It's often been suggested that I write the story of my journey with two children with Usher Syndrome. I suppose I could have started a long time ago, but at the time we learned that Roberta had it - at age 18 - we were all rather in shock and denial. We had spent all those years learning to deal with hearing loss in both girls, and those efforts were obviously successful, but this was a whole new set of challenges for all of us.
I have a way of handling crisis - very differently from my husband. Through the very many years of our marriage, we have always accused each other of not understanding the other's way. He accuses me of dealing with it all on an emotional level; I believe he only approaches the issues logically and rationally and doesn't consider the emotional/psychological/social aspects. This has caused considerable discord, but we have weathered many crises together. After almost 45 years of marriage, we are still together!
And together, whether planned or not, we have caused the disability issues in our children, and so it is our duty to help them become the best humans beings that they can be. I believe we have succeeded!
So....in 1989, Roberta was diagnosed with Usher Syndrome, Type 2. At that time, there was little known and little research into its causes, nor had any genes yet been identified. She was a Freshman in college at a prestigious MA university, had always been an excellent student, and wanted absolutely NOTHING to do with this "thing!" Who could blame her? She was in her prime, away from home, and independent for the first time in her life, and she was thriving! It was a blow to all of us.
The doctor/researcher at MASS Eye & Ear Infirmary was less than kind and helpful. He WAS, however, interesting in getting her into one of his research studies (which I erroneously called a "project," for which he reamed me out), and considering my horror over the diagnosis as well as his admonishment, I might have preferred a little sympathy and education. I recovered from him and from the news, but I must confess that it was not a happy time in my life. I went through my new grieving process - virtually alone - with little support from family, friends, service providers, medical personnel. And once again, I gained traction on my own emotions by trying to learn as much as I could as quickly as I could.
The same doctor insisted that our other daughter, also hearing impaired, MUST have this same syndrome. She was not having any of that! She lived hundreds of miles away. And she actually manifested no symptoms until fairly recently. But now her progression seems to be more precipitous. To this day, she has not confirmedly been diagnosed with Usher, due to the fact that she is living in NC where there seem to be no ophthalmologists who specialize in Retinitis Pigmentosa. Anyone reading this who knows of a retinal specialist familiar with this condition, please leave a comment on this blog.
OK....that's enough for today. If you are inclined to comment here or on FB, I'd be happy to know if you'd like more info about the early years with two hearing impaired youngsters. As my daughters are now grown (I'm a grandmother of THREE beautiful boys and girl who are not afflicted but carry the recessive trait), I am more focused on the present. But I do feel I have much to share with young parents who may be recently dealing with a new and painful diagnosis of hearing loss or deafness or other child disability. I welcome all comments.