I posted this on my other blog, The Huntington Chronicles, in September. It doesn’t get easier… just messier and harder.
I know this road. I’ve been here before. Some of the twists, the turns, and the road signs are different, but I know where I am. Hell. This is hell, and I know that we’re not even at the worst part yet. Challenge on top challenge, and I’m already exhausted– raw and wounded. And we are walking on eggshells.
I will never be able to make it right. I don’t have Huntington’s; you do. As we have watched our grandmother, then our aunt and then our mother get sick and die, we have inevitably experienced it from very different places. There but for the grace of… a few genetic markers– go I, go my children. Do you know that this keeps me awake at night? Do you know that I cry–unsure whether I wish it had been me, or whether I can be grateful it wasn’t. Is there room for…
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TALES FROM THE MOTHERLAND 
How difficult it must be to have a sibling with the gene and not you. And of course, vice versa for your sibling. I can’t begin to know how it must feel, but you’ve done a beautiful job of capturing the emotions for us.
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Thanks Carrie. As a Dr, you know something about HD, I’m guessing… but yes, the personal toll is enormous. Having faced it several times now, I should be better at this, but each person I love presents new challenges, that never get easy.
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I can’t imagine that it would ever be easy, Dawn. I suspect that with each diagnosis, it just gets harder – like some weird Machiavellian tragedy. This is powerful and heart wrenching writing.
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Thanks so much Cathy; your understanding means a lot. xox
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So hard to watch those we love travel on a road that contains suffering and pain. I have been taking care of my mother this week. She has Alzheimer’s add did her sister and brother and possibly her father and grandmother. Every time I am forgetful, a part of me is terrified that it is really the onset of Alzheimer’s. But then I remind myself that not everyone with the gene gets it. Small hope the world crap shoot we call genetics.
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Watching those we love suffer is horrible, on all levels. The genetics of it makes the whole thing that much worse. With HD it’s a 50/50 hit, and always fatal. Pretty lousy odds to work with. I’m so sorry that your mother is suffering from Alzeimer’s, Heidi. It’s a long and challenging road for all who love her. All my best as you grapple with that. xo
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