Newsletter Signup Contact Donate

Courageous Parents Network

About

Initiatives

Contact Donate Newsletter Signup

Search entire library or by microsite

Media Library

Navigating Medical Complexity Coping With Loss Neurojourney

Search

Search entire library or by microsite

Media Library Navigating Medical Complexity Coping With Loss

Click here for NeuroJourney resources

Home > Goals Of Care > Themes

SHARE

Videos

Theme: Goals of Care

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

Page: 3 of 7

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

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.

SHARE

35 / 80

<
1
2
3
4
5
…
7
>

Related Resources