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. Continue reading “Is Your Child Thriving In The Midst Of Vision Loss? Is Your Loved-One Succeeding Without Sight?”
I’m thrilled to bring you the final episode in this 4 part series “From A Mother’s Perspective” that has been created in partnership with Victoria Claire of www.VictoriaClaire-BeyondVision.com. Today’s guest post is written by Holly Bonner from www.BlindMotherhood.com. Welcome Holly and thank you for sharing your story with us.
A Day in The Life of Blind Motherhood
Written by: Holly Bonner, Blind Motherhood
The static noise of the baby monitor blares behind my head. I can hear my three-year-old calling me, “Mommy, I’m awake.” I’ve slept the entire night in our Lazy Boy recliner… again. I look down at my chest and can barely make out my 18-month old daughter who’s been curled up on top of me since 3am. She is the image of perfection, even to this blind mother. I carefully run my fingers through her hair, caressing her curls. I touch her cheeks with my palm, in an attempt to gently rouse her from her sleep. My day of Blind Motherhood begins. Continue reading “From A Mother’s Perspective – Part 4 Featuring Holly Bonner”
Blindsided by Blindness: Noah’s Diagnosis Story By Karen Tantzen
When my son was four years old I found out he was going blind – and I had no prior clue that anything was off with his vision.
Our story starts in September of 2015. I had taken my eldest son, Noah, to his pediatric ophthalmologist in Baton Rouge, Louisiana for a follow up visit. His acuities were off and he’d been prescribed a pretty strong pair of glasses the previous winter. The past spring, his doctor still wasn’t happy with how much Noah’s visual brain had developed since he’d begun wearing glasses, so he’d asked us to come in for an extra check up.
At this appointment, though, Noah’s acuities weren’t what concerned the doctor. The issue was his retinas. Continue reading “Noah’s RP Diagnosis Story”
Hi, this is Kim and I want to warn you that as a parent of a child who is losing sight, this is an emotionally tough read. However, I feel it’s important for us to deeply listen to adults who are adapting to blindness. I’d like to thank Victoria for her vulnerability in sharing.
Part 3 in a special series with www.victoriaclaire-beyondvision.com
Written by: Victoria Claire
A Rejection Of Motherhood
Here is the 3rd part to the “From A Mothers Perspective” blog series. So you have had the perspective of my mum about how she felt when I was diagnosed with RP, you’ve also heard about Kim Owens feelings with her son Kai, so now I give you a completely different perspective…. from the mother that never was. Continue reading “From A Mother’s Perspective – Part 3 Featuring Victoria Claire”
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. Continue reading “From A Mother’s Perspective – Part 2 Featuring Kai Owens’ Mom, Kim”
Part 1 in a special series with www.victoriaclaire-beyondvision.com
Written by: Sandra Tinsley, mother of Victoria Claire
My daughter was diagnosed with Retinitis Pigmentosa when she was 19 years old and just beginning her adult life at university. How dreadful that must have been for her.
I felt absolutely devastated for her and myself. Having been such a good baby, totally happy, always laughing, nothing ever bothered her, she would tackle anything.
I cried, questioned myself asking was it something that I had done during my pregnancy, had I worked too hard? We had moved house 2 week before she was born, she was also born with the cord around her neck. You always think the worst trying to find answers. Continue reading “From A Mother’s Perspective – Part 1 Featuring Victoria Claire’s Mom, Sandra Tinsley”