Local mom Cordelia Burns insists on being at her adult child’s medical appointments because her child may be too old for a lot of things, but he’s never too old to need his mother. Her son Daniel Burns, age 32, reports that having his mother at every appointment is precisely the type of thing he’s too old for.
Daniel lives with type 3 spinal muscular atrophy and receives supportive care through physical therapy, neurology, and periodic spinal injections. He was first diagnosed at age 12, when he showed strength problems doing ordinary tasks like using the stairs and rising after sitting. When reviewing this history to new practitioners, Daniel hears a familiar voice inside him say, “And who was it that took care of you then?” before her actual voice outside him says, “And who was it that took care of you then?”
At a recent PCP visit, a nurse practitioner responded that he was glad Cordelia had provided such a robust overview of her son’s treatment history, but seemed sure that there wouldn’t be any serious contraindications for the routine care Daniel was about to receive. “Moreover,” the NP said, “it’s fine to wait in the lobby while I meet with your son — unless you prefer her here, Daniel.”
“Oh, he does,” said Cordelia.
Daniel channels his frustration into a blog called “Children of Mothers of Children With Spinal Muscular Atrophy,” which serializes his experiences and provides a forum for others in his circumstances. Through this he has discovered a broad community of people with disabilities who are adults in every way, but still 10 years old in the eyes of their mother.