Coping with Grief and Keeping the Legacy Alive
In this deeply moving episode, host Caleigh Haber sits down with Diane Shader Smith, a powerful advocate in the cystic fibrosis community and author whose daughter Mallory lived with CF until age 25. Diane has channeled her grief into meaningful advocacy work, sharing Mallory's story through the acclaimed books "Salt in My Soul" and "The Diary of a Dying Girl," as well as a documentary that has reached audiences worldwide.
This conversation explores the complex journey of grief after losing a loved one to chronic illness, offering honest insights into how families navigate loss while keeping legacies alive. Diane shares how she's found purpose through advocacy work, particularly in raising awareness about antimicrobial resistance and phage therapy research, while maintaining space for both grief and joy in daily life.
Key Topics Covered:
- Navigating the early stages of grief and trauma after losing a child to CF
- Finding meaning and purpose through advocacy and storytelling
- Balancing grief with joy and living forward while honoring the past
- The power of community connection during loss and healing
- Practical ways to honor loved ones and keep their legacies alive
- Understanding phage therapy and its potential for CF treatment
Whether you're living with chronic illness, supporting someone who is, or working in healthcare, this episode offers profound insights into resilience, community, and the healing power of sharing our stories. Diane's journey reminds us that even in our deepest grief, we can find ways to create meaning and help others.
Medical disclaimer: This podcast is for educational purposes only and should not replace professional medical advice.
Creators and Guests
Host
Caleigh Haber-Takayama
I'm Caleigh Haber, a cystic fibrosis warrior, two-time double lung transplant recipient, and passionate advocate for the chronic illness community. Born with CF, I've navigated countless surgeries and medical challenges while choosing to live each day to the fullest in honor of my donors and with deep gratitude for my supportive community. Through Fight2Breathe and my podcast "Our Fight to Breathe," I advocate for the cystic fibrosis, organ transplant, and rare disease communities, working to raise awareness and inspire others to thrive despite their challenges.
Guest
Diane Shader Smith
Diane Shader Smith is a powerful voice in the cystic fibrosis (CF) community, a tireless advocate, and a devoted mother. Her daughter, Mallory, lived with CF and passed away at the age of 25. Since then, Diane has used her voice to raise awareness, funding, and hope by sharing Mallory’s story—most notably through the books Salt in My Soul and The Diary of a Dying Girl. Diane travels the country speaking about her daughter’s writing, offering insight into chronic illness, the emotional toll of the patient journey, organ transplant, and the promise of phage therapy. Today, Diane is a global spokesperson, continuing to speak on love, loss, and legacy.