Shirley Phillips has a doctorate in physical therapy and currently works for a federally funded research and development program studying human performance in aviation. She was an airline pilot prior to her daughter’s birth.

Ashley and Shirley

The pediatrician was working with a medical student when Ashley had another of her 105 degree fevers. The remnants of a birthmark on her forehead glowed crimson beneath the fringe of bangs I used to conceal it. It always seemed like a warning sign designed just for me, her mother.

I sat quietly while the pediatrician asked for permission to share some information about Ashley’s rare genetic condition with the medical student. Given her intellectual disabilities at the age of two, she was probably not going to understand a word he said, but I instinctively reached to cover her ears.

This resulted in the pediatrician saying, “See how her ear canals are curvy? And her ears are set low on her head? Notice her wide nasal bridge, and her barrel-shaped chest. I am certain when Ashley was born they knew right away that genetic testing was needed. Three or more abnormalities, like the club foot, the wide nasal bridge, the . . . ”

“Wait just a minute,” I said, hardly recognizing my own voice as I stammered out my dismay, interrupting the sage […]