We're going on nearly a year since Trevor's relapse. That's nearly a year of daily seizures. Some days better. Some worse. None seizure free.
This relapse has been incredibly harrowing.
Honestly, at times I feel as though I never knew anything about epilepsy at all. These seizures and the care required are so different from his Infantile Spasms. We're now in a world of timers and frantic calls to the neurologist late in the evening and always balancing on the brink of calling rescue. I don't remember ever calling the neurologist in tears when he was a baby. His spasms, while sad and development stealing, somehow were never as terrifying as what we're dealing with now. Every time he has an extended seizure, and he's had several already this week, his very soul seems to be floating between this World and the Next. While I have great Hope about that which awaits us, I am not ready to say an earthly good-bye to my son.
I'll spare you all the details. I could never capture them with words anyway. I say that a lot. I say it because it's true. There is so much intangible and emotional that can not be shared, only felt. Those who have felt it in their own lives are with me in heart. I know that, because mine is with them in their joys and sorrows. We are a sisterhood. A brotherhood. A community in the most intimate of ways.
Monday night was particularly harrowing for us. Thankfully we avoided a visit to the (flu infested) hospital or calling rescue, but Monday night did include...
weeping with the neurologist on call,
creating a sick action plan which now includes a new, hard-core medication: Ativan,
sending a cryptic "come home now" message to my husband, who was just trying to enjoy a little slice of normal at men's basketball with Toby,
my mind magnetically drawn towards every epilepsy related horror I know exists while simultaneously fearing those I've yet to learn,
a feeling of complete and utter defeat by this terrible disease,
praying with my whole essence and wrapping my daughter, who shouldn't have to see these grown up things, in the deepest of embraces. There is an embrace that is more than physical. Yes, when I'm in my right mind I know that these moments are shaping her soul in beautiful ways. But in the midst of the intensity there is only raw emotion and heartache.
After days of rain, in a physical sort of irony, the sun is beaming on my shoulder as I type. As if even the natural world is reminding me that Monday is behind us now. Thank God. Wednesday, a new day, is here. He is with us. Trevor is still sick. His seizures, while violent, have been short. The most intense pain is over which is allowing room for peace to begin taking root again. Like a seedling breaking through the soil; small, fragile, fresh. I'm glad to feel that sprout in my heart. At times the harrowing darkness eclipses all light and I forget myself as my own brokenness is exposed. Sometimes faith is a fragile seedling.
And straightway the father of the child cried out, and said with tears,
Lord, I believe; help thou mine unbelief.
Mark 9:24
Comments