In addition to being National Adoption Month, November is also Epilepsy Awareness Month. It’s very fitting for us because Max was diagnosed in November 2007. Each November, the memories of that time all come back and it really is still raw and emotional. Even 5 years later.
This month (and every month really), most people in the Epilepsy community want you to know seizure first aid. They want you to know what to do in the event someone near you has a seizure. They want you to know that Epilepsy is not contagious. But me? I want you to know how common it is. How even though almost 500 new cases of Epilepsy are diagnosed daily in the United States alone*, Alzheimer’s gets the most dollars when it comes to neurological research mostly due to the dollars that the subsequent pharmaceuticals bring in. I’d have to guess that Autism is pretty high up there as well.
I want you to know that in America, Epilepsy is as common as breast cancer and takes as many lives. I’ll say that again, it takes as many lives. Yes, people actually die from this, because of this.
I want you to know that because he has Epilepsy, Max may not be able to get a driver’s license or go away to college. And if he does, I’ll be freaking out about how much sleep he’s getting because stress and lack of sleep are seizure triggers.
He has a hard time making friends and has the social skills more aligned with those of a toddler than a 5-year-old. We’ve actually never done a playdate with anyone.
He doesn’t sleep soundly so he’s tired a lot (and we all know that tired = cranky when it comes to kids) and lacks the stamina that most kids his age have.
He has to take medication twice a day every day. He can’t miss it. The first time we forgot to give it to him, he had a seizure. His neurologist said it was a coincidence but I’ll always wonder. By the way, that medication costs $350 a month because he has to be on brand name. Even with a letter from his doctor, insurance won’t cover it at the same rate they cover generic. And now, that medication is on the FDA “watch” list as habit-forming. Awesome.
I just want you to know that even though his seizures are well controlled by that expensive medication, the unknown of seizures is frightening. To never know when one will hit, what causes them, or what kind he’ll have is kind of exhausting. To wonder if today is the day he’ll have one at school and hit his head or on the school bus. Not to mention wondering how all the attention he gets and one on one time he requires is impacting his brother. It’s all enough to bring me to tears and does so almost daily.
This November, please spend a few minutes on sites like this one, this one, and this one and learn a few things. Choose a day to wear purple in support of Epilepsy awareness and in support of my buddy. My Max.
* Facts obtained at www.epilepsy.com