Epilepsy Dad

Things No Child Should Get Used To

A few weeks ago, we went to the children’s hospital for an appointment. We walked through the large, automatic doors and up to reception where my son said hello to Mary (they’re on a first-name basis), who commented that she liked his red hair. Without needing to ask, she pulled our family up from memory on the computer and printed our visitor badges.

Check-in completed, my son led us up the main staircase to the second floor. At the top of the stairs, he turned left and headed down the long hallway towards neurology. He knows his way around the hospital and which building to go to for neurology, or speech, or another test. As I followed him down the hall, it made me sad to realize how well my son knows his way around that place. A child should know his way around a toy store, not a hospital.

As we turned the corner, we passed phlebotomy. There were nervous parents and children in the waiting room, and seeing them sitting there made me think of the times we were in those chairs. The first few times, we were nervous, too, but after too many visits, we got used to it. Now, my son likes to talk to the phlebotomist as she prepares the needles. He politely says “No, thanks” after she invites him to look away, and he watches as the needle pierces his skin. “I never cry”, he says, which is almost true in the hundreds of times he has been pricked and pierced. “You should come here more often to show our other patients how to do it,” we’ve heard more than once. “Ok, ” my son replied, “I’m really good at it.” As I remembered him saying that, I felt sad. That’s not something a child should be good at.

He knows the routine of the physical exam, not because he has had years of exams under his belt, but because he has had so many in the short time he’s had epilepsy. These doctor visits, the trips to one of his therapists, the emergency room visits, they’re part of his routine, those things he’s done so many times now that he just does them because, well, that’s what he does. All these things are now just part of our lives, are part of his life, like eating, and breathing, and going to the park. He wakes up and takes a handful of pills, and another handful at night, without question, because that is what he has to do. He doesn’t get to eat the food that his friends do, and he can’t just have a snack, it has to be weighed and measured because that’s how it is and he’s used to it. He doesn’t look at a restaurant menu because he knows he can’t order from it, and he’s used to that, too.

He’s getting used to having seizures. He’s crying less after he has one in the middle of the night and more regularly just putting himself back to sleep. If he forgets to put on a pull-up and needs to change, I’ll often catch him on the floor halfway through the process by the time I get to his room. He’s getting more aware of his seizures, too. He had one on the basketball court the other day. When I asked him if he was okay and if he knew what happened, he replied, “I had a seizure, but I’m ok.” It rolled off his tongue so casually it was as if he was describing a shot that he missed or if he had tripped on a rock and fell.

On one hand, I’m grateful that he has accepted these restrictions and these changes in his life so easily. I am not sure that I have the strength to constantly explain to him why he has to do these things when I am still struggling with my own questions. Why is this happening to him? Was it something that came from me? Is this our lives forever?

On the other hand, if I think about the things that he has gotten used to, it breaks my heart. This condition has taken away too many things from the one person who I desperately wanted to open the world for, and I’m having a hard time resolving that discrepancy.

I try to think about the positives in this situation, but most of the time I just see a little boy who has gotten used to too many things that he shouldn’t have had to.

Riding The Roller Coaster

I have always loved roller coasters. My first roller coaster was the Cyclone at Riverside Park in Massachusetts. I used to go there every year as part of my elementary school’s summer field trip, and the Cyclone was usually the first and last ride of the day, no matter how long the line was. The Cyclone was an old, wooden coaster that was extremely loud and vibrated like a rocket as the wheels traveled along the metal track. It vibrated so much that it left my feet numb by the end of the ride. I didn’t care. For a few seconds in the middle of the ride, as the cars sped over a small incline, I was weightless, floating above my seat like an astronaut in space. It was wonderful.

Ever since the Cyclone, I’ve sought out roller coasters at every park I’ve been to. My wife (reluctantly) indulges me in my pursuit and joins me even when her internal voice tells her to feign a sudden case of “whatever will keep me from that ride.” My son has the bug, too, and, after years of falling short (literally) at the measuring stick at the entrance, he was finally able to ride his first “big boy” roller coaster this spring.

Full disclosure, that first ride was less than ideal. After an unexpected boost of speed right out of the gate, my son’s face smashed into the safety harness. When he stepped off the ride, blood was streaming down his face. I took him to the bathroom where he proceeded to pull out one of his front teeth. He lost the second one later that day. The Tooth Fairy came that night, but I’m still waiting on my “Parent Of The Year” plaque.

Being the tough kid that he is, a little blood and a new bite pattern didn’t stop him from tackling another roller coaster later that day. It didn’t surprise me, though. My son is pretty fearless, and he’s been on his own roller coaster these past few years.

