epilepsy dad

  • 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.

  • 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.

     

     

  • A Really Big Week

    A Really Big Week

    Over the summer, two huge things happened during the same week.

    Professionally, I delivered a keynote speech at a conference. I’ve given many presentations before, and public speaking is something I want to do more. But this was much bigger than any talk that I had given previously.

    I started to prepare for my talk weeks in advance, but, at the same time, another important event was looming on the horizon. The same week as the conference, we would be dropping our son off at sleepover camp for the first time.

    Our son has rarely spent a night without either my wife or me there. And, when I say rarely, I mean once. No sleepovers with friends. No nights with the grandparents. One night in his entire life he spent with our nanny so my wife and I could go on an extended date night in the city and stay in a hotel, three blocks from our home. And now, we were going to send him away for a week.

    Our local Epilepsy Foundation affiliate runs a program called Camp Achieve that is tailored to the needs of kids with epilepsy. It’s a week-long summer camp where the kids do proper summer camp activities. They swim and play tennis and have water balloon fights. They’re surrounded by other kids that are like them. Many of the counselors are former campers, and they are rounded out with volunteer doctors and nurses and other medical professionals. We knew and trusted so many of the volunteers because they were our nurses and friends we met through the Epilepsy Foundation.

    Even so, the idea of leaving him for a week tore at my soul. I was worried about him, not just medically, but emotionally. I wondered how he would do away from us. I was worried about my wife. I was trying to be strong but leaving him was one of the hardest things I’ve ever done…right up there with giving a keynote speech.

    When I was still weeks away from the overlapping events, working on my speech provided a distraction. But as we got closer to camp week, I was having difficulty focusing. I didn’t work on my speech as much as I wanted to. I also wasn’t dealing with the impending separation from my son. Before I knew it, it was time to drop him off.

    In life, there are easy days, and there are hard days. The day we dropped our son off to camp was a tough day. I was so focused on the process of checking him in that I was unprepared for when it was done, and we were shown to our car. The rest of drop-off day was a waste, as was the next day as my wife and I checked Facebook every two seconds to see if the camp had posted any pictures of our son.

    But the conference was still happening, and it was only a few days away. I needed to focus and, thankfully, my wife helped, and her performance background proved instrumental. We spent the next few days shifting our attention away from Facebook (it helped that we started seeing pictures) and towards my talk. But each of those days was an exhausting marathon trying to keep my attention where it needed to be. Every night, I felt like I had given everything and crashed hard, only to repeat it the next day. Eventually, there were no more days.

    The day of the conference was the day before we would pick up our son. It felt like I just needed to get through this one, really big, last thing. Even though that morning, I couldn’t remember any of what I was going to talk about, I somehow managed to calm my nerves enough to deliver what I was told was a solid talk. The euphoria after the conference was a mix of relief and excitement. My wife and I celebrated making it through the week with an intense ping pong competition, then went to bed knowing we’d see our boy in the morning.

    We made it.

    Pickup day was an orchestrated event, so even though we saw him outside his cabin, we resisted the urge to run over to him and hold him. But my heart felt so full when he signed “I love you” to us with a tired smile. When the ceremony was over, I held him so tight, and it felt like the perfect reward for making it through the week.

    My son had a great time and wants to go back. Next year, though, I won’t sign up for anything the week of the camp. Maybe my wife and I can even go away together.

    Just not too far away.

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About

I’m Dave. I write about raising a son with refractory epilepsy.
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