Yesterday, we learned that Kai has been misdiagnosed for 7 years! It’s not RP or Stargardts, it’s autoimmune retinopathy (AIR). If docs had listened & run proper testing his sight may have been saved. 😭😡😭
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?” Continue reading “The Mystery of Acceptance”→
Check out this fun and informative interview between Thriving Blind’s Kristin Smedley and Navigating Blindness’ very own Kai Owens! They talk skim boarding, surfing, drumming, main stream schooling, college plans and much more. Kai shares a lot about what it takes to be thriving blind!
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.
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”→
Last week was Kai’s 16th birthday. I remember when we first heard the words “your son is going blind” and the feelings of dread and loss that swept over me when I realized he would not be able to drive. It’s been 6 years since diagnosis, but right now we are feeling the diagnosis and loss acutely — like a fresh wound. Continue reading “Blindness and the Sixteenth Birthday”→
The following post was originally written by Kim Owens for FamilyConnect Newsletter:
At the age of 10, my son, Kai, began to lose his vision to an aggressive form of Retinitis Pigmentosa (RP). My dreams for his life were shattered with the doctor’s words, “blindness, no known cure…” I was blind-sided by his diagnosis and could see only darkness. Continue reading “A New Way to See”→