed into our swimsuits and headed to the slides. The resort was massive. We navigated through the restaurants and arcade until we found the doors to the oversized Petri dish. I grabbed us a stack of towels, took a deep breath, and stepped through.

The park itself was a feat of engineering. Huge slides and pools were efficiently organized to take advantage of every inch of space. The concrete and florescent lights were clear indicators that nothing about this place was natural, but the deep scent of chlorine was very reassuring.

I surveyed the crowd, wondering which one of them was Patient Zero for the impending outbreak. I eyed the teenage staff skeptically, wondering if these were the people with whom I entrust my safety and the safety of my family. But then I saw my son’s face and his smile and I smiled back and got in line with him.

We rode a few slides that, I admit, were fun. Obviously, I had my eyes and mouth closed as tightly as a vault but, for a few minutes, I forgot how my son always winds up drinking the water in the pool and was able to enjoy myself.

From one of the slides, we caught a glimpse of an obstacle course that my son wanted to try, so we walked over and he got in line.

While we waited, I watched the other kids, mostly older, take their turns. The course was a series of platforms tethered to the bottom of the pool. They drifted further apart of closer together depending on the momentum generated by the person on them. Older kids had an easier time to reach the next platform because of their height, but then they would slide off the wet surface into the pool to the delight of their friends.

A few positions ahead of my son was a little girl, maybe four or five years old. She was much shorter than the other kids, which was more noticeable as her mother brought her up to the starting line. I watched as her mother gave her some words of encouragement then slowly backed away.

In my head, I was thinking that the mother should be closer. She was going to need to help her daughter navigate the course. She would have to hold her hand and encourage her, make her feel safe, and help her along. But then the little girl bent her knees and jumped.

She barely made it to the first platform but had enough contact with the surface that she was able to pull herself up. As she eyed the next platform, her mother smiled and the rest of the audience started to pay attention. From platform to platform, she unorthodoxly jumped and made her way across the course. At every pedestal, she’d slide partially off but manage to hold on and pull herself back up. Every time, the audience cheered.

All the while, her mother stood a few feet away. It was only as the girl reached the end of the course that her mother went over to her and celebrated with her. They held hands as they walked off together, celebrating victory.

The thing that struck me most about that situation was the mother, and how she kept her distance to let her daughter try the course by herself. It made me think about all the times I don’t do that for my son. I often feel like I am the “helicopter dad”, hovering no more than a few feet away. If I’m not doing something for him, I’m telling him how to do it so that he doesn’t make a mistake or feel embarrassed for being wrong when he raises his hand to a question he can’t answer. Instead of letting him be brave and celebrating that bravery, I keep him from figuring it out by himself.

I want to make his life easier because so many things are so hard. I want to do everything for him. I tell myself that it’s a matter of safety, or because he needs the extra help because of seizures or medications or exhaustion. But much like how training wheels prevent kids from practicing balance, one of the most important skills for riding a bike, I’m preventing him from practicing life.

I grew up (and still am, to a large extent) afraid of making mistakes. Afraid of trying new things. Afraid of what other people will say. Afraid of putting myself out there. My worst fear is passing those fears on to my son. But somehow, in spite of my best intentions, he continues to be brave. He continues to raise his hand before he knows the question. He still tackles challenges that are much bigger than him. And he still gets himself to the edge and isn’t afraid to jump.

It’s not easy, but I am learning to stand behind him instead of above him. I’d rather catch him if he falls instead of doing everything for him. I’d rather celebrate his victories and failures instead of keeping him from owning either. And I’d rather him practice life while I am here so that I can help him if he needs it, but so I can also watch him learn to balance on his own.

A Year With The VNS

Last December marked the one-year anniversary of my son’s VNS surgery.

Leading up to the surgery, I was a wreck. The week before, I had to give a preview of a presentation to one of our executives. I was not present and I stumbled through, relying heavily on the notes that I threw together on a handful of index cards. A few weeks later, my boss commented that she noticed how off I was. “You’re normally so put together. I don’t know what happened.” I did, I thought. My son was about to have surgery.

As I wrote about when we were contemplating the VNS, there is something about a surgery that is so daunting. With medications or the ketogenic diet, we can stop them if they aren’t working and the side effects eventually go away. But you can’t “uncut” my child. Once the scalpel breaks the skin, that’s it. It’s done. Even if the VNS is turned off or if the leads are removed, there is no going back. That thought weighed heavily on my mind right up to when they wheeled him back to the operating room.

Thankfully, we are near one of the best children’s hospitals in the country, and the surgery went smoothly. The device was turned on a few weeks later, and the waiting game began.

For the first six months, I didn’t expect much of anything to happen, which was great because not much of anything happened. Except for the vibration in his voice from the tingle of the VNS and the two visible scars, there was no change. We didn’t see any reduction in seizures, even as the doctors adjusted the intensity and frequency of the pulses.

At nine months, there was more of the same. His vocal cords seemed to adjust and his vibrato was less pronounced, but I could still hear it. Again, though, there was no seizure reduction.

A year after his VNS surgery, I would love to write that it took a year for the VNS to really start helping my son. I would love to write that he is seizure-free and that we were able to wean him off the ketogenic diet or remove a few pills from the handfuls of pills he takes every day. I would love to write that I sleep any better knowing that the VNS will protect my son from a catastrophic seizure and that I sleep much better at night.

But I can’t.

The obvious question is, knowing what I know now, would I have still gone through with the surgery?

The short answer is yes. The VNS helps a lot of people. At the time, we didn’t know whether it would work and I was and still am willing to try anything to reduce or prevent my son’s seizures. I’m disappointed that it didn’t do more for him, but it was worth trying.

Maybe someday it will help. Maybe it is already helping with seizures that we can’t see, or maybe it will someday prevent a really bad seizure.