When Kai was 10 and first diagnosed with degenerative sight loss, he was scared. He began to have trouble seeing at night and his first reaction was to build a nest on his bed out of blankets and pillows. One night as mom was tucking him into his nest, he said that he felt bad for all the kids around the world who do not have comfortable places to sleep. Mom had no idea how to tackle that issue on a global scale while also helping her son deal with sight loss, but after many conversations together: Kai’s Comforts was born. Kai decided to collect new, soft, highly tactile pillows and blankets from his community to deliver to his peers who are living at schools for the blind. At first, it started out as a great way for us to do something positive, and connect Kai to peers dealing with sight loss. His first collection was delivered to kids at the Georgia Academy for the Blind. a school for children who are blind and visually impaired about 3 hours from Kai’s mainstream school. The first delivery was a huge success the kids were thrilled to receive their comfort items, and Kai got to meet lots of kids who were “like him.”
Kai is 17 now, and he’s just completed his 4th delivery. This year, in addition to delivering comfort, he had a message to share: Comfort is important, but he now believes it’s even more important to push himself outside of his comfort zone. Continue reading “Legally Blind Teen Shares Comfort Items while Encouraging Peers to Step Outside Their Comfort Zones.”
I speak a lot about acceptance and how our family has adapted to our son’s sight loss from Retinitis Pigmentosa. However, I want to be real with you, I’m struggling right now.
We just returned from a visit to Duke Eye Center. Our youngest son, Kai, has previously been followed by Emory. We’ve visited Emory Eye Clinic 3 times over the last 7 years and they’ve run a number of tests and have run genetics tests twice. At the age of 10, Kai was diagnosed with Retinitis Pigmentosa. RP is a rod-cone dystrophy that causes a restriction in the visual field (think of looking through a tunnel) and eventually, in the late stages, causes the central vision to fail. RP is typically diagnosed later in life and is a typically slow progressing disease. Continue reading “The Struggle is Real”
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”
From perceptions to prom to college — and everything in between — Kristin & Kim cover multiple topics about raising kids who are blind. Click here or on the image below to listen in on the chat/rant that follows no outline or schedule!
Please give us a like, share, follow or comment. Related links are included at the end of the post.
ps. This is my first video experience so please be kind. Yes, I know I blinked A LOT! lol. — Kim
Image is a link to the video along with headshots of Kristin & Kim.
Happy New Year, friends.
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”
Hi everyone! This post was written by our boys — Kai who is 17 and legally blind and Cash who is 21 and typically sighted — about their recent travel to Canada to visit the set of the Apple TV+ original See! That’s right, they even got to meet Jason Momoa and watch a fight scene in a cave, as it was being filmed. (Season 1, Episode 6 – which aired this past weekend.) The post is wrapped up with comments from both dad and mom. Enjoy!
From Kai’s Perspective:
My brother Cash and I’s trip to Canada taught me so much and it was a great experience. We traveled to Vancouver to meet my mentor Joe Strechay, who is the blindness consultant on a new Apple+ TV show called See. Joe is an awesome guy who has helped me learn how to thrive with a visual impairment, so I was super excited about the trip. Continue reading “See, Strechay & Momoa”