The Rare Life

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 la...

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...

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 disappoi...

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 thi...

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 episod...

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 comp...

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...

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...

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. Duration: 00:36:08

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:

L...

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 stro...

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 thos...

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 bala...

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 li...

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 wonde...

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 bot...

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 h...

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 Lif...

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 thisrollerco...

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 th...

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 c...

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:

Join Th...

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...

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 celebr...

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 colo...

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 br...

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...

What does it really mean to care for yourself while raising a disabled child?

Not the bubble bath kind of self-care—but the kind that starts with naming your anger, your grief, your jealousy, and not pushing them down just because “good parents don’t feel that way.”

In this episode, Amanda Griffith-Atkins joins Alyssa and I to talk about her new book How to Handle More Than You Can Handle: Caring for Yourself While Raising a DisabledChild. Amanda shares what led her to write this book and how the book is structured to be helpful...

Meditation might seem like a luxury when you’re managing meds, appointments, and survival mode. But for some of us, it becomes a lifeline.

In this episode, Chrissy McGuire shares how mindfulness helped her survive the NICU, find her footing as a single mom to two disabled kids, and notice the small moments of joy that still exist in the chaos.

Chrissy also leads us through a guided meditation, right inside the episode—a short, calming practice you can return to again and again, especially on the days that feel too heavy to carry alone.

Season 11 is coming to a close, and it’s been one of our most emotional seasons yet. From intense behind-the-scenes chaos to topics that pushed the boundaries of what we’ve covered before—this season stretched us in all the right ways.

In this finale episode, I’m joined again by Alyssa to reflect on what made this season both overwhelming and meaningful, from grief and seizures to politics and prenatal diagnoses. We’re also sharing a powerful listener testimonial from Michelle, who describes how her favorite episode from the season helped her feel validated and seen.

And o...

No one expects to be here. But many of us are.

In this episode, Alyssa Nutile and I open up a raw and rarely discussed topic: abortion after a prenatal diagnosis. We talk about how these decisions are shaped by love, by fear, by systemic failures, and by the weight of what it means to bring a child into the world when you know what they might face.

We also explore what it means to carry both love and grief into that decision-making space and why so many parents are left feeling like there was...

Sometimes the only place big enough for the weight you’re carrying is the side of a mountain. That’s where Colleen—and dozens of other moms—learned how to let it out.

In this episode, Colleen tells the story of her son Owen’s explosive onset epilepsy, her family's long search for answers, and the brain surgery that changed everything. She opens up about the loneliness of being undiagnosed, the emotional whiplash of unexpected good news, and the identity shift that comes with raising a child with complex needs.

We also talk about how Electric L...

Grief around our children’s disabilities can take many forms. Some of us are grieving the life we thought we’d have with our child that looks so very different now. Others of us are grieving the very real possibility of losing them too soon.

In this episode, therapist and fellow disability parent Amanda Griffith-Atkins joins me to talk about the complicated grief that comes with raising a disabled or medically complex child.

We explore how this grief can morph and change, how it shows up in the quiet, ordinary moments, and how deeply human it i...

For the first time in The Rare Life history... we need a little extra time to work on the next few episodes. Not because we haven’t been preparing and planning, but because some current events have thrown a wrench into the works.

In this episode, Madeline and Alyssa talk generally about some of the recent events that have come up, how the community has been feeling about it, what it says about the world we’re living in right now, and why some of the upcoming topics needed just a little more time and context before they...

When you’re the parent of a medically complex or disabled child, the experience touches every aspect of our life – including our faith, often in unique and surprising ways.

Today, I’m sharing a vulnerable and tender episode, where I interviewed four different women, each coming to the table with their own different spiritual backgrounds, to share how their faith has changed since having a child with a medical complexity. Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis all share their unique experiences – from faith that strengthened, faith that changed, faith that diminished, and faith that never re...

For a lot of us, the answer isn’t simple. You can miss your lighter, less-traumatized self and feel proud of who you’ve become.

That’s the tension so many of us sit in as medical parents: grieving the carefree, well-rested version of ourselves while also seeing strength, resilience, and depth we didn’t know we had.

In this episode, I’m joined by Alyssa Nutile to unpack the big, messy feelings that come with identity loss, personality shifts, and how we change when our child’s life is on the line, plus the unexpected w...

