The Shape of Grief

A mother loses focus when faced with her son’s blindness

Kim Owens with her son Kai, before and after his blindness diagnosis

My son Kai has always had a fearless streak. He’d run in the door from kindergarten, toss his backpack on the floor, and sprint outside to play. He was the first of his friends to skateboard down a six-foot half-pipe and to backflip off a diving board. But at the age of ten, doctors said he was losing his sight to a degenerative retinal disease with no known treatment or cure. His world had become shadowy, shimmery, and scary. Now, he clung to me, anxious and afraid.

I didn’t know anyone who was blind and imagined a sedentary life of darkness and isolation. I worried myself into exhaustion, but at night I’d toss and turn, eventually slipping out of bed to Google “childhood progressive blindness.” In chat groups I learned that other parents facing this news dropped everything to fundraise, then hit the road to fill their child’s visual memory bank with epic sights and adventures. I felt too sad to plan a trip.

It’s said that grief takes many forms and moves through stages, spiraling and circling back, but mine took two distinct shapes: Breasts. My subconscious couldn’t let go of them and the obsession flowed into my hobby of watercolor art. I painted topless mermaids and nude women sunbathing. When I noticed my teenage son, Cash, casually perusing the paintings, I realized that my obsession centered on a fear that blindness would cause his little brother to miss out on typical coming-of-age milestones. Would Kai ever reach second base? Would he experience the passion and turmoil of first love?

I decided to purchase an illustrated book about puberty. Kai couldn’t read regular-sized print so at bedtime we’d snuggle up together and I’d read aloud and describe the images. After a few nights, he said, “Mom, this book is weeeird!”

That sparked a different, more lifelike idea. Santa could bring the boys the latest Sports Illustrated swimsuit issue! I discussed the gift with their dad, whom I’d met after he caught my eye across a crowded bar. How would Kai meet women if he couldn’t make eye contact?

As a massage therapist, feminist, and liberal, gifting magazines of bikini-clad models felt unhinged. I didn’t even know if Kai was straight. But these were strange, deeply confusing, and emotional times. To ease the sense of loss that weighed heavily on my chest, I was willing to try almost anything.

In the wee early hours of Christmas morning, I rolled each magazine tightly, bound them with bright red ribbons, and stuffed them into the boys’ stockings. Later, I watched as Cash unfurled his, did a double take, and with wide eyes said, “I got a swimsuit issue!”

Next, Kai, who still wanted to believe in Santa, unrolled his magazine, brought it up within one inch of his eyes, and squealed, “I got one, too!”

I sipped coffee and picked at an iced cinnamon roll as the boys flipped the pages and giggled self-consciously. Kai quickly lost interest and moved on to unwrapping Legos and Beyblades. Cash lingered on the images longer before opening his new rock-climbing gear. Forgotten, the magazines migrated to the back of the toilet with a couple of old word searches and crossword puzzles, but my obsession with breasts didn’t wane.

A family in our community gifted us a trip to Disney World so that Kai could experience the Festival of Lights at Hollywood Studios theme park. It was a generous offer, and we were thrilled to spend the New Year’s holiday away. During the day, we spent hours at the Magic Kingdom helping Buzz Lightyear defeat Zurg, and at night we gawked at the dazzling, sparkling holiday lights while sipping hot chocolates piled high with sticky marshmallow crème.

While driving home, I thought, Wow! That was the perfect getaway. I could die happy today. Then, my brain served up a visual of me swerving our car into a big rig, causing us to ricochet into the guard rail, killing us instantly—no suffering.

Horrified by these shocking thoughts, I scheduled an emergency session with my therapist. She explained that suicidal ideation is a common occurrence among grieving people. My belief that the trip was as good as it gets, combined with my fear of the unknown, triggered this scary thought process. I could no longer envision Kai’s future, and that terrified me, so she suggested I connect with blind adults.

Gathering my courage, I reached out to a man who had lost his sight during college. He chuckled awkwardly as I confessed the nude paintings, the graphic puberty book, and the swimsuit magazines. “I’m afraid Kai will miss out on typical teenage milestones/never fall in love/that his peers will stop including him/that he will become lonely/sedentary/isolated/this is going to sound strange/I can’t stop thinking of breasts/breasts he will never see—”

Interrupting my frantic, breathless monologue, he said, “No worries, breasts feel better than they look anyway!”

The answer was so obvious that my chest heaved with relief. Of course! Kai’s Teacher of the Visually Impaired had recently explained that as he lost sight, he’d read braille and navigate with a white cane. He’d access the world primarily through his other senses. In the case of breasts, like braille, his sense of touch would suffice. I felt stronger knowing that sight loss would not limit his ability to experience intimacy and pleasure.

Kai’s fearlessness and zest for life returned as he leaned into the blindness skills he learned at school. He started skateboarding again. He made adaptations that allowed him to surf, skimboard, and snowboard, too.

I shifted my focus from worrying to developing friendships with blind adults and mentors. The more I immersed myself in the blindness community, the more I understood that my fears and grief were based on ignorant and ableist views. I’d believed my typically-sighted experience of life was superior, but now I envisioned a happy, fulfilled life for Kai. His experience would be different than mine, but not less.

Acceptance created space for joy to return, and I began to plan trips that engaged all the senses. We hiked trails through Muir Woods. We felt the fibrous bark of the trees and linked hands with outstretched arms to gauge the expanse of several enormous redwoods. We visited the Grand Canyon, where Kai gasped at the immense size as he explored a scale model located in the observation station. The brothers body-boarded the powerful, crashing waves at The Wedge on Newport Beach in California. I was nervous about the force of the Pacific Ocean’s waves, but Kai had played in the Atlantic Ocean since he was a small child and he was a strong swimmer. During breaks to catch his breath, he explained that he could sense the rhythm of the waves as they sucked out and rushed in. I drove the Road to Hana in Maui, and the boys screamed with glee through open windows as I maneuvered the 65 hairpin switchbacks as wind whipped through our hair. We ate fresh, sweet pineapple from roadside stands and swam in a cold waterfall. We hiked through a bamboo forest that sounded like wind chimes in the breeze. As adults, Cash and Kai take brothers-only trips together. They’ve explored Vancouver, British Columbia on a tandem bike, hiked along the Oregon coast, and attended jazz concerts in New York City.

Kai is now a 23-year-old jazz drummer, and while he can’t make eye contact across a crowded bar, he has no problem meeting women. I’m no longer obsessed with breasts, but my sons won’t let me forget. They still laugh. My early, awkward attempts to populate Kai’s visual memory bank will make a great Christmas story for years to come.

Kim Owens is a tiny house dweller, dog mom, blindness advocate, writer, and keynote speaker. Her adult son, Kai, unexpectedly lost his sight at the age of 10. Together, they founded a social media platform and blog that provides clarity for families navigating blindness. Her writing has appeared in publications such as Prevent Blindness, FamilyConnect, and Beyond Sight Magazine. She has Kai’s consent to publish this essay.