In the dark of night, I rush through the hallway to the bedroom next to mine. I can hear my son’s rapid breath and the gurgle of saliva pooling in his mouth.
Lit by a stream of moonlight from the window across from his bed, I see his slender body in a familiar unnatural shape. His torso is curved to the right, his arms are outstretched with hands contorted in tight fists. His head is jerking side to side. His eyes, normally thoughtful and gentle are now rolled upward, as if pulled by unseen strings. The storm in his brain fires electricity throughout his body as his legs shake rapidly under the blanket.
Crawling into bed next to David, I cradle his head onto my chest, holding him close to minimize the jerking of his head. I breathe in deeply as my son’s body continues to convulse. Exhaling slowly, I feel my intense love for him mixed with the ache of deep sadness. And I wait for the seizure to end.
My son suffers from Lennox-Gastaut Syndrome, a rare type of epilepsy. He experiences daily seizures. He doesn’t speak, is minimally able to communicate and needs full care in all aspects of living. He often sleeps much of the day- a side effect of his medications.
I experienced the first decade of David’s life as a battle against seizures, and a race to save his developing brain. It was an all out war. The weapons were an arsenal of medications, brain surgeries (3 of them), an electrical implant, special diets and high dose vitamins, as well as multiple non-conventional types of energy healing.
After the electrical implant failed to bring relief, a friend of mine, ever so gently said, “Lori, you need to come to acceptance of David’s condition.”
I was shocked she would say such a thing. Acceptance? This was a fight against a brutal epilepsy monster that was robbing my son of his vitality, safety and ability to thrive.
How does one accept the unacceptable?
This is a question I have held with deep reflection and reverence for the past seventeen years. I don’t have an easy answer that can be quoted in a sentence or two. Accepting my son’s condition has been a process and a practice; one that requires dedication and devotion.
Acceptance does not mean giving up on the quest for a better quality of life for my son. Nor does it mean convincing myself that I’m ok with a situation that doesn’t look or feel ok.
I’ve come to see acceptance as foundational for responding to life’s challenges. It’s very much and inside job where I acknowledge the situation I am facing as well as my internal reactions to it. It is the act of embracing life just as it is, with all of its pain, heartbreak, confusion and injustice, as well as its tenderness, love, joy and grace.
The more I approach life this way I find that practicing acceptance has become a doorway to compassion for myself and others. I no longer need to fight against what is. On the other side of this door I am able to engage life with open arms, a compassionate heart and clear eyes. What was once unacceptable is now embraced as part of the whole of life.