When it’s a Long, Indefinite Timeline
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.
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Maturing into parenting a medically complex child: You don't even realize how you're walking but you're just moving some kind of way.
Becoming OK with the uncertainty of his life expectancy
In the Zoom Room Recording: What does a good day look like?
Parenting a Medically Complex Child: I can't do this! Learning self-care,
Undiagnosed: “28 years and we still don’t know exactly”
Undiagnosed: “You can’t put your life on hold until this resolves because this may never resolve”
Decision-Making: My biggest fear was getting caught in the medical machine.
Parenting a medically complex child and keeping the adult-age sister involved.
Checking in with Lars and Elizabeth
I’m feeling trapped. But we’re getting closer to that future.
It’s hard to do but we do it.
How is this my life?
What if something happens to one of us, the healthy ones?
The lack of diagnosis frustrates me. I’m a planner. For him, he couldn’t care less.
I don’t know what impact Jake’s death will have on us.
I can only think out a few years.
I’ve learned …