I am going to start filtering some of my more private musings. Since blogger does not have a tool for that, you will need to visit my Live Journal and ask to be friended there. I will continue to post Daily Gratitude and other subjects here. There is also a FAQ for my Journal at the same link.
growing up with disability (3rd post tonight)
| Thursday, August 14, 2003 @ 19:47 We don't talk about it alot, but boy and I have one thing in common that we didn't seek in a partner -- because neither of us would wish it on another person. We both came from families where one member was disabled. boy's mother survived polio as a child and lived with the effects until her death last year. My sister was diagnosed with a neuromuscular disease (in the same family as muscular dystrophy) when she was three years old (I was eight). His mother's death was caused by complications of post-polio syndrome. My sister will likely die when her disease destroys either her heart or her lungs (and it's started attacking both in recent months). I don't want to dwell on what is involved in watching someone you love, a member of your most intimate family circle, suffer in pain, struggle with diminishing capacity, prove time and time again they are too stubborn to fit the stereotypes of "cripples". We both endured terrible moments of doubt, fear, anger, confusion, and being faced with mortality at ages when most children can't comprehend death exists-- on top of the normal emotions associated with sibling rivalry, child rebelliousness, and other growing pains. We were shaped by it, but we refuse to be conquered by it. And when boy's mother died last fall, I stood with him, behind him, and for him when he needed it. And, even though I kept telling him I don't want him to have to do that for me, we both know that he will, sooner or later -- and given the recent developments in my sisters prognosis, probably sooner. Having that understanding with each other is priceless. While his experiences were with a parent and mine with a sibling, we still have this bond. We know what it's like. We know why the other is reacting to certain things in a specific manner. We share this knowing that we never expected to share with a partner.
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