The following post was originally written by Kim Owens for FamilyConnect Newsletter:
At the age of 10, my son, Kai, began to lose his vision to an aggressive form of Retinitis Pigmentosa (RP). My dreams for his life were shattered with the doctor’s words, “blindness, no known cure…” I was blind-sided by his diagnosis and could see only darkness. I began reaching out to other mothers of blind children but most, like me, were lost in grief and fear. One mother told me that she would never allow her blind toddler to use a cane because she was afraid he’d be bullied. Another mom wouldn’t allow the retinal specialist to tell her pre-teen daughter that her vision would continue to deteriorate, because she was afraid hearing it would make it happen. Some people at church believed they could pray Kai’s blindness away, and a few dear friends simply disappeared. Grief, sadness and denial engulfed me. One day I came across a blog post entitled, “Spectator Grace” by Jennifer Rothschild. A successful author and speaker, Jennifer lost her vision to RP 30 years ago. She describes a painful conversation in which her mother would not speak with a reporter because the “wound still hurts” after three decades. I was stunned. And I became determined to find a different way forward.
It hasn’t been easy, but as Kai has been practicing a new way to see utilizing Braille, assistive technology, and orientation and mobility skills, I’ve also been learning a new way to see. My first lesson came through Centering Prayer. For years, I’d sat silently for 20 minutes a day, letting go of thoughts as they arose and returning to my intention of being open to God’s presence and action within. I gradually became aware that many of my thoughts centered on blindness included words like: darkness, loss, grief, loneliness, and joblessness. As I became increasingly aware of my inner dialogue, I began to allow myself to feel the pain of it all. I began to welcome the pain, instead of wasting my energy pushing it away. I began talking to a counselor and went away on a silent retreat where I collapsed in bed and cried for days. It was extremely painful to let go of the bright, shiny story I’d created on the day Kai was born, and even more challenging to let go of the dark, shadowy story I’d made up about blindness. But eventually the letting go created space for the shimmer of the present moment to appear.
My first conscious experience of this new way of seeing happened during one of Kai’s Orientation and Mobility lessons. I had dropped him off with the teacher and proceeded to the final destination where we would meet and enjoy muffins together. I was at the counter, ordering his blueberry muffin, thinking I had about 15 minutes before they’d arrive when suddenly, I caught an unexpected glimpse of a little boy wearing a hat and dark glasses, holding a cane. My heart broke and I was stricken with grief: my son, going blind, his future limited. And, that’s when I noticed it: HIS SMILE! In that moment, I chose to lay down “my story” and see the moment clearly. What I saw was a little boy who had successfully navigated crossing the busy streets with his cane! His joy was overflowing. He didn’t seem sad or frightened. He was radiating accomplishment and independence, reveling in what Jennifer calls “participant grace.” And I realized that I, too, had grace – spectator grace – which allowed me to join Kai in this new place.
Next, as a family, we inventoried our strengths and weaknesses, then began to fill the gaps with experts: therapists, vision teachers, successful blind mentors and parents of blind children who were thriving. We committed to implementing healthy ways to cope with our feelings. I have an autoimmune disease, which causes intense fatigue and joint pain, and stress makes it flare up; so in addition to my doctor’s treatment plan, I committed to daily Centering Prayer, swimming three times per week, and weekly counseling sessions. My husband committed to daily morning walks in solitude, monthly counseling sessions, and annual scooter trips with his friends. Our eldest son, a college geology major, practices self-care by taking rock climbing trips and participating in his faith community.
Six years after diagnosis, Kai is thriving at a mainstream high school: He attends honors courses and has ranked #1 in his class five years in a row. He independently reads braille, navigates with a cane, and advocates for himself by attending, and now leading, his IEP meetings. In addition to becoming the world’s only blind, sponsored skimboarder, he’s the drummer in a rock band that performs at local restaurants. He plans to apply for a guide dog, go away to college and become a meteorologist. Thankfully, we have been present and able to fully support his journey toward independence.
I’ll close by sharing a story I heard while away at retreat:
Two monks are walking along a path when they encounter a huge puddle. At the edge of the puddle stands a beautiful young woman wearing a long dress. She is unable to pass through without her dress getting soaked. The older monk offers to carry her across the puddle, and she gratefully accepts his help.
A few hours later, as the monks continue their silent journey, the younger monk erupts angrily, “How dare you carry that woman across the puddle? We took a vow not to touch a woman!” The older monk smiles at his friend and replies gently, “I picked her up and put her down hours ago, but you are still carrying her…”
Parents, will you join me in laying down the burden of the outdated stories we are carrying? Let us walk, instead, in the present moment where all things are possible.
We are only as blind as we want to be – Maya Angelou