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, gives an overview of Julianna’s life, including the diagnostic odyssey, her hospitalizations, their decision to stay at home with hospice, and her end of life. “That last hospitalization, we were finally introduced to palliative care … I think everyone kind of knew it was going in that direction, and so they finally offered it to us and it was such a relief finally to be able to talk about these things that were still difficult. But to be able to talk to a medical team about them, about our fears, what we wanted, what may happen and what could be done, that kind of thing.”
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 what a difference fellow parents and providers have made. “I guess I’d rather not know you but it’s really amazing, the people you meet and how they can help you; and then one day you are going to be that person for someone else, right?
In this Zoom interview with CPN, Michelle — a neurologist herself, and mother of Alex (age 7) and Julianna, who had a severe form of Charcot-Marie-Tooth disease and died at age 5 — reflects on how her daughter’s journey has impacted her own practice of medicine. “Having gone through what we did, I empathize even more with my patients. I know a lot more about what it’s like to be a caregiver and that’s something that we are all exposed to in medicine but until you’ve done it, you have no idea what it is like to be a caregiver. ..I’ve never been afraid to have the conversations but I’m even less afraid of it now because it’s even harder when it’s a child.”
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 thoughtful way the family gave away her beloved toys at her service. The clothes are hard, especially the princess dresses.
In this Zoom interview with CPN, Michelle — mother of Alex (age 7) and Julianna, who was diagnosed with a severe form of Charcot-Marie-Tooth disease — 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.”
In this Zoom interview with CPN, Michelle — mother of Alex (age 7) and Julianna, who was diagnosed with a severe form of Charcot-Marie-Tooth disease — talks about how her daughter deepened her faith.
In this Zoom interview with CPN, Michelle — mother of Alex (age 7) and Julianna, who was diagnosed with a severe form of Charcot-Marie-Tooth disease — explains how she began sharing the exceptional conversation she had with Julianna about her wishes and how the writing turned into a story on CNN … which snowballed, and the range of feedback, judgement and comments she got, good and bad.
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 — reads a transcript of her conversation with Julianna in which Julianna asks questions about going to heaven. Exquisite, exceptional, courageous. A blessing. And Blyth reacts.
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 — shares the parents’ journey from No Hospice to Hospice, from fear of Julianna dying at home to Julianna’s articulate, spiritual insistence she stay at home. … “We just felt like we had to honor that. We had the support of hospice; we knew we could call on them. We knew we could keep her comfortable and still there was that out if she changed her mind or if we changed our mind. That made it less scary knowing that we could make that decision.”