Episode #263
STORY: Learning to Choose Peace as a Rare Disease Mom with Nikki McIntosh
Hello Brave Friends! Welcome to today's Story episode, #263. These are true stories from a moment in the life of a caregiving parent. We hear a crafted story, and then have a conversation with our guest that goes deeper into their experience. In this episode, Jessica Patay and Susanna Peace Lovell sit down with Nikki McIntosh, rare disease mom, advocate, author, and founder of Rare Mamas, to talk about her journey raising her son Miles, who has spinal muscular atrophy, or SMA. Nikki shares the early days of knowing something wasn't right, the persistence it took to push for answers, and how becoming an advocate for her son ultimately changed the direction of her own life. She opens up about the realities of caregiving, navigating school and community, and learning when to protect her time and energy by setting boundaries. Jessica, Susanna, and Nikki also talk about something caregiving moms often struggle to prioritize: themselves. Nikki shares how exhaustion and overwhelm led her to become more intentional about self-care, why she now considers it a non-negotiable, and what it looks like to prioritize peace while still carrying the responsibilities of caregiving. They also explore Nikki's journey to creating Rare Mamas and becoming an author, including how writing gave her a way to process her experiences, turn pain into purpose, and use her own story to support other families navigating rare disease. This conversation is a reminder that advocating fiercely for our children and caring for ourselves don't have to be opposing goals. Nikki encourages fellow caregiving moms to keep pushing for answers, protect their energy, use their gifts to serve others, and make room for joy and peace along the way. We see you, and we love you! Find more information about Nikki McIntosh here . Find Nikki’s book, Rare Mamas here . Find more information about Life Coach, Susanna Peace Lovell here . Find Susanna’s book, Your True Self is Enough here . Find our first book from We Are Brave Together, Becoming Brave Together here . Find our second book from We Are Brave Together, Suddenly Brave Together here . Find FULL episodes and clips of our podcast on Youtube here . Brave Together is the podcast for We are Brave Together, a not-for-profit organization based in the USA. The heart of We Are Brave Together is to strengthen, encourage, inspire and validate all moms of children with disabilities and other needs in their unique journeys. JOIN the international community of We Are Brave Together here . Donate to support all of We Are Brave Together's programs and offerings here . Can’t get enough of the Brave Together Podcast? Follow us on Instagram , Facebook and Youtube . Feel free to contact Jessica Patay via email: jpatay@wearebravetogether.org If you have any topic requests or if you would like to share a story, leave us a message here . Please leave a review and rating today! We thank you in advance! Disclaimer
