I’m about 2/5 of the way through this book. Reading this has been a difficult task for me…not that it would be for everyone, but it was for me. Those of you who have read my blog for awhile know that I didn’t know my father or my sisters growing up, that I met them when I was 21 (dad) and 22 (sisters), so I missed out on a lot of their lives, as they did mine. One thing that I missed out on was that I had an uncle, Bobby, who had Downs Syndrome. He was my father’s older brother, and he died before I had a chance to meet him. For those of you who have no people in your family born with such difficult medical circumstances, you can’t know what pressure it puts on a family. For those of us who have someone in our family with such needs, we can’t know if life would have been different, or how different, had that person been born healthy, had been able to learn and grow at the rate which most people experience.
My uncle Bobby was born in the early 1940s, and back then, a child with Downs was institutionalized. There was no question, between the doctor and my grandfather, that this was for the best. But for my grandmother, she wanted to keep her son home with her, wanted to raise him herself. The institution to which Uncle Bobby was sent did not take children under the age of 2. Think of that for a moment, of what that means…it means that my Grandma had her son home with her until he was 2 years old, loved him and cared for him and got to truly know him, and then had him taken, against her will, to the institution. She had very supportive family…my grandfather’s mother moved to the town where the institution was, so that she could watch over him and make sure that he was OK. But my grandmother and grandfather did not do so. They stayed in their town, at their jobs, and raised my father as best they could.
But the stress on my Grandmother was immense…I sometimes wonder how much of her personality, her ‘strangeness’ was caused by her son’s illness, the loss of having him at home, the empty spot in her life. I wonder about my father, about how his personality would be different, if Bobby had stayed home. And then again, if he were home well, vs. being home with Downs. My Grandmother went somewhat insane. At one point, I believe, she tried to drown herself, my father, and Bobby. I haven’t heard this story from my father, so I’m not sure, but the image haunts me. My father came home from school one day, to find that his mother had been institutionalized, because she was having so much trouble. My grandmother and grandmother slept in separate bedrooms after that, and I’m not sure how much of that was due to her horrid snoring, and how much to the strain in her marriage.
The stress on my father also was immense.Â I found out that he never told my sisters that he even had a brother, until after Uncle Bobby had died.Â So if I had known them growing up, I still wouldn’t have known Bobby.Â My father says he doesn’t really know why he never told them…he wasn’t ashamed of his brother, but it would have been hard on them to go visit, I suspect, so he was waiting until they were old enough, which unfortunately never happened.Â My grandmothers house if full of family photos, and yet, not one of Bobby.Â She talks about him a lot, so again, it’s not that she’s ashamed.Â There are just so many strange coping mechanisms in this world, and my family has a few of them.
So as I read this book, the story of a family with a daughter who was born with Downs, the father who had a sister with a heart condition that killed her very young, I felt so much for them. For the father, who couldn’t bear to repeat the pain he went through when his own sister died, and so when he delivered his daughter, saw this tell-tale signs of Downs, he sent her away to be institutionalized. But he never told his wife. Instead, he told her that their daughter had died, that her twin brother, healthy, was the only remaining child. The protective shield that the mother puts around her son seems eerily familiar to me, like how protective my Grandmother is with my father. The distance between the husband and wife, the pain that they both suffer every day, gives me a glimpse into the life of my grandparents. I don’t know how accurate this glimpse is. I wasn’t there, I don’t know. I never met my uncle Bobby. But this book, so far, has touched me much more deeply than I had expected it to.