epilepsy dad

Tag: parenting

  • Practicing Life

    Practicing Life

    A few months ago, we went to a water park resort for my son’s birthday.

    I like water parks as much as I like dysentery (they’re basically the same thing). But it wasn’t my birthday, and the destination was an impromptu backup after the initial birthday plans had to be scrapped.

    My son was understandably excited, so after we dropped off our luggage, we changed into our swimsuits and headed to the slides. The resort was massive. We navigated through the restaurants and arcade until we found the doors to the oversized Petri dish. I grabbed us a stack of towels, took a deep breath, and stepped through.

    The park itself was a feat of engineering. Huge slides and pools were efficiently organized to take advantage of every inch of space. The concrete and florescent lights were clear indicators that nothing about this place was natural, but the deep scent of chlorine was very reassuring.

    I surveyed the crowd, wondering which one of them was Patient Zero for the impending outbreak. I eyed the teenage staff skeptically, wondering if these were the people with whom I entrust my safety and the safety of my family. But then I saw my son’s face and his smile and I smiled back and got in line with him.

    We rode a few slides that, I admit, were fun. Obviously, I had my eyes and mouth closed as tightly as a vault but, for a few minutes, I forgot how my son always winds up drinking the water in the pool and was able to enjoy myself.

    From one of the slides, we caught a glimpse of an obstacle course that my son wanted to try, so we walked over and he got in line.

    While we waited, I watched the other kids, mostly older, take their turns. The course was a series of platforms tethered to the bottom of the pool. They drifted further apart of closer together depending on the momentum generated by the person on them. Older kids had an easier time to reach the next platform because of their height, but then they would slide off the wet surface into the pool to the delight of their friends.

    A few positions ahead of my son was a little girl, maybe four or five years old. She was much shorter than the other kids, which was more noticeable as her mother brought her up to the starting line. I watched as her mother gave her some words of encouragement then slowly backed away.

    In my head, I was thinking that the mother should be closer. She was going to need to help her daughter navigate the course. She would have to hold her hand and encourage her, make her feel safe, and help her along. But then the little girl bent her knees and jumped.

    She barely made it to the first platform but had enough contact with the surface that she was able to pull herself up. As she eyed the next platform, her mother smiled and the rest of the audience started to pay attention. From platform to platform, she unorthodoxly jumped and made her way across the course. At every pedestal, she’d slide partially off but manage to hold on and pull herself back up. Every time, the audience cheered.

    All the while, her mother stood a few feet away. It was only as the girl reached the end of the course that her mother went over to her and celebrated with her. They held hands as they walked off together, celebrating victory.

    The thing that struck me most about that situation was the mother, and how she kept her distance to let her daughter try the course by herself. It made me think about all the times I don’t do that for my son. I often feel like I am the “helicopter dad”, hovering no more than a few feet away. If I’m not doing something for him, I’m telling him how to do it so that he doesn’t make a mistake or feel embarrassed for being wrong when he raises his hand to a question he can’t answer. Instead of letting him be brave and celebrating that bravery, I keep him from figuring it out by himself.

    I want to make his life easier because so many things are so hard. I want to do everything for him. I tell myself that it’s a matter of safety, or because he needs the extra help because of seizures or medications or exhaustion. But much like how training wheels prevent kids from practicing balance, one of the most important skills for riding a bike, I’m preventing him from practicing life.

    I grew up (and still am, to a large extent) afraid of making mistakes. Afraid of trying new things. Afraid of what other people will say. Afraid of putting myself out there. My worst fear is passing those fears on to my son. But somehow, in spite of my best intentions, he continues to be brave. He continues to raise his hand before he knows the question. He still tackles challenges that are much bigger than him. And he still gets himself to the edge and isn’t afraid to jump.

    It’s not easy, but I am learning to stand behind him instead of above him. I’d rather catch him if he falls instead of doing everything for him. I’d rather celebrate his victories and failures instead of keeping him from owning either. And I’d rather him practice life while I am here so that I can help him if he needs it, but so I can also watch him learn to balance on his own.

  • A Year With The VNS

    A Year With The VNS

    Last December marked the one-year anniversary of my son’s VNS surgery.

    Leading up to the surgery, I was a wreck. The week before, I had to give a preview of a presentation to one of our executives. I was not present and I stumbled through, relying heavily on the notes that I threw together on a handful of index cards. A few weeks later, my boss commented that she noticed how off I was. “You’re normally so put together. I don’t know what happened.” I did, I thought. My son was about to have surgery.

    As I wrote about when we were contemplating the VNS, there is something about a surgery that is so daunting. With medications or the ketogenic diet, we can stop them if they aren’t working and the side effects eventually go away. But you can’t “uncut” my child. Once the scalpel breaks the skin, that’s it. It’s done. Even if the VNS is turned off or if the leads are removed, there is no going back. That thought weighed heavily on my mind right up to when they wheeled him back to the operating room.

    Thankfully, we are near one of the best children’s hospitals in the country, and the surgery went smoothly. The device was turned on a few weeks later, and the waiting game began.

    For the first six months, I didn’t expect much of anything to happen, which was great because not much of anything happened. Except for the vibration in his voice from the tingle of the VNS and the two visible scars, there was no change.  We didn’t see any reduction in seizures, even as the doctors adjusted the intensity and frequency of the pulses.

    At nine months, there was more of the same. His vocal cords seemed to adjust and his vibrato was less pronounced, but I could still hear it. Again, though, there was no seizure reduction.

