In honor of Mother’s and Father’s Day, during the months of May and June, we’d like to give all the moms and dads of children with RP and other eye conditions a gift:  some free advice from 2 people who grew up with low vision.  

Each week, we will be featuring a different tip.  We would LOVE your feedback, comments, and any questions you might have.


 

Tip #1 Find Comrades for Your Child

Spending countless hours researching adaptations and technology for your children is time well spent, but if you’re taking the time to do those things, then also take a few minutes to connect your child with peers they can relate to regarding their vision. Continue reading

“You’ve got to read the book I just finished,” I heard Joy telling my voicemail.  This was not an uncommon message for her to leave.  Recommending the latest and greatest books to each other has been happening since our “Sweet Valley Twins” days.

But what she said next sparked my interest a little more than usual.

“The author is a mom about our age who wrote a memoir about her life and she has RP just like us.  She actually sounds like someone we would be friends with.”

I instantly knew she meant that we would be friends with her because of her personality, not her RP.  I uploaded the book from Audible a few minutes later, and began the journey into Nicole C. Kear’s memoir “Now I See You”. Continue reading

Last summer I had the idea to start a legacy story-telling business that would help capture people’s life stories through video, audio and print. I bought 3 different domain names because I couldn’t come to a final decision, and the name I really wanted (Legacy Storytellers) was already taken. I worked on my web content, read and researched everything related to personal storytelling, met with experts in the industry, interviewed possible videographers, and began making plans to attend “The Association of Personal Historians” annual conference. I talked incessantly about my budding career plans, announcing to family and friends my goals for the year.

And then I took a little sip of air, often referred to as a breath.

And I exhaled for the next several months, wondering if this is the right time to start such an endeavor and feeling kind of embarrassed that I opened my mouth to so many people about it. Continue reading

Being misunderstood is something we really don’t like as humans, especially if we are of the people-pleasing variety.

Beginning in middle school and continuing through college and into adulthood, I have heard comments such as, “I waved to you but you walked right by me”, “you totally dissed me”, “Why don’t you ever say hi to me when I pass by?” and so on.

Some of my most embarrassing/humiliating/humbling moments include scenarios surrounding these phrases. These moments include missing high-fives, not acknowledging someone i’ve known for awhile, calling a long-time friend by the wrong name when I first see them, and failing to shake people’s hands. And these are just the scenarios I am aware of, and many times because other people have told me about my faux pas after-the-fact. I am sure there are countless other incidents that I am unaware of. Continue reading

My grandpa Bob passed away a little over three years ago, and yet I still remember vivid details about him.  Like the way he would gently say “Easy now” to anyone acting a little too rough.  Actually, that was his response for a lot of situations – when his wife shouted bossy commands, when my siblings and I fought, when someone cut him off in traffic.  I can sometimes hear his soft words as if he’s still right next to me telling me to just take it easy.  And although I have so many other fond memories of my grandpa; I think that “easy now” is my favorite because it’s something that reminds me to calm down and be kind to myself and others just as he was. Continue reading

The FFB featured an article and video on safety in the kitchen last week that I found interesting, helpful, and somewhat funny.  I hadn’t really given a lot of thought to safety in the kitchen from an RP standpoint, but it’s something that I’d like to be more conscious of going forward.  I am pretty comfortable in the kitchen, but I have learned that getting too comfortable in any area of life is often the time that RP sneaks up and yells “surprise!” in the form of something like a bruised leg (coffee table – 2 days ago). Continue reading

I am afraid of flying balls.  (please take a moment to snicker to yourself if necessary).  Ahem, for a person with limited peripheral vision flying objects of any sort can be dangerous.  But it seems flying balls have been the ones I’ve had to deal with most in my life.  I can recall being smacked in the face by one on several occassions.  And what better time is there to be smacked in the face with a flying ball than elementary school?! Continue reading

Posted by Joy and Jenelle

Sometimes we laugh about it, sometimes we cry about it, sometimes we share news and medical articles about it, sometimes we avoid talking about it altogether, but it’s always there.  We’re identical twin sisters who have grown up with RP.  We’re now 33 years-old, both married to amazing guys, and have sweet little daughters.  Although we look a lot alike on the outside and share the same challenges of vision loss, we often have different perspectives on the disease and each deal with it in our own way.  We wanted to create a blog mainly for other people struggling with RP, as we find it helps to feel connected when facing the day-to-day challenges of living with RP.

We also hope that it can give family and friends of people with RP, Ushers, and other similar diseases a glimpse of what it’s like to live with these types of challenges.  And frankly, this is therapeutic for us, so even if no one (besides our mom) reads it, we’re gonna write it anyways!