When Leah Crum gave birth to her daughter Camilla, she had no idea she was about to be launched into a world of medical unknowns, an undiagnosed rare condition, and 118 days in the NICU.

In this episode, Leah talks about the emotional whiplash of life in the NICU, the slow heartbreak of delayed diagnoses, and the grief that comes with being told your child may not live to adulthood.

We also talk about what it means to create an inclusive family, not just for Camilla, but for her neurotypical little sister, Paisley. From rude comments...

When the systems your child depends on are under threat, it doesn’t feel political—it feels personal.

In this episode, Madeline and Alyssa unpack the deep unfairness of having to constantly justify your child’s worth while watching essential supports unravel in real time. They also discuss the fury that bubbles up when people call your fear “political,” the heartbreak of realizing who around you doesn’t care, and the exhaustion of never being allowed to rest.

This isn’t about debates or party lines—it’s about fear, frustration, and the deep grief of feeling unsuppo...

There are certain moments that never leave you—the sight of your child turning blue, the smell of hospital-grade hand sanitizer, the feeling of helplessness as doctors take over. Medical trauma doesn’t just happen to our kids. It happens to us too.

In this episode, therapist Rosey Schaefermeyer joins us for a deep dive into how medical trauma shapes parents, how it lingers in our bodies and minds, and why it’s so easy to feel stuck in survival mode. Rosey shares how trauma builds on itself, why some moments become impossible to shake, and what parent...

At 28 weeks pregnant with her third child, Rachel experienced the unimaginable—losing her husband in a sudden tragedy. What followed was a whirlwind of grief, survival mode, and a cross-country move while still carrying her son, Wells. But it wasn’t until after his birth that another challenge emerged: developmental delays, medical concerns, and the beginning of a diagnostic odyssey.

In this episode, Rachel shares her family’s long road to a rare diagnosis, the complicated emotions of realizing your child’s future won’t look like you imagined, and the unique challenges of raising a disabled child as a...

Imagine living on high alert, every second of every day. That’s life with severe, uncontrolled epilepsy. You’re always watching, always listening, always bracing for the next seizure. And when they happen multiple times a day, there’s no break. No way to ever fully relax.

In Ep 183 of The Rare Life, Hailey Atkison shares the raw reality of parenting a child with severe, refractory epilepsy. She talks about the emotional toll of watching her daughter, Juniper, seize multiple times a day, the way it impacts her entire family—including her sons—and the impossible task of balanci...

When your life revolves around medical schedules, appointments, and constant caregiving, hobbies can feel a little unnecessary. Where do we find the time? The energy? The mental bandwidth?

It’s easy to fall into the trap of thinking that any time spent on ourselves is selfish. But for many of us, finding ways to adapt our hobbies to fit into our medicalized life can be game-changing.

In Ep 182 of The Rare Life, Amanda Griffith-Atkins joins me to dive into all things hobbies: the loss of identity when we lose them, the guilt and grief that ca...

When Kait Parrish found out she was pregnant with twins, she imagined matching outfits, sibling giggles, and the life she had always dreamed of. Instead, at 24 weeks, she gave birth to two fragile babies fighting for survival in the NICU. Then, two weeks later, she lost one of them.

In this raw and deeply personal episode, Kait shares the heartbreak of losing Avery, the terrifying rollercoaster of Addie’s early medical battles, and how her perspective on parenting shifted when she became pregnant again. We also talk about the complexity of raising a medically complex child alongside a...

The age old question: Does this life ever get easier? And if so, when?

Just as you might expect, the answer isn’t quite cut and dry, but in this episode, I’m joined by Erica Stearns and Alyssa Nutile to sort through this complex question. Using their Caregiver Continuum framework, they offer a way for you to orient yourself and gain footing as a disability parent, even if life doesn’t always feel like it’s getting easier.

If you’ve been feeling lost and overwhelmed in this parenting journey, this episode is here to give yo...

The exhaustion that comes with disability parenting isn’t just about sleep deprivation.

It’s everything else too: the mental exhaustion of managing a child’s entire medical life. The weight of being the only one who knows all the details. The grief. The fear. The constant pressure of doing everything right with so little support. And that’s just scratching the surface.

In this episode of The Rare Life, I’m joined by our producer, Alyssa Nutile, to share responses from the community about all the things contributing to our collective exhaustion and why, some days...