    A year after his VNS surgery, I would love to write that it took a year for the VNS to really start helping my son. I would love to write that he is seizure-free and that we were able to wean him off the ketogenic diet or remove a few pills from the handfuls of pills he takes every day. I would love to write that I sleep any better knowing that the VNS will protect my son from a catastrophic seizure and that I sleep much better at night.

    But I can’t.

    The obvious question is, knowing what I know now, would I have still gone through with the surgery?

    The short answer is yes. The VNS helps a lot of people. At the time, we didn’t know whether it would work and I was and still am willing to try anything to reduce or prevent my son’s seizures. I’m disappointed that it didn’t do more for him, but it was worth trying.

    Maybe someday it will help. Maybe it is already helping with seizures that we can’t see, or maybe it will someday prevent a really bad seizure.

  • What Is Left To Say?

    What Is Left To Say?

    When I started this blog almost 5 years ago, we were only just beginning our epilepsy journey.

    The first few posts were written from his room on the neurology floor of the children’s hospital as I watched the doctors tried to stop his seizures. I wrote as a way to process my thoughts and feelings as I worried about losing my son and learned about words like status epilepticus and refractory.

    After we left the hospital, I wrote about how our life changed. I shared stories of how we tried to rebuild my son after those initial waves of seizures took so much from him. I wrote about his therapies and how the exploration and experimentation with different medication led to the same frustrating results or unbearable side effects. I wrote about my fears about VNS surgery and my frustration with the hardship of the ketogenic diet.

    For the past year, very little has changed. In spite of having a VNS implanted, adjusting his medication, and continuing the ketogenic diet, my son is still seizing almost every day. I still worry about the risk of SUDEP. I still worry about the long term effects of these seizures as I watch him slowly fall behind his peers at school.

    When I would sit down to write, it started to feel like I was always wanting to write the same things and that I had already put my thoughts and feelings down. I wasn’t sure what was left to say, so I didn’t write anything.

    Not writing had the additional benefit of not having to look beyond the surface of our lives. I could stop probing how I felt about the challenges my son faced and what it meant for his future. I could just live in the present and deal only with what was in front of me. But that began to feel like I was shirking my responsibility as a father and doing a disservice to myself and to my son.

    During the time I stopped writing, I also received a number of messages from the epilepsy community. They reminded me that that others were going through the same challenges. I started this blog for myself but it brought me into a community of people who had already been where I was as well as people who were just starting on this path. The unexpected benefit of putting ourselves out there was that is reminded us that we weren’t alone. When things were dark and scary and uncertain, that gift provided immeasurable comfort.

    I was worried that because nothing has changed that I wouldn’t have anything to write about, but that is part of this journey. The ups, downs, and the long stretches in between filled with uncertainty, frustration, accomplishments, and joy are all part of life. They are the things that remind us why we are here and bring us closer together. They are our outstretched hands reaching in to the darkness that are met by the hands of others grasping for connection.

    As the new year began, I have started waking up early again. I make my coffee and sit on the couch in a quiet house staring at a blank page. I think about our life, past, present, and future. I think about the people we’ve met along the way, and I start filling the page with words.

    It turns out, I might have more to say after all.

  • The Night Watch

    The Night Watch

    Every night before he goes to bed, my son takes a handful of pills.

    The pills are the last line of defense that my son has against the unrelenting seizures that constantly lurk on the horizon. Especially at night, when his brain slows down to recuperate from the day, my son’s brain isn’t strong enough to defend itself against attack.

    His medication is meant to strengthen his defenses so that his brain can rest. They are the guards on the parapet defending the residents inside the walls throughout the night. But the gaps in my son’s wall are too wide for the guards to cover. It’s not a question of whether a seizure will break through; it’s how many. It’s how much damage will the attackers do before the sun rises.

    We’ve tried to boost his defenses. New medications. The ketogenic diet. VNS surgery. But none of them have prevented the nightly raids from exacting their toll on his developing brain. Even combined, they are no match for the electrical storm the flows wildly across the neurons and floods the cells.

    It could be worse. It has been worse. Before we knew what this was, the flood nearly took my son. The uncontrolled pulses flowed through the gaps in his natural defenses and eventually breached them entirely, leaving his body frozen and his mind disconnected. We managed to beat back the invader and rebuild. We strengthened the walls. We bolstered the night watch. But our seizure calendar records the history of attacks, painting cells with yellow markers revealing every defeat in long ribbons of sequentially colored squares.

    Every night before he goes to bed, my son takes a handful of pills because there is nothing else to do. We stick to our routine because it is better than the alternative. His pills, his diet, and his VNS play their part. But as he drifts off to sleep, I turn on the monitor and take my post watching over him, too. Because it’s my job on the night watch to be there when his defenses ultimately fail, to comfort him after the attack, and to help him rebuild the next day before we do it all over again.

     

  • The In-Between

    The In-Between

    We were in Colorado recently and saw some friends we haven’t seen in over a year. The school year has also started, and we’re seeing parents and children that we haven’t seen all summer. In both cases, people are seeing our lives at specific points in time. They’re seeing us then and now, but they don’t see us in the in-between.

    The in-between is where the highs and the lows are. It’s where the daily struggles of living with epilepsy are visible. It’s where the seizures feel like they never end. It’s where there are long stretches of days that seem impossible and where sometimes hope is lost.

    The in-between is also where small accomplishments seem enormous and where incremental progress seems like leaps and bounds. It’s where not going backward is sometimes as good as moving forward. It’s where a baseball game feels like the World Series and where climbing a rock wall feels like summiting Everest.

    The in-between is where every challenge and victory brings us closer together as a family. It’s where we shape our perspective. And it’s where our actions and how we approach the world shows how far we’ve come.

    The in-between is where we live. The in-between is our every day.