Mitochondrial disease

My daughter's blood tests have ruled out everything except mitochondrial disease. She has had a biopsy, and we'll know the results in June. For more information, please check out our caringbridge page.

We're struggling to absorb this monstrous diagnosis into our lives, and are trying to find what the new normality is. We used to worry about who would care for Grace after we die, but now we would do anything to have that worry back. The thought of life without her is staggering. She has become the center of our lives since day one, and now to know that she will be ripped from us too soon is unbearable.

I find some comfort in doing everyday tasks, which gives me the illusion of having some control over our lives. I also have experienced a strange new appreciation for some of the music I play at work. Somehow music does really have meaning in all the meaninglessness. Each moment is filled with the potential for beauty or communication. Each moment I have with my daughter is the same.