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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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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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.
Join The Rare Life newsletter andnever miss an update!
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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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When your child has complex medical needs, the question of more children isn’t always simple.
And for some parents of disabled children, the decision to stop at one might not even feel like a decision at all.
In this episode, Alyssa shares responses from hundreds of parents who live in this reality: the sadness of not giving their child a sibling, the guilt of choices that never felt like choices, the relief of knowing their family is complete, and the complicated emotions that sit in between.
If you’ve felt sadness, certainty—or both at the same time—about stopping at one, we hope this episode will feel deeplyfamiliar.
Links:
Join The Rare Life newsletter andnever miss an update!
Fill out our contact form to joinupcoming discussion groups!
Listen to Ep 99: Family Planning.
Listen to 194: Season 12 Kickoff forMadeline’s big announcement!
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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!
What happens when your child’s rare disease doesn’t look “serious enough” to the outside world?
For Ali Platt, the invisibility of her daughter’s Eosinophilic Esophagitis (EoE) meant battles with doctors, endless appeals to Medicaid, and colleagues who refused understand as Ali spent months and years trying to prove that her daughter’s suffering is real.
In this episode, Ali shares it all: how caregiving collided with her career in law enforcement, the isolation she’s felt without a local support network, the constant state of survival mode, the grief of not being able to stop her daughter’s pain, and what it’s like to advocate for your child when their disabilities aren’t as visible to the general public.
If you’ve ever felt unseen, doubted, or forced to do the impossible just to keep your child safe, this episode will hit home.
Links:
Join The Rare Life newsletter andnever miss an update!
Fill out our contact form to joinupcoming discussion groups!
Listen to 194: Season 12 Kickoff forMadeline’s big announcement!
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!
Season 12 is here and, once again, the theme is all about relationships: the relationships we have with our children, our partners, our children’s medical teams, and even each other.
We’ll be sharing episodes featuring incredibly tender stories, exploring the difficulty around making friends with other disability parents, and discussing the many ways this life can change our romantic relationships, just to name a few.
Plus, we have a big announcement! This season is going to be a little different than the last 11, but don’t worry. It’s all good things, and The Rare Life isn’t going anywhere anytime soon.
Finally, we’re wrapping up this season opener with clips from the first four episodes. This is one episode you’re not going to want to miss!
Links:
Join The Rare Life newsletter and never miss an update!
Listen to the Getting to Know Alyssa episode.
Listen to 140: Alyssa’s Story.
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Join the Facebook group Parents of Children with Rare Conditions.
Therapists come and go, but that doesn’t make it easy. When a beloved therapist leaves, it can feel like losing a member of the family. And when it’s a bad fit, it can be arelief, but it’s still exhausting to start over.
In this mini episode, Alyssa reads your experiences ofloving and losing great therapists, finding the courage to end relationships that weren’t the right fit, and navigating the messy emotions in between.
If you’ve ever dreaded the change or welcomed it with open arms, you’re not alone in thisrollercoaster.
Links:
Join The Rare Life newsletter and never miss an update!
Listen to Ep. 165: What We Want Our Child’s Therapiststo Know, But Don’t Tell Them w/ Alex Farha.
Listen to Ep. 126: Therapies | When to Scale Back andHow to Do So w/ Andrea Loveday-Brown and Larkin O’Leary.
Listen to Ep. 9: 3 Ways to Take Charge of Your Therapyand Medical Team.
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Access the transcript on the website here.
Talking about disability with kids can feel like walking a tightrope. What do you say? How much do you explain? And when do you just… not?
In this episode, Alyssa and I share how we each approach these conversations with our own kids, from siblings and cousins to the curious child at the park. We talk about usingneutral language, why we skip the sugarcoating, and the importance of following your kid’s lead.
We also explore why it’s okay to keep things simple and ouch on how to talk to our disabled kids in ways that empower them as they grow.
Whether you're raising a disabled child, a sibling, or a curious kid with questions, this episode offers real-life examples and encouragement for these tender, tricky conversations.
Links:
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to joinupcoming discussion groups!
Follow Alyssa at @alyssanewt!
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.
When strangers call our kids “so inspiring,” it’s often meant as a compliment. But it doesn’t always feel like one.
In this episode, Madeline and Alyssa dive into the uncomfortable question: Do our children exist to teach or inspire others? They unpack why that idea feels off, evenwhen the intention is good.
In this episode, Madeline and Alyssa unpack the tension between learning from your child and making them a life lesson. They break down the roots of “inspiration porn,” whysome praise feels more about the speaker than the child, and how it can reduce complex lives to feel-good stories.
They also talk about what true respect looks like, and why your child doesn’t need to teach or inspire anyone to be worthy of love and support.
If you’ve ever flinched at a compliment or struggled to explain why some praise feels wrong, this one’s 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 @alyssanewt!
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.
When your child’s health stabilizes, it should feel like a win. But about when it just feels...complicated?
In this episode, Jessica Loey joins Madeline to talk about the messy reality of “after.” They explore what it’s like to go from survival mode to something that looks more stable, and how this can bring up guilt, grief, and a strange sense of disconnection from your past and your community.
If you’ve ever wondered where you belong now that your child is more medically stable, this one’s for you.
Links:
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Follow Jessica at @loeyjessica!
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Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
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.
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Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
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:
Follow Marci on Instagram @ freyasluckyarm!
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Access the transcript on the website here.
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!
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Donate to the podcast or Contact me about sponsoring an episode.
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Access the transcript on the website here.
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.
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 Kids
Follow Alyssa on Instagram @caffeinated_caregivers!
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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.
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Access the transcript on the website here.
And if you love this podcast, pleaseleave us a rating or review in your favorite podcast app!