We’re more than two and a half years into our journey. For a third of my son’s life, he’s lived with seizures. It’s getting harder to remember the time before them. The carefree days before hospitals and therapies seems more like someone else’s life.
Our new life doesn’t feel like it is getting any easier, even being so far into it. There is no resolution. There are no reasons. There is no consistency except for the looming threat of another seizure. It is chaotic to manage his diet, his medicine, and his appointments. There is a never ending stream of complexities in our lives. On the good days, it feels like we’re barely treading water. On the bad days, it feels like we’re drowning.
We’ve met a lot of families that have been dealing with seizures much longer than we have. I look at them as if they are the strongest people in the world, dealing admirably with such an impossible path. They somehow figured out how to manage the unmanageable. Their perspective keeps them sane and grounded and able to function in such a complex system. I’ve often wondered if we would find that place, and if someone on the outside would think the same thing about us.
I keep waiting for a switch to flip, for that “a ha” moment where the mystery of how to navigate this life is explained. So far, it hasn’t happened and it’s frustrating. I’m a smart guy. I figured out how to ride a bike, drive a car, program a computer and build a robot. But there is no pattern in what is happening. There’s nothing for my mind to organize around and to sort out. We are in a constant state of reaction with very little that we can control.
The lack of control and my inability to figure it out makes me feel like we’re not there yet. People around us use words like “strong”” and “brave” but I can’t let that in because I don’t believe it. Every seizure, every outburst, every failed medicine, every closed off path, every false hope. As much as I try to hide their impact from the outside world, it feels as if I wear them as visibly as I wear clothes. I’m only forcing myself to do what I need to do for my son and my family.
But, maybe, that’s what everyone else does, too.