On doctor’s advice, we had ceded control to my stepson over his meds. He needed to have the responsibility, they said. We needed to trust him. We thought he was on track, and the shock of this revelation was almost as big of a gut punch as when he first got sick. Guilt, confusion, and anger—how could he play what amounted to Russian roulette with his health, after everything he’d been through?
Well, he’s a teenager.
When these things happen, the dark fear of “what if?” intensifies and the urge to micromanage becomes overwhelming. Yet, the hospital team and our counsellor tell us that having responsibility helps him feel more empowered over his condition, and feeds his natural teenage need for independence. There are so many times when my husband and I look at each other helplessly, exhausted from the delicate balancing act: checking in without nagging, overseeing without hovering, trusting without assuming.
"There are not yet universal standards for genetic testing, but a narrow consensus has emerged around specific conditions. The first prenatal...