Another Purple Day
Saturday is Purple Day, the day to bring attention to Epilepsy.
I should probably say something. Maybe come up with some facts for you, an elevator speech. But Epilepsy is so much more than numbers and figures to me.
It’s names and faces.
It’s friends who carry around pictures of half of their child’s brain post-surgery. It’s a girl who is taking advantage of these seizure free months to ride a sparkly pink bike. It’s kids learning to use talkers, in spite of these daily interruptions of the brain. It’s parents on a seemingly endless ride of pharmaceutical trials. It’s the ones who are sick of that ride and press against the norms of science to search for new solutions.
And it’s Aidan. I look into the face of Epilepsy every day when I look into his beautiful blue eyes and soft cheeks. Sometimes I long for the days when Epilepsy was just rearing it’s ugly head in this house. When the choice between side effects of meds or seizures was easy. There really was a day his seizures didn’t seem to take such a toll on him. We’re past that now. Seizures are a thief in our home.
I think about the ones who have seizure control, who have either won this battle or are claiming a seasonal victory. I think of the ones for whom Epilepsy is the monster under the bed. They feel its presence lying in wait. And I think of those of us who are battle weary, who hate Epilepsy with the heat of a thousand suns.
Like everything else in this world, it’s a Both/And journey. The heartache of watching my boy’s body break is gut wrenching and yet there is so much more to him. I get sweary. And discourged. And tired and scared. But I will always hold hope closest to me. Not the hope that turns away from despair, dismissing its pain, but the kind that looks it squarely in the face and says, “you will not pull me under.”
So join us this saturday in wearing Purple to give the metaphorical finger to the Beast and celebrate the people who battle it each day.