When Jessica Fein’s daughter, Dalia, was diagnosed with a rare degenerative disease (MIRF syndrome) after a long diagnostic process, she was thrown into a world of medical uncertainty, impossible decisions, and the heartbreaking reality of watching Dalia’s abilities slowly fade.

In this episode, Jessica shares her adoption story with Dalia, the ambiguous grief associated with her diagnosis, how her views on the control she has over her life have changed, and the unexpected ways she found beauty in the hardest moments.

If you’ve ever fought to get answers, struggled to balance hope with h...

It’s time to officially kick off Season 11! This season, we’re diving deep into how this life affects you—the parent. From mental health to medical trauma to grief, and even hobbies, this season is all about how the experience of parenting a medically complex or disabled child shapes our lives too.

We’re also launching our second annual Friends and Family Fundraiser this season, running from 2/14-2/28. This fundraiser allows your friends, extended family, and broader support system to show up for you in a tangible way by supporting The Rare Life. And we are not aski...

Building connections can feel impossible when life is already overwhelming. That’s where The Rare Life discussion groups come in.

In this episode, I’m pulling back the curtain on our discussion groups—virtual gatherings that feel more like a book club than anything else.

You’ll hear from three amazing facilitators about the friendships, resources, and support they’ve found through this space.

If you’ve been searching for a place where you can connect with other disability parents who just get it, this is your invitation.

Links:

Join The Rar...

For disability parents, the New Year doesn’t always mean lofty resolutions or big changes. It might mean survival mode, holding boundaries, or simply getting through the day.

In this episode, I’m sharing your thoughts on New Year’s resolutions—why they’re hard, how they shift, and what really matters when life is unpredictable. From survival mode to tentative hope, this is a conversation about giving yourself grace.

If the traditional “new year, new me” doesn’t fit your life, this one’s for you.

Links:

Join The Rare Life newsletter an...

What if the hardest part of your year was also the one that shaped you the most?

In this special mini-episode, I read submissions from the community that capture the resilience, heartache, and triumphs we’ve all experienced this year (including a few entries that count as both highs AND lows.)

From the heartbreaking realities of denied services and exhausting diagnoses to the incredible wins of first smiles and newfound independence, it’s a powerful reminder that no matter how hard it gets, we’re never alone.

Tune in for a dose of solida...

What if the hardest part of your journey was the part no one saw? The silent suffering that happens behind closed doors, in the dark hours of the night, when the mask comes off and the tears flow.

In this mini-episode, I’m joined by Kara Berasi, who shares her powerful poem, The Silent Suffering. We talk about the emotional weight of caregiving, the exhaustion of advocacy, and the struggle to be honest about the pain. We also cover the way that sharing through art can allow the people who love us to get a glimpse into th...

Holidays are supposed to be full of joy, right? But for disability parents, gift-giving can bring a whole mix of feelings: grief, frustration, and why did they buy this moments. Instead of magic, we’re juggling unconventional (or maybe not age-appropriate) toys for our kids, therapy equipment wrapped in bows, and family members who just don’t get it.

In this episode, I’m replaying part of Ep 108 with Amanda Griffith-Atkins where we talk about the challenges of shopping for our disabled kids and managing those tricky expectations. We're diving into the heartbreak of gifts that miss the ma...

So many parts of this life are difficult, traumatic, and honestly just unfair for us and our children... but there are bright spots and things we find ourselves grateful for, despite the hardship.  

So to prepare for this episode, we asked you about those things you’re most grateful for in this life, and boy, did you all deliver. You mentioned things big and small and oftentimes, things we’d have probably never considered before this life of disability parenting.

And in this episode, we’re sharing them all, from the way moments with our disable...

Season 10 is coming to a close, and it’s been a good one! While a little shorter than seasons in the past, we covered some big topics from hospitalizations to crunchy medical parenting to online bullying with some amazing stories mixed in. Outside of the podcast, we added two new board members, and we had our most successful round of Sticker Club yet!

So to celebrate the end of this season, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Seas...

It’s our final Sticker Club mini episode, and today, Alyssa Nutile, producer and doer-of-all-the-things at The Rare Life, is here to break down what production looks like for each episode of the podcast, from start to finish. (It’s probably a lot more than you would think!)

And for the sake of transparency, we’re also sharing our mission here at The Rare Life, why we only fundraise twice a year, and how we use those funds. If you’ve ever wanted to get a glimpse of how The Rare Life works behind the scenes, this episode...

