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”
I’m happy to share this incredibly educational video by YouTuber “Cayla with a C” that I think parents of children who are blind and visually impaired will appreciate. Her topics of acceptance, understanding, compassion, independence, and community are spot on. Continue reading “Video Spotlight: YouTuber “Cayla with a C””
I’m excited (and a bit nervous) to share a very vulnerable piece of our family’s journey which was published in the June 2019 edition of Captivating! Magazine. The article is titled “The Value of a Disabled Woman.” Continue reading “The Value of a Disabled Woman”