Today’s episode is a quick moment to pause and say thank you. Your messages about feeling understood, less isolated, and more connected remind us why TRL exists in the first place. Hearing how this podcast fits into your NICU nights, med routines, or car rides means more than we can say.Sticker Club is also open for a few more days, and it’s one of the reasons we can keep making episodes like this. If you want to support the work and grab this year’s sticker designs, now’s the time. It truly helps keep this community running.Links:Join Sticker Club! Support The Rare Life and get a thankyou sticker (or four!)Follow Amanda onInstagram.Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents ofChildren with Rare Conditions. And if you love this podcast, please leave us a rating or review in yourfavorite podcast app!
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The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins
When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner.And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and occasionally– like the celebrations might just be more trouble than they’re worth.In today’s episode, Amanda Griffith-Atkins and I discuss listener feedback and contributions about how complicated the holiday season feels for parents of disabled children, suggestions for how to make the holiday season feel just a little bit more manageable, and how adjusting our expectations has made a big difference for each of our families.And a big thanks to our sponsor for this episode, the makers of the incredible documentary, The Zebra & The Bear!Links:Watch The Zebra & The Bear (coming to streaming platforms the day after Thanksgiving!)Join Sticker Club! Support The Rare Life and get a thank you sticker (or four!)Follow Amanda on Instagram.Follow me on Instagram.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
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1:37:06
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1:37:06
205: Our Relationship With Our Child’s Medical Team w/ Madeline
For medically complex families, relationships with ourchildren’s medical teams are anything but simple. In this episode, Madeline and Alyssa dig into what makesthem so emotionally loaded: the power imbalance, the fear of being dismissed,the exhaustion of coordinating between specialists, and the pressure to keepeveryone “on your side.”We also talk about the moments that build trust — and theones that completely break it — plus what it feels like to train providers onrare diseases and advocate in systems that weren’t built for kids like ours.If you’ve ever struggled with the emotional complexity ofthese relationships, this conversation will help you feel understood and lessalone. Links:JoinSticker Club!Support The Rare Life and get a thank you sticker (or four!)Listento Ep 140: Alyssa’s Story.Listento Ep. 67: What Your Child’s Doctors WantYou to Know, But Don’t Tell You.Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app
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1:11:42
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1:11:42
Bonus: 2025 Check-in with Disability Parents | Anxiety, Heaviness, + Navigating Relationships in a Polarizing Climate w/ Madeline
For many of us, this year has felt so heavy, from loss inthe community, to terrifying policy changes and the stress of uncertainty, to another emotional reality many didn’t expect: feeling disconnected from the people who love us but don’t understand our lives.In this episode, we talk about the weight of this year,the grief and instability running through our community, and the complicated task of navigating family and friendships in a politically charged moment. From boundaries to distancing to the exhaustion of tryingto explain ourselves, we share how parents are protecting the emotional well-being of themselves and their families, especially heading into the holidays.And a big thanks to our sponsor for this episode, themakers of the incredible documentary, The Zebra & The Bear Links:Watch The Zebra & The Bear (coming tostreaming platforms the day after Thanksgiving!)Listento the Current Political Climate + HowDisability Parents Feel About It.Listento Medicaid Cuts | The Implications for OurFamilies and What We Can Do About It.Listento Ep 154: Deaths in the Community.Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme 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 usa rating or review in your favorite podcast app
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51:36
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51:36
204: Abbey's Story | An Ultra-rare Diagnosis, Shifting perspectives + Holding onto Faith
What do you do when your baby is seizing and the people who are supposed to help you tell you that you’re overreacting?For Abbey, the fight to be taken seriously began early, and it shaped everything that came next. Her daughter Avery’s rare metabolic disorder (ADSL Deficiency) brought hospital stays, impossible medical decisions, and a long process of learninghow to live with uncertainty.In this episode, Abbey shares how she became her daughter’s advocate long before she felt ready, what it has meant to reimagine milestones through a different lens, and howshe’s built community when support is scarce. She also talks about the emotional weight siblings carry, and the ongoing, complicated role of faith in Avery’s care.If you’re learning to acknowledge the hard while still making room for joy, this episode is one you can’t miss. Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Abbey on Instagram @abbeybenj!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme 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 usa 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