Tara and John weren’t completely comfortable leaving Ashlyn alone in the kitchen, but it was something they felt they had to do, a concession to her growing independence. They made a point of telling stories about how responsible she is, but every one came with a companion anecdote that was painful to hear. There was the time she burned the flesh off the palms of her hands when she was 2. John was using a pressure-washer in the driveway and left its motor running; in the moments that they took their eyes off her, Ashlyn walked over and put her hands on the muffler. When she lifted them up the skin was seared away. There was the one about the fire ants that swarmed her in the backyard, biting her over a hundred times while she looked at them and yelled: “Bugs! Bugs!” There was the time she broke her ankle and ran around on it for two days before her parents realized something was wrong. They told these stories as casually as they talked about Tristen’s softball games or their son Dereck’s golf skills, but it was clear they were still struggling after all these years with how to keep Ashlyn safe.

A couple of nights after telling me the story about putting her hand in the boiling water, Ashlyn sat in the kitchen, playing with the headband that held back her long brown hair. We had all been drawing on napkins and playing checkers and listening to Ashlyn and Tristen sing “Call Me Maybe,” when all of a sudden Tara gasped and lifted the hair away from her daughter’s ears. She was bleeding beneath it. The headband had been cutting into her skin entire time we were sitting there…

At the clinic, they drew Ashlyn’s blood and took scans of her brain and her spine, but the tests were inconclusive. Over the next 18 months, there were more tests. A nerve biopsy from the back of her leg left stitches that ripped when she was running. When the doctor finally gave his diagnosis, Tara was afraid she would forget the words, so she asked him to write them down. The doctor took out a business card and wrote on the back: “Congenital insensitivity to pain.”

“The doctor told us we were the only ones out there,” Tara said. “That it was so rare. He said to keep an eye on her and that they didn’t know much about it and couldn’t really be of any help. It was kinda like, ‘Good luck!’ ”