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 Madelin...
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!
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26:26
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!
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12:18
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!
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9:53
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!
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19:20
Holiday Mini 3: The Silent Suffering | A Poem Reading + Discussion w/ Kara Berasi
What if the hardest part of your journey was the part no one saw? The silent suffering that happens behind closed doors, in the dark hours of the night, when the mask comes off and the tears flow.
In this mini-episode, I’m joined by Kara Berasi, who shares her powerful poem, The Silent Suffering. We talk about the emotional weight of caregiving, the exhaustion of advocacy, and the struggle to be honest about the pain. We also cover the way that sharing through art can allow the people who
love us to get a glimpse into these often unseen parts of our lives.
If you’ve ever felt like you’re carrying the weight of it all, alone, 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!
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 conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting.
Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.
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