A New Way to See
A mom grapples with grief and fear when her son loses his sight
Originally published 8/20/18 by APH Family Connect Newsletter. Revised 11/12/25.
The bright dreams I had for my ten-year-old son’s future dimmed when the doctor said “degenerative sight loss, no known cure…”
I connected with other parents of blind children through Facebook but most, like me, seemed engulfed by grief and fear. One mother told me that she would never allow her blind toddler to use a cane because other kids would bully him. Another mom wouldn’t tell her young daughter of the pediatric ophthalmologist’s diagnosis of progressive sight loss, because she was afraid that telling her would make it manifest. People at church believed they could pray Kai’s blindness away. And several close friends simply disappeared.
One day I came across a blog post by a successful blind author and speaker, who’d lost her vision when she was younger. A television journalist wanted to promote her work and asked to interview her mother. However, her mother refused to participate saying, “the wound still hurts.” Stunned that the mother’s grief held her captive thirty years later, I became determined to find a way forward.
As Kai learned braille, assistive technology, and orientation and mobility skills, I also worked to find a new way to see. My first lesson came through my mindfulness practice. For more than ten years, I’d sat silently for 20 minutes a day. I gradually became aware that my thoughts on blindness included words like: darkness, loss, grief, loneliness, and unemployment. As I became increasingly aware of my inner dialogue, I committed to allowing myself to feel the pain of it all during those daily sessions. The daily release of emotion improved my energy and outlook. I began talking to a counselor and attended a week-long 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 release 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 to see happened during one of Kai’s Orientation and Mobility lessons. I dropped him off with the instructor and proceeded to the bakery where we’d arranged to meet. I was at the counter, ordering his blueberry muffin, thinking I had a few minutes before he and his instructor would arrive when suddenly, I caught an unexpected glimpse of a little boy wearing a hat and dark glasses, holding a white cane. My heart broke, stricken with grief. My beautiful son, going blind, his future limited.
That’s when I noticed it: HIS SMILE!
In that moment, I chose to lay down “my story” and see clearly. What I saw was a little boy who had successfully navigated crossing the busy street utilizing his white cane. He didn’t seem sad or frightened. He was radiating accomplishment and independence.
Thirteen years after diagnosis, Kai is about to graduate Summa Cum Laude from the University of Georgia. He’s the leader of a popular jazz band, and he just applied to grad schools in New York City. He’s living the life of his dreams.
I’ll close by paraphrasing a Buddhist parable:
Two monks walked along a path together. They came to a stream and found a young woman standing at the edge. She was unable to cross without help. The older monk offered to carry her across, and she gratefully accepted.
A few hours later, as the monks continued their silent journey, the younger monk erupted angrily, “How dare you carry her! We took a vow not to touch a woman!”
The older monk smiled at his friend and replied gently, “I picked her up and put her down hours ago. Why are you still carrying her?”
Parents, will you join me in laying down the heavy burden of our grief and fears about the future? Let’s dwell in the present moment where all things are still possible.
Wonderful!
Love this 🧡🍂