Seizures Suck – In Case You Forgot
November is Epilepsy Awareness month. I don’t want it to be a competition between diseases and who makes the loudest noise and has the sexiest celebrity advocates and gets the most funding. Let’s cure breast cancer. Really. Now. While we’re at it, let’s cure Epilepsy too. This post should be full of helpful information to make this awareness month useful.
But I’m tired and don’t have it in me at the moment. Maybe later.
Right now I just feel like re-iterating that I hate seizures. I can put a positive spin on just about anything….except seizures. I hate that they’ve stolen hard fought for skills from Aidan. The ability to sit independently and eat independently. Gone. I hate that I have to ride a crazy merry-go-round of medications. I hate that Aidan’s first seizure drug turned him into a zombie and that his latest one made his seizures worse. Yes, worse. And it tasted like sour milk too. And the five medications in between have just done nothing. I hate that his seizures were so weird that it took me two years to figure out what they were. A little twitch? A freaky laugh? Jiggly eyes? Shaking hand? All seizures. I hate that Aidan’s seizures, in the big scheme of Epilepsy world, are not a big deal. I’ve never had to watch him turn blue, not because of his seizures anyway, and I’ve never had to take him to the Emergency Department, and I’ve never had to administer his rescue medication. I hate that I have to carry rescue medication and be ready at a moment’s notice to save Aidan’s life. But somehow, they really are a big deal. They’re jacking with his brain, which is an already compromised and very important part of his body. I hate that Aidan has bitten his fingernail right off from having his hand stuck in his mouth during a seizure, and he makes a scared helpless face because he knows it’s going to hurt like hell and there’s not a damn thing he can do about it. I just have to let it happen. I don’t like to complain to the other Seizure Moms who have it so much worse, yet I’ve been embraced by those very people because they too know that motherhood isn’t a pissing contest of heartache and victory. I hate that seizures make me use strong language like hate, and um, maybe other words too.
But November is also the month of Thanksgiving.
In a weird way, I’m thankful it doesn’t mean I have to give up hating seizures. I’m thankful that I’m actually not consumed in a moment to moment way by Aidan’s seizures. I’m thankful that Aidan has so much to celebrate. I’m thankful that there are good doctors researching medical marijuana. I’m thankful that my life is about more than just seizures. I’m thankful to be surrounded by a knowledgeable community of supportive people. I’m really thankful for other bloggers who share their stories.
I’m thankful to live this life of balance, where gratitude can live in this reality, where I can hate seizures with the same voice that I count blessings.