My heart has been an avalanche this year as Trevor's seizures have re-emerged. While I share my heart fairly openly, there are many layers of which I speak nary a word; some pain is meant to be private.
One source of shareable pain and frustration is the perpetual bumping up against those who cannot seem to grasp the staggering, impetuous nature that is chronic, catastrophic epilepsy. I tend to be good with the words, yet try as I might to apply the most bold, expressive language possible when describing Trevor's seizure disorder and how it impacts our lives every day, every moment, still, there are those who minimize or remain blind to our struggle. Some, even as they bear witness to his seizure disorder with their very own eyes.
Jonathan feels we own a bit of the blame for this. We live quietly and strive for peace "in spite of". In short, we do a damn good job of "holding it together" which allows room for misinterpretation by the undiscerning. They miss the tragedy of the seizure event and focus instead on how we carry on after it's over. We carry on because we have no choice. We carry on because he wants to live. I'll write that in poetry form some day - how so many of the choices we make, the way he inspires us to greater courage and tenacity than is our natural bent, flow from his desire to live.
Trevor does not have "once in awhile" epilepsy. He has unrelenting, attack him daily, epilepsy. He needs a watchful eye on him, always. Every moment of every day. If we do not have a state-paid caregiver, that responsibility is relegated to his family; most frequently myself or Jonathan.
He needs constant care because epilepsy is a treacherous, unpredictable villain. If epilepsy were polite enough to tell us when the next seizure will strike and how long it will hold him hostage, oh how different our lives would be. Still sorrow laden, because I have yet to encounter anything personally so tragically heartwrenching as watching him seize, but at least there would be a sense of control, of knowing. But epilepsy is not polite. I say again, epilepsy is treacherous and strikes whenever it pleases.
This morning, for instance. Before I'd even finished my second cup of coffee, a three minute seizure ravaged him and shredded us. Sleep at least comes for him afterwards, allowing him space to recover. I'm not sure my own heart will ever recover this side of Eternity.
I try to convey the pain, in hopes of leading understanding by the nose. Over the course of the past eleven years, I am continuing to learn that you cannot force enlightenment on anyone. It's a matter of the heart. I only know One who can remold hearts.
There are those who intuitively understand, with whom our hearts may knit; there are those who will encounter the walls of protection we erect to shield our hearts from bitterness when met with ignorance. All the while, we will continue our pilgrimage living as fully, as faithfully, as possible, never without holding unspeakable sorrow in our marrow waiting for the day when all tears will be wiped dry. Always with an eye towards the Horizon.