The Rare Life
Madeline Cheney
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Top 10 The Rare Life Episodes
Goodpods has curated a list of the 10 best The Rare Life episodes, ranked by the number of listens and likes each episode have garnered from our listeners. If you are listening to The Rare Life for the first time, there's no better place to start than with one of these standout episodes. If you are a fan of the show, vote for your favorite The Rare Life episode by adding your comments to the episode page.
Holiday Mini 5: The New Year for Disability Parents
The Rare Life
01/02/25 • 9 min
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!
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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.
And, this episode is so well-timed, because we’re also starting our Family + Friends Fundraiser! Get more info on the fundraiser at https://therarelife.org/fundraiser.
Also, thanks to the many families and friends who have already donated and sponsored episodes, including the loved ones of Alyssa Nutile, mom of Gemma who has Pyruvate Dehydrogenase Complex Deficiency (PDCD). We couldn’t do it without you!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Donate to the fundraiser here.
Hear the story episodes of the loved ones whose family and friends who shared today: Alyssa Ep 140, Libby Ep 95, Bek Ep 133, Marci Ep 114, Brianna Ep 105, Madhura Ep 117, Suzy Ep 124, Kari: Ep 123, Ep 10, and Ep 11.
Listen to Ep 146: The Dad Perspective.
Listen to Ep 104: How to Support the Parents of Disabled Children.
Read Show Up and Bring Coffee by Megan Amrich.
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.
Access the transcript on the website here.
Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent.
But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic with the best of the best.
In this conversation with famed disability activist, speaker, and author of Demystifying Disability, Emily Ladau and Amanda Griffith-Atkins guest from Ep. 81 and mom to a disabled teen, we tackle questions like: Is it ok for us as parents to find identity in our children’s disabilities? If so, where is the line? IS there a line? How can I respect both my child’s lived experience and my own? Can I share those experiences on social media? How can parents and disabled people soften towards each other and put down the proverbial weapons?
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Purchase Demystifying Disability by Emily Ladau via Penguin House or Amazon.
Listen to The Accessible Stall podcast
Follow Emily on Instagram.
Follow Amanda on Instagram.
Follow Madeline on Instagram.
Listen to Ep. 81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT
Listen to Ep. 54: Disabled Adult Perspective w/ Erica Stearns
Listen to Ep. 77: To Those Who Cannot Say, “I Wouldn’t Have them Any Other Way”
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
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!
05/30/24 • 15 min
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 kick off our summer minis with this heart-warming episode.
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!
Read the original “What We Wish We Could Go Back and Tell Ourselves” blog post.
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!
07/27/23 • 56 min
So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are different now.
In this episode, rare mom and LMFT Amanda Griffith-Atkins and I discuss ways that we have experienced health anxiety as well as what is happening on a psychological level. We also talk about the similar stress-response we experience in anticipation for specialist appointments. She shares ways we can cope with these trauma responses and teaches us to give ourselves generous helpings of self-compassion.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding two different meetings run by our amazing group facilitators every Tuesday at 8pm in PST &CST. Fill out our contact form to get the Skype link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Check out our sponsor Aeroflow Urology for incontinence supplies.
Follow Amanda’s Instagram account.
Check out Amanda’s therapist directory.
Follow Madeline on Instagram.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
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!
11/14/24 • 64 min
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 episode, Katie Taylor of Child Life on Call is here to explain what exactly a child life specialist is, how they can assist families, and most importantly, the variety of ways that parents can help minimize the medical trauma that their children experience.
If your child regularly interacts with the medical system, this is one episode you can’t miss.
Links:
Join Sticker Club so you can support The Rare Life all year long (and get some awesome stickers as a thank you!)
Visit the ABLEnow website to learn how to open an account for your child!
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!
Get the SupportSpot App,where you can find the comfort positions mentioned in this app (plus a ton of other resources!)
Download the Six Comfort Positions guide.
Listen to Katie’s podcast Child Life on Call!
Listen to Katie’s previous episode: Ep 47 on Siblings
Follow Katie on Instagram @childlifeoncall!
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!
04/04/24 • 46 min
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 about Jeremiah, and the bright spots that keep them going. Aneesa also shares why she’s so passionate about documenting Jeremiah’s life and how she’s raising her other three boys in addition to her medically-complex son.
This is a sweet, tender episode you won’t want to miss!
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 assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child!
Follow Aneesa and Jeremiah on Instagram @jeremiahgracentk2dwarrior!
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!
The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins [REPLAY]
The Rare Life
11/22/23 • 97 min
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 episode, Amanda Griffith-Atkins and I discuss listener feedback and contributions about how complicated the holiday season feels for parents of disabled children, suggestions for how to make the holiday season feel just a little bit more manageable, and how adjusting our expectations has made a big difference for each of our families.
Links:
Join the Sticker Club and help us produce Season 9 coming in January!
Listen to Ep 20: Anticipatory Grief with Katie Peterson.
Check out Ep 104: How to Support Parents of Disabled Children.
Listen to Ep 99: Family Planning with Amanda-Griffith Atkins.
Listen to Ep 132: Self-Care with Amanda-Griffith Atkins.
Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 85: Disability Identity, & Ep 81: Health Anxiety.
Thank you to our listeners who sent in recordings: Heather, Maddison, and Lysa!
Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!
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!
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!
07/13/23 • 41 min
Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside jokes, a whole lot of love, and a bit of resentment. So, why are we talking about Katherine’s experience growing up? Because Jonathon has rare syndrome that hugely affected their home life and every day.
In this episode, Katherine shares what it was like for her and gives us the DL on what we can do and be aware of to be the best possible parents to all of our children.
*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*
Links:
Sign up to get an invitation for our community discussions every Tuesday during the off-season!
Ep. 40: Wendy + the Sibling Experience
Ep. 47: Siblings w/ Katie Taylor
Follow Madeline on Instagram.
Join the Facebook group Parents of Children with Rare Conditions.
Donate to the podcast via Buy Me a Coffee.
Contact me about sponsoring the podcast.
Follow the Facebook page.
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!
It’s wild to think about, but we’re kicking off Season 9 of The Rare Life! And this season, it’s all about relationships. Relationships with your child, your spouse, your peers, your friends, your loved ones, and more! We’re not holding anything back, so some of these topics might get a little spicy!
Plus, we’re introducing our 2024 Friends + Family Rare Disease Day Fundraiser! It’s our first major fundraiser, and if it goes well, we could raise funds to keep running this podcast and supporting and uplifting you for the entire next year! And the best part is we’re not asking for a single cent from you, our listeners. Instead, we’re empowering you to tell your own story and offer an opportunity for those close to you to support you by supporting us. It’s a win-win!
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.
Thank you so much for being here and supporting The Rare Life for 9 seasons now! We’re so excited for this slate of episodes. Let’s dive in!
Links:
Follow Alyssa on Instagram @alyssanewt!
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!
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FAQ
How many episodes does The Rare Life have?
The Rare Life currently has 249 episodes available.
What topics does The Rare Life cover?
The podcast is about Parenting, Kids & Family and Podcasts.
What is the most popular episode on The Rare Life?
The episode title 'Holiday Mini 5: The New Year for Disability Parents' is the most popular.
What is the average episode length on The Rare Life?
The average episode length on The Rare Life is 41 minutes.
How often are episodes of The Rare Life released?
Episodes of The Rare Life are typically released every 7 days.
When was the first episode of The Rare Life?
The first episode of The Rare Life was released on May 7, 2020.
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