4/21/2020 Companioning – The Gift of PresenceJulianne Tullis MSW When we think on the idea of Presence, we consider Presence as…
Finding HOME in the NICU and the Heart Our son Sage was born healthy, or so we believed. There were no pre-determined problems…
Reflections on Adult ParentingFirst published on The Dravet Syndrome Foundation site, June 21, 2019. Barb and John were…
Collaborative Goal-SettingWhat is our goal for treatment? Seems like a simple question, but the answer is…
One nurse asked us, "Does your Rabbi think that she'll recover?"Courageous Parents Network interviewed a couple about how their faith affected end of life decisions…
A Terminal Diagnosis and Risk AversionWe found out the devastating news on July 17, 2013. A day we won't ever…
The Cure We Don't WantI spend a lot of time raising awareness for Menkes Disease and other Rare Diseases,…
A Blessing and a BurdenThe author, Barb, is a founding parent advisor to Courageous Parents Network. This post was…
Considering Respite and Long-Term Care for Children with Medical ComplexityParents demonstrate love in many ways, including ways that I am sure they would not…
