Updated: Jan 9
I have three beautiful children, the oldest two, who are 9 and 13 years old, excel at school and run track and play baseball and have friends. Their teachers tell my husband and me these children are kind and empathetic and smart and filled with promise. And yet, even though I have been a mother for more than a decade and I have written an influential book about motherhood and have been called a nationally recognized expert on families in the United States, I didn’t know anything about love and sacrifice and children and mothering until last year when the doctors at the finest children’s hospital on the planet told me that my youngest child, who was 2 years old at the time, was dying.
Every milestone she had achieved, walking, talking, feeding herself, using the potty, was reversed within three months of the diagnosis.
Calliope Joy, or Cal, as she is known to us, has metachromatic leukodystrophy, a rare, genetic disorder that damages the wiring of the brain called myelin. MLD is a white matter disease, in the same family as MS, but because my daughter’s body cannot produce this single enzyme, her brain’s white matter is being destroyed and her brain cannot communicate with her nervous system at all. The doctors tell me .....