The Science of ParentingMondays
Ways To Cope When Your Child Gets A Life-Altering Diagnosis
Parents often struggle with the news that their child has a major health issue. Learning how to manage new routines and expectations is key to everyone’s happiness
“What am I supposed to do now?”
This was the most common sentiment 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.
I felt echoes of pain and loss from parents of critically ill infants, sometimes slumped and moving slowly in their worry. Beneath soft voices, anxiety about the future bounced off every wall—how they would care for their child at home without the equipment and support of the hospital, how they would build the routines to help their child thrive under unimaginably hard circumstances.
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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. While these parents were a decade or more into their caregiving routines, many were still struggling to know what to do, 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 care providers possible and the best parents. That needle is hard to thread.
Raising a child with a chronic health condition changes the routines that shape everyday life. Meals,…
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