kartoffel.substack.com
Just writing what comes to mind.
Mostly about life as a parent to a child with a rare medical condition.
The Kartoffel
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At the center of every waiting room is the way families learn to carry the weight of uncertainty: through waiting, through silence, through rituals of protection, and through the fragile shift from wanting to delay the future to stepping into it.
To say “this hurts” feels dangerously close to saying “I wish my child were different.”
Love is not a spontaneous gift, it doesn’t just happen and it's not something you just can’t help but feel. It is intentional. It does not lift us out of our messy imperfect everyday life. It digs us further in. Roots us.
And sometimes, it covers us in beets.
A Different Planet
On Epistemic Isolation in the Bureaucracy of Care
The Notebook
Navigating the gap between medical charts and the unmeasurable magic of a life
Come walk with us?
#fatherhood #disabilityparenting
Join #ParentChampions Amy Graver and Aisling Melton with @drchrissysalley.bsky.social for a meaningful conversation about how palliative care can play an invaluable role in the care of a child with cancer. This event is hosted by CAC2 on September 11th. Register below.
www.cac2.org/cac2c-events...
Caregivers live with a specific kind of #fatigue:
Not just #tiredness
But epistemic #exhaustion
From explaining.
Correcting.
Proving.
Again and again.
This fatigue is not laziness—it’s erosion.
In this webinar, join pediatric psychologist, Chrissy Salley, Ph.D., with parents Amy Graver and Aisling Melton, to learn how palliative care can help your child and family and also demystify common m...
