L oving Evelyn is a blog about parenting. Parenting a child with a terminal diagnosis.
I’m Rosemary, a mom of three living in Oklahoma. I’m a pretty average mom — I don’t dust nearly enough, I yell probably too much and frankly coffee is the only thing keeping me going most days.
In January 2017, my youngest daughter Evelyn — then just three years old — was diagnosed with mitochondrial depletion syndrome. Mitochondria are tiny organelles in almost all our body’s cells that provide the energy needed for that cell to function. This particular type of mito is caused by mutations to the POLG gene, a piece of DNA that tells the body to make more mitochondria.
Anyway. The details don’t matter much. What matters is, on the day I was told Evie has POLG, I was also told to enjoy my time with her… because this disease is typically fatal in childhood.
Every name has a meaning, and Evelyn’s name is special to me: it means "a wished-for child." In the past year, I've learned that her name carries more significance than I had ever realized: My child is whole and perfect as she is. Her diagnosis does not define her, but it is a part of her. I wished for her. And she is exactly what I wished for.
Parenting a child with special needs and a terminal diagnosis feels unthinkable, even as you live it day by day. This blog is a place to talk about the things I can’t talk about anywhere else. Welcome.