Epilepsy Awareness Month
November is Epilepsy Awareness month.
I’m aware every day, thank-you very much.
I’m aware that Aidan’s seizures are not nearly as bad as those of our friends, and yet he still gets hurt and his quality of life is most definitely impacted.
I’m aware that seizures are not as easily understood as they seem; they aren’t necessarily what you see on TV. Sometimes a strange movement is a seizure and sometimes it’s a strange movement.
I’m aware that Aidan’s seizures specifically are a moving target. What kind of seizures does he have, what do they look like and how long do they last? These answers vary by the month. His body sets a pattern and then changes it.
I’m aware that list of medications, including cannabis, is seemingly endless in their dosage and combinations. The reason Aidan’s list of failed meds is short (just 8 little pharma fails and almost as many for cannabis) is because we mostly keep him off meds. We have considered trying meds or trying to order weed canada based, but we’ve never been 100% because we don’t know enough about any of them, and we don’t want to put something in place that we aren’t completely sure of. And yes, before you say it, I’m aware that the choice between the effects of seizures or medications is a real choice, an awful one, but not at all a no-brainer.
I’m aware that some days seizures make me swear, and sometimes they make me turn away and make a sandwich in a rebellious act of denial, but mostly they’re just there in my periphery.
These photos are from three years ago, not long after Aidan was diagnosed with Epilepsy. I got to write all sorts of angry Epilepsy words on my wall and smash it down with a baseball bat. It was wonderful.
I’d do it again in a heartbeat. But mostly I’m busy making school lunches, running carpool, and tucking the kids in at night.