*Trigger warning - this episode contains a description of an intense death event and the death of a child. Please make space for your self care if you find the topic overwhelming.
Juli Henderson is a wife, mother of four adult children, vocal instructor, public speaker, and special needs advocate. She would tell you one of her most meaningful roles is that of Robert's mom, her son who was born with a rare mitochondrial disorder and a gene alteration. Robert died at home at the age of eighteen.
Juli's story is both painful and beautiful at the same time. She has used her experience to support other parents of disabled kids. She writes that there are two Juli's - the one before Robert's death and the one after his death. On her website In Our Arms, Juli says her "desire for you is that you will meet me with all of my imperfections, inadequacies, and faults and find hope for your life. Please allow me to show you how our Robert was placed divinely “In Our Arms.”
Juli's website includes Robert's story as well as her own. It also provides multiple resources to support parents who are raising medically fragile kids.
Juli turned the loss of her son into meaningful advocacy. She shared her beautiful story with me in a deeply moving interview.
It was great to meet you, Robert.
Listen to my conversation with Juli Henderson here:
If you have a medically fragile or seriously ill child, connect with In Our Arms at inourarms.blog.
Read about Juli’s story here.
Read Robert’s story here.
Find more podcast episodes from The Heart of Hospice at The Heart of Hospice Podcast (theheartofhospice.com)