A Different Planet
On Epistemic Isolation in the Bureaucracy of Care
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.
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.
(One of the many) Complicated Truths of Disability Parenting
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.
A beginning. An introduction. A few words for those who’ve found their way here.
On loving a child who exists outside the margins of medical documentation
open.substack.com
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...
The Kartoffel
The Kartoffel
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...
