Theme: Goals of Care

Undiagnosed: “28 years and we still don’t know exactly”

Page: 7 of 7

Undiagnosed: “28 years and we still don’t know exactly”

June MSW, LICSW, ACHP-SW, mother of Katie (28), who is medically complex and likely has Rett Syndrome, describes living in the not-quite-certain-what-it-is-space, not knowing the prognosis. “If you don’t know what it is, where do you go? Early on, I thought, if we knew what it was, we could do a better job of caring for her. .. And then I adapted to not having a label.” How do parents plan ahead? When to plan ahead? Living with the unpredictability.