The Rare Life

Yes, disability parenting changes us, but experiences we bring into disability parenting shape the way we navigate this life too!

In today's episode, we're unpacking the baggage we bring into disability parenting, from mental health and childhood trauma to family relationships, religion, and our own experiences with disability. Along with stories from parents in our community, we explore how these experiences influence everything from trusting caregivers to advocating for our kids.

We also dig into how our past can make certain parts of this life harder, give us tools to navigate it, or sometimes both...

Did my body fail my child? Did I do something wrong? Could I have prevented this?

You don't have to be a genetic carrier to grapple with the complex feelings around whether you somehow caused your child's disabilities or medical complexities. So many of uscan carry this uncertainty and sometimes even unspecified guilt around these feelings.

In today's episode, we're digging into these complicated feelings, along with experiences shared by parents in our community. From finding out you're a genetic carrierto birth injuries, medical decisions, and spontaneous genetic mutations, we talk about the many different...

Who are you when so much of your life revolves around caring for your child? For parents of disabled and medically complex kids, our identities can shift in some pretty significant ways, and figuring out who we are in the midst of it all isn't always easy.

In today's episode, Madeline and Alyssa dig into the ways disability parenting shapes our sense of self. We talk about grieving parts of who we used to be, discovering new things about ourselves, and what it looks like to embrace an identity we never expected to have.

We...

When Carolina’s daughter Cruz was just days old, newborn screening revealed she had maple syrup urine disease. Almost overnight, Carolina went from first-time mom to managing hospital stays, oxygen, G-tube feeds, and a condition that could become dangerous very quickly.

In today’s episode, Carolina shares what those early years looked like, including the hypervigilance, the pressure to get everything exactly right, and the fear that if she relaxed even a little, something bad would happen.

We also talk about the decision to pursue a liver transplant after years of managing Cruz’s condition, and wh...

A hospital admission. A seizure. A certain time of year. Sometimes your body can react to medical trauma long after the moment itself has passed. But when does that become PTSD, and what does that look like when the trauma is tied to your child’s medical care?

In today’s episode, Amanda Griffith-Atkins joins us to break down the difference between PTSD, post-traumatic stress symptoms, and other trauma responses, plus why things like hypervigilance, avoidance, feeling trapped, and physical reactions to reminders can show up so strongly for medical parents.

We also dig into what...

Exercise can be a powerful coping tool, a way to feel stronger, and something that improves our mental health as parents of disabled children. But for those in our community, it can also be hard to access, hard to sustain, and just one more thing on our never-ending to-do list.

In today’s episode, we’re talking about that tension: the ways exercise has helped so many parents cope with stress, anger, trauma, and the physical demands of caregiving, alongside the very real barriers of time, energy, money, childcare, and hospital stays.

We also dig into...

Scrolling. Comfort shows. Exercise. Reading. Keeping yourself so busy you don’t have time to think. Numbing out can look a lot of different ways.

In today’s episode, we’re talking about why medical parents numb out, especially during stressful seasons, before and after scary medical moments, and after long days of being “on” for everyone else.

We also dig into the difference between numbing out and dissociation, how to tell when distraction is helping versus becoming avoidance, and why sometimes giving your brain a break is exactly what you need.

Also, a big than...

When your first child is medically complex, your experience can look very different from a “typical” parent. But sometimes, that’s only really apparent in hindsight.

In today’s episode, we (finally!) have Amanda Griffith-Atkins on to share the story of her and her son Asher. From the first inkling that something wasn’t quite right to navigating conflicting messages and fears about the future to what her life looks like now seventeen years later, Amanda shares it all.

We also dig into that moment where you realize you have to share diagnostic news with your frien...

Season 14 is here, and this time the focus is on how raising a disabled or medically complex child impacts us as people.

This season, we’ll be talking about things like anxiety, PTSD, identity, feeling like your body failed your child, numbing out and dissociation, exercise, and being seen as a “Debbie Downer” when you’re honest about the realities of this life. As always, we’ll also have story episodes woven throughout the season, including a long-overdue story episode with Amanda Griffith-Atkins.

We’re also sharing some behind-the-scenes updates in this episode, including how Madeline and...

It’s finally here! For the last year and a half, we’ve been working on this project to be a big hug for NICU families from parents who just get it.

In this episode, we’re sharing our NICU Guide for the first time, why we created it, who it’s for, and how you can help get it into the hands of families who need it the most.

If you’d like to help, send us a message on Instagram, ontherarelife.org/contact or by emailing us directly at [email protected].

A huge t...

Imagine this: You’ve just finished going through the diagnostic process for your child’s rare disease. You’re trying to find your new normal. And in the midst of all this, you continue to uncover your own medical complexities.

That story isn’t foreign to Sarah, our guest in today’s episode. She shares both her and her daughter’s diagnostic journey, how that impacts their life in unique ways, and why she’s ultimately thankful to be able to understand her daughter’s struggles.

A huge thank you to our sponsor for this summer season, R...

Parenting a medically complex child without a partner or co-parent can bring a new level of difficulty.

