bedtime stories

Jenelle and I telling our kids bedtime stories on a recent shared vacation

My twin sister and I have always had a strong connection despite years of people comparing us to those Sweet Valley High books we grew up reading (yes, I’m clearly the nerdy journalist, Elizabeth, and she is the popular cheerleader, Jessica).

People have always asked us whether we have ESP or any shared twin language. While for the most part, the answer is no, I did awake with strong stomach pains in the middle of the night without knowing that she was going into labor 2,000 miles away and sat straight up in bed the moment she had her second child, on the shared birthday of my older child. Beyond that, we have no known twin quirks. Continue reading

Yesterday was the final day of winter.  And although I am really looking forward to sunny spring days and warm summer nights, I am going to miss all the winter activities.  I recently learned to ski despite the fact that I thought skiing was something that I would never do.  Mainly because every time I have pictured myself skiing, I envisioned heading straight into a tree or some other object/person not within my field of vision.  Although running into objects makes for some great stories and blog material, it’s not my idea of fun.
Maybe it was the Winter Olympics, or my dad telling me about a skier with RP in the Paralympics that inspired me to try cross-county skiing this year and hopefully alpine skiing next year.  I had no idea that adaptive skiing even existed, but once I started looking into it more, I learned that there are multiple organizations and foundations that support skiers with disabilities.  Although I have not yet had the opportunity to receive any special training or adaptive tools, it is something I am looking into for the future.

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A friend recently gave me an article on 4 blind moms featured in “Real Simple” magazine.  I was immediately struck by the beauty and strength of each woman, and I was a bit jealous of them for having such close blind friends.  One of the women, Joy (great name!), talked about how they are each in awe of one another’s feats.  “It’s like each of us has mastered a skill or has a bravery that the others don’t.”  They all have guide dogs and are starting a national group called “Mommies With Guides”.
One of the things they discussed in the article was what they do differently as parents without sight.  This got me thinking about my own parenting, and while I do have some vision, there are definitely some skills I have had to develop as a mom with low vision in order to be a good mom.  Some of these are still works in progress, but they’re definitely the “muscles” that get the most use, and therefore the most strength.

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My sister and I started Doublevisionblog to reach out to people facing blindness from RP, and to educate their family and friends. In the process, we ended up educating and connecting with our own family and friends in ways we had not imagined or originally intended

Connection with others, especially when facing major life challenges like blindness, is like salve for the human spirit. It soothes and uplifts and even heals.

The readers that we have connected with are now part of our story and will forever be threaded into the pain and hope of our plot lines. Continue reading