When it’s a Long, Indefinite Timeline
![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.](https://i.ytimg.com/vi/rQMp74cSAzE/sddefault.jpg)
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.
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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.
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Becoming OK with the uncertainty of his life expectancy
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In the Zoom Room Recording: What does a good day look like?
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Parenting a Medically Complex Child: I can't do this! Learning self-care,
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Undiagnosed: “28 years and we still don’t know exactly”
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Undiagnosed: “You can’t put your life on hold until this resolves because this may never resolve”
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Decision-Making: My biggest fear was getting caught in the medical machine.
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Parenting a medically complex child and keeping the adult-age sister involved.
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Checking in with Lars and Elizabeth
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I’m feeling trapped. But we’re getting closer to that future.
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It’s hard to do but we do it.
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How is this my life?
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What if something happens to one of us, the healthy ones?
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The lack of diagnosis frustrates me. I’m a planner. For him, he couldn’t care less.
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I don’t know what impact Jake’s death will have on us.
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I can only think out a few years.
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I’ve learned …
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