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!
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.
A few months ago my oldest, typically-sighted son, Cash, called to say that he and his girlfriend were out hiking and found a beautiful log bridge over a stream. As they were crossing the log bridge, they decided to sit down and relax a bit. After getting comfortable they found themselves free-falling into the water below. The log broke! After air-drying in the sun he realized that his wallet was no longer in his pocket. (I later found out that he’d also lost his passport! But that’s a different story.)
Knowing that he was away from home without a wallet stressed me out and I immediately spun into full-blown-problem-solving-mom-mode. But in the midst of lecturing him and outlining all the steps that would be required to replace his items, I realized that this is his problem to solve and he can handle it. I relaxed, took a deep breath and offered suggestions while feeling a wee bit of satisfaction knowing he was about to embark on a total pain-in-the-butt journey and learn a lot of valuable lessons along the way.
So when my husband found our missing credit card laying on the floor in the van, I’m sure he felt a twinkle of justice knowing that I had been feeling the stress of my disorganized money management methods. Typically, I pay for my purchase then drop my payment method or change into my cavernous disorganized pocketbook. And, sometimes, when I hit the brakes just right the disorganized contents spill out of my unzipped purse onto the floor of the van.
When the hubs pays for something, no matter how long the line is behind him, he painstakingly places his change, payment method, and receipt into the proper spot in his wallet. It. Drives. Me. Nuts.
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”→
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.