We spent the day in Boston today, it was great to get out of the house, all of us as a family. What a beautiful day, this 3rd day of Fall. We were at Northeastern University from 8:30am until 1:00pm at a Shared Reading program put on by Gaulladet University. We spent our time there signing books in ASL. At one point we had to pair up in groups, Jake and I could not be in the same group, and go up to the front of the class and sign and gesture a book with dramatic facial expressions. It was a little uncomfortable, but fun at the same time. Reagan was in a separate class nearby for kids, and she was doing some signing as well. Rebecca was so well-behaved, as always (thank goodness!). After we were done at Northeastern University we went to meet Kate at a nearby Starbucks. Kate is a MIT student who we met at the “Shine a Light on Usher Syndrome Launch Party”. She had approached us at the “party” and asked if she could interview us in regards to Rebecca’s recent diagnosis. We talked with Kate for about an hour as we watched Reagan do cartwheels and roll around in the grass, Rebecca napped. I’ve been reading Helen Keller’s book, “The Story of My Life”, and read some of it on our way home from Boston. Obviously Rebecca’s life will be different, we are in a different time and there will be much more available to Rebecca. However, I felt it would be good to get a little insight into someone’s life who had been both deaf and blind. I am finding it interesting, at times a little upsetting, but interesting none the less. I am getting along a bit better now. I still have my moments, but I’m trying to accept what is. I am hanging on to the hope that there will be a cure before Rebecca begins to lose here eyesight. But whether or not there is a cure, we are going to make her life the best it can possibly be. She has two parents who love her more than life, and a big sister who simply adores her. We’ll get through it. We are so lucky to have Rebecca and Reagan, I thank my lucky stars every day.
Usher Syndrome Registry
Its so important for anyone with usher syndrome to register so that they are in contact with the researchers who are working to cure this awful disease. If you or someone you know has Usher syndrome please register at the usher syndrome registry.
The Big DayDecember 15, 2016
The big day is here.