Living a medically complex life means making constant decisions under a microscope. About treatments. About schools. About rest. About what’s “enough.” And no matter what you choose, it often feels like someone is ready to tell you that you chose wrong.

In this episode, Madeline and Alyssa talk about judgment: where it comes from, how it shows up, and why it cuts so deeply for parents of disabled and medically complex kids. From medical teams and family members to disability spaces and even other caregivers, judgment has a way of creeping into places we hoped would feel safe.

This conversation also explores what it takes to rebuild trust in yourself after years of being second-guessed, and how many parents eventually reach a place of saying, “I am the expert here,” even when that comes with loss, boundary-setting, or strained relationships.

If you’ve ever felt like no choice is the “right” one, or like you’re parenting under a microscope, this episode will resonate.

When Kenya’s daughter was six, her body began changing in ways that felt impossible to ignore, even as doctors insisted it was normal. What followed was a long stretch of doubt, dismissal, and self-questioning, until Kenya finally found a specialist who confirmed what she had known all along: her daughter was experiencing precocious puberty.

In this episode, Kenya shares what it was like to fight for answers, navigate bias in pediatric care, and hold space for a child whose body and emotions were changing before she was ready. She also talks about the shock of facing the same diagnosis again with her second daughter, and how experience can simultaneously make you feel more prepared while still reopening old grief.

If you’ve ever had to trust your instincts and fight for a diagnosis your child needed, this conversation will hit close to home.

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Season 13 is here, and this time the focus is on our children’s disabilities themselves.

This season, we’ll be talking about things like navigating surgeries and procedures, trachs and vents, behavioral diagnoses, schooling options, sexual health and safety, feeling judgment, and more. As always, there will be story episodes woven throughout the season, featuring parents sharing their experiences in their own words.

We’re also sharing a few updates in this episode, including how hosting will look this season, details about our February Friends & Family Fundraiser during Rare Disease Month, and discussion groups, including the launch of our first international group.

Finally, we’re wrapping up this season opener with clips from the first few episodes. Don't miss it!

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Season 12 is coming to a close, and it’s been a season of big shifts. With Alyssa stepping in to host every episode and Madeline handling more behind-the-scenes projects, the podcast sounded a little different, but still hit all the same emotional notes. We also covered some especially heavy community topics, from family planning to marriage to familial rejection, which shaped the tone of the season in a really meaningful way.

In this finale episode, we’re sharing a quick look behind the scenes of what Season 12 was actually like for us, plus a full recap of the season through all the intro clips. We’re also playing three listener takeaways, where Cary, Meghan, and Michelle share the episodes that resonated with them most this season.

And finally, we’re giving you a little peek at Season 13 on the topic of our children’s disabilities, including long-requested topics like the NICU experience and how moms and dads are taken seriously (or not) in medical settings.

Thank you for listening, supporting Sticker Club, and being part of this community. We can’t wait to be back with you in January.

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And if you love this podcast, please leave usa rating or review in your favorite podcast app!

When a family member rejects your disabled or medically complex child, whether through subtle distancing or outright exclusion, it creates a kind of hurt that’s difficult to shake.

In this episode, Madeline and Alyssa talk through the many ways that rejection shows up in families: minimizing your child’s needs, ignoring their diagnosis, designing gatherings your family can’t access, ghosting you because emotionally engaging is too hard, or outright excluding or belittling your child.

Drawing from hundreds of community responses, we explore the emotional impact of these experiences—the isolation, the grief, the disappointment, and the shift in how we see these family bonds once these hurtful patterns emerge. We also touch on the clarity that can come from moments like this: boundaries that become necessary, expectations that change, and the people who rise to the occasion when others don’t.

If you’ve ever felt this kind of hurt from the people closest to you, we hope you feel seen and understood after this episode.

And a big thanks to our sponsor for this episode, the makers of the incredible documentary, The Zebra & The Bear!

Links:

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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.

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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!)

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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.

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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.

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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.

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