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.

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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.

Links:

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Access the transcript on the website here.

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Your child’s diagnosis can reshape everything, marriages included. The same partnership that once felt effortless can become consumed by care plans, schedules, and unspoken grief. Over time, love turns into teamwork—and sometimes, survival. 

In this conversation with Amanda Griffith-Atkins, we unpack the real challenges couples face when parenting through medical complexity: the imbalance of the mental load, the grief that seeps into communication, and the long road back to connection. Amanda offers practical, compassionate guidance for finding your way back to each other, even if right now, your marriage feels like it’s in survival mode.

If you’ve ever wondered what “making it work” really looks like when life is this hard, this conversation offers validation, compassion, and a path back to understanding.

Links:

Get a copy of How to Handle More Than You Can Handle by Amanda Griffith-Atkins.

Listen to Ep 156: Should I Get a Divorce?

Listen to Ep 180: Does It Get Easier?

Listen to Ep 159: Sharing the Mental Load.

Listen to Ep 147: Sexual Intimacy.

Listen to Ep 146: The Dad Episode.

Listen to Ep 182: Hobbies.

Get a copy of Fair Play by Eve Rodsky.

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Fill out our contact form to join upcoming discussion groups!

Follow Amanda on Instagram @amanda.griffith.atkins!

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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!

When your days revolve around medical routines, sleepless nights, and endless caregiving, marriage can start to feel more like project management than partnership.

In this episode, Madeline and Alyssa unpack all the ways that marriage is impacted amidst  medical and disability parenting—the disconnection, resentment, and chronic stress that test relationships, and the deepened understanding, teamwork, and shared strength that can come from walking through it together.

Whether you think your marriage has struggled, beenstrengthened, or maybe experienced a little bit of both, this episode has something you can relate to.

Links:

Listen to Ep156: Should I Get a Divorce?

Listento Ep 187: Do you Miss Who You Used to Be?

Listento Ep 159: Sharing the Mental Load.

Listento Ep 147: Sexual Intimacy.

Listento Ep 171: Financial Strain.

Listento Ep 99: Family Planning.

Listento Ep 146: The Dad Episode.

Listento Ep 139: In-Home Nursing.

Listento Ep 135: Careers.

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Access the transcript on the website here.

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

From the moment her daughter was born, Roya had an inkling that something was different. What followed was a long year of uncertainty, endless medical tests, and finally anofficial diagnosis of Schaaf-Yang syndrome... all on top of learning a new language of care no parent expects to need.

In this episode, Roya shares the disorienting early days of her daughter’s diagnosis journey, what tending to her own mental health looked like in the midst of caregiving, and how she eventually found purpose in advocacy and community. From becoming her daughter’s “historian” to learning that even the strongest caregivers break down, Roya’s story captures so many of the aspects that shape the lives of disability parents.

If you’ve ever had to rebuild yourself in the middle of medical chaos, this conversation will hit home.

Links:

Listen to Ep. 180: Does Disability Parenting Ever GetEasier?

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When your life has revolved around caring for your medically complex child, their absence changes everything: your routines, your identity, your relationships, and evenyour purpose in life.

In this tender conversation, Stephanie Stanley shares what it’s like to live through end of life decisions for your medically complex child and to continue on after the caregiving ends. We cover the isolation that follows, the way grief changed her relationships and community, and the small ways she’s keeping Payton close.

She also opens up about the support that helped her most, her advice for those walking alongside grieving parents, and what she wishes others understood about the grievingprocess after child loss.

Just a note: this episode covers themes of grief,child loss, end of life decisions, and more. Please listen with care.

If you have lost a child, may face child loss in the future, or simply care for someone who has been in a similar position, this is an episode you can’t miss.

Links:

Listen to Ep 152: Stephanie’s Story.

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Sometimes the path to parenthood looks nothing like we planned.

For Kristen, years of infertility led to adoption... and ten days after bringing her daughter home from the NICU, a cystic fibrosis diagnosis turned her world upside down again.

In this episode, she shares what it’s been like to navigate open adoption alongside the realities of raising a medically complex child: the intertwined joy of becoming a parent and the heartbreak of another family’s separation, the shock of adiagnosis, the fog of early grief, the gaps in family medical history, and the delicate balance of honoring her daughter’s birth family while advocating for her care.

If you’ve ever wondered what it’s really like to navigate disability and adoption at the same time, this conversation pulls back the curtain.

Links:

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From the moment Ashley learned she was carrying twins, her life took a turn she would never have imagined.

A diagnosis of twin-to-twin transfusion syndrome set off a chain of events: heart-wrenching decisions for her twin daughters, another complicated pregnancy ending in an emergency C-section at 24 weeks, and more than a year in the NICU with her son. Along the way, she wrestled through overwhelming grief, advocated for her son in a complex medical world, and discovered the ways in which love,light, and loss can coexist.

If you’ve ever lived through what felt like a never-ending medical crisis, or wondered if joy could return after devastation, Ashley’s story is for you.

Links:

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Connect with Ashley on Instagram @ash.bouch!

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Access the transcript on the website here.

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

Making friends as a disability parent sounds like it should be easy. We’ve already got so much in common. But in reality, it’s complicated.

In this episode, Alyssa and Madeline share community stories about what makes these friendships so hard to build and sustain: the comparisons that creep in, the exhaustion that leaves little room for connection, the grief of losingfriends along the way, and the longing for people who “just get it.” Plus, they share a few pieces of advice on how to overcome some of these potential roadblocks.

If you’ve ever wondered why making and keeping friends feels so complicated in this world, this conversation will remind you that you’re not alone.

Links:

Join The Rare Life newsletter andnever miss an update!

Fill out our contact form to joinupcoming discussion groups!

Listen to Ep 157: Friendships with People Who Don’tHave Disabled Children.

Listen to Ep 151: Fostering Friendships with OtherDisability Parents.

Listen to Ep 154: Deaths in the Community.

Listen to Ep 194: Season 12 Kickoff forMadeline’s big announcement!

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Donateto the podcast or Contactme about sponsoring an episode.

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Access the transcript on the website here.

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