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For Parents

A Different Dream for My Child by Jolene Philo
Discussions of a family facing a life threatening birth defect of their son

Notes Left Behind by Brooke and Keith Desserich
As a remembrance for their daughter the authors chronicle their journey through a life threatening illness and death

Waiting With Gabriel: A story of cherishing a baby’s brief life by Amy Kuebelbeck
A journey with a family as they prepare to welcome and say goodbye to their son who was perfect except for his heart

Bloom by Kelle Hampton  
A personal account of dealing with the pain of diagnosis and learning to find joy and hope on new path

Just So You Know  Brigitte Crist
Written for parents who have a medically complex child from the perspective of a mother who has “been in the trenches.”  (Available in the Children’s Gift Shop)

The Still Point in a Turning World  Emily Rapp
A personal story of love, loss, and enlightenment written by a parent whose son is terminally ill.

Caring for Children Who Have Severe Neurological Impairment: A Life with Grace by Julie Hauer, MD
A great resource for family who are struggling to understand and keep informed.