“Fifty million people worldwide with Epilepsy, one third of whose seizures can’t be controlled … Those aren’t just numbers; that’s my son.”
I know, I know … but still.
My son Aidan was born with a significant developmental disability 11 years ago. We’ve done hard time in the hospital. We’ve worked with, questioned, argued with our fair share of professionals over the years. I’m an introverted conflict-avoider by nature and God has stretched me so far beyond my comfort zone … and there I found love.
Deep abiding love for Aidan that comes from having fought so hard for his very being, grounded abundant love for my husband who has held me up and stood by my side, joyful love for my neuro-typical son who brings me laugher. It’s not hard for me to point out God’s provision in the form of professionals, community and family that supports us … indeed, my cup runneth over.
Perfect love casts out fear … and it did so with little resistance for the first nine years of Aidan’s life.
But seizures, oh the seizures, they bring such hefty doses of mind-boggling fear.
They crept up on us so quietly. We even called them Aidan’s “Hallelujah” arms as he seemed to lift his hands to heaven like a good little baptist. Oh thank-you Jesus for weird survival humor.
Then they started to steal his independence slowly. First, Aidan could no longer feed himself because his food would go flying as his arms jerked. Then there were the medication trials, the ones that stole his sweet smile and put him in a zombie-like trance.
I dove into research and asked tons of questions and pushed my neurologists.
Perfect love casts out fear … but grim knowledge and hopeless fact-finding places it heavy on my heart.
Fifty million people worldwide with Epilepsy, one third of whose seizures can’t be controlled … those aren’t numbers; that’s my son.
Love keeps fighting. My husband and I cry and pray and fall forward into unity.
But Aidan bites his hand and propels himself out of his chair and falls off the bed and hits his head and stares at me pleadingly, knowing a seizure is coming on … and I stand helplessly by and swear like a sailor and get ready with impotent kisses.
Seizures rack Aidan’s body and fear pushes back.
I refuse to make my faith a trite comfort. I won’t pretend I don’t struggle so others can see the “strength” of my faith. I don’t have the energy to buy the platitudes that reduce my God. I rest in the peace that passes understanding and, oh I want to curl up and stay there.
I don’t want this fight. I can’t watch Aidan’s pain. We’re all hurting.
I can only live in one moment, this very moment in front of me, and sometimes fear owns it.
But there’s the next moment too, where maybe, oh please sweet Jesus, perfect love casts out all fear.
When Heather is taking a break from the myriad of tasks involved in raising a child with a disability, she can be found singing in her kitchen using wooden spoons as microphones. She lives in beautiful New England and blogs at http://teamaidan.wordpress.com/
Image credit: Yogendra174