Category: lifestyle

Heroes

It was the second game of the baseball finals. My son’s team won the first game and another win would secure them the championship. But the good guys found themselves trailing late in game two. With only an inning to play, the top of the batting order came around. If a rally was going to happen, it needed to happen then.

And it did. A leadoff single, followed by another put runners on base. A strikeout came next laying a thick blanket of tension over the spectators. But our team kept hitting, and a base-clearing triple made the game closer. Another few hits, they had rallied to take a one-run lead. With two outs, the bases were still loaded, and my son stepped up to the plate.

It’s impossible to describe the feelings I had watching him knock the dirt off his cleats with his bat. Being down so late in the game, I had already resigned to a loss. The excitement of coming from behind already had my heart racing. With my son at bat, my heart felt like it was trying to escape from my body.

I watched my son as he stood in the batter’s box and took the first pitch. There are no called strikes off the pitching machine, so he watches the first pitch to get the timing. He looked up at me and gave me a thumbs up.

The next pitch came in. My son took a big cut and fouled the ball back to the backstop. He did the same with the following pitch, so he stood in the box with two strikes, two outs, and the bases loaded.

My heart went from thunderous pounding to absolute silence. I stopped breathing. This is one of those scenarios that I replayed over and over as a kid. Now, my son was living it. The chance to put the game out of reach for good. The chance to be a hero.

I wanted him to get that big hit that I imaged myself getting when I was his age. I wanted him to be hero. I wanted for him to hear everyone cheering his name. I wanted him to come back into the dugout and have his teammates tap him on the helmet in celebration.

I thought about how hard this kid had to work just to be on the field. How he had two seizures earlier that morning. How he put up with the ketogenic diet every day. How he takes a handful of pills every morning and night. How much these games take out of him. How much he gives of himself in these games to contribute, even if that means that is all he can do that day.

I wanted the universe to balance things out.

My son stood in that batter’s box and got himself ready for the next pitch. He went through his setup routine and eyed the pitching machine. With a three-count from the coach, the ball left the machine. I held my breath and watched my son take a big swing over the top of the ball.

The mighty Casey had struck out.

My heart sank as my son walked back to the dugout. I didn’t know what to say to him. I wasn’t sure how he was going to react, so I waited for him to say the first word.

He looked at me and said “I hope I get to hit again. Next time, I’ll get a hit.”

He walked past me and his coaches and teammates tapped him on the helmet and said “nice try”, and “good job”, and “nice swing”. Then the team, my son included, took the field with smiles as they looked to protect their lead.

I walked over to talk to my wife. We both wanted him to get that hit. We felt like the universe hadn’t given us what we needed for things to feel fair. But after I told her what he said, we both fought back tears.

It wasn’t about being the hero or winning a championship. It was about being on the field. It was about being a part of a team. It was about doing the best he could. It was about getting hits and striking out. I had gotten so wrapped up in wanting him to feel like a hero that I almost forgot to be grateful that he was there at all.

There will be plenty of opportunities for him to be a hero on the field. But every day, he teaches me lessons about what is important. He lives fearlessly in spite of his challenges. He lives generously even when things are taken from him. He lives every day pushing through failure and willing to try again. He lives his life with a smile.

For that, he’s my hero every day.

June 20, 2017
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.

June 6, 2017
Leading With Love

Sometimes I look at my son and I see a tall blade of grass, swaying in the breeze. His legs appears rooted on the ground, but his body moves and bends as if it is being pushed by an invisible force. Or a corn stalk that is too thin to support the ear that is is carrying, bobbing in no particular direction but down. It seems an exhausting tasks to constantly keep from falling over.

When he moves, I see a puppet whose strings sometimes get twisted. The extension of his limbs or the gate of his stride are not quite right, and he sometimes tumbles to the ground. We do our best to pull him up and untangle his knotted strings, but each time he falls, my heart aches.

I wonder if, when he does fall, when he’s lying on the ground, if that’s when he feels the most stable. Like in my younger days after I had too much to drink. When I wanted to lay on the bed and prayed for the world to stop spinning around me. My prayers were rarely answered, but at least I felt like there was nowhere further to fall. I could close my eyes and feel the world spread out below me and holding me so that my body could release all its tension. Only, he shouldn’t be old enough to know what that feels like.

When he falls to the ground, I get angy and frustrated and sad. I look at him as that blade of grass, or stalk of corn, or sailor, or puppet. I can’t help myself but wonder if he wants to stay down for an extra second to let his body not worry about balance. But when I do, when he looks at me, I worry that he will see those expressions on my face directed at him. That he’ll think that I am angry and frustrated at him, or that he’ll see me sad and think that it is because of him. It’s a heavy burden to think that you are the cause of such powerful emotions in another person. Of course, he’s not. My anger, my frustration, and my sadness are not because of him, but because of what is happening to him. But what else could he think when I look at him the way I do? He shouldn’t be old enough to know what that feels like, either.

