epilepsy dad

Tag: parenting

  • All The World’s A Stage

    All The World’s A Stage

    Recently, my son performed in his first school play. School has been physically, mentally, and emotionally exhausting for him this year. He likes school, but it takes a huge toll on his body and mind doing full days. In an otherwise difficult year, the play was the thing he most looked forward to, so we adjusted his schedule to allow him to rehearse with his class and have a part in the show.

    He worked hard rehearsing for his role. Memorization is extremely difficult for him, but he practiced reciting his lines almost every day. We’d catch him at random times singing the songs from the show as he played with his toys or started to drift off to sleep. It was the first thing in a long time that he had that was his and that he was excited about.

    When the day of the show finally arrived, it started with six seizures before breakfast. He had big circles under his eyes as he slowly crawled out of bed. As it goes with epilepsy, we didn’t know why he had more seizure than normal. But we let him rest most of the day with our fingers crossed that he would feel well enough to go to the show. Even after an afternoon nap, he still seemed tired but, thankfully, his excitement and adrenaline gave him the boost he needed to make it out of the house.

    My wife and I sat in the audience anxiously waiting for the show to begin. I had a big smile on my face when I saw my son peak his head around the curtain. I heard the kids getting into position and felt my heart start to beat faster. Finally, the curtain opened, and I thought we made a terrible mistake letting him do the show that night.

    I could see by the look on his face that he wasn’t really present. The energy that got him out the door seemed gone. Most of the time, he looked lost on the stage, bouncing between children to try to find the spot where he should be. I felt helpless every time we made eye contact. I felt angry that they didn’t set it up better or give him a buddy to remind him where he should be. While these thoughts raced through my head, I tried to keep a smile and to be a friendly face in the audience for him.

    My wife and I struggle with finding the right place for my son. Not just with school, but finding environments that are safe for him and that try to understand what life is like for him. Watching him on the stage, unable to find his place, brought that fear of him never finding that place center stage. It acted out my anxiety of what life will look like for him as he gets older because the world doesn’t know him and doesn’t understand him. I saw on that stage a future for my son where he spends his life bouncing around, bouncing off people, endlessly lost.

    When the show was over, my son came running off the stage and into our arms. He was happy. He had just done something impossibly hard and felt good about himself. At that moment, everything I was feeling melted away and I held him and told him how proud of him I was.

    It’s hard to not get lost in those visions of what the future will look like for my son. There have been too many times where I get swept up in those feelings and miss what is happening right in front of me, in the present where my son needs me to be. It’s in those moments where he continues to show me what he is capable of and remind me that the future is unwritten and filled with as many possibilities as it will be limitations. The only thing that is certain is what we have at this moment. As I held my son and felt his joy, I didn’t want to miss it.

  • Lessons From The Field

    Lessons From The Field

    The welcome arrival of Spring brings with it sunshine, warmer weather, and baseball. Last season was incredibly special for my son and our family because of the team we were on and the experiences that my son had. At a time when my son desperately needed something to hold on to and an outlet of his own, he found it in baseball.

    This season, we are on a new team but there is no reason to think his experience will be any different. We’re fortunate to be reunited with coaches who knew my son from when I coached him and the coaches’ daughter in tee-ball a few years ago. When we reached out to them to give them background on my son, they already knew about him and welcomed him wholly.

    Baseball has been good for my son. It provides him with an opportunity to be around other children, to have fun, and to get better at something that he enjoys. It has been good for me, too, by giving me opportunities to step back and let my son have his own experiences, his own successes and failures, and to let him figure out from those experiences who he is and who he wants to become.

    Last weekend, my son had a chance to pitch for the first time. He was excited. I was terrified. My brain immediately went to what could go wrong. His throwing accuracy is not the best. I was worried that he would be embarrassed. I was worried that he would walk everyone. I was worried that he would lose the lead and that his teammates and coaches would be disappointed. I was worried that he would like it but wouldn’t be asked to do it again.

    Before the inning started, I took him to the side to get him warmed up. He wasn’t great, but he wasn’t terrible. Then they called him up. As I walked him back to the field, I flooded him with instruction and advice. He threw a few more warm-up pitches with the coach and seemed to do ok, but I held my breath as the first batter came to the plate.

