life Archives - Page 9 of 10

The World Outside

I’m lying in bed next to my son who I haven’t seen all week. With my right hand on my laptop, I reach my left hand over and rest it on his back, making sure he is still there. I can feel his breathing, my hand rising and falling with each of his breaths.

On the other side of him is my wife, who I was also missing. The last few weeks have been a whirlwind. A new job. A new house. A new school year for my son. A new medication for his seizures. A new outlook. A new focus.

With so many changes going on, I’d been so consumed with my life that I hadn’t looked up to see the world outside. When I finally did, I wished I hadn’t. The world kept turning. Things kept happening. Hurricanes, mass shootings, fear, and hatred. Human beings being cruel to each other and using their power to silence their victims. It seemed that the world had been uglier than usual in the time that I’ve been away. I felt both selfish and grateful to be away from it. To not experience it. To not get involved. To focus on my life and to shut out the world.

But that couldn’t last. The world seeped in, overflowing an already stressed situation. The combined strain tested the strength of that connection to my anchor. Our stressful lives during a chaotic time in an especially cruel world. Survival became about pursuing the path of least resistance. It was easier to hide from the world than it was to be a part of it. It was easier to not write than it was to write. It was easier to use the excuse of being too busy in life to avoid being a real part of it.

I pushed myself away from the world but I had nowhere to go. My family is my anchor, and I was thousands of miles away in every meaning of that phrase. A cross-country trip that followed added physical distance to the emotional. But on the plane ride back, I could feel the weight of the last few weeks lifting. The world in conflict sped below me as I looked out the window from a familiar, distant perspective. But it wasn’t the world I was eager to get back to. It was my family that was pulling me back, and I couldn’t get to them fast enough.

And so here I am, restlessly lying in bed next to my family in our new home. My obligations to our new life and the workday ahead steal my focus. But my son’s breath serves as a metronome that brings my attention back to this room. The cadence of his breathing and the rising and falling of my hand on his chest connect me to him. I find my wife’s hand in the same place, so we’re all connected together once again. The world outside and my insecurity conspire to keep the attention of my head and my heart. In this moment, though, I know that it will be my family that gets me through.

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.