Jessika C. Boles, CCLS
As child life specialists, we have the ability and responsibility to provide a positive and therapeutic context in which these interactions can occur, but at the end of the day, the co-creation of legacy is constant, relational, and unpredictable.
Much like the term “legacy,” the legacy living perspective is both abstract and unpredictable. At the same time, it reminds us that a child’s legacy is not a hand mold or memory box, but rather a compendium of shared moments such as those in which the mold or box were created. Legacy living reminds us that legacy is a process in which we briefly participate as a patient’s child life specialist. Should a family decline our involve mentor specific “legacy building” interventions, we have not failed or done a disservice in our role – because legacy is far bigger than a momentary creation. Instead, legacy has been a part of each intervention and interaction we have engaged in, regardless of the intended therapeutic goal. By providing experiences for patients and families to communicate, collaborate, and cope together, no matter the outcome of the patient’s illness, we have promoted continued development and legacy living.
Adopting this perspective is truly a paradigm shift, one that requires personal reflection, professional evaluation,and interdisciplinary education. When providing standard memory items such as hand prints or molds, I engage families in conversation about how each is always “perfectly imperfect,” and as unique as their child and the memories they have shared together. I do not refer to these as “legacy” in front of the family, but instead attempt to engage them in communal storytelling to illuminate the beautiful legacy their child has lived every day of their years together. When families decline hand prints, I remind medical staff on our unit that much like a patient’s mother once taught me, a child’s legacy is always far bigger than the confines of hospital walls or a pink emesis basin full of drying plaster. Just as legacy living is an ongoing and collaborative process, so too is advocacy for a new approach to an integral clinical service.