Watching our children go through pain in a medical setting, even when we know it’s what is best for them, can be difficult for parents to navigate. We want to help, but sometimes it can be hard to know what is actually easing instead of compounding the trauma.

Fortunately, there’s a specialty that focuses on this exact problem: enter the Child Life specialists. They’re here to help families provide as much comfort and as little trauma as possible for children in medical settings, including helping families advocate for comfort accommodations.

In this episod...

Summary:

On this special mini episode, we’re hearing from a long-time listener turned board member, Carolina! We got to chat about what led Carolina to The Rare Life, what The Rare Life has meant to her, how she helped plan this year’s Sticker Club as part of our fundraising committee, and how she’s helping us grow and reach new communities via a Spanish translation of the podcast!

And as always, if you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potent...

We all have stories to tell, and we all have a right to tell them... but on social media, sometimes it feels like we have to do it in a specific way.

Because if we don't use the perfect words and the right framing, we risk a small but vocal cohort of other disability parents and disabled adults coming into our space, monitoring our content, and sometimes harassing us through comments and messages.

And it goes without saying that this kind of behavior is not okay and can actually cause long-term harm for both parents...

Sticker Club 2024 is live!! And to celebrate, we’ll be handing out a book bundle of six amazing disability parenting books in a giveaway sponsored by Amanda Griffith-Atkins.

In this episode, we’re sharing the titles of these disability parenting books, what we love about them, and how you can enter the giveaway to win this book bundle! (Spoiler: joining Sticker Club today will get you a leg up!)

If you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win this book bund...

It’s the moment you’ve all been waiting for... The Rare Life Sticker Club is back and better than ever! In case you missed it last year, Sticker Club is an annual fundraiser for listeners to help support the show by signing up for a monthly donation (and as a thank you, we send you stickers!)

In this episode, we’re telling you all about the new designs (there are three this year, and they are so cool!), how Sticker Club works, the new options for receiving your stickers, and how to join an awesome giveaway for St...

Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons.  Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.”

This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.)

But despite this traumatic start, Nikole and her family have learned to adjust, adapt, and help Chloe to thrive in the years since. In thi...

It’s no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our finances tighter to begin with.

In this episode, I’m bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts, feelings, and anxieties from this community about the financial aspect of this life...

There are few things as intense as an inpatient stay with your child. The pressure is on, the anxiety is at an all-time high, and the hypervigilance is ever present. And honestly? It doesn’t even matter if it’s a planned observation or an emergency situation, it’s still so stressful.

In this episode, I talk through the whole experience of hospital stays with Alyssa Nutile and Larisa Bothma. We discuss experiences and thoughts shared from the community, as we cover topics like the lack of food and sleep, the triggers that are all over the hospit...

Imagine with us: You have a shelf full of tinctures, a book of natural remedies, and plan to use holistic medicine to care for your family as much as possible... and then you have a medically complex child who requires intense medical intervention, specialist appointments, and a whole host of pharmaceuticals.

This is where Suzi Boubion and Julianna Morasse found themselves shortly after having their medically complex children, and the experience was just as jarring as it sounds.
⠀⠀⠀⠀⠀⠀⠀⠀⠀
In Ep 169 of The Rare Life, Suzi and Julianna describe the shock of being self-described “crunchy moms” who found themselves a...

Stephanie’s family had big plans before her son Garrett was born. A business idea, a roadmap laid out, and the world felt wide open before them.

And then... things changed. Garrett was born with a (still undiagnosed) medical complexity that requires intense, round-the-clock care. Trauma ensued. Tears were shed. And tough decisions were made, as Stephanie to become his full-time caregiver.

But even though the big plans for their family had to be adjusted, Stephanie doesn’t spend her time grieving the “what ifs.” In this episode, she shares how she’s accepted the reality th...

When we first enter this world of medical uncertainty as parents, no one gives us a handbook. None one holds our hand to walk us through what to expect, what is coming next, and what life might look like going forward.

So we asked this community, if you could go back to the beginning –knowing what you know now– what would you tell yourself as a brand new medical parent? What would you want to know right at the beginning?

And in today’s episode, I’m sitting down with Chandra Bloomfield to share those answers...

How do you give your child medical autonomy when they struggle to communicate? How do you determine their preferences when they cannot explain their inner thoughts to you? How do you help them when they cannot tell you where their pain is?

