My little red tether is my anchor in running with my friends. A beautiful guide dog has been my tether/anchor in mobility and independence for 17 years: 1. Pantera 2. Cricket, and now my beautiful 3. Georgina (Georgie). A life of family and friends is my joy and anchor in life.

The human spirit is stronger than anything that can happen to it. CC Scott

Saturday, December 27, 2008

Dear Jenna;

I have the same eye condition you have (Retinitis Pigmentosa) - RP is easier to say, right! Sometimes its challenging, but life is good.

If you ever want to talk about it, let me know. I also understand if you don't want to! I didn't when I was younger. Now, I have lots of friends with RP and other eye conditions and it really helps to have them who can understand. I also have lots of friends who don't.

Just thinking about you.

With love; Becky

On one of our trips this year we met a mom whose daughter, Jenna, age 8, had been recently diagnosed with retinitis pigmentosa. She saw Steve's shirt that had "Foundation Fighting Blindness" on it and came up and began to talk to us. Interestingly, she noticed his shirt before Cricket. She had never met anyone else who had Retinitis Pigmentosa and shared with us she was afraid her daughter, Jenna's, life was over. We both reassured her that her life could be very good - even with RP! It was a brief conversation as she was off to catch her taxi but we tried in that quick moment to reassure this mom that her daughter's life could be great - let her dream and believe in herself. We gave her some contacts that we knew of in her area and said good bye. I have thought about Jenna and her mom since then. (Jenna was not on this vacation with her mom so we didn't get a chance to meet her.) I hope she has met others who can support her. I am so appreciative of those who I have met with RP along the way - who helped me know that I could still dream and love life as a person who is blind. The couple that Steve and I met 20 years ago that were laughing and dancing - he has RP. The therapist that I spoke with who had RP and shared how she had completed her degree. The mom with RP, who reassured me I could raise a family. Now, there are so many dear friends that I have that happen to be blind that have helped me have hope and dream. I wish that for Jenna and all others experiencing the rollercoaster of vision loss. Yes, the challenges are there, the changes and adaptations are present and sometimes come at unexpected and inconvenient times, but its a good life -- full of laughter; meaningful relationships, opportunities to serve, and the comforts of home.

2 comments:

Susan said...

I really appreciate your post Becky~
Living with RP is not easy. It's sometimes funny, if you are in good company. But there is so much heart ache and continual struggle.
I have been trying to cope for about three years, and coming up with some fine techniques. . .but I am so afraid of counseling.
The pain of disclosure. And who would understand the on going grief?
Love, Susan

karen (Mom) said...

As we have watched and been a part of your roller coaster ride with RP we had admired and loved how you have faced difficult challenges with such a marvelous attitude. You have blessed many lives and ours are at the top of the list.
Mom