The Rare Life

By Madeline Cheney

This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney.

Their authentic conversation... more

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144144 ratings

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FAQs about The Rare Life:

How many episodes does The Rare Life have?

The podcast currently has 262 episodes available.

The Rare Life episodes:

November 07, 2024 174: A Case Against Silencing Disability Parents on Social Media w/ Alyssa Nutile
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 and their medically complex and disabled children.
In this episode, I’m joined by Alyssa Nutile share thoughts from Erica Stearns, Hailey Adkisson, and Suzi Boubion, as well as our own commentary, on why you’re allowed to share your story on your terms, the benefits of sharing, and the harm that comes with being silenced and isolated.
We hope this empowering and nuanced episode will give you the confidence to share your experiences (if you so choose) and maybe make you think twice about the way you engage with your community on social media.
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Links:
Join Sticker Club so you can support The Rare Life all year long (and get some awesome stickers as a thank you!)
Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!)
Fill out our contact form to join upcoming discussion groups!
Listen to Ep 155 with Aneesa.
Follow Alyssa & Erica on Instagram at @caffeinated_caregivers!
Follow Hailey on Instagram @growing_juniper!
Follow Suzi on Instagram @oliversodyssey1!
Follow us on Instagram @the_rare_life!
Erica’s Episodes: 54: Disabled Adult Perspective
Hailey’s Episodes: 117: Traumaversaries
...more
1h 41min
November 01, 2024 SC Mini #1 | Disability Parenting Book Recommendations w/ Amanda Griffith-Atkins
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 bundle, don’t miss this episode!
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Links:
Join the TRL Sticker Club to support the podcast for the coming season!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
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.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
...more
14min
October 31, 2024 173: Everything You Need to Know About Sticker Club
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 Sticker Club members sponsored by Amanda Griffith-Atkins.
If you want to learn more about how to support The Rare Life AND get some awesome stickers as a thank you, don’t miss this episode!
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Links:
Join the sticker club: https://therarelife.org/stickerclub
Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!)
Fill out our contact form to join upcoming discussion groups!
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.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
...more
17min
October 24, 2024 172: Nikole’s Story | Diagnosis Misinformation + Never Giving Up
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 this episode, Nikole is sharing how she and her family created a team of medical staff they could trust despite some past bad experiences, how they celebrate each and every milestone for Chloe, and how they keep moving forward, as they are determined to never, ever give up on their daughter.
This episode is equal parts relatable and uplifting. You can’t miss it!
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Links:
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Nikole @martinfamilyshenanigans!
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.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
...more
46min
October 17, 2024 171: The Financial Strain of Medical Parenting w/ Amanda Griffith-Atkins + Alyssa Nutile
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. We cover many of the stressors, the guilt and shame associated with feeling like you can’t provide for your child, and some of the resources and routes other parents have used to ease some of the financial stress.
This episode touches on some deeply personal territory for many of us, but I think it’ll leave us all feeling less shame and loneliness. Let’s dive in!
Links:
Visit the ABLEnow website to learn how to open an account for your child!
Visit SupportNow to start a registry and share with your community.
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow Amanda on Instagram @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Listen to previous episodes with Alyssa:
Ep 170 on Hospitalizations
Ep 140 on Alyssa’s Story
Ep 125 on Traveling with Disabled Children
& on our recent season opener and finale episodes!
Listen to previous episodes with Amanda:
Ep 159 on Sharing the Mental Load
Ep 156 on Getting a Divorce
Ep 153 on Hurtful Things Loved Ones Say
Ep 147 on Sex and Disability Parenting
Ep 142 on If My Disabled Child Outlives Me
Ep 135 on Career and Family Roles
Ep 132 on Self-Care
Ep 131 on Chronic Stress
Ep 130 on Anticipatory Grief
Ep 99 on Family Planning
Ep 85 on Parental Identity
Ep 81 on Health Anxiety
& our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck.
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.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
...more
1h 6min
October 10, 2024 170: Hospitalizations | Triggers, Shoddy Sleep and Food, + Discharge Hangover w/ Alyssa Nutile and Larisa Bothma
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 hospital, the difficulties that continue as we come home, and so much more.
Plus, we cover those existential questions that come up during hospital stays... like if this might be the one we don’t all come home from, and how those around us can help out during a hospital stay.
If your child has ever had a hospital stay, this episode is going to be so relatable.
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Links:
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Get our packing list here!
Listen to our episode about when your child is inpatient during events and holidays.
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow Larisa on Instagram @sarmabothma!
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.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
...more
1h 29min
October 03, 2024 169: Crunchy Medical Parenthood w/ Suzi Boubion and Julianna Morasse
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.
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In Ep 169 of The Rare Life, Suzi and Julianna describe the shock of being self-described “crunchy moms” who found themselves abruptly living a life of pharmacies, hospital visits, and medical procedures, while navigating the harsh divide between those two worlds and reevaluating some of their long-held beliefs around medicine.
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We also cover what finding community looks like for them now, how they are each working through their trust issues with the medical system, and how they’ve found strength as advocates for their children.
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This is one episode you cannot miss!

