Tag: epilepsy

Being Remembered

We were in Colorado recently, closing the sale of the house that we lived in when my son was born. Our agent sent us the lock code so we stopped by one last time. I hadn’t seen the house since we left it almost five years ago. As we stepped through the front door, it was like looking back into a forgotten time of our lives.

The house was smaller than I expected, but nostalgia has a way of making things bigger than they were. We went from room to room telling each other the stories that we remembered. There might have been tears, some of joy and some of pain and sorrow. The feelings that surfaced were raw and real and big.

We continued on until we reached my son’s room. We made our first memories with our son in that house. I remember bringing him home and putting him in the crib that we assembled together. I remember sitting on the yellow rocking chair singing to him as we looked out his window. I remember long nights, and changing diapers, and feeling that new-parent fear.

As we toured the house, my son listened and told us that he remembered things, too. He told me how I would be on my knees playing goalie, blocking his shots when we played hockey in the basement. He remembered us eating vegetables from our small garden. He remembered us playing in the backyard on his swing set that my wife and I put together. Fortunately, he didn’t remember that we finished it at midnight after too many bottles of wine.

My son was two when we moved to a different house and then four when we moved to Philadelphia. I wasn’t sure how of the stories he told us he actually remembered. What he said most likely came from us looking at pictures and telling him the details many years later. But whether he was remembering our memories or his, there was one thing in his version that caught me off guard. That thing was me.

I know why it caught me off guard, though. I had two drastically different experiences as a child with my father and my stepfather.

My parents split up when I was two, and I lived with my mother and my sister. My father was only occasionally in the picture. Sometimes he would take me to a hockey game or a baseball game, and we did “second Christmas” with his side of the family. I remember the hockey games, watching the Whalers on the ice and I can still hear their song echoing in my memories. I remember going to Yankee games, going down to the edge of the field during warm ups and catching balls. But the thing missing from those memories is my father.

My stepfather coming into the picture changed my life. My mother was much happier and I had someone who spent time with me. I have memories of my stepfather and I fixing bicycles in the driveway. I remember him driving our old wood-paneled station wagon towing our camper with me in the passenger seat on the two-way radio. I remember making him laugh when my mother was trimming his mustache and his face as he tried to fight back the smile. Featured in each of those memories is my stepfather.

I’ve often thought about the difference in how I think about my father and my stepfather. About how one is still in my life and one is not. About how one is in my memories and one is not. Neither is perfect but at least one of them was there and still is there for me. These experiences shaped what type of father I want to be to my son and how I want him to remember me.

I want to be a part of his story. When he is telling his own children memories from his childhood, I want to be in them. I want him to see my face when he remembers that time he got a foul ball at a baseball game. I want him to remember me sitting on the couch next to him playing a video game or a board game. I want him to remember me helping him boogie board in Hawaii. I want him to remember with joy the “my dad always” remarks that show that I cared and was there.

I want him to remember me, not for my sake, but for his. I want him to know and remember how important he was to me because I want him to feel important and loved. I want him to feel supported and strong. I want him to be a part of a childhood that set up for success instead of something that he will need to get over. My son is going to have enough things to overcome in his life. I don’t want him to ever question his worth or wonder where I was. Because I am here. And I love him more than anything. That’s how I want to be remembered.

August 1, 2017
One Thing

Lately, my wife and I have started a new routine. We sit next to each other on the couch, flip open our computers, pull up our calendars, and look at the week ahead. Even though it’s all digital and we share our calendars, it gives us a chance to get on the same page. We can add any events that we miss or decide who is picking up dessert for dinner at a friend’s house later in the week. But it also gives us a chance to create a manageable week for our son.

Fatigue plays a big part in the frequency and severity of my son’s seizures. If he gets too mentally or physically taxed, they break free from their confinement. Instead of happening only in the morning, he’ll have them during his nap or after he goes to bed at night. The more seizures he has, the less rested he is, which causes more seizures. It’s a cycle that we work very hard to avoid.

In most cases, that means we only plan one activity a day. While other kids his age go between team practices, play dates, and birthday parties, he’ll do one thing. Instead of “and”, our lives involve a lot of “or”. A birthday party or a movie. The museum or the park. A play date or a baseball game.

Some days, that one thing is school. Other days, that one thing is therapy. Those activities are so draining to him that, if he goes in already tired, he can barely function. We see that, too, when he leaves school early to go to one of his appointments. But on those days, we don’t have a choice. He wills himself through it but then he stays exhausted through the next day. If that happens, we adjust his schedule to try to prevent those demanding days from adding up. If we can’t, or if we miss the signals that he’s running on fumes, we lie next to him in bed, watching him pay the price.

We had a few of those nights in early summer. School was ending and we tried to juggle therapy and baseball practice. He loved baseball, but it broke my heart to see what the physical exhaustion did to him at the end of the night. It was all too much, but deciding what to cut and when was impossible. School is important and provides social opportunities. Therapy helps rebuild those skills that he lost and reinforce those that he will need. And baseball…baseball made him feel like he was part of a team. And that he was a normal kid.

I wanted to take this post in a positive direction. I wanted to say that “in lives packed with activities and distractions, having to choose what to do helps clarify what is important.” I do believe that, but I also hate having to decide what to take out of my child’s life. I hate having to limit him in any way. To have to pick one thing. For every day. Every week. Every month. With no end in sight. There is no positivity in that.

