epilepsy dad

Category: 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.

  • On The Surface

    On The Surface

    Recently, on the way to school, my son told my wife that he wasn’t feeling good. She turned around and took him home where he slept for three hours.

    Usually, he will try to push through. I don’t know if he doesn’t recognize what is happening in his body or if he is too stubborn or eager to please, but he goes dangerously beyond his limits until he crashes. We have spent so much time picking up the pieces and putting him back together after he does.

    My son started having seizures before he developed a reference or the vocabulary to describe what he was feeling. He only knows seizures, and medications, and side effects, and fatigue. There was never an absence of these things that he can recall and contrast when it happens to him today. For him, that is normal.

    We have spent years watching him closely and trying to be the external monitor of his condition. We ask probing questions when we suspect that he is off, but he often answers “yes” as if he assumes we know what he is feeling or can describe what he can’t. But we only see the external signs. We can only see what is on the surface. And our vocabulary and ability to describe what is happening to him is as limited as his.

    Me: “Do you have a headache?”
    My son: Yes.”
    Me: “Do you know what a headache is or feels like?”
    My son: “No.”

    I write every day. At work, I use words to describe complex systems. But the words that I know seem inadequate to describe what I can only imagine he is feeling. It’s words and concepts in another language that I am just beginning to understand after five years. We’re trying to use that language to communicate but too often things are lost in translation.

    It’s another one of the many frustrating things about being the parent of a young child with epilepsy. I want to make the seizures go away, but I can’t. I want to eliminate the side effects of his medication, but I can’t. At a minimum, I want to understand what he is going through so that I can help him but there is so much about his condition that is invisible to us. It’s a terrible feeling of helplessness.

    I’m hopeful that, as he did on the way to school, he’s starting to build awareness of what is happening inside his body and vocalizing it. Becoming an advocate for himself and expressing his needs will be critical for him to be able to navigate a world that is not always kind or forgiving or tolerant of people who are different.

    For the past five years, we have been the monitors of his condition and the ones expressing his voice. As much as I felt ill-equipped for the role, it was necessary because my son was not able to do it himself. It made me feel needed and useful instead of focusing on my inability to find a way to make the seizures stop. I am comfortable filling that role but I can only account for what is on the surface. There is so much more to him and his condition than what I can see.

    The reality is that the more I take on that responsibility, the longer it will take my son to learn to do it himself. It will take longer for those symptoms and feelings that exist below the surface to reveal themselves. And it will take longer for him to get what he needs because he won’t learn to put his needs out there. At some point, the help I am trying to give him becomes the thing holding him back.

    Reality and I don’t always agree, but it is usually right.

  • 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.