Metachromatic Leukodystrophy

Caring for my terminally-ill daughter Cal has made me wiser, braver and kinder than I ever imagined possible. So, two weeks ago, as Cal lay in a hospital bed at the Children’s Hospital of Philadelphia, I wrote a letter to my members of Congress. I invited my senators and congressman to come and spend time [...]

Cal. Three years have passed since I published “Mothering Cal” in Slate, just before Mother’s Day 2013. It had been 11 months since my daughter Cal was diagnosed with leukodystrophy, a fatal degenerative brain disease. Cal is named after the muse Calliope, the goddess of music whose divine power is to inspire beauty in the world. The last [...]