In the early days of Kai’s diagnosis I scoured the web for blogs written by sighted parents of kids who were losing their vision. I could not find any. Sure, I could find advocacy and awareness web sites and consumer groups, but I craved emotional honesty from another mom. I wanted to read her feelings, understand her struggles, and celebrate her wins. I wanted to know her feelings about her child’s inclusion (or lack thereof) and understand the anger and frustration behind her educational accessibility battles. And, most importantly, I wanted to know what it felt like to be on the other side: to have raised a child who became a strong self-advocate, who is highly-educated and employed. I wanted to know my child could beat the grim statistics. Now, 7 years later, I have found 6 moms (+ me) who are blogging about their experiences and I am so excited to share them with you!
Each of these blogs is written by a sighted mom of a blind or VI child(ren). Our kids range in age from 1-20, they have different diagnoses, and our philosophies, cultures, and religious backgrounds vary, but what we all have in common is the courage to share. Continue reading “The Courage to Share: Blogs by Moms of Blind/VI kids”
Hi, This is Kim and I’m excited to share a blog post written by our extremely talented and adventurous friend Pamela Thistle of www.TheBlindThistle.com:
Hi, my name is Pamela Thistle and I have Usher Syndrome, which is Retinitis Pigmentosa and hearing loss. I’ve been wearing hearing aids far back as I can remember but it wasn’t until my early teens when the RP was discovered. My eye disease is slow-progressing and it wasn’t until I was in my late 30’s that I was deemed Legally Blind. It hit me hard and it was tough going for a year or so until I decided to fully embrace my disabilities. Since that moment my life has been a series of adventures and self-discovery. I am a retired Interior Designer but have discovered many interests over the years: photography, mountain biking, snowboarding, Olympic lifting and obstacle course racing to name a few. My motto in life is “No matter how hard it is or how many times I get my a$$ kicked I’m just gonna keep coming back!” Continue reading “What Do You See? by Pamela Thistle”
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?”