Fifteen thousand children are born daily with congenital heart defects. Before the invention of the heart bypass machine parents would have watched their children slowly deteriorate, often dying young. Modern parents do not suffer child mortality as often, instead they live in a liminal space. Not among parents who have lost a child, a socially recognized form of grief, yet they remained touched by a sense of knowing that comes with diagnosis and medical treatment.

Dr Julia Samuel states “Grief starts at the point of diagnosis, when we can no longer assume...that we are going to live for the foreseeable future. It shatters the blissful ignorance that death happens to other people but not to ourselves.” How do we minister to families who have crossed that line of blissful ignorance into an understanding that we are mortal beings; teaching a liturgy that holds both gratitude and grief?

Central is the way church offers a counter liturgy that makes meaning of our mortality and creates a sense of embodiment over and against the liturgies of American culture that echo prosperity theology and worship wellness. The North American church has for too long leaned into the idea that we are ultimately thinking beings, but as James KA Smith proposes “What if that is actually only a small slice of who we are?”

Through the lense of pediatric heart care I will explore how families are shaped by medical trauma, using the historical and theological metaphor of the heart to create resources that broaden how we understand our mortality and ultimately how we shape our living. I will accomplish this first by conducting interviews with both parents and medical professionals that are part of the pediatric heart care system to explore different models and metaphors for processing liminal grief. Secondly, I will interview pediatric grief specialists to explore what resources from this community translate and apply to those who have not lost children but have lost “blissful ignorance.”