    The thing about my son is that he likes to play the part. He’ll see a movie of a baseball player and add the drama and flourishes to what he is doing, even if it’s not appropriate for his situation. On the pitcher’s mound, he looks towards first as if he is going to pick off the runner, not understanding that in his league, the players have to stay on the bag anyway. While he is on a base, he’ll crouch way down like the player did in the Jackie Robinson movie, even though it’s not practical to run from that position. I get frustrated because I think he could do a much better job if he could just focus on the task even though many times he simply can’t. But then he also might not have as much fun.

    On the mound, he threw a few strikes but a lot of balls. He walked a lot of batters and hit one. I could see him start acting instead of following his steps. I tried to get him to settle down before I realized I was likely making it worse. My frustration and anxiety were bubbling up as I watched our sizable lead shrink. The coach was finally able to put in a different pitcher and I started to think about the conversation I would have to have with my son. Should we talk about not playing the part and just focusing on doing his steps? Should we talk about how they may not ask him to pitch again? Should we talk about how he can do better?

    When the inning was over, my son ran off the field with a big smile on his face. “Did you have fun?”, I asked. “That was amazing,” he said.

    After the game, my son and I played catch. He threw the ball right to me every time. I asked him what was different between throwing the ball to me and pitching and he said that when he was pitching, he was nervous because everyone was watching him. I realized that I was so focused on the mechanics of pitching and trying to get him to stay out of his head that I didn’t think to check in with how he was feeling going up to the mound for the first time. I was so focused on my anxiety and my frustrations that I didn’t ask about and acknowledge his.

    It’s hard. It’s hard to step back and to not be the “helicopter dad” always trying to protect him or to keep him on task. I do it with the best intentions. I want to protect him. I want to help him with the challenges his condition and the side effects of his medicine bring to his life. I felt like he needed me to do those things to function in the world, but deep down I know that it’s holding him back. He needs to be able to figure it out without me because I won’t always be here. And he needs to feel like he can do it by himself and for himself so that he develops confidence and a sense of worth. He simply can’t do that if I’m always trying to do it for him.

    On the way home, I asked if he wanted to pitch again and he said “absolutely.” The coaches agreed. Because where I saw anxiety and fear and failure, they saw an amazing kid do something that he had never done before with joy in his heart and a smile on his face. They didn’t expect him to do it perfectly his first time because they know that he’ll get better with experience. They just wanted him to have fun doing it. Once I got through my own baggage, I figured out that so did I.

  • Castaway

    Castaway

    We went to Florida recently to visit friends and to see our family. My son’s nanny from when things were at their worst had moved to Miami with her family. On our last few trips, we flew in to see them before heading over to see my parents.

    In addition to her understanding our son’s history, they are just good, generous people who are part of our family now. They moved away just over a year ago and have established themselves in their new city. They have a child of their own now that she takes care of and her husband has a good job. We stayed with them at an adorable house they bought not far from the city. They took us to the beach and to different eateries nearby. We got a glimpse of their new life in their new home.

    One night while we were down there, my wife started crying. She said she felt like we were stuck in the same life while everyone else’s lives move on. I felt the same way.

    Maybe it was the tropical air and the palm trees, but I thought of the Tom Hank’s movie Castaway. In it, the main character survives a plane crash only to be stranded on an island in the middle of the ocean. Years go by until he is eventually rescued. When he returns to civilization, he finds that the world has moved on without him. Technology has advanced. Friends have moved on with their own lives.

    The world is moving on without us. Our lives may be slightly better or slightly worse in some areas compared to previous years. I have a new job and we have a new house but, as a whole, it feels like the same life. We’re still struggling with a sick kid, with seizures, with behavior issues. We’re still dealing with school, and doctors, and appointments, and therapies. We’re still making food for the ketogenic diet and picking up prescriptions at the pharmacy.

    Maybe it feels this way because we’re still in the middle of it. It’s hard to feel like you’ve moved on when you aren’t able to let go of anything from the past. When everything is present, there is no moving on. When you wake up and have the same day over and over again, you’re like the character in the movie, stranded on an island while the rest of the world moves on without you.

  • The Macro and The Micro

    The Macro and The Micro

    There is a difference between the macro and the micro. The macro is the big picture. It’s the view of our life from the outside. It’s filled with generalizations. The micro is our life on the inside. It’s the day to day, minute by minute decisions and occurrences that are missed when you only see the big picture.

