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The Rare Life: Daily Summaries Delivered
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 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.
Latest Episodes
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- Today31 min
Single Medical Parenting with Danielle Cortijo (Summer Mini #8)
Parenting a medically complex child without a partner or co-parent can bring a new level of difficulty. From managing the financial realities of a solo parent household to the emotional weight of making all the decisions on your own to the uncertainty of who would care for your child if something happens to you, we’re covering what makes solo medical parenting a little different from a partnered parenting experience. (And why it’s unfortunately still relatable to some parents who technically have partners too.)A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Listen to Ep 156: Should I Get a Divorce?Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.
- 1 weeks ago35 min
Why Asking for Help Feels So Hard (Summer Mini #7)
As parents taking care of disabled and medically complex kids, we could probably use a little more help and support than the average person... But that doesn’t make it easy to ask for it.From guilt to societal pressure to simply not having anyone you can trust for support, we’re digging into why help is just so hard to ask for. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Fillout our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.
- 2 weeks ago29 min
Sexual Health for Disabled Youth w/ Jill Arneson & Amanda Griffith-Atkins (Summer Mini #6)
As our disabled and medically complex children grow and mature, caring for and navigating their sexual health can be a tricky topic. From appropriately navigating sexual activity, consent, basic hygiene and even more complicated topics like birth control and how puberty can bring about new health complications, we’re breaking down a ton of different sexual health aspects in this episode.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow Amanda on Instagram @amanda.griffith.atkins!Follow Jill on Instagram @jill.arneson!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.
- 3 weeks ago24 min
Clinical Trials | Should I Enroll my Disabled Child in One? (Summer Mini #5)
Clinical trials are so important. They’re how new therapies and treatments and cures are developed for diseases, and how we update our medical knowledge. At the same time, they aren’t without risk for our kids and our families. So, how do you decide whether it’s worth it? We’re breaking down that question with pros, cons, and personal experiences.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.
- 4 weeks ago26 min
How Time in Nature Impacts Disability Parents (Summer Mini #4)
Nature can be healing. But when you have a disabled or medically complex child, getting outside can also be complicated.Today, we’re talking about the ways nature grounds us, the grief that can come up when it is not accessible to our kids, and the small, beautiful ways our families still find their own version of outside.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.
- Jun 25, 20261h 24m
Traveling with Disabled Kids Tips and Tricks (Summer Mini #3)
For most of us, traveling with medically complex and disabled children can feel daunting, scary, or maybe even impossible. But while not necessarily easy or simple, if travel is a priority for your family, it is possible with the right planning and preparation.In today’s episode, we share the best tips and tricks from The Rare Life community. We cover everything from general planning to airplane specific tips (there are a ton!) to finding the best accommodations and more. We even have a few tips for camping with medically complex kiddos!Plus, we also dive into the big feelings that can come up for us around traveling with our kids and why it’s okay if that’s not a priority for your family right now. If you really want to take your disabled children on a trip, there are many ways to do it, but we also recognize that travel still isn’t feasible or accessible for many.Thank you to everyone who submitted tips, tricks, hacks, and ideas to this episode! And don’t forget to check our website and YouTube channel (linked below) for articles linking our favorite travel items, carriers, and tips, plus images of all the setups and devices parents in our community use.Links:Visit our Youtube channel to see thevideo version of this episode with photos of all the items mentioned and captions so you can read along!Listen to Ep 118: Organization Hacks for helpful devices when packing andtraveling.Listen to Ep 66 with Falesha Johnson on how she travels with her daughter Cali, who was machine dependent at the time.Follow us on Instagram @the_rare_life!Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Donate to the podcast or Contact me about sponsoring an episode.
- Jun 18, 202618 min
The Forgotten Fathers | To The Dads Who Hold It All Together w/ Lizzie (Summer Mini #2)
The dads deserve a village too.In this Father’s Day mini episode, Madeline talks with Lizzy of Wonders of Wally about her poem, The Forgotten Father, and the quiet, crushing ways dads are often expected to carry everything without being seen.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Listen to Ep 146: The Dad Perspective.Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow Lizzy on Instagram @wonders_of_wally!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.
- Jun 11, 202621 min
Summertime Feels, Disability Ed. (Summer Mini #1)
It’s summer! But when you have a disabled or medically complex kids, this season can bring with it many, many mixed feelings. Today, we’re digging into all of that: how we feel about summer, what makes summer uniquely hard for our families, and the parts of summer we still love anyway.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.
About The Rare Life
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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