The words the nurse said that day return again and again to my thoughts: “If the ulcers that are on the inside of her body were on the outside, you’d have to wonder how she’s been making it through the day.” It was a Wednesday, the day of my then eleven-year-old’s diagnosis with Crohn’s disease. The MRI left no room for doubt; her digestive tract was heavily damaged. We would need to change her diet, monitor her inflammatory markers through blood draws, and begin a regimen of steroids and other medicines in an effort to put her Crohn’s into remission.
Hers was our first appointment of the day. As soon as she had changed out of her hospital gown and back into regular clothes, we descended four floors on a hospital elevator for her younger sister’s appointment—a diagnostic test to measure the reflux in her kidneys. The test would determine how successful her latest eleven-hour surgery had been—the third major surgery in the fewer than two years since she’d been born. Read more