Break On Through

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.

The Waiting Is The Worst Part

I spend a lot of time waiting for explosions.

These explosions come from different places and take many forms in my life. Lately, they’ve come in the form of seizures and an angry reaction to a new medicine.

Each explosion creates a new crater on the landscape in my mind as I hunker down in the bunker waiting for them to subside. The snow outside tonight makes me think of the soldiers in World War II, freezing in foxholes in the dark night of the Ardennes Forest while the Germans shelled them, destroying trees, bodies, and spirits alike. The physical damage is easy to rationalize, and to justify, and to accept. The damage to the spirit is harder to quantify, and it brings with it the wonder when the explosions will come again.

epilepsy explosion shellshock

The waiting is always the worst part. Waking up to every sound at night wondering if it’s another seizure, especially when there were none the previous night. Wondering if the next episode of my child not listening will escalate in to biting, and spitting, and the horrible things that no child should ever have in their heart. Only, you know with what’s happening, that is not really your child. Except, it is. And there is nothing you can do about it except try to calm things down, and hope that it will be the last time. The last outburst. The last bad reaction.

And that’s when the waiting starts…all over again.


Things I Never Wanted To Learn

In the past six months, I’ve learned about things that I never wanted to learn.

It started during a late summer thunder storm, one minute standing in the rain laughing at the lightning, the next minute seeing the first seizure. One seizure is too many, the many seizures that were to follow more than any child should endure or any parent should see.

A diagnosis. A prescription. Our boy not himself, a rage brought on by the side effect of the medicine that was meant to help him. Then a new prescription, a tough transition, but months of relief from the initial chaos.

epilepsy dad diagnosis hospitalI learned what epilepsy was. I learned that 1 in 26 Americans will develop epilepsy in their lifetime. I learned what it felt like to stand helplessly by while a parent watches a child go through something that they cannot stop and cannot take from them.

Then the ticks. A few at first, then more as time went on until they happened too often to be dismissed. A fortunate case of the flu exacerbated the ticks enough to bring us back to the doctor and identify them as another type of seizure, made worse by the medicine that we thought was working so well. More than a week in the hospital, being sent home without a definitive answer.

I learned about the different types of seizures. I learned that being sick made seizures worse. I learned that there aren’t always answers, just educated guesses and a course of action to take until it changes. From the sounds in the other rooms on the pediatric neurology floor, I also learned that we weren’t alone, and that, in many ways, we were lucky.

We rarely get to choose the challenges that are presented to us as we navigate our lives. But we do get to choose how we respond to those challenges. We can choose to face the challenge, or not. We can choose to learn the lessons and the nasty bits the come along with them, or ignore them. We can look beyond ourselves and focus on the greater plan, or we can turn inward or run away.

I never wanted to learn these things, and I certainly never wanted to learn them in this way. But I learned them because I needed to learn them. Because I’m a father of the most amazing boy that has epilepsy. And because it’s not about me.