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.
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.
It’s been five years since my son’s first seizure. He still seizes on most days. The side effects of the seizures and the medications take their toll on his brain and his body. He can’t do all the things he wants to do, and he sometimes struggles with the things that he can do.
It’s been hard.
But other people have it worse.
Are we the lucky ones?
Taking handfuls of pills every day to keep seizures under control isn’t lucky, but we have access to healthcare and can afford his medication.
Falling behind at school isn’t lucky, but he goes to school.
Having behavioral issues isn’t lucky, but they are rarer than they were.
Managing mental and physical fatigue every day isn’t lucky, but he can walk and talk and play baseball.
Having seizures every day isn’t lucky, but my son is still here.
There is always someone somewhere that has it worse. That’s the trap of comparing one’s situation to another. But minimizing our anger and frustration and pain doesn’t make them go away. It doesn’t make my son’s seizures go away, either. It just takes me away from my feelings and makes me feel guilty for having them.
We’re not lucky because his situation is better than someone else’s. There is nothing lucky about epilepsy and what my son is going through.
But I do feel lucky.
I feel lucky because he’s my son.