Kai’s RP Diagnosis Story

When Kai was 4 he had a concussion. We took him to the ER and they did a CT scan. We were told to watch him and he was sent home. He recovered right on schedule.

When Kai was 5 my dad came for a 2-week visit. Our home is small, so having one extra person makes a big difference in our routines — changes in rooms, changes in schedules. Kai began having anxiety during this visit. He had a really hard time with “things being different.”  This anxious behavior continued for a while after the visit but calmed back down eventually.

When Kai was 6 he was on a basketball team. We noticed that when he played he would press and pull on his eyes.  It was worse during the games, but the behavior continued. Some days Kai would actually have what appeared to be bruising at the outside edges of his eyes. And sometimes when he was really tired, I’d notice that his eyes would sort of shoot off to the side repeatedly. We took him to the doctor and were told it was probably allergies and a different manifestation of his anxiety.  (We now know this behavior is called the oculo-digital sign, characterized by poking, rubbing, and/or pressing of the eyes and is very common in visually impaired children.)  Continue reading “Kai’s RP Diagnosis Story”

From A Mothers Perspective – Part 3 Featuring Victoria Claire

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 Mothers Perspective – Part 3 Featuring Victoria Claire”

From A Mothers Perspective – Part 2 Featuring Kai Owens’ Mom, Kim

Part 2 in a special series with www.victoriaclaire-beyondvision.com
Written by: Kim Owens, mom of Kai Owens.

Letting Go

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 Mothers Perspective – Part 2 Featuring Kai Owens’ Mom, Kim”

From A Mothers Perspective – Part 1 Featuring Victoria Claire’s Mom, Sandra Tinsley

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 Mothers Perspective – Part 1 Featuring Victoria Claire’s Mom, Sandra Tinsley”

Willingness is the Key

I am deeply tired. We have been having a rough time lately. My autoimmune disease has been flared up causing pain, fatigue and general malaise. Kai just underwent his bi-annual appointment at the eye clinic 4 hours from home. It’s hard to endure those long drives, long waits and painful tests when the outcome is only for school documentation — no treatment. Top that off with my oldest son having to learn some hard self-care lessons while away at college and sprinkle it with my dad’s inability to admit to a severe drug and alcohol addiction and I find myself wondering: Am I willing?   Continue reading “Willingness is the Key”

KnowledgeABLE featuring Pamela from The Blind Thistle: Finding Your Way in the Chaos

Hello there – It’s Pamela dropping in from The Blind Thistle! I’ve been invited as a guest blogger here on Navigating Blindness. I will be sharing my tips and suggestions on how to make the home a better space to navigate for the Visually-Impaired (VI).

I ‘met’ Kim (the lovely woman behind the Navigating Blindness blog) through Instagram and we hit it off from the start. Her son and I share the same eye disease, Retinitis pigmentosa (RP). While her son’s diagnosis was made a few years back, I have been dealing with my RP for well into 40 years now. Continue reading “KnowledgeABLE featuring Pamela from The Blind Thistle: Finding Your Way in the Chaos”