It has been wondered, not proved, that Down Syndrome may be passed on genetically. So I called my Grandfather and asked him to tell me a little more about his nephew, Wally. Wally was my second cousin who had Down Syndrome. Here is his sad and happy story.
My great Uncle Walter and Aunt Ada Hinebaugh had three daughters and longed for a son. So at the age of 42 Aunt Ada had Wally. When the news of his Down Syndrome got to their very conservative church tragically they were asked to leave the congregation. I can't imagine the pain they must have felt; After the news of their sweet little baby having Downs and then losing their friends, their whole community and what should have been their support and comfort must have been more than they could bear. Aunt Ada was in school at the time of Wally's birth. She decided to change her major to Special Education. After graduating she started many programs for children with special needs and ended up in "Who's Who In America"!
When Wally was young there were no therapists that would come and work with your child at home. Because of this Walter and Ada decided that it was best for Wally to live in a group home that would provide him with the services that he needed. Wally enjoyed it there and would even want to return to the group home after Christmases and Summers spent at his parent's place. He found life outside of the group home too fast-paced.
Wally was able to speak and even learned how to play the guitar until later in life. One day at the group home he was encouraged by one of the workers there to get some fresh air out on a second story balcony. Unfortunately while out there he got locked out. In trying to get back into the building he fell off the balcony. So very sadly Wally spent the remainder of his days as a quadriplegic. Wally lived until the age of fifty-five.
6 comments:
Aw, it sounds like your great aunt and uncle did the best they could w/ the resources they had back then. How sad about the church asking them to leave. I wonder what their reasoning was, Do you think they thought it was a sin or something to have a child with Down syndrome? I hope that wouldn't ever happen in todays church. I was told there is a cousin with Ds somewhere on my dad's side, but I don't know too much about him. I know my great grandmothers had a lot of children back then and there were quite a few babies that died at birth and I often wonder if any of them had Ds and didn't make it because they didn't have the medical care we do today.
Wow.
It is difficult to think that a group of people could be so ignorant, misguided and cruel - in the name of God, no less.
It does sound like Walter and Ida did the very best that they could, and Wally influenced them in many ways. It sounds like Wally did pretty well, too, for the most part. A tragic accident, for anyone. I don't mean to be flippant, I just don't know what else to say. It's quite a story, and quite a life.
Bittersweet.
Rylie's Mom- Actually, the church where my parents-in-law attend were wonderful to us. People from the church visited us at the hospital on a couple different occasions and brought Ian and Silvi gifts. I am very thankful for that. Very interesting that you too had a cousin with Ds. Makes me wonder even more if there is a genetic connection.
Elbog- Nothing you have said on my blog has ever been flippant. I value your insights. I agree with what you said. Yes, it is bittersweet.
what a sad story annie. one heartache strung together to another and another. i have a friend who does all kinds of research into her geneology and she finds all these stories and pieces them together. it's always struck me as such a dignity to serve as a witness to these lives. how beautiful that wally is not forgotten.
Terri- I feel honored to be able to tell his story and have him not be forgotten.
I can' imagine how painful it must have been for your aunt and uncle to loose their support base at a time when they needed them mosts. I think they are to be commened for the efforts they made to get Wally what he needed at a time when there wasn't much available. And yes, what a tragic, ending. My eyes filled with tears imagining what he may have felt being stuck on the balcony. Thanks for sharing.
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