Coping with a LifeAltering Diagnosis

When a child has a major health issue, learning how to manage new routines and expectations can be the key to everyone’s happiness

- BETH S. RUSSELL

WHAT AM I SUPPOSED TO DO NOW?" This question was the most common one from parents when I started my training in the quiet and solemn neonatal intensive care unit (NICU) of an otherwise welcoming, brightly lit, cheerful children’s hospital.

Ifelt the pain and loss of these critically ill infants’ parents, who were sometimes slumped and moving slowly in their worry. Their soft voices belied the anxiety about the future bouncing off every wall: How would they care for their child at home without the equipment and support of the hospital? How would they build the routines to help their child thrive under unimaginably hard circumstances?

More than 20 years later, at a different children’s hospital, I saw some of the same worries in parents of teenagers with chronic pain. Even though these parents were a decade or more into their caregiving routines, many were still not sure about what to do or how to care for their children as they approached adulthood. Without exception, they wanted their teens to strive for an independent adulthood, but they had trouble providing even small opportunities for independence out of fear of disruption to their child’s medical care plan. Just like the NICU parents from my training days, these families were struggling to be the best possible care providers and parents.

Raising a child with a chronic health condition changes the routines that shape everyday life. Meals, bathing and dressing might be different than planned; bedtime and playtime also shift. Parents still need to be patient, warm, responsive and encouraging; that doesn’t change. Being able to give praise and to provide structure and consistency remains important but might prove harder to prioritize. These caregiving demands can be extreme, and research tells us that parents can find it difficult to meet their own needs and the needs of their children, often sacrificing their own health care and well-being.