I came across the video while perusing Facebook around midnight. You know, wasting time when I should be getting valuable sleep before an active next day with my son, and I saw the title- Care and Cure 2014. I’ve wanted to go to the Care and Cure benefit for a few years but haven’t put aside the money. This year we are going and tears spring into my eyes I’m so happy. Obviously, Epilepsy is close to my heart but more importantly, I’m a Mom now. Pediatric Epilepsy rips me in two. I don’t even know how to put my jumble of emotions into words, or if I even can since the keys are already a swimming blur… So I watched the video once, twice, three times and then just kept pushing play over and over again. Sitting on my couch, one light dimmed since my boys had gone to bed, I cried and I cried- just one more time, just one more time- until I could only see watery waves of black and white.
I wanted to share it with everyone. And I sat there thinking how do I do that??? How can I make everyone see, more importantly, feel what it does to the lives of these precious beings the world is supposed to protect and nurture??? I don’t know and I can’t. I feel frustrated, and like everyone who has a cause close to them, I believe mine should be the most important and urgent. And people have to push this cause through the maze of others, into the forefront, on its knees, begging for a hope, an optimism, a proximity to a cure. Make it seen, make it known, make the crippling path of these fragile lives count… I thought my chest would explode.
So I went to bed that night lost and sad, for lack of a better word, and woke up the next morning and watched it again. Same reaction- the first part of the video is me, the second part could also some day (heaven forbid) be my life. I needed to sit down and write. Here I am.
Watching the intro to the video, hearing the snap and crackle, like the sound of old lights in movies in a dark basement, resonated with me. And then watching the words “pop” in random order as they tried to unsuccessfully put together a message made me think; this is my brain during a seizure. This is it- neurons misfiring, popping, sizzling as they find the wrong receptor and shoot into space. I’m trying to catch them, bring them back to their homes, with arms rigid and flailing, just like the neurons- lacking success.
Those few short seconds of the video mesmerized me.
Then television fuzz, and the end of a storm. Drained. (Sounds/looks about right.) I could relate until all of a sudden chirping birds and his little face appeared, head bobbing with a stream of drool dangling from his lips. That’s where I lost it. All I wanted to do was reach out and uncurve the bent little hand rubbing his eye and hold it open, flat, in between my warm palms. Make whatever possible piece of him normal. I wished I could sit next to him and prop his head against me and allow him to just stare at the world, not grasp brief snippets with each labored bob, but I think to myself; would he even process what he sees? Can he? To look in his dark eyes and see if there is yet something brighter behind them. Probably not… and since his body’s never truly been his own (he was diagnosed at 4 wks) he’ll never know the difference. I’ve been robbed of minutes. He’s been robbed of days, months, possibly decades. And so has his family.
They all popped up- those permanently traumatized, those struggling but living life and a few who’ve been blessed to come out on the other side but not before experiencing the fear of uncertainty and the absence of normalcy. That’s all any of us, especially children, wants- certainty and normalcy. Who doesn’t want to find peace (in the bubbles), leave their mark (in sidewalk chalk), jump (into a pool of toys) and be caught?? The simplest pleasures…
I’ll probably watch this clip a million more times tonight, tomorrow, in reflection, and simply whenever I ponder the mystery behind our commonality- my Epilepsy those first few seconds in black and white, theirs in a whirl of indistinct color. I hope one day Ari, Chloe, Rowdy, Nico, Johnson, Audrey, Charlie, Tiger, Alex, Natalia, and Anabella will see rainbows when the sun shines through their bubbles, leave marks of inspirational accomplishment for others, and jump without hesitation or needing to be caught.
I wish for them these minutes, those moments… and for all of us to care enough to cure.