I finished reading a memoir last night about parenting a child with a rare and fatal genetic disorder called Metachromatic Leukodystrophy. (It’s called Harnessing Grief by Maria Kefalas and it was a good read.) Her mom described being told very flatly by a doctor that her toddler daughter had a progressive degenerative disorder and she was… Continue reading To Tell The Truth
Tag: hereditary spastic paraplegia
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
The First Year Without Sarah 