Links:
Visit the Functional Formularies website to learn how you can get real food blends for your tube fed child!
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Suzi on Instagram @oliversodyssey1!
Follow Julianna on Instagram @howlinghive!
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.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
...more
1h
September 26, 2024 168: Stephanie T.’s Story | Undiagnosed Son, a Ballroom + Fully Accepting the Now
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 that she’s been given, how her family has navigated medical complexity, and how at the end of the day, she was able to embrace her ballroom dreams after all.
This episode is equal parts raw, honest, and uplifting. Don’t miss it!

Links:
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Stephanie on Instagram @truthandbeautyremain!
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.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
...more
50min
September 19, 2024167: What We Want New Medical Parents to Know w/ Chandra Bloomfield
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. We sift through all the wisdom, encouragement, and validation from seasoned parents as they share their heart with anyone coming after. And to be honest, there’s lot of tidbits in here that are relevant for more experienced parents too.
This episode is so tender and meaningful, and there is something here for everyone.
Links:
Set up an AbleNow account for your child today!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Episodes Mentioned:
Ep 131: Chronic Stress

Ep 132: When Self-Care Gives Us the Swears

Ep 138: Therapy for us

Ep 106: Nonspeaking Episode with Brianna

Nonspeaking Episode with Suzi

Ep 134: Child Loss 101

Ep 137: Life After Child Loss

Ep 126: When to scale back on therapies

Ep 22: "It’s All My Fault”

Ep 157: Friendships with people without disabled kids

Ep 153: Hurtful Things Loved Ones Say

Ep 150: Sibling Voices

Ep 50: The Sibling Perspective

Ep 118: Organization

Ep 81: Health Anxiety
Books/poems:
The Life We Never Expected by Andrew and Rachel Wilson (faith-based)

Special by Melanie Dimmitt

Demystifying Disability by Emily Ladau

Welcome to Holland by Emily Perl Kinglsey
Visit Supportnow to set up your support registry!
Manage your child’s medical recordswith Hibi!
Get a medical ID bracelet through MyID!
Get our favorite organizational cart from Ikea.
Follow Accessible Adventures on Instagram!
Follow Chandra on Instagram @miraculouslycomplexmaddie!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
...more
1h 25min
September 12, 2024 166: Nonspeaking Child | Longing to Access Their Inner World + Give Them Medical Autonomy w/ Suzi Boubion
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 long to know our nonspeaking kid’s inner thoughts, how their challenges to communicate affect their medical autonomy, and why, at the end of the day, so many of us would give anything for them to be able to tell us exactly what they do –and don’t– want.
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 kids are eating Functional Formularies formula, they’re probably eating better than us!

Links:
Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!
Join The Rare Life newsletter and never miss an update!
Fill out the application for our final board seat!
Listen to Ep 124: Suzi’s Story.
Follow Suzi on Instagram @oliversodyssey1!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
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 us a rating or review in your favorite podcast app!
...more
58min

FAQs about The Rare Life:

How many episodes does The Rare Life have?

The podcast currently has 262 episodes available.

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