After her diagnosis, my daughter’s daily routine was daunting. She took more than a dozen prescription drugs, including pancreatic enzymes at every meal to digest her food. She learned to swallow capsules as a toddler after watching me take a birth control pill. We celebrated with high-fives when she made her enzyme “all gone.”
She did twice-daily respiratory therapy, breathing a nebulized cocktail of drugs to thin the mucus in her airways, while an oscillating vest on her little body shook the mucus loose. When she was small, we pounded on her chest and back with cupped hands, distracting her with videos of “Barney & Friends.”
My husband and I worked as a team. We acclimated the way parents do when living with chronic illness, a current of anxiety always humming in the background. As her mom, I was more than a caretaker. I was the eyewitness, record-keeper, connector of dots, making sure every doctor, nurse, insurance provider, pharmacist and teacher was aligned.
Our family life was structured around my daughter’s disease, a constant checking of boxes — meds refilled, therapies completed, blood tests and chest X-rays scheduled, pulmonary checkups every two months.