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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
To say “this hurts” feels dangerously close to saying “I wish my child were different.”
The Notebook Navigating the gap between medical charts and the unmeasurable magic of a life
Come walk with us? #fatherhood #disabilityparenting
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.
10mo
11mo
10mo
11mo
9mo
Jun 15, 2025
Finding connection through stained fingers and feeding tubes
open.substack.com
On Epistemic Isolation in the Bureaucracy of Care
The Potato and the Beet
A Different Planet
ourlittlekartoffel.com
Naming isn’t knowing. #disabilityparenting #fatherhood #thenotebook
(One of the many) Complicated Truths of Disability Parenting
open.substack.com
Navigating the gap between medical charts and the unmeasurable magic of a life
EMR Fingerprint #epilepsy #research #rare #geneticdisorder
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.
The Birth of a Tragedy
The Notebook
ourlittlekartoffel.com
11mo
11mo
A beginning. An introduction. A few words for those who’ve found their way here.
open.substack.com
Let’s Walk for a While
Pachyversary
Hold On To Yourself
open.substack.com
11mo
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...
A Different Planet
On Epistemic Isolation in the Bureaucracy of Care
On 'Predicting genetic epilepsies through EMR fingerprints'
open.substack.com
EMR Fingerprint
open.substack.com
9mo
On loving a child who exists outside the margins of medical documentation
open.substack.com
The Notebook
The Kartoffel
The Kartoffel
The Kartoffel
The Kartoffel
The Kartoffel
The Kartoffel
The Kartoffel
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...
CAC2 Webinar: Improving the Pediatric Cancer Care Experience with Palliative Support - CAC2
www.cac2.org
Courageous Parents Network