I shadowed a mom and her 5-year-old son with CF from afar for 24 hours.
It taught me more than I could have imagined about living with a life-shortening disease — and about myself.
This “empathy exercise” was organized by Smart Patients, an online community where patients and caregivers learn from each other.
What follows are the text messages we exchanged (shared with Erin Moore’s permission):
First stop-me-in-my-tracks revelation:
How is it that we ask people to implement complex home treatments and yet we do not invite them to co-design protocols?
Erin’s anxiety reminds me of a food allergy adage: People will point at you and whisper, “There goes that paranoid mom.” It is then and only then that you are doing enough to protect your child.
That set of screen shots represents just the first few hours of the day. There are many, many more — and the day takes a dramatic turn, unfortunately.
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