These are the questions that keep today’s guest, Suzi Bubion, up at night. Her son, Oliver, is nonspeaking, and this struggle to communicate is one of the biggest challenges for Suzi’s family as they help Oliver navigate his disabilities.

In this episode of The Rare Life, we’re digging into how we lon...

Have you ever wanted to tell your child’s therapist *exactly* how you feel about therapy homework?

Or remind them just how many other therapy appointments you have scheduled this week.

Or maybe just explain to them that... you want to be mom, not play the role of therapist today.

In today’s episode, I’m joined with guest and fellow disability parent Alex Farha to go through all the things that parents from this community wish they could say to their child’s therapists. We cover all kinds of topics, but at the end...

Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold found herself in after the birth of her daughter, Stella.

In this tender, raw episode, Jillian describes what it was like navigating a surprise pregnancy in the midst of receiving her son Roman’s diagnosis, the gut-wrenching news that her daughter had the same di...

It’s time for Season 10! And once again, we’re coming back to the topic of our children’s disabilities and medical complexities. We have episodes on what we wish therapists knew, being a “crunchy” parent with medical complex children, some heart-wrenching story episodes, and a few *spicy* (and currently secret) episodes that’ll come out toward the end of the season.

But, before we dive into our sneak peeks at the end of the episode, we’ve got some exciting updates for you! We’re launching a newsletter that you should join so you never miss an episode, upda...

It’s only been a year since we’ve heard from Maddison... but oh the things that can change in a year. Shortly after we initially recorded Maddison’s story, she and her husband separated. And the life that Maddison and her daughter knew before with a team of two parents working side by side and supporting each other, it just didn’t look the same anymore.

In this mini-episode, Maddison shares how she’s coped with the abrupt adjustment to single medical parenthood. She shares the parts that she’s found to be most difficult, what she still gr...

Three years ago, I shared two episodes about my own family: one where I discussed how I discovered that I was a carrier for my son’s condition, and another where I talked about how much my older daughter struggled with accepting her brother. In the years since, we’ve navigated difficult decisions and agonizing choices, and now, for once, we feel somewhat settled.

In this episode, I’m sharing those decisions, how we made them, and how they’ll impact our future. Plus, I’m sharing a positive and heart-warming update on how my children have grown thei...

When we last spoke to Tiffany, she was still trying to find something that felt like solid ground after going through a divorce right before the birth of her medically complex daughter. She and her two children were living in a trailer and trying to answer the question: What now?

In this catch-up episode, Tiffany shares how much has changed in these last two years, from inter-state moves to buying a new life to finding a balance as a single mother between the unique needs of each of her daughters. Seeing how far Tiffany’s family has co...

You know that thing that you can’t seem to live without, but also don’t want to live with most of the time? That seems to describe the relationship most of us have with the medically complex and rare disease Facebook group community.

In this episode, we’re sharing all your thoughts, feelings, and frustrations with these crucial, life-saving, and yet sometimes difficult to navigate spaces on the internet.

Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly...

Kari was one of our very first guests almost four years ago now. When we talked then, her daughter Sloan was still tiny, her husband was still alive, and the Covid-19 pandemic hadn’t happened yet. And now? Well, her entire world has changed in big and small ways.

In this catch-up episode, Kari shares with us what it’s been like trying to relearn how to live in the world without her husband and partner, and she shares all the ways that Sloan has been the driving force to keep her going in some of her dark...

Each week, I share a new episode and guest, but I realized that it’s been a long time since I’ve shared much of me, Madeline, with you. So today, I’m peeling back the curtain today and sharing all sorts of fun (and maybe a few not so fun) facts about me, my life, and my family.

I’m sharing what motherhood looks like these days, traits that I do and don’t love about myself, and lots of other lower stakes facts. I’m so grateful for this opportunity to be vulnerable with all of you, and...

There’s plenty of grief that we expect as parents of medically complex kids... But what about those little pangs that seem to come out of nowhere?

In this mini episode, we’re sharing the surprising and often oddly specific things we grieve as parents of medically complex children, from missing out on birthdays to struggling at beach trips. This is one episode that will make you feel SO SEEN.

Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honest...

After learning to accept and manage her younger daughter’s disabilities, Vanessa thought she had a pretty good understanding of what it was like to raise a child with rare medical issues. But a diagnosis of childhood lymphoma for her older daughter turned all those notions upside down.

