A woman who teaches two-year-olds who have visual impairments had me sign a few copies of my memoir, Long Time, No See for her at the Vision Forward conference I spoke at last fall. When I was signing her books I had no idea she’d been diagnosed with an eye disease called retinitis pigmentosa when she was in fourth grade. She emailed me later to explain that she’d been able to see well enough to drive until 2007. Her eyesight continues to deteriorate, however. Last October she took medical leave from her teaching job, and she’s on a waiting list to train with a Seeing Eye dog.
When she got home from the conference, this teacher managed to convince her book club to read Long Time, No See, too, to help them understand the adjustments she needs to make now.
A number of memoirs have been written by people who lost their sight in adulthood, and it is extremely flattering to have this woman choose my book from all of them. Her book club meets this Monday, and they’ve invited me to come to Milwaukee and join the discussion. I’m looking forward to the trip to meet them all and introduce them to Whitney.
Another woman I met at that same Vision Forward conference happened to email me this week, too, with news about her six-year-old son, Bennett.
I wrote a post about Bennett here last year after his mom sent me a thank you note for the Braille copy of my children’s book, Hanni and Beth: Safe & Sound. Her thank-you was so moving that I wrote her back to ask if I could share it with my blog readers :
Dear Beth,I met you at the Vision Forward Conference in Milwaukee this past weekend. I purchased your book, Safe and Sound, for my blind 5 1/2 year old son, Bennett.
My husband read it with him tonight, while I worked on homework with my 9 year old. Bennett was so excited about the book. He told me, “I loved that book you got me. It’s a true story mom. And no one ever writes true stories for kids about people who are blind like me.”
Thank you for writing this story and reaching out to children who can not see. Bennett has a Children’s Companion Dog and he said when the story started, he thought for sure it was about his dog Journey.
Thanks again. And it was a pleasure meeting you. Keep writing and we will keep reading 🙂
The email I got from Bennett’s mom this week came from the Children’s Hospital of Pittsburgh. Bennett had 2 cornea transplants in his left eye years ago, but both had negative results. He and his parents traveled from Wisconsin to Pittsburgh this week to have Dr. Ken Nischal, one of the world’s foremost children’s eye specialists, try a cornea transplant in Bennett’s right eye this time.
Currently, the cornea (the clear tissue that’s about the size of a dime and covers the front of the eye) is the only part of the eye that can be successfully transplanted. People who have macular degeneration, retinitis pigmentosa, or diabetic retinopathy, like me, have a disease of the retina. The retina is a thin tissue that lies in the inside of the eye and acts like the photographic film inside a camera. Corneal transplantation would not help those of us with retinal diseases, but scientific research resulting from eye donation could help future generations.
Cataracts, old age, poor eyesight, or cancer will not necessarily prohibit you from signing up to have your eyes donated after you die, and signing up to be an organ donor is much easier than you might think. A web site called Donate Life America provides a list of where to register in your state, and if you do decide to donate, make sure to tell your family your wishes as well.
Bennett’s mom says her son approaches each challenge with “a strength we never knew could come from someone so small” and requested I ask you blog readers to keep their family in your thoughts and prayers over the next couple weeks.
Thinking of you, Bennett, and sending all good wishes to you and your wonderful family.