From a fear of a home death to feeling it was the right thing. And what to do with the room after?

In this Zoom interview with CPN, Michelle — mother of Alex (age 7) and Julianna, who had a severe form of Charcot-Marie-Tooth disease and died at age 5 — talks about the evolution of her thinking about where it would be best for Julianna to die, and the critical role that hospice played. “Her room, her home was so important to her.” “Now I can’t imagine leaving our home.” “Her room was like a character in her story.”