    The macro is the view from our social media feed. It’s the images of Hawaii and hockey games, Globetrotters, and Florida. It’s the smiles and the perception of a normal family living a normal life.

    The micro is the structure and planning that goes into every day that allows those experiences to happen. It’s the fallout after a game when he is too tired to regulate his behavior, or the next day when he is so tired that his routine is off and we have to start over from scratch.

    The macro is seeing him leave the house with a backpack on his back heading to school. It’s math, and reading, and recess and lunch. It’s a science project or a school play.

    The micro is how difficult school is for him and how he only goes for a few hours a week. It’s seeing the extra hours he puts in every day doing schoolwork and how hard he has to work trying to keep up with his peers. It’s falling behind socially and trying to make up for it in other ways. It’s 504 and IEP meetings, and lawyers to navigate a system that was not designed to support his needs.

    The macro is a good job with the cool job title and working for a huge corporation. It’s the view from the tower.

    The micro is the stress of a difficult job and wanting to succeed there while so much is happening at home. It’s traveling for work and being thousands of miles away, worried that I will be needed. It’s the pressure to constantly perform to keep it all together and an inability to turn it off. It’s the strain that puts on relationships. It’s the fear of it all tumbling down and losing it all.

    The macro is the family living in the city, hip and trendy in a condo in the sky.

    The micro is why. It’s living in the city to be closer to the hospital and the endless appointments. It’s needing to be closer to a public school that has to take him, whether they can support his needs or not. It’s removing as much maintenance from our lives so that we can fill the moments between appointments with joy instead of chores.

    The macro is a kind, generous, happy kid that makes the world around him smile.

    The micro is the lonely, sad, tired kid that struggles every day. It’s the kid that takes medicine three times a day that causes depression and behavior issues. It’s the kid that doesn’t have many friends and struggles to learn how to interact with the ones he does have. It’s three years on an impossible diet. It’s having things that he loves taken away because they were meant for a different life. It’s trying to figure out what is meant for this life.

    The world around us is filled with these different perspectives. It’s a choice to see the world from above or to get down on our hands and knees to inspect what lies below the surface. Macro is the aggregate. Micro is the individual. Which one you see depends on where you are and which lens you choose to use to see the world.

  • Neverland

    Neverland

    Early in the morning, my son had a seizure. As his body tensed and contorted, his lungs expelled air through his vocal chords. The sound it made traveled between the open door of our rooms and woke me up.

    I pulled off my covers and made my way into his room. He had sat up, but he was already making his way back on to his pillow. Standing at the head of his bed, I reached my hand through the slats and stroked the top of his head. I whispered to him that he was going to be okay and that he should go back to sleep. He eventually did, so I returned to bed.

    I checked the clock. There might have been enough time for me to fall back to sleep, but it was also close to the time that I needed to wake up. While I pondered what to do, I stared at the screen of our monitor. My son was asleep, with a blanket draped over him and his two fingers that he still sucks in his mouth.

    My restless, exhausted brain started to drift. Someday, I thought, he’s going to grow up. Instead of the sound of a child, I will hear the deeper sound of a young man echoing through the hall. I shuddered at the eventuality and gave up on the idea of going back to sleep.

    I started to think about what else was going to change but stopped myself. I see the boy on the monitor and can’t think of him being anything else. If I knew where Neverland was, I would take him there so that he would never have to grow up.

    In Neverland, he could stay the boy who sleeps in our bed when he is sad or afraid. The boy who sits on my lap when he needs to be held. The boy who looks at the world with wonder and compassion. The boy who doesn’t feel the pressure of the adult world. The boy we can shield from how ugly that world can be.

    I want to keep him at this age because it’s only going to get harder for him. He’s going to start questioning his value and his worth. His gentle soul and open, hopeful, dreaming nature will be tested, as will his belief in magic and possibility. I don’t want him to ever doubt that he can fly because the moment he does, he will cease to be able to do it.

    I know that instead of wishing for him to not grow up, my responsibility is in preparing him for the world. Instead of trying to keep him young forever, my job is to help him grow in a way that encourages the magic inside him. Instead of losing it, it will be what helps him believe that he will always be able to fly. But I thought we would have more time before the real world penetrated our existence. Maybe I thought it would never happen.

    When Peter invites Wendy to forget everything and join him to live in Neverland and to never grow up, Wendy answers “Never is an awfully long time.”

    I stared at the monitor and thought that “never” was not nearly long enough.