In this short catch up with Vanessa, she’s sharing the way that childhood cancer completely changed the way Vanessa looks at raising children with medical complexity. She shares the toll this diagnosis took on their family, and how they’ve all been trying to recover in the past year.<...

Birthdays, as we understand them societally, are a time for celebrating, but it’s not so straightforward for all parents of medically complex kids. Birthdays can carry so much baggage, from feelings of isolation to reminders of difficult hospital stays to a resurgence of anticipatory grief.

In this episode, we’re sharing all your thoughts and feelings as a community around birthdays: the joy, sorrow, and everything in between.

Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our...

If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back!

In this episode, we’re sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer travel vibes, we have some affirmations for you too.

Also, huge thank you to our sponsor Functional Formularies! They make incredi...

If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back!

In this episode, we’re sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer travel vibes, we have some affirmations for you too.

Also, huge thank you to our sponsor Functional Formularies! They make incredi...

When we first start out in this rare life, it’s often terrifying. Everything is coming at us so fast, and sometimes you have to wonder: does it ever get better? Do things ever even out? It might feel impossible in those scary early days, but looking back, many of us have found a new perspective since then.

Today, I’m sharing thoughts from this community on what they wish they could go back and say to that earlier version of themselves who was just beginning on their medically complex journey.

I’m so excited to kic...

We’re finally rounding out Season 9, and what a season it’s been. The topic of this season was relationships, and perhaps as expected, the episodes this season were weighty, tender, and so touching. And besides the production of the podcast, we were busy coming into our own with some big milestones for The Rare Life as a nonprofit with grant submissions and running our first major fundraiser.

In this episode, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Season...

When you have a medically complex child, you probably have some realization that the experience you have with your child isn’t “typical.” But sometimes, it’s hard to understand just how different from the “norm” it was, until another child comes along – particularly one without disabilities or medical complexities.

In this episode, Brianna, a mom of disabled son who went on to have another nondisabled child, joins me to discuss how vastly the experience has been from one child to another. We also play audio clips from listeners as they share their own grief, joy, and insights that...

After Ashley Smith’s son Deacon was admitted to the NICU, and one thing after another cascaded out of control with his care, she found herself literally screaming in the nursery “THIS IS NOT MY PLAN!”

While not all of us have screamed this out loud, so many of us have had a similar breaking point, where the weight of fear and grief and lost expectations bear down on us. In this episode, Ashley shares what it was like to navigate this complex grieving process in her own family after her son was diagnosed with a rare syndro...

Nothing breeds resentment faster than one member of a romantic partnership feeling like they're pulling all the weight in one area of life. And when it comes to the parents of medically complex kids, that resentment can compound even faster, especially as the mental load of navigating medical care often falls onto one partner. (Let’s be real: it’s usually the mom.)

In this episode, we’re diving into this topic of sharing the mental load – and how we can make that load-sharing a little more equitable. Amanda Griffith-Atkins and her husband join me to pull b...

Before she had her son, Serena was already a pediatric SLP, business owner, and disability advocate who spent her time empowering families to understand and become more comfortable with their children’s disabilities. So, she was prepared for anything, or so she thought.

But as it turns out, no amount of education or experience can prepare you for the moment your child receives a diagnosis for a disease that will eventually kill them.

In this episode, I sit down with Serena Murison, SLP and owner of Play Spark, as she shares the story of discovering th...

Friendship, especially with those who don’t have disabled children, gets more complicated once you’ve had your own child with disabilities. It’s not necessarily fair, but it doesn’t change the fact that we often end up interacting differently with friends we had before our children were born.

In this episode of The Rare Life, I’m joined by Jillian Arnold, host of her own disability parent podcast and mom to Roman and Stella, who both have ASMD (a.k.a. Niemann Pick Disease Type A/B).

We dig into all the aspects of befrien...

Making the decision to leave your partner is no small thing, but sometimes, the rifts that come from the stresses of life as medically complex parents can erode our relationships.

So how do you know if divorce is an option, and where do you start if you’re exploring that possibility?

In this episode, Amanda Griffith-Atkins joins me to share advice on the unique issues surrounding divorce between parents of medically complex kids and read experiences shared from the community of other women who have already separated or divorced their partners. We talk through fears, he...

When her son Jeremiah was first born, Aneesa had no medical training or experience. But as it became clear that something was out of the ordinary with Jeremiah’s health, she did what so many of us do when our kids need support: she started advocating and asking questions. Eventually through her research and advocacy, her son was diagnosed with a rare life-limiting mitochondrial disease, TK2D.