From managing the financial realities of a solo parent household to the emotional weight of making all the decisions on your own to the uncertainty of who would care for your child if something happens to you, we’re covering what makes solo medical parenting a little different from a partnered parenting experience. (And why it’s unfortunately still relatable to some parents who technically have partners too.)

A huge thank you to our sponsor for this summer seas...

As parents taking care of disabled and medically complex kids, we could probably use a little more help and support than the average person... But that doesn’t make it easy to ask for it.

From guilt to societal pressure to simply not having anyone you can trust for support, we’re digging into why help is just so hard to ask for.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offe...

As our disabled and medically complex children grow and mature, caring for and navigating their sexual health can be a tricky topic.

From appropriately navigating sexual activity, consent, basic hygiene and even more complicated topics like birth control and how puberty can bring about new health complications, we’re breaking down a ton of different sexual health aspects in this episode.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different me...

Clinical trials are so important. They’re how new therapies and treatments and cures are developed for diseases, and how we update our medical knowledge. At the same time, they aren’t without risk for our kids and our families.

So, how do you decide whether it’s worth it? We’re breaking down that question with pros, cons, and personal experiences.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 differen...

Nature can be healing. But when you have a disabled or medically complex child, getting outside can also be complicated.

Today, we’re talking about the ways nature grounds us, the grief that can come up when it is not accessible to our kids, and the small, beautiful ways our families still find their own version of outside.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 sn...

For most of us, traveling with medically complex and disabled children can feel daunting, scary, or maybe even impossible. But while not necessarily easy or simple, if travel is a priority for your family, it is possible with the right planning and preparation.

In today’s episode, we share the best tips and tricks from The Rare Life community. We cover everything from general planning to airplane specific tips (there are a ton!) to finding the best accommodations and more. We even have a few tips for camping with medically complex kiddos!

Plus, we also di...

The dads deserve a village too.

In this Father’s Day mini episode, Madeline talks with Lizzy of Wonders of Wally about her poem, The Forgotten Father, and the quiet, crushing ways dads are often expected to carry everything without being seen.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at re...

It’s summer! But when you have a disabled or medically complex kids, this season can bring with it many, many mixed feelings.

Today, we’re digging into all of that: how we feel about summer, what makes summer uniquely hard for our families, and the parts of summer we still love anyway.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the clos...

Season 13 is coming to a close, and this season covered a lot of heavy, but necessary ground.

In this finale episode, Madeline and Alyssa are joined by Caitlyn, a listener and mom to Miles, to look back on the episodes that were the hardest, most impactful, and most validating to hear. We’re also sharing listener reflections, talking through the clips from all 14 episodes, and discussing why this season felt especially deep for our community.

And finally, we’re sharing a few personal and behind-the-scenes updates, including Madeline preparing to become a foster parent, Alyssa edit...

Most of us can’t be with our children 24/7. At some point, we often must hand off care of our children school staff, nurses, therapists, hospitals, family members, etc to help care for our disabled and medically complex kids. And honestly? That can feel terrifying.

In this episode, we're exploring one of the hardest topics parents in this community navigate: preventing abuse and neglect for children who may not be able to fully communicate what happened to them.

We talk about the fears parents carry, missed medical care and hospital concerns, building trust with other ca...

For many parents of disabled and medically complex children, “raising awareness”, especially on social media, can start to feel like another responsibility sitting on top of an already overwhelming life.

Post more. Educate people. Share your child’s diagnosis. Explain disability better. But what actually changes when we do that… and what are we giving up in the process?

In this episode, Alyssa and Madeline explore the tension many caregivers feel between wanting the world to better understand disability and wanting to protect their child’s privacy, energy, and family life.

They talk about awar...

For many families of disabled and medically complex children, school is rarely a simple decision.

It’s a constant balancing act between medical needs, safety, transportation, therapies, staffing, inclusion, and what your child can realistically access.

In this episode, Alyssa is joined by Rachel, a special education professional and fellow disability parent, to talk about the realities of navigating school options for medically complex kids. The types of schooling options available, the differences between these options, support shortages, IEPs, inclusion, and the emotional toll of having to constantly fight for the support your child is le...

For most people, a trip to the ER is unexpected. But when your child has medical complexities, it’s often an inevitable and rhythmic part of life.

Every time something seems off and feels like it’s progressing, you’re forced to make a gut-wrenching call: do we handle this at home, or do we go in?

In this episode, we’re unpacking what those moments actually look like. From the fear that sits in the background of every illness, to the reality of navigating ER teams who don’t know your child, to the emotional...

Before Logan’s diagnosis of Sanfilippo syndrome, Noelle assumed they’d figure out what was off... and then fix it. She never imagined that her family would be facing a progressive, terminal disease that no one, including their doctors, knew much about.

In this episode, Noelle shares how they navigated those early decisions, including choosing a high-risk stem cell transplant when it felt like the only option, and what it’s been like to live with that choice as the disease continued to progress.

We also talk about what advocacy actually looks like long-term: fighting the sa...

From an early age, most of us are taught that being “smart” matters. It’s tied to the way society measures and views success, independence, and worth.

So what happens when you're raising a child with an intellectual disability in that world?

