//
sign in
Profile
by @danabra.mov
Profile
by @dansshadow.bsky.social
Profile
by @jimpick.com
AviHandle
by @danabra.mov
AviHandle
by @dansshadow.bsky.social
AviHandle
by @katherine.computer
EventsList
by @katherine.computer
ProfileHeader
by @dansshadow.bsky.social
ProfileHeader
by @danabra.mov
ProfileMedia
by @danabra.mov
ProfilePlays
by @danabra.mov
ProfilePosts
by @danabra.mov
ProfilePosts
by @dansshadow.bsky.social
ProfileReplies
by @danabra.mov
Record
by @atsui.org
Skircle
by @danabra.mov
StreamPlacePlaylist
by @katherine.computer
+ new component
ProfilePosts









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