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...

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 seas...

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 b...

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 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 physi...

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...

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 o...

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 thi...

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...

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, teamw...

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...

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 t...

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...

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 overwhel...

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 th...

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,...

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 car...

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 r...

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 m...

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...

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 a...

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 pa...

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...

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 pa...

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...