In this episode of The Rare Life, Aneesa shares the new skills she had to learn as she was thrust into the medical world, the grim prognosis her family received ab...

As heart-breaking as it is, if you’ve been in the rare disease community for long enough, you probably know someone, maybe even someone close to you, who has lost a child. And because that potential reality looms large for so many of us, this loss can affect us as well.

In this episode, Rose Watson, whose daughter Lavender has Trisomy 18, joins me to discuss her experience of maintaining a relationship with a friend who lost a child and how that experience impacted her and her friend individually.

We also share thoughts from parents who ha...

Have you ever been in a conversation with someone close to you only to be cut to your core by their offhand commentary about your disabled child, their medical issues, or the life you and your child have? Friend, you are not alone.

In Ep 153 of The Rare Life, Amanda Griffith-Atkins, whose sone has Prader-Willis syndrome, joins us to address some of the hurtful comments we've received from those close to us. She gives us some helpful tips for navigating those uncomfortable interactions, mending certain relationships, and how to know when a relationship might not be worth...

Finding out your baby had a life-altering stroke in utero brings shock, heartache, and a whole lot of guilt. But when the medical trauma keeps coming after that initial diagnosis, year after year, hospital visit after hospital visit, there’s rarely time to work through all of those complicated feelings.
⠀⠀⠀⠀⠀⠀⠀⠀⠀
In Ep 152 of The Rare Life, Stephanie Stanley shares her story of navigating guilt, fear, and her new normal after discovering that her son Payton had a stroke in utero. Stephanie speaks to the journey so many of us have been on and are still on, as we attempt to proces...

We all need friends... but not just any friends. We need friends who just get it and don’t need us to explain every little aspect of our life to understand. In short, we need friends who are also parents to disabled and medically complex children. But how do we find and make those friends?
⠀⠀⠀⠀⠀⠀⠀⠀⠀
In Ep 151 of The Rare Life, I sit down with Kari Harbath and Kate Livingstone to discuss how to create REAL, connective friendships with other parents of disabled kids. We chat about how to go about creating these fulfilling friendships, how to take your current fr...

We talk all the time about our disabled children in this space... But what about their non-disabled siblings?

In today's episode of The Rare Life, we're going to hear from them directly: about the good, the hard, the unexpected, and about just how much they love their disabled brothers and sisters. We heard from nearly thirty siblings, from toddlers to teens (and even a few adults!)

Megan Schneider, a grown-up with a disabled sibling, also joins me to share her own experience and respond to these tender thoughts from some of the other kiddos in...

Only two days left in the Family and Friends fundraiser, and while we’re overjoyed and awed at how successful this fundraiser has been, we’re still 10% away from our goal!

If you haven’t joined in on this fundraiser yet, it’s not too late. You’d be amazed at what you can accomplish in 48 hours, so will you join us for this final sprint to the finish?

Get more info at https://therarelife.org/fundraiser.

Thank you so much, friends!

Links:

Join us for The Family + Fr...

Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then, finally, after all the difficulty, you get to have two beautiful twin girls, and you think maybe, “This is it! The struggle is over!” But, because life isn’t always fair, you find out soon after that one of your twins has a life-altering rare disease.

This is the story of today’s guest, Dr. Annie Kuo. She shares her journey from infertility through the diagnosis of her 15-month-old daughter, Kenzie, with Prader-Willi syndrome...

Less than a week into our Family and Friends fundraiser, and we have some super exciting news to share!

If you haven’t joined in on this fundraiser yet, we’ve got a list of ways you can get involved, plus some helpful tips to make it all a little easier!

Get more info at https://therarelife.org/fundraiser.

Thank you so much, friends!

Links:

Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to co...

Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside.

So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Kassie Harbath, auntie of Sloan, a little girl with CHARGE syndrome, joins us to sort through all these complex feelings.

A...

If you feel like you’re missing out on sexual intimacy in your life since entering your medically complex or disability parenting journey, you are not alone!  We took a poll on Instagram and 90% of respondents said that their sex life had been impacted by medically complex life.

The reasons for this impact are endless: no time, no energy, no space, no emotional bandwidth, and the list goes on. So in this episode, we’re diving into specific thoughts and struggles from this incredible Rare Life community on the state of sexual intimacy in their lives.

Ama...