Every day, I wake up, head to the computer, and write about my life as the father of an amazing child who has epilepsy. I’ve been doing it for more than three years. But I don’t feel like I have any more answers now than I did when I started.
When I write, it’s from the perspective of a father trying to work out his thoughts and emotions on the page. I am not an expert. Wisdom comes from hindsight but we’re still in the thick of it. And every day I realize more and more of how much I don’t know.
I don’t know how to minimize his pharmaceutical side effects. I don’t know how long he’ll be on the ketogenic diet. I don’t know whether there is something out there we haven’t tried. I don’t know what new medicine or technology is on the horizon that will help. I don’t know how to prepare him for the world with epilepsy. I don’t know what to do to get my son to stop seizing. I don’t know if he ever will.
An expert would have answers. An expert would know what to do. An expert would speak from the perspective of someone who has been through it. They know how the story ends or how the tension resolves. I don’t have any of those things.
But here is what I do know. I know that I love my son more than anything. I know my wife and I are doing everything we can to keep him whole and to give him the best life that we can. I know that I need to be the best man and father for him. I know we need to take each moment as it comes and make the best choice we can with the information that we have. I know we have this moment right now, and I know that nothing else is guaranteed.
Also published on Medium.
It sounds like you know a lot, Dave! At least the most important stuff.
Thank you for writing this blog. I look forward to getting your posts.
My son is 15. It’s been 11 years since diagnosis . I have no answers either and because epilepsy is so different on every person, no way to even speculate where things will go . I do know though, you as his father know how to love and support your son and others in our epilepsy community by talking about things and your voice , is brave and honest . Thank you
Thank you so much for the kind words, Danielle. I’m grateful to know that we are all in this together. ~Dave
“An expert would have answers. An expert would know what to do. An expert would speak from the perspective of someone who has been through it. They know how the story ends or how the tension resolves. I don’t have any of those things.”
We’ve spent 10 years fighting this battle. Our daughter has baffled more than a half dozen neurologists, epileptolgists, and dietitians. I’m convinced that there are no experts other than the parents. We know what doesn’t work, we know how to advocate for our children, we learn to not accept no, we know how to fight the health insurance nightmare, we know what questions to ask the pharmacists, we know when things aren’t working, we know all about IDEA and FAPE so that our children get the educational resources they are legally entitled to. Most of all, we know how get to the next day and fight again for our kids healthcare.
Thank you so much for the insight, Ian. We’re just starting to hit the FAPE wall and are grateful to have a legal resource to help us. But as grateful as I am, I’m also saddened because so many families aren’t as fortunate as we are. But I think that’s part of why we are here and why we share and advocate for our kids and kids like them. ~Dave
Much to do with epilepsy and the brain is still unknown. The further into this epilepsy journey, the more the experts readily admit that they do not have answers for us. We’ve been told that we simply have to bide our time and wait for medical science to advance. Living with epilepsy is often all about living without answers.