Happy New Year, friends.
I keep hearing that 2020 is the year of “#Acceptance” so today I’d like to respond to a question from a friend who asks: “You seem to have fully accepted Kai’s sight loss. How do you think you were able to do that?”
In short, with daily practice.
We had recently, barely survived 3 big losses:
- In 2003, at the age of 51, my vibrant, healthy mom was diagnosed with glioblastoma brain cancer — no known cure. One day she was at work and the next day, after what looked like a stroke, she was in surgery having a quarter of her brain tissue removed. I was relentless in finding a treatment and cure for my mom. I wore myself out — and ran my entire family ragged — in my efforts to save her life. Ultimately, we cared for her in our home for 3 years before she passed away. My only regret is that I didn’t take time to simply lay down and watch movies with her. But, I did my absolute best at the time while also balancing a new business, a new baby, a 5-year-old and a husband who was a full-time student.
- In 2007, a year after my mom’s death, my husband graduated and was offered a teaching job near Savannah, GA. We were ready for a change and he accepted the job. It was the beginning of what became the national housing crisis and after having our home on the market for several months it became clear it wouldn’t sell in time. We decided to rent it out to some college students, but they quickly fell behind on rent, and then record rains caused the backyard creek to overflow which flooded the entire lower floor of the home. Our family took a huge financial hit while struggling to get established in a new town.
- Then, in 2009, at the age of 40, I unexpectedly and quickly became very sick. I was originally diagnosed with systemic scleroderma (a condition with no known cure and reduced life expectancies.) I was unable to work and ultimately had to close my small business. The doctor’s bills were piling up. We downsized, bought a very small home and cut every possible expense. We jumped from doctor-to-doctor, from university-to-university chasing a cure. There were no clear answers, just lots of expensive and painful tests (biopsies, nerve conduction tests, MRIs, PFTs, the list was endless.) It took several years for me to find a doctor who truly understood what I was dealing with and who was able to get the disease(s) under control. I do not have systemic scleroderma, but I do have 3 other auto-immune conditions — with no known cures. I take monthly infusions, weekly shots, and daily medications. Because of my illness, my family became experts at living simply and with a great deal of ambiguity.
So in 2011, when our 9-year-old son began to feel anxious, we thought it was due to all the stress in our lives. But, his anxiety became overwhelming, and after a year of therapy, doctor visits, and eventually a failed eye exam, Kai had to endure a very painful test called an ElectroRetinoGram (ERG). The ERG gave us a completely unexpected answer: Retinitis Pigmentosa — degenerative sight loss with no treatment and no known cure.
Having an answer instantly put Kai’s anxiety at ease, but I had a different reaction: Blindness? No known treatment? No known cure? Why are there no freaking cures!? I was angry, sick and sad. So sad. I could not stand the thought of my young son’s childhood being taken over by doctor visits and searching for a cure. I didn’t know what to do, but I knew we needed to do something differently. We are people of faith and while we wanted answers, a miracle, a cure! …we also wanted peace. Peace.
Around that time, I had the opportunity to attend a wisdom retreat at an episcopal retreat center, and while away I found myself overwhelmed with grief about Kai’s vision loss. It was a safe place, away from the responsibilities of daily life and motherhood. In the hours of silent meditation and prayer, I wept. I sobbed the nights away in my cabin. Then on day 3, while participating in a silent prayer session, I was overcome with the musty smell of wet earth, and the raucous roar of a babbling brook. Despite my regular centering prayer practice and two days at a silent retreat, it wasn’t until the 3rd day that the smells, textures, and sounds broke through the endless chatter in my mind. I was shaken to the core with the sacred earthiness of it all and my tears stopped with the realization that Kai will still be able to experience the fullness of life. My inner-voice pointed out that I am the one who is blind to so many things! How did I miss the beautiful babbling brook, the musty wet leaves, and the bird song? How long had I been trapped in the endless chatter of my thoughts? I knew I had to get out of my head and out of my story. It was time to embrace “what is” and simply take the next best step.
In the years since that retreat, Kai has learned braille, to walk with a white cane, and to access school work through assistive technology. He got connected to an awesome mentor who is blind, and we found a wonderfully supportive community. We took it day by day, simply doing the next best thing — we still do.
My focus is so easily distracted with the small details of life, but my son who is blind to candy wrappers and faces is ever-present to the earthiness of the world we inhabit. Acceptance is a mystery. It comes when you decide to simply let what is, be.
When we remember to be present, here, now
To listen deeply, and respond mindfully
To love, value and accept each other exactly as we are
To laugh at ourselves
When we slow down enough to read the full menu aloud
To describe our surroundings in precious detail
When we are aware of the play of light and shadows in the room
The coolness of the green, evening grass
The exact ingredients in the food on a plate
The sounds of tinkling shells at the beach
The bumps and crevasses in the sidewalk
And even the strange fact that a fun, sweaty and loud trampoline park smells exactly like a dismal hospital room.
Acceptance is magical – its freedom – its life – its a mystery.
When we fall into step with our son and his white cane, our souls are enriched in the here and the now.
Willingness is the key. We must be willing to change and loosen our grip on what we can’t control. We forget sometimes. Some days are hard and long battles are fought for access to educational materials. We can get so caught up in our battles that we lose sight of the beauty of life. But, as time passes we get more practice and we get better at remembering how to return to what is, now.
I hope that I was able to communicate a small piece of my internal journey with acceptance. This post only describes one (of many) breakthroughs I’ve had. Acceptance is a daily practice that I continue to choose.
We’d love to hear about your experiences as well. Please leave a comment or use our contact form to reach out. If you are a parent who is interested in sharing your own story of acceptance, please let us know. We love sharing other people’s stories because we fully believe that we are stronger when navigating blindness together.
If you have a child who is experiencing sight loss, I highly recommend that you watch Kristin Smedley’s Ted Talk How I learned to see through the eyes of my sons and pick up a copy of her excellent book Thriving Blind. You can watch Kristin’s Thriving Blind interview with my son, Kai, here: Thriving Blind with Kai Owens and you can find Kristin in her new and exciting Facebook Group called “Brilliantly Resilient.”
A New Way to See
Blindness and the Sixteenth Birthday
The First Steps
Kai’s RP Diagnosis Story
#SharingIsCaring – If you found this post helpful please give us a like, share or leave us a comment.
6 thoughts on “The Mystery of Acceptance”
Thank you for sharing your story and how you go about acceptance. It is an every day decision for sure!
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Thank you Melissa 🙏🏻
I often say the same thing, why is there no cure. Living with retinitis pigmentosa and seeing my eyesight go away is the hardest acceptance of all for me. It shakes my soul and somehow my spirit won’t allow me to give up hope. Your post brought tears to my eyes dear. May God give you and your kid great strength.
Life is never easy with disability and yet you can achieve more than any other, trust me. Big hugs. Stay safe.
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Thank you so much. And, thank you for sharing your experience as well. If you’d ever like to be a guest contributor please let us know via our contact form. I’m sure our readers could learn a lot from your personal experience: https://navigatingblindness.com/contact/
Sure. Thanks .