But as conflicted as I am, it has inspired me to try to make that one thing amazing and special. And I try to be mindful, present, and grateful for that one thing. Because I know that, no matter how much it hurts, one thing is better than nothing.

July 25, 2017
Wherever We Go, There They Are

Whenever we go to a new place, in the back of my mind I want that place to change my life. It seems like a tall order, which may be why it hasn’t happened yet. I want to go to a place and be so inspired that I start writing that book that I’ve been thinking about. I want to leave a place a better person, having a better relationship with the people in my life. But mostly, I want to go to a place where my son doesn’t have any seizures.

My son didn’t show any signs of having epilepsy until we moved to Philadelphia. I was only partially joking with the doctors when I asked them if it could be Philly causing his seizures. The first time we went back to Colorado, I was ready to move back if he was seizure-free during the trip. But he wasn’t. I had the same thought when we visited Florida. Maybe Colorado was at too high of an elevation and he needed an ocean breeze. But he had seizures in Florida, too. And in New York. And in California. Wherever we went, there they were.

Even so, when I stepped off the plane in Hawaii, I had that same thought. That maybe this was going to be the place where my son would be seizure-free. If it was going to be any place, Hawaii wouldn’t be terrible. Before we even picked up our bags, I convinced myself we could make it work. I could find a job, even if it meant working remotely. I was sure the children’s hospitals would be fine, and we could make regular trips back to the mainland for care. But we wouldn’t need to, because he wouldn’t be having seizures. It was the perfect plan. Until it wasn’t.

In our first early morning in paradise, the sound worse than every other sound filled the hotel room. His seizures had found us. Across the continent, across the ocean, to an island in the middle of the Pacific. In a place we’ve never been before, hidden from the world. Wherever we go, there they are.

In a way, I was grateful that the seizure came quickly because it lifted the pressure that I had put on our vacation. The longer I carry that pressure, the less present I am and the more I miss of our life. But instead of worrying about that seizure around the corner, it had already come.

It was freeing.

It allowed me to focus on having an amazing vacation with my family in spite of our stowaway. It allowed me to be present and to be grateful for the moments that we have. I saw the beauty of the island. I saw the smile on my son’s face. It reminded me that it’s not a destination that is going to change my life. It’s that feeling that I get when I see his smile that makes my life better every day.

July 18, 2017
Starting From The Beginning

One of the truths about anyone new coming into our lives today is that they will never know how bad things were. Eventually, anyone that hangs around long enough will hear my son’s story. We will tell them how dark the times were and how sick my son got and how grateful we are to be where we are. But looking at my son today, it’s hard for most people to believe that things were that bad.

That disconnect feels isolating. It’s a reminder that there aren’t many people in our lives from that time. We were largely confined to the hospital after moving to a new city. The only people we knew were the medical staff, but they were transitory. We rarely saw any with regularity. Instead, we repeated my son’s history to every new face we saw. But they moved on and we stayed trapped in our world scared, desperate, and alone in the dark. Every day, every week, every month.

Sometimes, when you tell a story over and over again, it can dull the pain. The repetition has a numbing effect that makes it easier to deal with. But when you’re in the middle of it, that doesn’t work. Instead, it keeps the pain and the fear fresh and present. After months of unrelenting confrontation with our new reality, I wanted it to stop. I wanted one person, just one person, who I felt knew us, knew my son and could understand.

After a long string of random faces, my wish was finally answered. One neurologist started coming back through on rotation. Instead of repeating our son’s entire history each time, we could give her updates. She provided consistency and stability through our endlessly repeating days. I began to feel like I was talking to someone who understood what we were up against. Someone who knew how bad things were. She cared about us. Without those connections, it’s hard to imagine anyone fighting as hard as we were to not go back to that place. But she did. And for the last three years, we’ve had her at our side every step of the way.

Until now.

The woman who in many ways saved my son is leaving. I’m trying to be stoic. I’m trying to be grateful for everything she did for us. I’m trying to be happy for her as she pursues more of a focus on epilepsy because of her experience with my son. I’m trying to think about the many more children she is going to be able to help. But I mostly feel afraid. Afraid to take these next steps without her. Afraid that no one is going to get us or my son like she did. Afraid that no one is going to fight as hard as she did because of how connected she was to our story. When there aren’t many people that can relate to what you are going through, the loss of one is significant.

We’re at one of the best children’s hospitals in the country. Our new neurologist is one of the best in that hospital. But she didn’t see my son at his worst and I’m struggling with whether that matters. Whether she’ll fight as hard as she would if she had seen him back when this all started. Whether she will be personally invested in his outcome. Because I need that. I need his caregivers to have that connection to him. I need them to know and call him by his nickname. I need them to know how important he is. I need them to know who he is. He’s not just a patient, he’s my son.

The thought of having to start over is stirring memories from when this all began. I’m afraid of having to start retelling my son’s story and reliving those dark and fearful days. But I’m also going to miss that light that lifted us from the darkness. I’m going to miss having her at our side.

We tell our son to be brave. To be grateful. To try to find the positive. And I am trying, but right now I just feel scared, and alone, and sad.

June 27, 2017
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