201 episodes
The Rare Life Madeline Cheney
-
- Kids & Family
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.
-
Summer Mini #4: Birthdays for Our Medically Complex Kids and the Many Emotions They Can Bring Up
Birthdays, as we understand them societally, are a time
for celebrating, but it’s not so straightforward for all parents of medically complex kids. Birthdays can carry so much baggage, from feelings of isolation
to reminders of difficult hospital stays to a resurgence of anticipatory grief.
In this episode, we’re sharing all your thoughts and feelings as a community around birthdays: the joy, sorrow, and everything in between.
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 our episode on being inpatient during the holidays.
Listen to our episode on isolating during holiday events.
Listen to our episode on navigating the holidays with medically complex kids.
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! -
Summer Mini #3: A Close Call, Feelings of Regret + Embracing Second Chances | Suzi’s Catch-Up
If you’re thinking about traveling with your disabled or
medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back!
In this episode, we’re sharing the top ten things you
need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer travel vibes, we have some affirmations for you too.
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 Ep 127 on traveling with our disabled children.
Read our list of Top 5 Travel Carriers!
Read the original "10 Must-Haves for Traveling with a
Disabled Child” 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! -
Summer Mini #2: 10 Must-Haves for Traveling with Your Medically Complex Child This Summer
If you’re thinking about traveling with your disabled or
medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back!
In this episode, we’re sharing the top ten things you
need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer travel vibes, we have some affirmations for you too.
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 Ep 127 on traveling with our disabled
children.
Read our list of Top 5 Travel Carriers!
Read the original "10 Must-Haves for Traveling with a
Disabled Child” 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! -
Summer Mini #1: What We Wish We Could Go Back and Tell Ourselves
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! -
162: Season 9 Finale | A Season of Growth, Listener Thoughts + Summer Mini-Episodes w/ Alyssa Nutile
We’re finally rounding out Season 9, and what
a season it’s been. The topic of this season was relationships, and perhaps as expected, the episodes this season were weighty, tender, and so touching. And besides the production of the podcast, we were busy coming into our own with some big milestones for The Rare Life as a nonprofit with grant submissions and running our first major fundraiser.
In this episode, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Season 9. We’re also sharing the most popular episodes of the season, just for some comparison (it’s not always the ones you might expect!)
Finally, we’re giving you a glimpse into Season 10 and the all-new summer format we’re trying out, as we publish some lighter mini-episodes in the off season this summer.
Thank you so much for being here and supporting The Rare Life for 9 seasons now! We would not be here without you. Let’s dive in!
Links:
Follow Alyssa on Instagram @caffeinated_caregivers!
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! -
161: Having a Nondisabled Child After Your Disabled Child + Conflicting Feelings That Brings w/ Brianna Alcox
When you have a medically complex child, you probably have some realization that the experience you have with your child isn’t “typical.” But sometimes, it’s hard to understand just how different from the “norm” it was, until another child comes along – particularly one without disabilities or medical complexities.
In this episode, Brianna, a mom of disabled son who went on to have another nondisabled child, joins me to discuss how vastly the experience has been from one child to another. We also play audio clips from listeners as they share their own grief, joy, and insights that came up for them after having a nondisabled child after their disabled child.
And we end the episode by reiterating the honor and privilege it is to be able to raise our nondisabled and disabled children alongside each other, while still the conflicting emotions that come up for us.
This episode is so poignant and full of so many thoughtful reflections. Don’t miss it!
Links:
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Listen to Brianna’s story in Ep 105 and Ep 106.
Listen to Ep 99 on Family Planning.
Follow Brianna on Instagram @brianna.alcox!
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!
Top Podcasts In Kids & Family
You Might Also Like