The cruelest thing that epilepsy continues to do is to try to make my son feel less than he is. Less than an amazing boy. Less than the best son. Less than a gift. Less than a miracle. It feels as if it is using me to do its dirty work, to project those feelings on my son through my worry and frustration. I catch myself doing it, but usually after the message has been delivered. It’s a terrible feeling to worry about what your child thinks you think when you look at him. Because regardless of what is visible on the surface, hidden underneath is always love.

I wish my instict was to lead with love. I want so much for that to be what he sees when I’m looking at him instead of the temporary emotions caused by a symptom of his condition. I don’t want him to have to remember that I also love him, I want that to be where he goes first. Because the pain and sadness at what his condition is doing to him is amplified by that love. Because loving him is where I am, first and always.

May 16, 2017
Moving To Australia

Before my son was born, my wife and I talked about moving to Australia. It wasn’t because we were having a terrible, horrible, no good, very bad day. It was because we had been there on our honeymoon and we loved the experience. The idea of packing up and living on the other side of the world seemed like an amazing adventure.

In a way, it’s the same reason we moved to Philadelphia. While it wasn’t on the other side of the world, it might as well have been. Moving from the suburbs to the city. From the Colorado laid-back mentality to the always-moving city. The people and culture are as different as if we had moved to another planet.

At the time, the logistics of moving were easier. I already had a job, so we only needed to pack and find a place to live. Everything else we could figure out as we got more familiar with our surroundings. But we landed in Philadelphia right before my son’s seizures started. After that, the idea of moving became a lot more complicated.

It’s no longer a simple matter of packing up and finding a place to live. “Everywhere” is no longer the list of possible destinations. Our mindset needed to shift from aspirational to practical. The nature and complexity of my son’s condition mandated more specific requirements.

We would have to research the hospitals in the area to get a feel for their ability to support my son. How good is the medical care? Do they have the testing equipment on site, like a video EEG, or would we have to travel to another hospital? How easy is it to get in to see our neurologist?

We also have to do more research on the schools. In the past, we would have asked about class sizes and the quality of the education. Now, we would need to ask more targeted questions. Can they accommodate my son’s special needs? Can he get a one-on-one aide? Is the nurse familiar with seizures and epilepsy? Will the integrate him or isolate him?

Many of the answers to these questions would remove cities from our list of potential new homes. And there are many more questions to ask, each one shortening the list.

In many ways, epilepsy has taken away choices. Where we can live is one area, but there are so many. It also forces restrictions on what job I can take, what activities my son can do, even what he can eat. I assumed that we could build our lives by picking pieces from an unlimited list of options. But instead of the full buffet, we’re limited to the salad bar.

It would be easy to be resentful. It would be easy to see these limitations that epilepsy has imposed on us make and feel like victims. It would be easy to see only loss. Loss of freedom. Loss of choice. Loss of potential. But being where we’ve been, I’m grateful for where we are. I don’t resent what we don’t have or where we can’t go because I know how special what we do have is.

I still like the idea of an adventure. I still think about moving to Australia. Maybe some day, if we can get my son’s epilepsy under control, we’ll be able to move to have that adventure. Until then, we are exactly where we need to be. The dream of living in another part of the world might seem far away. But the reality is that our journey so far has brought us closer together.

May 9, 2017
Balancing Out The Hard Stuff

I followed my son as he ran on to the field at the football stadium. He sprinted down the same tunnel as the players, past the same motivational signs, and on to the same grass. Underneath his coat he wore the team jersey but with their dark green helmet clearly visible on his head. We stood on the field and looked at the 60,000 seats from the same perspective that the players do. The experience was very, very cool.

I was grateful to be standing on the grass with him. I smiled as I watched his face wear a combination of amazement and excitement. This wasn’t an experience that many people get, but it was one of many that my son has had. When he was in the hospital, he met athletes and superheroes. He attended movie premieres and dance recitals in the lobby. He won bingo and has appeared on the hospital’s closed-circuit TV. He was in a fashion show and a music video.

Thinking back on those experiences, I wonder how many of them we would have had if my son hadn’t had epilepsy. Not because they were at the hospital, but because I wouldn’t have taken advantage of them. Or I would have let my wife take him by herself because I wouldn’t have known how special those moments were. I would have missed how brave he was raising his hand to ask the ultimate frisbee team a question. I would have missed how special he felt seeing a movie before any of his friends. I would have missed the look on my son’s face standing on that field. I would have taken those opportunities for granted and missed out on them completely.

As grateful as I am for those opportunities, I struggle with the unfairness of it all. Why my sweet, innocent child was burdened with such an unfair, unrelenting condition. Why he walks around in a fog of medication. Why he has difficulty processing and why he is always exhausted. Most days, the scale seems very much tipped against him.

And yet, these moments make him smile. They let him be a normal kid. They also make him feel special. They’re a gift from the universe trying to balance out the hard stuff that my son goes through every day. They are also to teach me to appreciate the opportunities and to be present during them with my son.

I don’t know if the scale will ever be even. As his father, nothing can undo the memories of how bad things got for my son. But the part about being present? I’m grateful for the lesson.

April 4, 2017