In this episode, Alyssa, Amanda, and Madeline get honest about all of it: the grief that's hard to express, the fear that you won't be able to connect with your child, and the ways people with intellectual disabilities get left out, even within disability spaces.

Plus, they dig into the nuance behind...

At face value, our kid’s equipment is just stuff. It helps our kids move, eat, hear, breathe, communicate, and more. But when that “stuff” feels like it’s taking over our lives (and homes), complicated feelings can come up.

In this episode, Madeline and Alyssa talk about the emotional, logistical, and financial reality of living with medical and mobility equipment. From the grief that can show up when a new piece of equipment arrives, to the frustration of a system that makes you fight so hard to get something your child may not even like, there's so much...

Before his daughter was born, Robin thought he had a sense of what it meant to be a dad. But after a prenatal diagnosis of Trisomy 13, that understanding started to unravel.

In this episode, Robin reflects on what it was like to face a future filled with uncertainty, including the possibility that his daughter might not live long and might require a completely different kind of parenting than he had imagined. He shares how that uncertainty led him to emotionally distance himself early on, the role grief and fear played in that response, and...

As parents of medically complex kids, we’ve all been there. We’re at the park or the grocery store with our kid, and someone we don’t know walks up to us and starts asking questions about our child. You might be so put off that you don’t know what to say. Or you might just start saying whatever pops into your head, which can devolve into unintentional oversharing, because we’re often under the impression that it’s rude NOT to answer a question.

But if you’ve ever wanted permission to just not answer invasiv...

For most of us who have spent years inside the medical system with a complex child, the experience of being mom in an exam room can feel very different from the experience of being dad.

Sometimes that means being dismissed while your husband gets taken seriously. Sometimes it means the opposite — dad gets treated like wallpaper while mom is assumed to be the only one who knows anything. Either way, those dynamics have a way of wearing on a family over time.

In this episode, Kyrie joins The Rare Life to talk about the gap be...

For many disability parents, medically complex life begins in the NICU. In those early days, everything feels heightened: the machines, the uncertainty, the helplessness of watching doctors care for your tiny baby while you stand nearby unable to help.

In this episode, Alyssa and Madeline unpack the NICU experience through stories from the Rare Life community, covering the shock of having your baby taken away after birth, the grief over early parenting moments you miss, and the emotional toll of leaving the hospital without your child.

We also explore why the NICU can feel so...

When you’re raising a child with complex medical needs, the early years can feel like one long stretch of survival mode. Hospital stays, surgeries, therapies, and constant uncertainty loom large over everything.

For Cindy, that uncertainty started before her son Thoren was even born. After a routine ultrasound raised concerns, her family began a medical journey that would eventually reveal not just one rare condition, but a genetic mutation so uncommon that Thor was one of the first documented cases in the world.

In this episode, Cindy shares the story of Thor’s early year...

For a lot of disability parents, the behavioral side of our child’s diagnosis often gets judged the fastest and is understood the least. It’s also another part that can make us feel like we’re failing, because it’s so hard to “control.”

In this episode, Alyssa talks with Annie and Katie about behavioral disability and nervous system dysregulation in rare disease parenting. We cover what it looks like when behaviors don’t fade with age, how it changes when kids get older and stronger, and what it’s like to live in constant hypervigilance especially when...

For families of medically complex kids, where you live can determine what services your child gets, whether you can be paid to care for them, how long you sit on a waitlist, and whether the world around you is even built for a kid like yours.

In this episode, Madeline and Alyssa dig into one of the most loaded and personal questions in this life: have you ever considered moving for better support for your child?

We cover why so many of us feel that pull, what can make some places better or worse for...

Many of us start our disability parent journey early in our child’s life, with signs that something is medically awry sometimes as early as birth or in utero. But that’s not the story for Deonna. Instead, a seemingly minor injury for her four year old daughter Allie led to a medical event that changed the course of their lives in an instant.

In this episode, Deonna shares what happened after her daughter suffered a stroke, from the months in the hospital, the acclimation to life at home with a medically complex child and in-home nursing, and...

Surgery of some kind or another is a near universal experience for medically complex kids.

(And yes, procedures that involve anesthesia or something similar count too!) And these experiences don’t just affect our children, but our entire families.

In this episode of The Rare Life, Alyssa and Madeline dig into all of the big feelings that come up before, during and after our kid’s surgeries, the heart-rending questions we ask ourselves when deciding which surgeries are necessary, and advice from the community for getting through these tough moments.

Whet...

What does it mean to bring home a child whose breathing depends on a piece of medical equipment? For many families, the idea of a trach is terrifying long before it ever becomes reality. And even after, the fear doesn’t magically disappear.

In this episode of The Rare Life, Alyssa is joined by Ashley Caywood to talk honestly about life with a trach and ventilator. We hear from parents who knew this decision was coming and from others who were blindsided by it, from families who hoped it would be temporary and those who’ve had to c...

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

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

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

In this episode, Kenya shares what it was like to fight for answers, navigate bias in pediatric care, and hold space for a child whose body and emotions were changing before she was ready. She also talks about the shock of facing th...

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...