The Struggle is Real

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”

What Do You See? by Pamela Thistle

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”

Thriving Blind & Navigating Blindness: Acceptance & So Much More

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.

Continue reading “Thriving Blind & Navigating Blindness: Acceptance & So Much More”

On Your Mark, Get Set, Go! How Do You Keep Your Blind/VI Child Active & Safe?

by Kim Owens & Hilda Dunford (@OurBlindSide)

Many parents of children who are visually impaired or blind find it difficult to keep their children engaged in physical activities and sports. Hilda and I are often asked: How do you keep your child active and safe? Continue reading “On Your Mark, Get Set, Go! How Do You Keep Your Blind/VI Child Active & Safe?”

Kai’s Comforts 2019 Collection to Benefit the Governor Morehead School for the Blind in NC

Hi friends, we are so excited to kick off our 4th year of Kai’s Comforts!  This year’s collection of new, soft, highly textured blankets and pillows will benefit the Governor Morehead School for the Blind in North Carolina.

Kai is a 17-year-old with a rare, progressive, eye disease called Retinitis Pigmentosa (RP). RP and other retinal diseases cause blindness. Night blindness is one of the first symptoms that many children experience and it can cause severe anxiety. Kai collects new, highly textured, soft, pillows and blankets to help comfort other kids facing blindness. Your donation will comfort a child experiencing vision loss.

Drop Bins bins are located in Statesboro & Brooklet at Pladd Dot Music, SE Tire & Service, and SEB high school’s front desk. Collection Dates Nov. 1-30, 2019.

Here are a few great articles about previous deliveries. Please get in on the fun! Continue reading “Kai’s Comforts 2019 Collection to Benefit the Governor Morehead School for the Blind in NC”

Addison’s Diagnosis Story: Mainzer Saldino Syndrome & RP

We Have a Daughter. She is going blind. She helps us to see. Written by our special guest, Addison’s mom: Diane Bealer. 

When our oldest child (a girl) was just over a year old we noticed that she couldn’t see in the dark. This was a little worrisome to us but we didn’t freak out about it because we didn’t know we should for one, and we didn’t have any clue of the implications for another, the most important reason is that we weren’t ready for the truth at that point in our lives. As she got older we started noticing more clues that something wasn’t right with her vision. She would trip over things in dim light. She would freeze in the dark and not know where things were located. She NEVER got out of bed at night, unless there were bright lights on.

We took her to her first eye appointment when she was about 3-4 and the optometrist examined her and agreed that she needed glasses for nearsightedness but did not believe us about night blindness. It just did not occur in children that young. It wasn’t possible. This happened for 3-4 more years, every year we would go to the eye doctor and plead with them to do a more extensive exam, longing for some kind of answer. Every time it was the same thing. “Kids don’t get night blindness this young”. “You’re worrying too much”

Then the year she was going to turn 8 we took her to her annual exam, and once again I told the doctor of how she ran into things in the dim light and dark. How I knew in my heart something was going on with her eyes. He did the regular eye exam and said he couldn’t see anything wrong with her eyes.

Then I asked a question I hadn’t thought to ask before, “Will you do the same exam, but in the dark?” Continue reading “Addison’s Diagnosis Story: Mainzer Saldino Syndrome & RP”