I started watching a documentary yesterday on MAX (yes, we finally are able to get it) about a young Ukrainian girl with disabilities who was adopted by an Indiana family who then gave up on her and basically tried to dump her in a strange town without any resources. It’s called The Curious Case of… Continue reading Fantasy Children
Tag: genetic disorder
Kindred
When I was in my first year of high school, the movie Carrie opened and my parents forbid my teen brother and me from seeing it. This was pretty rare for our parents; they were laissez faire about most things and did not have a lot of rules, and we had seen The Omen and… Continue reading Kindred
Deep winter thoughts
I’m not in a good place this morning. That business about letting go of resentment that I wrote about a few days ago seems to have come back to mock me. I have finally gotten around to watching a webcast of a seminar at National Institutes of Health last spring, ‘De Novo SPG4 Inaugural Symposium.’… Continue reading Deep winter thoughts
True Facts
Little kids, and sometimes adults too, used to come up to me and ask me “What’s wrong with her?” when I was out and about with Sarah. I don’t blame kids for having questions but there was never any good answer and I sucked at handling this situation. Sarah understood everything that was said around… Continue reading True Facts
Big questions
One of the issues I wrestle with since August 18 is whether I am still a mother. When your only child dies, are you a parent anymore? Max and I not only really, really enjoyed being Sarah’s parents, but because of her progressive and rare medical condition our whole lives basically revolved around her care.… Continue reading Big questions
The First Year Without Sarah 