On this special episode of I Don't Know How You Do It, a powerful panel of three  parents share their stories of rare disease, debate the value of staying hopeful, and explore what it means to be resilient."Sometimes resilience just means getting up and doing the next thing day after day after day. It doesn't need to be big and heroic. It can just be doing the next right thing." (Nikki McIntosh)Patti Hall is the author of the memoir Loving Large: A Mother's Rare Disease Memoir. Nikki MCintosh is the creator and founder of Rare Mamas, a resource for mothers of children with Rare Diseases, and host of the Rare Mamas Rising podcast. Daniel DeFabio is the Director of Community Engagement at Global Genes, co-founder of Disorder, the Rare Disease Film Festival, and the Disorder Channel.In this episode, you'll learn: 1. What oxygen tanks help people through the most challenging times2. How we can embrace hope while also protecting ourselves from being too hopeful in difficult situations3. What  resilience looks like in the face of a rare disease diagnosisBooks Recommendations:1. Loving Large: A Mother's Rare Disease Memoir by Patti Hall2. When Bad Things Happen to Good People by Harold Kushner3. Hope(less) by Catherine Hammond4. Raising a Rare Girl by Heather Lanier5. A Sky Full of Stars by Meg Apperson6. No Such Thing as Normal by Megan DeJarnett7. Extraordinary: A Book for Children With Rare Diseases by Evren  & Kara Ayic8. Still Point of the Turning World by Emily Rapp Black9. Bewilderment by Richard Powers10. Dear Edward by Ann NapolitanoRate, Review, & Follow on Apple Podcasts "This is my go-to podcast for inspiration and to discover new approaches to embrace the challenges in my life." If that sounds like you, please consider rating and reviewing my show! This helps me reach more people -- just like you -- find strategies and insights to do the things that feel undoable. Click here, scroll to the bottom, tap to rate with five stars, and select “Write a Review.” Then be sure to let me know what you loved most about the episode! Also, if you haven’t done so already, follow the podcast. Follow now! Sign up for my newsletter and learn more about these remarkable stories at www.jessicafeinstories.comOrder Jessica's memoir, Breath Taking: A Memoir of Family, Dreams, and Broken Genes Watch Jessica's TedX TalkMusic credit: Limitless by Bells

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