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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135135 ratings

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FAQs about The Rare Life:

How many episodes does The Rare Life have?

The podcast currently has 239 episodes available.

The Rare Life episodes:

March 06, 2025 183: Epilepsy | Unpredictability + Emotional Toll it Takes on Parents w/ Hailey Adkisson
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 balancing hope with the knowledge that nothing they’ve tried has truly worked.
She also dives into the impossible choices—when to push for new treatments, when to let go, and how she’s learning to focus on the good moments in between. Because when epilepsy takes so much, holding onto joy becomes an act of defiance.
And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!

Links:
If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact.
Listen to Hailey’s previous episodes: 174 on silencing parents and 117 on traumaversaries.
Listen to Hailey’s husband Derek on 146: The Dad episode.
Get Hailey’s book, What is Epilepsy?
Fill out our contact form to join upcoming discussion groups!
Follow Hailey at @growing_juniper!
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 12min
February 27, 2025 182: Hobbies for Disability Parents | Why We Need Them + How to Squeeze Them In w/ Amanda Griffith-Atkins
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 can come with doing something “just for you,” and how even the smallest hobbies can become a lifeline.
Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!
Links:
Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!
Fill out our contact form to join upcoming discussion groups!
Follow Amanda at @amanda.griffith.atkins!
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
49min
February 20, 2025 181: Kait’s Story | Fertility Struggles, A Surviving Twin, + “What Could Have Been”
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 non-disabled sibling, and the emotions that come with it all.
From NICU trauma to navigating life after loss, Kait’s story is one of resilience, heartbreak, and unexpected love. If you’ve ever felt like your parenting journey didn’t go as planned, you’ll find so much to relate to here.
Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!
And a big thank you to MOOG, our sponsor for this episode!

Links:
Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!
Visit MOOG’s website to see the many ways they support families like ours!
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa and Erica at @caffeinated_caregivers!
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
45min
February 13, 2025 180: Does Disability Parenting Ever Get Easier? Survival Mode, Burnout Mode, and Beyond w/ Erica Stearns and Alyssa Nutile
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 you an anchor point.
And on February 14, we’re launching our 2nd Annual Friends and Family Fundraiser! We understand that this community is overworked and under-resourced, so we’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!

Links:
Ask your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!
Or ask them to donate via Venmo @the_rare_life! https://venmo.com/code?user_id=4224512098830319954&created=1739551472.105737&printed=1
Listen to Ep 170 all about hospitalizations.
Listen to Ep 54 on Erica’s perspective as a disabled adult.
Hear Alyssa’s other episodes: 179: Exhaustion, 171: Financial Strain, 140: Alyssa’s Story,125: Travel w/ Disabled Kids
Read more aboutthe Caregiver Continuum.
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa and Erica at @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast orContact me about sponsoring an episode.
Followthe Facebook page.
Join the Facebook groupParents of Children with Rare Conditions.
Access the transcript on the websitehere.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
...more
1h
February 06, 2025 179: The Exhaustion of Being a Disability Parent w/ Alyssa Nutile
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, it does feel like too much for one person to carry.
If you’ve ever wondered how you’ll keep going when you’re just so drained, you are not alone. This episode is for you.
Also, huge thank you to our sponsorFunctional 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!
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa at@caffeinated_caregivers!
Follow us on Instagram@the_rare_life!
Donate to the podcast orContact me about sponsoring an episode.
Followthe Facebook page.
Join the Facebook groupParents of Children with Rare Conditions.
Access the transcript on the websitehere.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
...more
1h 10min
January 30, 2025 178: Jessica Fein’s Story |Adoption, a Progressive Disease, + The Illusion of Control
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 heartbreak, or felt like you were carrying the weight of it all, this episode will feel deeply familiar.
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!
Listen to Jessica’s podcast: I Don’t Know How You Do It.
Read Breath Taking: A Memoir of Family, Dreams, and Broken Genes by Jessica Fein.
Fill out our contact form to join upcoming discussion groups!
Follow Jessica on Instagram @feinjessica!
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
57min
January 23, 2025 177: Kicking Off Season 11 | Episode + Fundraiser Sneak Peeks w/ Alyssa Nutile
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 asking this community of parents to financially support us directly. All you have to do is share! (And we’ve got some exciting
incentives for you to get the word out!)
As always, we’re closing out this episode with sneak peeks of the first four episodes of the season, and there are some juicy moments in just these little clips. We can’t wait to share them with you.
This season is packed with tender, honest, and relatable conversations. We’re so grateful to share these moments with you. Let’s dive in! ⠀
Links:
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa on Instagram @caffeinated_caregivers!
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
27min
January 09, 2025 Holiday Mini 6: Find Your Community in TRL Discussion Groups
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 Rare Life newsletter and never miss an update!
Listen to Ep 108 on
navigating the holidays with Amanda Griffith Atkins.
Listen to Ep 109 on
isolating at home during the holidays with Amanda Griffith Atkins.
Listen to Ep 110 on being
inpatient during the holidays with Amanda Griffith Atkins.
Fill out our contact form to join
upcoming discussion groups!
Follow Kara on Instagram @hear_me_rare!
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
13min
January 02, 2025 Holiday Mini 5: The New Year for Disability Parents
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 and never miss an update!
Listen to Ep 108 on
navigating the holidays with Amanda Griffith Atkins.
Listen to Ep 109 on
isolating at home during the holidays with Amanda Griffith Atkins.
Listen to Ep 110 on being
inpatient during the holidays with Amanda Griffith Atkins.
Fill out our contact form to join
upcoming discussion groups!
Follow Kara on Instagram @hear_me_rare!
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
10min
December 26, 2024 Holiday Mini 4: 2024 for Medical Parents | Highs and Lows
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 solidarity, and let’s close out 2024 together.
Links:
Join The Rare Life newsletter and never miss an update!
Listen to Ep 108 on
navigating the holidays with Amanda Griffith-Atkins.
Listen to Ep 109 on
isolating at home during the holidays with Amanda Griffith Atkins.
Listen to Ep 110 on being
inpatient during the holidays with Amanda Griffith Atkins.
Fill out our contact form to join
upcoming discussion groups!
Follow Kara on Instagram @hear_me_rare!
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
20min

FAQs about The Rare Life:

How many episodes does The Rare Life have?

The podcast currently has 239 episodes available.

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