Two weeks ago marked five years since my daughter June entered hospice care, and today, February 4th, marks five years since she passed away. While I often share June’s story of her final days with family, close friends, and fellow parents I meet through the June Jessee Memorial Foundation (JJMF), I have hesitated to write about it on a blog or social media. Initially, I feared negative comments or judgment regarding our family’s decisions; my heart was too tender to handle any potential backlash. As time passed, my reluctance stemmed more from the difficulty of revisiting such a dark chapter of our lives.
However, during a recent JJMF Moms Connection event, I realized through our conversation that sharing June’s story could benefit our community of parents. After our Zoom session, I thought, “Maybe it’s time, Genny. Perhaps someone needs to hear what we experienced.”
Parents of children with complex medical needs, like my daughter who had a challenging 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 guide our children through their final moments. Given the number of children in our community who may not reach adulthood, it’s crucial to have these discussions early on—ideally during the acceptance phase of our child’s condition. Hence, I am sharing the story of June’s passing.