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The Rare Life

Madeline Cheney
The Rare Life
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  • Book Review: “How to Handle More Than You Can Handle” by Amanda Griffith-Atkins
    What does it really mean to care for yourself while raising a disabled child? Not the bubble bath kind of self-care—but the kind that starts with naming your anger, your grief, your jealousy, and not pushing them down just because “good parents don’t feel that way.”In this episode, Amanda Griffith-Atkins joins Alyssa and I to talk about her new book How to Handle More Than You Can Handle: Caring for Yourself While Raising a DisabledChild. Amanda shares what led her to write this book and how the book is structured to be helpful for busy parents of disabled children. Each of us also share sections of the book that we love. This book gives us the tools to explore radical acceptance, emotional self-compassion, and space to feel what we’re actually feeling. How to Handle More Than You Can Handle is out now on Amazon and other book retailers.Links:Get your own copy of Amanda’s book How to Handle More Than You Can Handle.Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Follow Amanda on Instagram @amanda.griffith.atkins!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, pleaseleave us a rating or review in your favorite podcast app! 
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  • Mindfulness for Medical Parents w/ Chrissy McGuire
    Meditation might seem like a luxury when you’re managing meds, appointments, and survival mode. But for some of us, it becomes a lifeline.In this episode, Chrissy McGuire shares how mindfulness helped her survive the NICU, find her footing as a single mom to two disabled kids, and notice the small moments of joy that still exist in the chaos.Chrissy also leads us through a guided meditation, right inside the episode—a short, calming practice you can return to again and again, especially on the days that feel too heavy to carry alone.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Chrissy on Instagram @chrissy.mcguire_!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
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  • 192: Season 11 Finale | Poolside Chats with Texas ECI, Production Chaos, + Summer Mini Eps w/ Alyssa Nutile
    Season 11 is coming to a close, and it’s been one of our most emotional seasons yet. From intense behind-the-scenes chaos to topics that pushed the boundaries of what we’ve covered before—this season stretched us in all the right ways.In this finale episode, I’m joined again by Alyssa to reflect on what made this season both overwhelming and meaningful, from grief and seizures to politics and prenatal diagnoses. We’re also sharing a powerful listener testimonial from Michelle, who describes how her favorite episode from the season helped her feel validated and seen.And of course, we’re giving you a little peek at what’s ahead, including our summer mini episodes (with some solo episodes from Alyssa!), our upcoming merch fundraiser, and a big announcement coming with the Season 12 kickoff.Thanks for listening, for sharing, and for being part of this community. Whether this was your first season or your eleventh, we’re so glad you’re here ❤️Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
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  • 191: Abortion + Parents of Disabled Kids w/ Alyssa Nutile
    No one expects to be here. But many of us are.In this episode, Alyssa Nutile and I open up a raw and rarely discussed topic: abortion after a prenatal diagnosis. We talk about how these decisions are shaped by love, by fear, by systemic failures, and by the weight of what it means to bring a child into the world when you know what they might face.We also explore what it means to carry both love and grief into that decision-making space and why so many parents are left feeling like there was never really a choice at all.It’s a heavy conversation. And it’s also a deeply human one. If you’ve been there, are there, or just want to understand this conversation better, this episode is for you. Links:Hear Alyssa’s other episodes: 187: Do You Miss Who You Were? BONUS: The Political Climate, 180: Does it get easier?, 179: Exhaustion, 174: Silencing, 171: Financial Strain, 170: Hospitalizations, 140: Alyssa’s Story, 125: Travel w/ Disabled KidsJoin The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Alyssa at @caffeinated_caregivers!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
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  • 190: Colleen’s Story | Epilepsy, Brain Surgery, + Rage Hiking
    Sometimes the only place big enough for the weight you’re carrying is the side of a mountain. That’s where Colleen—and dozens of other moms—learned how to let it out.In this episode, Colleen tells the story of her son Owen’s explosive onset epilepsy, her family's long search for answers, and the brain surgery that changed everything. She opens up about the loneliness of being undiagnosed, the emotional whiplash of unexpected good news, and the identity shift that comes with raising a child with complex needs.We also talk about how Electric Love retreats came to be and why sometimes the most healing thing you can do is a tough hike with people who get it.Also, a big thanks to Kate Farms for sponsoring this important episode! Links:Learn more about the many products Kate Farms offers forour formula and tube-fed kids!Learn more about Electric Love Retreats!Listen to Ep 183on Epilepsy with Hailey Adkisson.Follow Electric Love on Instagram @electric_love_retreats!  Follow Colleen on Instagram @raising_owen!Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page.Access the transcript on the website here. And if you love this podcast, pleaseleave us a rating or review in your favorite podcast app! 
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This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney. Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting. Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.
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