Dear Little One: I Know Epilepsy too…

I didn’t need to see it. See them. I’d already lived it, or at least my own version. Because if anything, I’ve learned we’re all different, but not in the pain. That we share as deeply as two strangers who have never met but live in the same body, can.

So I didn’t need to watch the monitors or listen to the long explanation of what the squiggly lines, then the spikes mean while viewed on a screen with the image of the actual patient seizing at the same time. In fact I stood outside the door, as far away as I could from the stacked monitors in that room, and I wanted to run directly into whatever rooms were occupied. I didn’t want lifeless computer readings but the tangible struggle of life. I wanted to grab those children, those toddlers, those teeny babies with wrapped heads in their small beds or cribs, and hold their hands… telling them, I’ve been there before. Somehow convey warmth in a very cold situation. We may be years, and even worlds of experiences apart, but we are inextricably bound by the mystery of what ails us, and the search for its cure.

I know it makes no sense and offers very little solace to anyone else, especially a small frightened child new to this disease or one that is fragile from exhaustion because of it, but I wanted to cradle them tightly, and don a matching head full of the leeds, wrapped in gauze, a mane of electrode wires. I wanted to provide the comfort and solace of compassion. Familiarity, or more appropriately, commonality, in the unfamiliar. But I was a stranger and had no right or the privilege to be able to try and make their lives any brighter… sounds ridiculous to suppose I’d be able to lighten their circumstances.

It’s a special world you step into when the fragility you’re exposed to is one of a child. One of a helpless little being still discovering and developing in the world. Or at least, ideally. I walked through those halls and despite my attempt not to glance in any of the rooms for fear of invasion of privacy, I caught glimpses of desperate, worn out, tired parents that looked at me and only saw this woman staring at their situation as one far removed. After we passed that first room, all I wanted to do was say I’ve been there. I was there three nights ago… I was there two nights before that. I have been there over and over and relentlessly over again. At home and in those sterile rooms.

It doesn’t lessen anyone’s pain, worry, fear or heartache – but I want you to know that as I sit here writing tonight, those children’s faces are still in my mind and the battles they must endure weigh heavily on my heart. If only the power to free those precious babies from an evil they don’t understand, already existed. The looks in those little eyes, and those of their parents, would be far different. 

Walking through the halls, I felt my lips quiver and my eyes start to water. And in my head I spoke to them- you precious little babes, my heart aches for you, wants to heal your hurt… I promise there are so many of us working towards making you feel safe and a whole.

I guess, little one, I want you to know – this is a world not without challenges, but it is also a world not without compassion, love and empathy for those we may never meet, but intuitively understand. I saw your precious face tonight and I promise you we are tied by more than a disease and a purple ribbon… You and I are tied by the will to fight for something better. For ourselves. For life.

Just

      keep

              fighting…

Please.

 

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