Parents of seriously ill children are magic, although most would not characterize themselves that way. They move through the world with grace and determination that can only be gained by facing the unimaginable challenge of caring for beautiful children that the world often does not understand. I have the honor of working with families confronting this unimaginable challenge every day. While many think that my job entails imparting the knowledge I have gained through 15 years of experience as a social worker on patients and families, it is far more about creating space and honoring their voice. While this idea may seem simple to some, I find that it is a crucial component to being a palliative care clinician that is often overlooked.
Supporting families that are caring for a seriously ill child is not a just focus on a child’s medical complexity. It is an exploration of what brings that child joy. It is a consideration of a parent’s ability to work and to provide for the family. It is a pause to assess how a sibling is emotionally impacted. It is an acknowledgment of a grandparent’s grief as they watch their child face the most difficult challenge of their lives. It is a meeting with the school to determine how to balance a child’s medical needs with their need for peer interaction. It is a whole person, a whole family, a whole community approach to care.
So, what is the takeaway? It is not the need for sympathy or even empathy. The takeaway is the power in honoring the voice. Support and care can come from being the person to broach the topic of end of life when no one else would. Relief can be heard in the exhalation when someone validates what a parent has been thinking but has been afraid to voice. Understanding lives in the moments where the entire story is explored and received. Do not be scared to ask the questions. Parents of a child with a serious illness want to share their stories with you. They want to be seen. They want transparency. Listen, validate, honor.
LaShandra McLaughlin is the Program Manager for Transitions Kids, a community-based hospice and palliative care program based in Wake County. The mission of Transitions Kids is to compassionately care for children, families, and communities significantly impacted by illness or loss on their sacred journey of love, exasperation, triumph, and grief; to offer our gifts, skills, and informed perspectives through education, advocacy, and adventure. LaShandra has served as program manager since November 2019 but has been a member of the Transitions Kids team since its initial launch in 2015. In addition to a focus on providing support and care to children families facing serious illness, she has a particular interest in the impact of grief and loss in childhood and the need for specialized interventions designed to meet the needs of this vulnerable population. Her educational background includes a Master of Social Work from Washington University in St. Louis and a Doctorate of Social Work from the University of Southern California.