Where to Start?

When telling a story, it's always good to start at the beginning. This is where our family began. The baby is my  brother Ezra, born in Sept. 1965. Claudia and Ralph adored Ezra, their first born child. Ralph's mother, Momsie, is sitting on the floor in front. She is a beautiful looking lady. According to family lore, she was a true Rosie-the Riveter, working at the local shipyards in Portland, Oregon during WWII. The family story is she was hard-of-hearing due to the noise of shipbuilding. By the time Grandma Momsie was in her forties, she lost most of her sight. She was legally blind at the time this picture was taken.

We now know Momsie had a  rare genetic condition called Usher's Syndrome. She was born hard-of-hearing and gradually lost her sight over the years. This was back in the day when hearing aids weren't very good and she probably didn't ever have the benefit of them. There was nothing that could be done about the Retinitis Pigmentosa that stole her sight.

How do we know Momsie had Usher's? Because our three children, Jennifer, Elise and Ty have all been diagnosed with it. They too, were born with moderate hearing loss and are experiencing vision loss in themselves. Dr. Ed Stone at the Univ. of Iowa is developing a cure for Usher's vision loss. The hope is within ten years, his research will be available to our children and others.

Family stories are good to know. They might not always be positive, but sometimes they are the answer to bewildering questions like, "What the heck is Usher's and how did my children get it?" I think Grandma Momsie is a true warrior. She dealt with an unfortunate life situation and lived a full life, not missing out on any of the good stuff that makes this journey worthwhile.