Part 2 in a special series with www.victoriaclaire-beyondvision.com
Written by: Kim Owens, mom of Kai Owens.
Overnight our bright, happy, outgoing 9-year-old-son, Kai, became anxious and afraid. He refused to sleep in the dark and he clung nervously to my side. His personality changed drastically and we were terrified. Over the next year, we visited many specialists but received no clarity.
Then one day I noticed that his handwriting started in the middle of the page and trailed off the right side. I asked why he wasn’t using the left side of the paper and watched as he held the paper up to eye-level, and moved it from side to side, inspecting it closely. Kai’s last eye exam had been 4 months prior, but I became certain that something was wrong with his vision. The eye doctor agreed to take another look and that’s when he noticed that Kai’s retinas looked funny.
After several tests, a pediatric ophthalmologist called saying Kai had “a degenerative disease that was affecting his retina, and it would continue to progress….no treatment, no cure….” The doctor’s words were so severe that I asked “is he’s dying or going blind?” “Blind,” he replied.
Blind. Vision loss gave Kai an answer which relieved his anxiety. I’d hear him simply state, “I can’t see that, I have vision loss.”
Blind. I was wrecked and could not envision his life without sight. Reaching out to other moms of blind and visually impaired kids I found, that most, like me, were stuck in a loop of grief and denial. Eventually, through therapy and meditation I learned to welcome the grief, experience it, and let it go. 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 letting go of “my stories” was key.
I remember the day my mindset changed: I had dropped Kai off with his Orientation & Mobility teacher and proceeded to the bakery at the end of their route to wait. I was ordering blueberry muffins, when I caught a glimpse of them approaching. My heart broke: my son, going blind, his future limited. And, that’s when I noticed it: HIS SMILE! I saw a little boy who had successfully crossed a busy street with his cane! His joy was overflowing. He wasn’t sad or frightened, he was radiating accomplishment and independence. His version of the story was very different from the ones I had been clinging to.
It’s been 6 years since Kai was diagnosed with Retinitis Pigmentosa and he’s thriving. He has about 5 degrees of blurry sight left, but he has a clear vision for his life and he’s learning the skills necessary to succeed, including: Braille, assistive technology and O&M. As a mom, the letting go is hard but Kai and I have an agreement that works for us: If he needs help, he asks. Once we have the situation sorted out, I let go again. It’s a process.
Kim is passionate about connecting with parents of blind and visually impaired kids. She whole-heartedly believes we are stronger when navigating blindness together. You can reach her online at www.navigatingblindness.com or on Instagram www.instagram.com/navigatingblindness
Kai has become the world’s only sponsored, blind skimboarder. You can see him skim and thrash on the drum set at www.instagram.com/kai.owens