life Archives - Page 6 of 7

Early Mornings And Coffee Spoons

It’s still dark outside, but I’m at my usual station, too early in the morning, writing. My son had a short seizure that woke me up. My wheels started turning and I couldn’t turn them off. The upside of him sleeping in our bed is that I don’t have to lose sleep wondering if the monitor is working. The downside is that his seizures are right in front of me, and its impossible to go back to sleep once they are over.

At some point, he isn’t going to be able to sleep with us. He’ll be too old and too big to fit in our bed. If there were ever a reason to wish him to remain seven forever, that might be near the top of my list. Coming in a close second is the fear that his condition is going to get worse as he gets older. Our doctor is concerned about what happens at puberty. It’s another stage of brain development where seizures can change or be more severe. I thought it was impossible for things to get worse. Apparently, they can.

Today, he’s only had epilepsy for a fraction of his existence, but by then, he’ll have had epilepsy for most of his life. We’ll long have lost count of seizures, and meds, and have long forgotten about the time before this began. It will be all we know and all he can remember.

This is what happens to my unrested brain so early in the morning. It gets pulled into the stream and dragged wherever the current takes it, and there is no safe shore for my thoughts to land. The present is filled with seizures, medicine, side effects, and, presently, a lack of sleep. The future has too much uncertainty, doubt, and fear. The past is too painful. Remembering a time without epilepsy is getting harder and, if I try, it makes me sad. What we saw for our lives back then was not this life.

My coffee sitting on the window sill does little to pull my unrested brain back to happier thoughts. But as I stare out onto the dark street, I can at least resist the urge to measure our lives with coffee spoons, in careful doses or as an observer. There is so much left to our journey, so much active living to do and so much of it is unknown that dwelling in any one place is fruitless toil.

Instead of focusing on a when, I try to focus on my what. My what is my family that is together and, in many ways, stronger than ever. Most days are hard, but there is always something to be grateful for. We have a nightly routine where we call out something that we’re grateful for from our day. Even if we skip the rest of our routine, that one gets done. Because those things for which I am grateful are worth measuring, and I want to focus on adding as many of them as I can to this life.

On that note, I’m going to sneak back into bed and lay next to my family. I’m going to do everything that I can to settle my mind and be present in that feeling of being together.

And, maybe, I’ll actually sleep.

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.

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.

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.

Livin’ La Vida Normal

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

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.

The 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.