by Madeline Cheney
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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🇺🇲
Publishing Since
5/7/2020
Email Addresses
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April 17, 2025
Host Rachel Alves interviews Ali Miller, Bethany Mikulis, Melissa Kellylove, and Rachel Alves about how parenting a disabled child reshapes their belief systems.
April 10, 2025
<p>For a lot of us, the answer isn’t simple. You can miss your lighter, less-traumatized self and feel proud of who you’ve become.</p><p>That’s the tension so many of us sit in as medical parents: grieving the carefree, well-rested version of ourselves while also seeing strength, resilience, and depth we didn’t know we had.</p><p>In this episode, I’m joined by Alyssa Nutile to unpack the big, messy feelings that come with identity loss, personality shifts, and how we change when our child’s life is on the line, plus the unexpected ways we’ve grown and adapted.</p><p><br></p><p><strong>Links:</strong></p><p>Hear Alyssa’s other episodes: <a href="https://therarelife.org/show-notes/ep-180-does-disability-parenting-ever-get-easier-survival-mode-burnout-mode-and-beyond-w-erica-stearns-and-alyssa-nutile">180: Does it get easier?,</a> <a href="https://therarelife.org/show-notes/ep-179-exhaustion-w-alyssa-nutile">179: Exhaustion,</a> <a href="https://therarelife.org/show-notes/ep-174-a-case-against-silencing-disability-parents-on-social-media-w-alyssa-nutile">174: Silencing,</a> <a href="https://therarelife.org/show-notes/ep-171-the-financial-strain-of-medical-parenting-w-amanda-griffith-atkins-alyssa-nutile">171: Financial Strain</a>, <a href="https://therarelife.org/show-notes/ep-170-hospitalizations-triggers-shoddy-sleep-and-food-discharge-hangover-w-alyssa-nutile-and-larisa-bothma">170: Hospitalizations,</a> <a href="https://therarelife.org/show-notes/ep-140-alyssas-story-a-mistaken-brain-surgery">140: Alyssa’s Story</a>, <a href="https://therarelife.org/show-notes/ep-140-alyssas-story-a-mistaken-brain-surgery">125: Travel w/ Disabled Kids</a></p><p><a href="https://docs.google.com/forms/d/e/1FAIpQLSfngJAzL1UjQ9FOKHwpLSNzj3nBXIKLZXYSbCYounjfqLxD5Q/viewform?usp=sf_link">Fill out our contact form</a> to join upcoming discussion groups!</p><p>Follow Alyssa at <a href="https://www.instagram.com/caffeinated_caregivers/">@caffeinated_caregivers!</a></p><p>Follow us on Instagram <a href="https://www.instagram.com/the_rare_life/">@the_rare_life</a>!</p><p><a href="https://therarelife.org/donate">Donate to the podcast</a> or <a href="https://therarelife.org/contact">Contact me</a> about sponsoring an episode.</p><p>Follow <a href="https://www.facebook.com/people/The-Rare-Life-Podcast/100039719031110/">the Facebook page</a>.</p><p>Join the Facebook group <a href="https://www.facebook.com/groups/parentsofrare">Parents of Children with Rare Conditions</a>.</p><p>Access the transcript on the website <a href="https://therarelife.org/">here</a>.</p><p>And if you love this podcast, please leave us a rating or review in your favorite podcast app!</p>
April 3, 2025
<p>When Leah Crum gave birth to her daughter Camilla, she had no idea she was about to be launched into a world of medical unknowns, an undiagnosed rare condition, and 118 days in the NICU.</p><p>In this episode, Leah talks about the emotional whiplash of life in the NICU, the slow heartbreak of delayed diagnoses, and the grief that comes with being told your child may not live to adulthood.</p><p>We also talk about what it means to create an inclusive family, not just for Camilla, but for her neurotypical little sister, Paisley. From rude comments at the grocery store to intentionally planning joy-filled days, Leah opens up about what’s changed in her parenting, her worldview, and her faith.</p><p>This episode is about curveballs, sibling dynamics, and sometimes, saying “ew” to rude strangers. It’s a funny, real, and tender one.</p><p>And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!</p><p><strong>Links:</strong></p><p><strong>If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical Helpline for any assistance you need at 1-800-970-2337 or </strong><a href="https://www.moogmedical.com/contact/"><strong>moogmedical.com/contact.</strong></a></p><p><a href="https://docs.google.com/forms/d/e/1FAIpQLSfngJAzL1UjQ9FOKHwpLSNzj3nBXIKLZXYSbCYounjfqLxD5Q/viewform?usp=sf_link">Fill out our contact form</a> to join upcoming discussion groups!</p><p>Follow Leah at <a href="https://www.instagram.com/leahcrum_/">@leahcrum_!</a></p><p>Follow us on Instagram <a href="https://www.instagram.com/the_rare_life/">@the_rare_life</a>!</p><p><a href="https://therarelife.org/donate">Donate to the podcast</a> or <a href="https://therarelife.org/contact">Contact me</a> about sponsoring an episode.</p><p>Follow <a href="https://www.facebook.com/people/The-Rare-Life-Podcast/100039719031110/">the Facebook page</a>.</p><p>Join the Facebook group <a href="https://www.facebook.com/groups/parentsofrare">Parents of Children with Rare Conditions</a>.</p><p>Access the transcript on the website <a href="https://therarelife.org/">here</a>.</p><p>And if you love this podcast, please leave us a rating or review in your favorite podcast app!</p>
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