It was a little before bedtime. J was enjoying a treat of watching “Finding Nemo” (his favorite movie at the time). We sat on the sofa together. He was nestled in the arch of my arm; it was towards the end of the movie. I was 9+ months pregnant with O. C was in the kitchen, a glance away from us when the sound of snoring from J reached my ear. I was surprised! Not only because J doesn’t snore, but he had also never fallen asleep watching a movie, much less his favorite movie (and hasn’t to this day).
Laughing, I say to C, “Ha! Can you believe it? He’s snoring!” At the same moment, I looked down at him. From my angel, his eyes appeared closed; a slight movement and, I saw that J’s eyes were open. Fixed. His mouth was fixed as well. He was drooling.
No longer having the fear of a looming seizure in our minds, and because J was not convulsing (my rather “green” idea of what a seizure looked like), we thought he was somehow choking on something… a logic that defies the situation, as I look back today simply because he wasn’t eating and hadn’t moved from me to find anything to put in his mouth and choke on.
He was stiff as a board.
Quickly, it dawned on us that he was having a seizure and the ambulance was called. Minutes (or what seemed like hours) after this all began, EMS arrived, asking all the appropriate questions: “did he fall”; “did he hit his head or was it jarred in any way”; “what was he doing at the time”, etc.
His lips were purple.
More minutes passed after their arrival when the seizure finally released his body, and he was able to breathe. We still took the ambulance ride.
That was December 1, 2006. J was 1 month shy of turning 4.
On June 29, 2012 J underwent a left-sided functional hemispherectomy to alleviate the intractable epilepsy that had grown to be a monster inside his head. J was 9 years old. Today, 4 months after surgery, he is 2 month shy of turning 10.
I share this with you in an effort to spread Awareness of Epilepsy. A disorder that can hit anyone. At any time. For any reason. And change the direction of a life.
Epilepsy is a disorder that is hidden until it chooses to reveal itself.
Epilepsy can cloak its mischievousness within a mind, away from ‘public’ view.
Or Epilepsy can choose to send a body into convulsions of one type of another.
Epilepsy can send an active child into sudden silence for moments at a time.
Epilepsy can make a head drop, looking as though someone is nodding off.
Epilepsy can remove the freedoms of the privilege of driving from an independent adult’s life.
65 million people are living with epilepsy every day.
65 million people living with epilepsy also have loved ones, coworkers, caregivers, and friends who are also affected by their epilepsy.
65 million people living with epilepsy, and their loved ones, have their own “First Experience with Epilepsy”.
What is yours?
P.S. You can support those living with epilepsy during the Month of November by wearing purple, lighting your homes with purple lights and more. Watch this quick video to see how easy it is…