18 May 2008

To me he was . . .

I was talking to my mother on the phone tonight. After the usual questions about her current health and happiness she said:

I was thinking just the other day about all the things your father and I did in the 57 years we were together.
"You guys did have a busy life together." My father passed away in 2002 just three weeks before their 58th anniversary.

I was always so proud of him. No matter what, he made sure we paid our bills. Even the hospital bills for you and your brother.
The health insurance my dad got through his job was almost totally useless, and my parents paid almost all of our hospital bills themselves. "I know he worked hard, but what I remember most is that we always seemed to have fun."

He worked like a dog. But he never complained.
"No, he never did. And like I said, we always had fun."

Don't take money to have fun.
She was quiet for a couple seconds while we both remembered.
God, I miss him.
"Me too, Mom."

In a world that often treated my brother and me as something less than real men because we had hemophilia (and often didn't mind telling us quite bluntly), he never had anything but love and pride for us. When other fathers were abandoning their family or ignoring a son's existence because he was 'defective', my father was taking on another job so he could be sure we had the care we needed. When the world was telling my brother and me that we would never be anything but cripples and a drain on society, our father was teaching us how to work a short order grill, do rough carpentry, and run a bakery so we would always be able to make our own way.

In my last post I talked about how the gene for hemophilia can stay hidden for several generations. In our family it is just the opposite. My grandfather was a hemophiliac, two cousins, my brother and I, and now my grandson. I know my life has been infinitely easier than my grandfather's, and I am confident that my grandson's will be infinitely easier than mine. I just hope that he never has to hear some girl's father tell him not to come around anymore because Janice/Rosa/Sharon can't be wasting her time on a cripple; but if he does I hope he has someone like I did who will remind him that "your bleeds can be stopped, and you'll get better, but there isn't any cure for being a stupid jackass."

With my father/I would watch the dawn/Over the green fields.

The Rest of the Story

The old, familiar sting . . .

Hemophilia can be a truly nefarious condition.

One of its more nefarious aspects is that it can lie low for generations, quietly getting passed from mother to daughter but not calling attention to itself by taking any side trips into the male branches of the family. (Yes, I know it's all governed by genetics and chance, and the condition does not, indeed cannot, take any active interest in how and when it manifests itself. It's just sometimes easier, for me at least, to talk about it this way.) The family goes along minding its own business, and with each generation one or two of the daughters are carriers, who grow up and have children and again the luck of the draw gives them a son who is not hemophiliac and a daughter who will quietly, secretly, unknowingly pass on the genes. Eventually so many generations pass that the family forgets about great-great-great-great grandfather Sheldon who was said to be a cripple and died young bleeding into his stomach.

Then it happens.

The Rest of the Story