Parents of Adelaide, age 3 with ‘shrinking white matter’ disease, and Charlotte (8) and Levi (6). At the time of this interview, Adelaide was age 3. She is now 5 years old.
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Now I understand what palliative care is!
Checking in with Lars and Elizabeth
Elizabeth likes to talk things out. It’s not my first preference.
They’ve been exposed to so many different types of people.
They think of her just as a cute little sister.
Living in the Present - they can't be expected to figure this out.
When I feel myself spiral downward, I have to do something else.
You get to the point where this just Is What It Is.
The lack of diagnosis frustrates me. I’m a planner. For him, he couldn’t care less.
I can only think out a few years.
I choose to look at the bright side of life.
What gets to me is all the medical appointments.
What I’ve learned from this …
You have to have a sense of humor.
You definitely keep me sane.
When you start talking, they start sharing.
I can’t handle the negativity of some people.
The medical machine is not very humanistic. Sometimes I think common sense gets lost in the bureaucracy.