I was cleaning up my photo album on my iPhone when I came across this picture.
This is the last picture that I took of my son before he had his first seizure. We were on an exploratory trip to Philadelphia ahead of our move here, and my son and my wife had spent the day looking at houses. To reward him for his patience, we took our son to Dave & Busters for dinner.
Looking back on that night, I think I saw him space out a few times, but I chalked it up to being exhausted from the day’s activities. Seizures weren’t a part of my vocabulary yet. So we finished our dinner and turned in our tickets for prizes, and we walked down the stairs towards the exit without any inkling of what was about to come.
Six months later, I look at other pictures of him that I took before epilepsy when life was simpler and my heart breaks for that boy in those pictures because of what he will eventually go through and be living with. That boy that never had a seizure. That boy that never needed an anti-epileptic. That boy that was never too tired to go to school. That boy that never threw a punch or spit at his parents. That boy that never hid under a chair and cried because he didn’t understand what was happening to his body. That boy that never had to feel like he was any different than any other boy.
As much as I wish my son didn’t have to go through any of this, I never wish that I could have that boy back from the pictures. This is my boy. This beautiful, strong, smart, energetic, epileptic, courageous, compassionate, empathetic boy is my son. His epilepsy is a part of him and it has changed many aspects of our life, but it could never change how much I love him.
Nothing will ever change that.
If you ask someone what they think of when they hear the word “epilepsy”, they will most likely answer “seizures”. That certainly would have been my answer if you had asked me even just three months ago.
Now, though, the seizures only scratch the surface.. They’re the easiest for us to identify and to label and put in to a box. What is harder to identify and harder to quantify are the many other symptoms and side effects of the seizures and of the medicines that are running rampant inside of his body, and for which we have no adequate words to describe to anyone else, never mind to him.
How do you explain to a five year old why he gets so sad that he wants to run away, hide, and cry? How do you explain why he can’t control his emotions and why we have to hold him down for an hour or more before bed when his impulses take over and he is hitting, and spitting, and biting? How do you explain why he can’t control his body, why he is always so tired and why he constantly trips and falls when he used to be so agile?
I can’t give him a reason when he asks why this is happening. I can’t fix him when he asks me to make him better. I can only tell him over and over that I love him when I am holding him down until his anger passes. I can only try to make those moments when he isn’t too tired to function feel a little more normal.
The house had been quiet at night since we left the hospital. My wife and son had been sleeping on our small bed while I slept on the couch in the living room. This temporary living arrangement was brought on by necessity since his elevated loft bed in the basement was not compatible with our new reality, and the stairs down to his room posed a hazard should he have a seizure and try to navigate his way up to our room in the middle of the night.
The first few nights back home, there was little sleep as we waited to see how our son would do. We’d been in this cycle where we would leave the hospital armed with a new medicine and no seizures only to find ourselves back in the hospital a few days later when the seizures returned in force.
But after a week without an incident, in a house filled with silence, my body was finally able to relax. The slender couch with the small “Home Sweet Home” decorative pillow (that I know I’m not supposed to use) were a welcome relief from the uncomfortable hospital accommodations.
With so many quiet nights in a row, my brain resisted reacting to the alarm bell my ears heard echoing through the halls, the unmistakable sound bellowing from my son’s vocal chords that announced the arrival of another seizure . I rolled off the couch, landed on my feet, and raced to the bedroom at the back of our apartment. I caught a glance at the digital clock on the microwave as I passed. It read 5:32, and I noted it so that we could measure the duration of the seizure, the mechanics of counting and measuring seizures having become rote.
By the time I reached the bedroom, the thankfully short seizure was already over and my wife was comforting my son. I laid with them for awhile before returning to the couch. This time, my body refused to relax, and I nervously stayed alert to listen for another seizure, which also came later the same morning, followed by another cluster that required the use of the rescue medicines before they dissipated.
They call these “break through” seizures because they occur in spite of the use of anticonvulsants or, in our case, three anticonvulsants and countless prayers. We’ve experienced enough of them to know what we are supposed to do, which is as terrible as it sounds. But we stayed home and, given our year so far, that is a marked improvement.