Medicaid Cuts | Implications for Families Like Ours + What We Can Do About It
When the federal government slashes Medicaid funding, states are left to decide what happens next... and families like ours are left bracing for the fallout.In this mini episode, Madeline and Alyssa talk about what these federal cuts really mean for families of disabled and medically complex children. They break down the impacton Medicaid HCBS waivers, what states can (and might) do next, and why the math just doesn’t add up for our kids.They also get real about the mental health toll of uncertainty, the pain of being ignored, and what it means to build community resilience when the systems built tosupport you start to crumble.If you’re feeling confused, furious, or just deeply tired, this conversation is for you.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming 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.
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Groundhog Days, Gradual Changes, & Deep Family Ties | Marci’s Catch-Up
When you’re deep in the world of disability parenting, it’s easy to feel like every day is the same. The meds. The appointments. The routine that doesn’t seem to change much, even as the years go by.In this episode, Marci returns to share what life looks like now, two and a half years after her conversation about grieving her daughter Freya’s intellectual disability. Sheopens up about the slow pace of progress, the grief that still sneaks up on her, and how, while parts of Freya’s disabilities are difficult, her family cherishes and celebrates Freya’s joy in the day to day.We also talk about the messy emotions of school decisions, the heartbreak of communication barriers, and why disability has pulled Marci into the world of politics—whether she likes it or not.If you’ve ever felt caught between acceptance and grief, you’ll feel right at home in this one.Links:Listen to Ep 114: Grieving Our Children’s IntellectualDisabilities + Facing Our Internalized Ableism with Marci Dunning.Follow Marci on Instagram @ freyasluckyarm!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. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here.
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Dreams That Stir Up Grief
What does it mean when a dream brings you to tears before breakfast?In this mini episode, Alyssa and I dive into grief dreams: those vivid, emotional dreams where our children speak, run, play, or show up in ways they can’t in waking life. Sometimes they comfort us. Sometimes they wreck us for the day.We share stories from the community about the longing, guilt, tenderness, and pain these dreams bring up, and how they reveal just how deep our grief can go. If you’ve ever woken up from a grief dream that colors your whole day, this episode is for you!Links:Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Fill out our contact form to join upcoming discussion groups!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.
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How Your Monthly Cycling Might Be Impacting Your Caregiving Experience w/ Suzi Boubion
Hormones, cycles, and caregiving—oh my.In this Summer Mini, Madeline is joined by Suzi Boubion to talk about how our menstrual cycles can affect caregiving formedically complex kids. From feeling like a superhero during ovulation to falling apart in the luteal phase, Suzi breaks down the emotional and physical rollercoaster that is living in a cycling body.They talk about the specific ways each phase can show up in caregiving: which days are best for handling appointments, why grief hits harder at certain times of the month, and how understanding your own rhythms can bring clarity and help you embrace self-compassion instead of perfection.If you’ve ever felt like your hormones are sabotaging your ability to cope, this episode might help.
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Everything You’ve Ever Wanted to Know About Alyssa
We usually cover a different guest and topic each episode, but this week, we’re peeling back the curtain to get to know Alyssa: the show’s producer, right-hand lady, and longtime member of the community. In this special mini episode, Alyssa shares more about herself, from her life as a caregiver and mom to her love of swimming, salted caramel ice cream, and why getting dressed up feels like the ultimate chore.She talks about going from listener to producer, how she copes with heavy topics, and why she’d rather talk about her hatred of dishes than accept too many compliments. You’llalso hear plenty of lighter tidbits, from her favorite childhood memories to why banana-flavored candy is absolutely not it.This episode is equal parts heartfelt and fun—an honest, vulnerable glimpse into the person behind the scenes.Links:Listen to 140: Alyssa’s Story.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, 125: Travel w/ Disabled KidsFollow Alyssa on Instagram @caffeinated_caregivers!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. 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!
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.
Ireland