*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 has turned the loss of her son into meaningful advocacy, sharing her wisdom with other caregivers. Juli and her husband Chris were the parents of a son, Robert. Robert had a rare mitochondrial disorder. Genetic testing revealed that he had a gene alteration that predisposed him to seizures and developmental disorders. Robert’s disease was progressive, and he was eventually diagnosed with cerebral palsy, autism, and intellectual and developmental disabilities (I/DD). Caring for him and managing his symptoms meant spending days in the hospital. Being a caregiver for a child with a rare life-limiting illness changed Juli forever. She describes the experience as fearful, devastating, lonely, life-altering, and angry.  

Managing Robert’s medical needs was a big part of their lives, but Robert was so much more. Juli’s stories of Robert include laughter, joy, music, and family. She’ll tell you Robert was known for his big, toothy smile, and his all-embracing hugs, along with his capacity to give and receive love. 

After Robert’s death at the age of 18, Juli came to a place of recognition of the joy of caring for Robert. These days, she calls it a gift to have had Robert just as he was. Her website In Our Arms shares insights about her experience through her blog, and includes resources on self care, grief, and epilepsy.  

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.

Social media for Juli Henderson and In Our Arms:  Instagram  Facebook

Odonata Care offers help for caregivers at thecareplan.net.

Order your copies of The Care Plan here. It’s available in English and Spanish!

Check out the free video tutorials from Nancy Heyerman and Brenda Kizzire here.  

If you have questions about hospice care or need to troubleshoot the care you’re already receiving, book a session with an expert Hospice Navigator at theheartofhospice.com.  

Book podcast host Helen Bauer to speak at your event or conference by sending an email to [email protected].

Find more podcast episodes from The Heart of Hospice at The Heart of Hospice Podcast (theheartofhospice.com) 

Follow The Heart of Hospice on Facebook, Instagram, and LinkedIn.