epilepsy dad

Category: parenting

  • 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.

  • 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.

  • It Can Always Get Worse

    It Can Always Get Worse

    We finally got a second opinion. Not because we didn’t think the doctors at our hospital were doing everything they could. But because that’s what responsible parents do.

    I wasn’t expecting a miracle. I wasn’t expecting someone to tell us we missed something that would cure my son’s epilepsy. We were looking for another perspective or treatment that we missed. We hoped that someone out there had another case like ours and could provide some insight. We wanted a little more hope. We wanted a little more of something to hold on to.

    The hospital sent the report to my wife. That night, she tried to tell me what it said, but I didn’t let it in. I nodded as she spoke the words but I put my guard up and those words bounced off me and fell to the floor. For the rest of the night, I stepped over them as I distracted myself with other things until it was time to go to bed. But I didn’t sleep.

    The next day, I started to feel the effects of the night before. Not only the report but how I reacted. How I tried to ignore it to make it less real. How not facing it doesn’t make it go away. And how I left my wife holding that emotional weight by herself.

    When I got home from work, I hugged her and apologized for leaving her stranded. I asked her to send me the report, and I read the pages of detailed notes that the doctor had put together. It was a thorough summary of the last three years of our lives. It included confirmation that our doctors are doing the right things and that there wasn’t anything we missed. Then, towards the end, I saw what I didn’t want to see the night before.

    What should we expect in the short and long term? Is there any other information you feel would be helpful for us to know?

    I do worry that his clinical picture has raised suspicion for a myoclonic epilepsy that may be progressive, in which case, continued difficulty in treatment and learning decline can be seen.

    It wasn’t the first time we heard that. We’re three years in without seizure freedom, and it’s feeling like a more elusive goal every day. Our doctors alluded to the possibility but kept us focused on stabilizing what we can now. The near-term goals were a welcome distraction from the long-term possibilities. But I also don’t think about it getting worse because I can’t think of anything worse than what is happening to him now.

    That night I laid next to my son as I put him to bed. I told him that I loved him. That I would always be there. That I was sorry that his life was so hard. I was trying to communicate my feelings to him. But he’s eight and doesn’t understand the words we use to express those very big feelings.

    Somedays, neither do I.

    But I feel the need to get them out and hope that he will someday be able to understand. I worry that there will be a window between now and if things get worse where he is able to grasp the meaning in my words. I don’t want to miss that window. Even if it only cracks a little, I want to get something through. Because if things do get worse, I need to know that he will have something to hold on to.

  • A Moment Of Lucidity

    A Moment Of Lucidity

    I came home and everyone was sitting at the kitchen table. The topic of conversation was about how good a day my son had. A smile flashed across my face. We haven’t had a lot of those lately, and this sounded like a really good day.

    My wife made a strong case for possibly his best day in months as she described what had happened. She told me that his aide at work commented about him being his old self. My son jumped in, adding emphasis to his trip to the library and the Lego club he discovered there. The energy in the house was amazing, and we held on to it all evening.

    Over the past few months, we’ve been adjusting my son’s medications. It is a hard time for everyone as we try to manage the seizures and side effects that always follow. Insomnia, fatigue, and emotional and behavioral issues disrupt everything about his life. I saw the turmoil inside of him taking a toll, and his bouts of sadness shred my heart to pieces. I was so happy for him to get a win.

    It wasn’t until we started to get ready for bed that we noticed that he didn’t get his morning medication. In the 1,128 days that we’ve been giving him medication for his seizures, this is only the third time that we screwed up. In the past, if we get off-schedule for his dosing, we saw signs that raised an alarm. He might have a seizure during the day or more during his nap. But this time, there were no signs like that. Only a really good day.

    We scrambled to get him back on track, but the inevitable happened. He had more seizures that night than he has had in while. The next day, his behavior was erratic and it took most of the day to get him settled down. Over the course of the next couple of days, both his seizures and his behavior started to level off.

    Before we knew about the missed medications, we thought that we had cracked the code. His head has been swimming in medication for so long but we continue to look for the right mix. We lower the dosage on ones that put him in the haze and increase the dosage on ones that help his seizures. We thought that with this latest combination we found that balance.

    But instead of a solution, what we spotted was an anomaly. A single, dangerous moment of lucidity. I picture him suspended in a sea of medication. It slows his movements, makes it hard to think and to see and to be himself. That day, he was finally able to reach the surface. He was able to take one big breath and see the world around him. We could see him, too, as his head broke into the open air. Then we watched as he was slowly pulled back under.

    Was this a glimpse of the boy behind the seizures and the medicine and the side effects? Is he gone again? Lost beneath the surface of his condition? Or was it a coincidence? He has had some pretty good days before. Are we are trending in the right direction and that really good day was a sign of things to come?

    The answer to those questions is the same frustrating answer it always is. Wait and see. It’s the same answer when we change medications. It’s the same answer when we start a new treatment or therapy. Everything is so unpredictable that we just have to wait and see. But this time, the stakes seem higher because we’re trying to figure out if what we saw was our son or a mirage.

    Deep down, I know what the answer is. The reality is that it was my son. But it is him on the other days, too. He is whoever he is in front of us on any given day. That’s the reality of his condition. The good and the bad. The sweet, gentle boy and the sad, angry boy. The lucid and the drugged. The boy who can face any challenge and the boy who wants to hide and be alone.

    Sometimes, I get so wrapped up in the differences between the two that I wind up chasing the mirage. I focus on the way things should be because I want his life to be easier. To be better. But when I do that, I leave my son behind. I miss out on the gifts that we are given instead of simply being grateful that my son is here and that he had a really, really good day.