A Lifetime of Moments: Building Memories and Living your Child’s Legacy Together

Time together making memories as a family may feel especially precious when the child is living with a life-threatening medical condition. Making memories and sharing experiences that become part of the child’s legacy and the family’s treasure box can take many forms and can happen anytime: special occasions or a typical weekday.

There is meaning and legacy in experiences together; there is meaning and legacy in the concrete items that emerge from these experiences, such as photos, art, handprints, music.

This conversation was guided by researcher and Child-Life Specialist Dr. Jessika Boles, together with Soulumination’s McKenzie Johnson, who shared insights into creating meaningful memories and lasting legacies. Parents Kaitin Kelly Benedict and Angie Sutphen joined the conversation, offering their personal perspectives.

Learning objectives were:

1. Describe the concept of legacy as it might intersect with the experiences of families of children with complex medical needs.
2. Identify evidence-based applications of legacy research in support of children and families experiencing significant, extended, or life-threatening illness events.
3. Explain barriers to and opportunities for enhancing legacy-oriented practices in healthcare environments to best meet the needs of patients and families.