“The expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water without getting wet.”
— Rachel Naomi Remen
Imagine a community of people — doctors, nurses, parents, social workers, educators — who compassionately care for children with life-threatening illnesses. Each brings unique expertise and urgently feels the imperative to be as helpful as possible.
Coming and going at different times of the day and night, these individuals work towards a common goal, but do not always have time to talk to — and support — one another.
Now imagine this community of caregivers joining forces to communicate and coordinate resources, build a community-based model of exceptional care for seriously-ill children, forge new bonds with one another, create tools that improve coordination of care, and ponder this question: Who’s Caring for the Children?
On June 1, 2018 fifty-eight individuals representing 20 organizations caring for seriously-ill and grieving children gathered at Jacob’s Heart in Watsonville for a day of teaching, sharing and reflection. Throughout the day, we immersed ourselves in the waters of grief, love and inspiration using newly published curriculum from the End-of- Life Nursing Education Consortium at the City of Hope adapted to address our community needs. Informed by evidence-based tools and strategies, the day of interactive training inspired those caring for children, supporting growth through experiential learning, active listening and deeply honest conversations.
Parents Shared Their Perspectives — Parents bereaved by the loss of a precious child offered the most poignant teachings of the day. Their reflections, resilience, wisdom and strength advanced our understanding of how best to serve and how essential it is that we collaborate and coordinate so that each family experiences a continuum of services seamlessly integrated from diagnosis to treatment and beyond.
On this day, we grew in wisdom and love, unifying ourselves as a caring community. We learned the importance of listening rather than “fixing” and accompanying rather than “directing.” We shared practical strategies for enduring the tough days when we feel like we’re drowning in grief and fatigue and committed ourselves to promising new strategies that inspire hope.
We are deeply grateful to the Jordan and Kyra Memorial Foundation, Lucile Packard Children’s Hospital Stanford and Hospice Giving Foundation for investing with Jacob’s Heart to train and sustain those who care for the children. We thank the Health Improvement Partnership, Central Coast Alliance for Health and the Coalition for Compassionate Care of California for their partnership in these important efforts.