Hey, how are you? We haven’t seen you in a while, but I know you are still there, waiting for us to let our guard down.
As soon as we do, I know you will be there like the unwanted guest you are. Everyone keeps telling me it’s going to be OK and maybe one day you will just go away.
But they don’t know you the way I do.
I know how insidious you can be. Every day you somehow find your way into our home, like in the daily meds that may or may not be affecting my daughter’s development. These poisons I have to put in her time and time again when you strike, hoping she comes back to us. The meds are required to stop you lulling her into a coma-like state while her body and brain recover from what the doctors have described to me as running a marathon.
Even after you’ve left us all beaten and broken, we have days of recovery because it takes a mountain to crush you.
And she’s so little. She has no idea what’s happening when you’re here, why she’s so uncomfortable, tired and out of sorts. There’s crying that can go on for days. She was so proud of her little self when she learned to walk this year, but when you come it’s like watching her learn all over again. This time it’s only frustration and confusion when she takes those first unsteady steps. Sometimes you only get one side of her, other times you take it all.
I never realized how much you would hurt all of us. I’ve had to explain seizures to children that should be worried about Legos and princess parties. You’ve brought birthday parties to a screeching halt and turned days at the lake into races against time because one or both of us forgot the meds that stop you. We haven’t made that mistake often, but it seems like you always know when we do.
Finally, me. What have done to me? She is still so little that her seizures are my seizures.
My alert is always on high. I watch her like a hawk, and I’m always on the ready. Why did her arm twitch? Has she been staring for more than ten seconds? Is this it? Is this on? Am I ready for this again? How long this time, and is this the one that will scar her brain and take something away from her, or God forbid, her from us?
I never knew real fear or pain until I met you.
I had no idea how big and scary of a monster you can be. I hate you, epilepsy. I hate your unpredictability, the medicines it takes to stop you, and the price we are all paying for you.
Strangely though, I’ve learned to live with you as the unwanted family member.
With every met milestone and every day that passes you’ve taught me the meaning of “seize the moment” because it can be gone in a second. I hold all of my children tighter and longer, but I can’t let you win. She is a warrior, we are fighters, and one day we will say goodbye to you. But, I will know we are better people for having known you.