Who’s Caring for the Children?
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, 58 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 Share Their Perspectives: The most poignant teaching of the day was offered by parents bereaved by the loss of a precious child. 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.