Refractory epilepsy is cruel.
Not only does it harm his body, it also plays with my heart and mind.
A good seizure day or two has me secretly hoping that maybe I've finally found the right combination to finally slay the dragon. Maybe it was that extra coconut oil, or that specific brand of magnesium, or the specially formulated B-6, or the new medication, maybe that was all he needed? And by the way, a good seizure day doesn't have to mean no seizures, simply fewer or less strong events will do. That's all it takes for my heart to begin brightening, like a drooping flower that feels the warmth of the sun begin touching her petals.
Hope is reckless and remembers not.
Positive, short term, responses to medications or natural therapies are known as honeymoon periods.
Hope has amnesia and forgets that Trevor is a honeymooner.
The trouble with honeymoons is that they all must end.
Shortly after posting a cheery status update on FaceBook the other day, Trevor came stumbling into the livingroom to find me. His face was asymmetrical. His right eye was deviating. His right arm elevating. These are all the tells that a seizure was beginning. Sometimes, as bizarre as it might sound to those who are epilepsy novices, he can sometimes continue talking through a seizure. The neuro-surgeon tells me this is positive, though he'll make no promises, regarding speech retention should we move forward with the completion of his hemispherectomy. Big seizures steal his words from him. I held him, eerily silent, feeling the clonic pulsing, as the seizure moved through his little boy body. This was not the kind of seizure that begets hope. By the end of the event hope lay in smithereens on the floor around us.
Catastrophic, refractory epilepsy, is so very, very cruel.
But hope has amnesia.