Roller coasters are fun because they eventually end. The safety harnesses provide the illusion of danger and the thrill of the speed, bottomless drops, and corkscrew turns only lasts for so long before the cars pull back onto the loading platform and the riders are allowed to exit to the left. My son’s roller coaster is way less fun. The safety harnesses are rusty, we can’t see the track in front of us, and it doesn’t stop at the terminal to let us off.

The first four years of his life were like the beginning of the roller coaster when the cars slowly leave the boarding area and are slowly pulled towards the sky. The passengers laugh with nervous excitement as the cars tick-tick-tick their way to the apex. The ride is just starting and the anticipation continues to build, fueled by endless possibilities and carefree exploration of a limitless world.

Finally, the clacking stops and there is a brief silence as the cars are released. The potential that is stored in the cars at that height is about to be realized. Everything that has been built up comes into view as the cars tip forward and what comes next rises into view.

The big plunge. The first drop. It’s usually the scariest and the fastest. It’s the event that builds the momentum for the rest of the ride. If you’re ready for it, it can be an exhilarating, white-knuckles-holding-on-to-the-bar-for-dear-life-and-laughing-hysterically experience. If you’re not ready for it, it’s terrifying and you feel out of control. The seizure, the ambulance, and the realization that our lives had changed happened at a million miles an hour. There was no preparing for a drop from that height. It turned my stomach inside out. I was afraid and overwhelmed by a sense of panic. I wanted to get my family off the ride but there was no way to stop it.

What has followed has been a series of hills where everything seems to slow down and where we start to catch our breath before another drop where the air is ripped from our lungs as we plunge faster and further down the track. Every medicine that seems to start working gives us hope before, more likely than not, the seizures come back and we are again in a freefall. The ketogenic diet that has worked miracles for some children only slowed our ride but it wasn’t enough to stop it. And so we continue rising and falling along the track, racing through every peak and valley, we are slowly giving up on the idea that we’re ever going to get off the ride and simply, desperately trying to figure out how to keep the cars on the track and weather this turbulent, unfair, and unforgiving ride together.

Where Care Lodges, Sleep Will Never Lie

I walked from the living room to the kitchen, passing the door that led down to my son’s room. Out of the corner of my eye, I noticed a tuft of red hair sticking through the doorway. I stopped, tilted my head to the side, and saw an eye widen with the realization that the person it was attached to had just been caught.

This was the third time he was out of bed. He was restless and did not want to sleep alone. I slowly pulled open the door and asked him what he needed. “I was wondering,” he said, looking down at the floor, “if someone wanted to lay with me downstairs.” During the last few weeks, when his seizures were worse and when we were on the road, we often slept in the same bed. Now that we were home, we were transitioning back to our normal sleeping arrangements. This anxiety was an anticipated side effect. On the first night, he was so exhausted that he fell asleep in his own bed before he could plead his case for one my night in ours. On this second night, though, following a long afternoon nap, he was in a better position to resist.

“Come on, buddy,” I said as I led him back down in to his room. I climbed in to his bed and he followed, laying down next to me and putting his fingers in his mouth. By the light of his nightlight, I could see him adjust his body in to its ready-to-sleep position, and the tell-tale sign of impending sleep where he picks gently at his upper lip soon followed. His breath began to lengthen and, after only a few minutes, he was asleep.

On the nights that followed, we brought him back up to our room because his morning seizures had once again gotten worse and it was easier on all of us to be in the same room when they happened. No late night trips down the stairs and fumbling through the dark to find him sitting up in his bed; instead, we were next to him to reassure him and coax him back to sleep.

This has been the pattern of our lives for the past two years. When we think we are getting a handle on his seizures, we transition him back to his room. When he is in his bed, I vigilantly watch the monitor throughout the night and listen for any signs our most unwelcome intruder. When his seizures inevitably get worse again, we bring him back in to our room and spend the night uncomfortably cramped in a small bed, waiting for the sounds and uncontrollable movements that accompany the attack on my son’s brain.

If I seem tired, it’s because I am. Sleep is sporadic and short and only serves to keep me functional the next day. Some days, it’s barely enough to keep the lights on, but I find a way. Because most of us that are living this life don’t have the luxury or desire to stop because if we do…what we miss could be everything. So we stay on watch, careful and committed, for as long as we are needed.

This is what it is like to be the parent of a child with uncontrolled seizures.

Care keeps his watch in every old man’s eye,
And where care lodges, sleep will never lie.
― William Shakespeare, Romeo and Juliet