Riding The Roller Coaster

I have always loved roller coasters. My first roller coaster was the Cyclone at Riverside Park in Massachusetts. I used to go there every year as part of my elementary school’s summer field trip, and the Cyclone was usually the first and last ride of the day, no matter how long the line was. The Cyclone was an old, wooden coaster that was extremely loud and vibrated like a rocket as the wheels traveled along the metal track. It vibrated so much that it left my feet numb by the end of the ride.  I didn’t care. For a few seconds in the middle of the ride, as the cars sped over a small incline, I was weightless, floating above my seat like an astronaut in space. It was wonderful.

Ever since the Cyclone, I’ve sought out roller coasters at every park I’ve been to. My wife (reluctantly) indulges me in my pursuit and joins me even when her internal voice tells her to feign a sudden case of “whatever will keep me from that ride.” My son has the bug, too, and, after years of falling short (literally) at the measuring stick at the entrance, he was finally able to ride his first “big boy” roller coaster this spring.

epilepsy dad waiting for roller coaster epilepsy

Full disclosure, that first ride was less than ideal. After an unexpected boost of speed right out of the gate, my son’s face smashed into the safety harness. When he stepped off the ride, blood was streaming down his face. I took him to the bathroom where he proceeded to pull out one of his front teeth. He lost the second one later that day. The Tooth Fairy came that night, but I’m still waiting on my “Parent Of The Year” plaque.

epilepsy dad roller coaster lost tooth

Being the tough kid that he is, a little blood and a new bite pattern didn’t stop him from tackling another roller coaster later that day. It didn’t surprise me, though. My son is pretty fearless, and he’s been on his own roller coaster these past few years.

Roller coasters are fun because they eventually end. The safety harnesses provide the illusion of danger and the thrill of the speed, bottomless drops, and corkscrew turns only lasts for so long before the cars pull back onto the loading platform and the riders are allowed to exit to the left. My son’s roller coaster is way less fun. The safety harnesses are rusty, we can’t see the track in front of us, and it doesn’t stop at the terminal to let us off.

The first four years of his life were like the beginning of the roller coaster when the cars slowly leave the boarding area and are slowly pulled towards the sky. The passengers laugh with nervous excitement as the cars tick-tick-tick their way to the apex. The ride is just starting and the anticipation continues to build, fueled by endless possibilities and carefree exploration of a limitless world.

Finally, the clacking stops and there is a brief silence as the cars are released. The potential that is stored in the cars at that height is about to be realized. Everything that has been built up comes into view as the cars tip forward and what comes next rises into view.

The big plunge. The first drop. It’s usually the scariest and the fastest. It’s the event that builds the momentum for the rest of the ride. If you’re ready for it, it can be an exhilarating, white-knuckles-holding-on-to-the-bar-for-dear-life-and-laughing-hysterically experience. If you’re not ready for it, it’s terrifying and you feel out of control. The seizure, the ambulance, and the realization that our lives had changed happened at a million miles an hour. There was no preparing for a drop from that height. It turned my stomach inside out. I was afraid and overwhelmed by a sense of panic. I wanted to get my family off the ride but there was no way to stop it.

What has followed has been a series of hills where everything seems to slow down and where we start to catch our breath before another drop where the air is ripped from our lungs as we plunge faster and further down the track. Every medicine that seems to start working gives us hope before, more likely than not, the seizures come back and we are again in a freefall. The ketogenic diet that has worked miracles for some children only slowed our ride but it wasn’t enough to stop it. And so we continue rising and falling along the track, racing through every peak and valley, we are slowly giving up on the idea that we’re ever going to get off the ride and simply, desperately trying to figure out how to keep the cars on the track and weather this turbulent, unfair, and unforgiving ride together.

epilepsy dad family together

 

Livin’ La Vida Normal

Tonight we did something that we haven’t done in a while. We went out with friends.

epilepsy normal life We’ve been in this city for eight months. Two of them we spent in the hospital, most of them we’ve spent trying to find the balance between giving our son a normal life while constantly worrying about his seizures and his epilepsy. He hasn’t been able to return to school for more than a few hours a few times a week, if that, between his fatigue, his therapies, and his behavior. The poor kid is lonely. His only playmates are his parents and the nurses, therapists, and doctors at the children’s hospital. Even tonight, strolling along the street, we ran in to one of the nurses from the hospital who recognized us and came over to say hello. And I’m grateful for that. I’m grateful that they care so much, I’m grateful that he’s left an impression on them. But for once, I’d like him to run in to a classmate, or a friend.

Tonight, though, we had a bit of normal. The one day this week our son went to school, he ran in to his one friend that he’s had a playdate with since we moved here, and his friend’s parents invited us to go with them to the Night Market, a street food festival in Philadelphia.

philadelphia street night market festivalThe streets were packed with people, but our son and his friend stayed together, and played, and we talked and had a wonderful time with his parents. We walked through the mob, inspecting the trucks and grabbing a beverage and some dinner. Our son, of course, couldn’t have anything because of the ketogenic diet, but he didn’t care. He was out, running in the streets, right alongside his friend,  because that’s what normal kids do, and tonight he was a normal kid. And tonight, we were normal parents, doing what normal parents do, too.

 

A New Normal

The idea of normal for me six months ago feels very different from it does today.

Six months ago, none of this was happening. We were an ordinary family with an exceptional boy growing up in a normal way without seizures, without medicine, and without a diagnosis.

Then the seizures came, and our normal changed. Normal was daily medication. Normal was carrying a rescue medicine with us where we went. Normal was explaining to caregivers and teachers what to do in case of a seizure when we barely knew ourselves.

That was our normal for awhile. But then the seizures changed, and the medicine he was on also needed to change. Only, that medicine didn’t work, so our normal became more seizures, and hospital stays, and testing, and a search for answers.

normal epilepsy lifestyle

This last hospital stay, a bad reaction to one of the medicines caused something called ataxia, which means our son basically lost control of his body. Thankfully, when they stopped the medicine and he is slowly gaining back control of his body and his mind, but we’re left to wonder how fully he will recover

Six months ago our normal was talking about how our son would be a hockey player when he grew up. Now we’re just hoping we can regain what was lost, and hopefully figure out a cause, or a treatment, or preferably both.

We’re still in a place where we don’t know what our new normal is going to be. But whatever the future holds, there is one thing that will always be part of our normal, and that is making our son feel exception.

Because he is.