Two weeks ago marked five years since my daughter Maya entered hospice care, and today, February 4th, is five years since her passing. While I have shared the intimate details of Maya’s end-of-life journey with family, close friends, and fellow parents I’ve met through the Maya Harper Foundation (when they ask), I’ve hesitated to put it out there on a blog or social media. Initially, I feared negative comments or judgment about our family’s choices. My heart was too tender to withstand any potential criticism. Over time, my reluctance shifted from fear of backlash to an inability to revisit such a painful period.
Last year, during a Maya Harper Moms Connection event, I realized through our discussions that sharing Maya’s story could be beneficial for our community. After the Zoom session, I reflected, “Maybe it’s time, Jenna. Perhaps someone needs to hear our experience.” Parents of children with complex medical needs (Maya had a complicated neurological disorder: you can read more about it here) often discuss medications, treatments, and services, yet we seldom talk openly about death and how we support our children through their final moments. For a community where many children may not reach adulthood, this is a vital conversation we must have early on… or at least when we begin to accept our child’s condition. Hence, I will share the story of Maya’s passing.
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