Seven years ago a pediatric ophthalmologist called me at work to say that our 10-year-old son’s retinas were deteriorating. I was so stricken and confused by the words he used – deterioration, progressive, no cure, no treatment – that before we hung up I asked him, “Are you telling me that he’s dying or going blind?” “Blind,” he replied.
The way the news was delivered was so shocking that the memory still brings a visceral pang of grief. With one quick phone call, our lives were changed. We learned that our precious, youngest son, Kai, would go blind. The life we had envisioned for our bright, active child would be dimmed by blindness. We were shattered. We had no template and no understanding of what it meant to live without sight. We had never even met a person who was blind.
Unfortunately, for the first several years our family had to go it alone. We live in a small rural area 3-hours from the nearest blindness advocacy group. Kai was the first child in our county to experience progressive vision loss. We had to chart our own path, figure out our options and make the necessary connections to obtain services for our son.
It’s been 7 years now and we’ve overcome so much. Our son is thriving because of a few very important factors which are highlighted in Kristin Smedley’s new book Thriving Blind.
“If there’s a book that you want to read, but it hasn’t been written yet,
then you must write it.” ― Toni Morrison
Thank goodness Kristin took Toni Morrison’s wisdom to heart and wrote Thriving Blind! Oh, how I wish that our doctor had sat us down and explained what to expect and that our son could still have a wonderful, rich, fulfilling life. Oh, how I wish our doctor had handed us a copy of Kristin’s book which introduces her two sons who were each diagnosed with blindness at 4-months of age. Kristin’s book is vulnerable and real and bursting with hope in the form of 12 different short stories featuring real people succeeding without sight. Her book also includes a Foreword by Erik Weihenmayer. Erik is a world-renowned athlete, adventurer, author, activist and motivational speaker. Erik has climbed the 7-Summits and has rafted the Colorado River. He’s the co-founder of the No Barriers organization and he’s been instrumental in challenging my family’s views of what is possible with blindness. Kristin’s also compiled a “starter list” of resources for families who are new to sight loss. This book is invaluable.
“We’ve been on this journey for 7 years and I’ve never come across a resource as hopeful and helpful as Thriving Blind.” – Kim Owens
I pray that Kristin’s book is placed into the hands of every new family whose loved-one is diagnosed with sight loss and I hope that everyone in that person’s circle will read this book to expand their perceptions of blindness. This book should be required reading for all doctors specializing in retinal disease.
As I page back through the book, I notice that I highlighted and underlined passages about the need to adapt. Each person, no matter their path or challenge, came to a point where they realized the need to adapt and learn new skills to succeed. They also surrounded themselves with people who had expanded perceptions of blindness.
“Our perceptions and expectations drive our outcomes: make them extraordinary!” – Kristin Smedley
Like me, Kristin is a strong advocate for braille literacy because by utilizing Braille in the classroom our boys have been able to succeed and thrive in mainstream public schools. In fact, access is so important that Kristin published her book in 3 formats: paperback, Kindle and electronic braille. That’s right, she produced a braille version! Thanks to a generous donation from TMobile CEO, John Legere, the Thriving Blind BRF version is available at the same price as the Kindle version – just $9.99! She also launched a social media campaign to promote braille literacy which features kids and teens reading portions of the book on refreshable braille displays. Click here for a glimpse of Kai reading a section of the foreword to Thriving Blind.
Please click one of the links below to purchase your preferred format of Thriving Blind:
Click here to order the paperback or Kindle version of Thriving Blind.
Click here to order the braille version (.brf) of Thriving Blind.
I am so grateful to have Kristin as a role model because I whole-heartedly believe that we are stronger when navigating blindness together. If you’ve already read Thriving Blind, please leave a comment with your thoughts in the ‘Comments’ section below. Thanks so much for your support!
Exciting News: My son Kai recently had the wonderful opportunity to be interviewed by Kristin! Please click here to watch the interview and learn how Kai has broken down barriers, overcome limited perceptions, built a strong network and obtained the necessary skills to succeed with sight loss.
Image description: Kristin and her 3 children standing together on a golf course. Michael and Mitchell hold white mobility canes. They are all smiling.
Kristin Smedley, from Bucks County, Pennsylvania, is an award-winning non-profit leader, TEDx speaker, and author – but she never planned on any of that. Kristin did plan to be a really great third-grade teacher, however, her personal path to greatness took an unexpected turn when two of her three children were diagnosed as blind. She had to learn the tools of blindness and build a team of experts that would help her navigate this path that she had not been trained for. Kristin’s two blind sons are now thriving as gifted college and high school students, elected student council officials, baseball championship winners, International Braille competition finalists, and social butterflies.
In 2011 Kristin founded the Curing Retinal Blindness Foundation (www.crb1.org), the only patient organization in the world for her sons’ blindness, CRB1 LCA/RP. Kristin has led the CRBF to raise over $1 Million, introduced the first-ever legislation in the United States in Braille, and has moved rare eye diseases from rarely talked about to being discussed in key circles worldwide. In 2017 Kristin published her first book, Thriving Blind: Stories of Success Without Sight.
Kristin enjoys speaking about her journey and pointing out where she can find the fun in the fundamentally challenging situations life delivers. Kristin’s inspirational and humorous style leaves audiences of all sizes wanting to hear more.
Connect with Kristin:
4 thoughts on “Is Your Child Thriving In The Midst Of Vision Loss? Is Your Loved-One Succeeding Without Sight?”
We were told that our daughter was losing her sight when she was 7. The night she was diagnosed, she said that she feared that she would never be able to do anything, but I told her that with our support, together with that of family and friends, we would make sure she could do whatever she wished and that is what has happened. She is now nearly 44 and has a good university degree, a senior job, a husband and 2 beautiful children. She has been on a TV programme, featured in an advertisement for a multinational company’s product, sky-dived, runs a support group for blind new mothers…I could go on! At times life was difficult and she and we had to find our own way through. We are, of course, very proud of her and happy to talk to other people who may need support and encouragement.
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Hi Janet, thank you so much for reading and for commenting. It helps so much to hear these stories of success with sight loss. If you or your daughter would be interested in sharing more, in the form of a blog post on Navigating Blindness, please reach out via my ‘contact’ form. We’d love to hear more. Thanks again. Kim
We have 6 overseas visitors staying at the moment, so I haven’t much time but I will talk to my daughter Kate and we’ll get back to you as soon as we can.
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Thank you. I look forward to hearing from you again. Enjoy your time with everyone, Kim