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.
I 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.
2 thoughts on “Things I Never Wanted To Learn”
Thank you for sharing your experience.
My 2 old daughter has epilepsy as well, and we have been fighting it for tha last 6 months.
I wish you and your family all the best, and I will keep following your blog hoping for good news.
Thank you, Marcos. I wish the best for your daughter and you’re family. We’re all in this together! ~Dave