x

75% of people globally want unbiased news (Pew Research) but are concerned they're not getting that.

Get balanced coverage with Symby. See how stories are covered across diverse outlets and spot when one side covers a story the other skips.

PODCAST

The Rare Life

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

kids & family parenting

All Episodes

01:24:34

167: What We Want New Medical Parents to Know w/...

The Rare Life ·

2024/09/19

When we first enter this world of medical uncertainty as parents, no one gives us a handbook. None one holds our hand to walk us through what to expect, what is coming next, and what life might look like going forward.So we asked this community, if you could go back to the beginning –knowing what you know now– what would you tell yourself as a brand new medical parent? What would you want to know right at the beginning? And in today’s episode, I’m sitting down with Chandra Bloomfield to share those

en

00:57:01

166: Nonspeaking Child | Longing to Access Their...

The Rare Life ·

2024/09/12

How do you give your child medical autonomy when they struggle to communicate? How do you determine their preferences when they cannot explain their inner thoughts to you? How do you help them when they cannot tell you where their pain is?These are the questions that keep today’s guest, Suzi Bubion, up at night. Her son, Oliver, is nonspeaking, and this struggle to communicate is one of the biggest challenges for Suzi’s family as they help Oliver navigate his disabilities. In this

en

01:09:34

165: What We Want Our Child’s Therapists to Know, But...

The Rare Life ·

2024/09/05

Have you ever wanted to tell your child’s therapist *exactly* how you feel about therapy homework?Or remind them just how many other therapy appointments you have scheduled this week. Or maybe just explain to them that... you want to be mom, not play the role of therapist today. In today’s episode, I’m joined with guest and fellow disability parent Alex Farha to go through all the things that parents from this community wish they could say to their child’s therapists. We

en

00:51:45

164: Jillian’s Story | Medical Mom x 2 and the Saying...

The Rare Life ·

2024/08/29

Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold foundherself in after the birth of her daughter, Stella. In this tender, raw episode, Jillian describes what it was like navigating a surprise pregnancy in the midst of receiving her

en

00:25:35

Season 10 Kickoff | Episode Sneak Peaks, Newsletters...

The Rare Life ·

2024/08/22

It’s time for Season 10! And once again, we’re coming back to the topic of our children’s disabilities and medical complexities. We have episodes on what we wish therapists knew, being a “crunchy” parent with medical complex children, some heart-wrenching story episodes, and a few *spicy* (and currently secret) episodes that’ll come out toward the end of the season.But, before we dive into our sneak peeks at the end of the episode, we’ve got some exciting updates for you! We’re launching a

en

00:24:23

Summer Mini #12: Adjusting to Disability Parenting as...

The Rare Life ·

2024/08/15

It’s only been a year since we’ve heard from Maddison... but oh the things that can change in a year. Shortly after we initially recorded Maddison’s story, she and her husband separated. And the life that Maddison and her daughter knew before with a team of two parents working side by side and supporting each other, it just didn’t look the same anymore.In this mini-episode, Maddison shares how she’s coped with the abrupt adjustment to single medical parenthood. She shares the parts that she’s found

en

00:24:58

Summer Mini #11: Family Planning Decisions + Changing...

The Rare Life ·

2024/08/08

Three years ago, I shared two episodes about my ownfamily: one where I discussed how I discovered that I was a carrier for my son’s condition, and another where I talked about how much my older daughter struggled with accepting her brother. In the years since, we’ve navigated difficult decisions and agonizing choices, and now, for once, we feel somewhat settled. In this episode, I’m sharing those decisions, how we made them, and how they’ll impact our future. Plus, I’m sharing a positive and

en

00:19:50

Summer Mini #10: Finding a New Home + Starting Over |...

The Rare Life ·

2024/08/01

When we last spoke to Tiffany, she was still trying to find something that felt like solid ground after going through a divorce right before the birth of her medically complex daughter. She and her two children were living in a trailer and trying to answer the question: What now?In this catch-up episode, Tiffany shares how much has changed in these last two years, from inter-state moves to buying a new life to finding a balance as a single mother between the unique needs of each of her daughters

en

00:21:01

Summer Mini #9: Our Complicated Relationship with...

The Rare Life ·

2024/07/25

You know that thing that you can’t seem to live without,but also don’t want to live with most of the time? That seems to describe the relationship most of us have with the medically complex and rare disease Facebook group community. In this episode, we’re sharing all your thoughts, feelings, and frustrations with these crucial, life-saving, and yet sometimes difficult to navigate spaces on the internet. Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious

en

00:24:50

Summer Mini #8: Rebuilding After Life-Changing Loss |...

The Rare Life ·

2024/07/18

Kari was one of our very first guests almost four yearsago now. When we talked then, her daughter Sloan was still tiny, her husband was still alive, and the Covid-19 pandemic hadn’t happened yet. And now? Well, her entire world has changed in big and small ways. In this catch-up episode, Kari shares with us what it’s been like trying to relearn how to live in the world without her husband and partner, and she shares all the ways that Sloan has been the driving force to keep her going in some of her

en

00:13:43

Summer Mini #7: Everything You’ve Ever Wanted to Know...

The Rare Life ·

2024/07/11

Each week, I share a new episode and guest, but Irealized that it’s been a long time since I’ve shared much of me, Madeline, with you. So today, I’m peeling back the curtain today and sharing all sorts of fun (and maybe a few not so fun) facts about me, my life, and my family. I’m sharing what motherhood looks like these days, traits that I do and don’t love about myself, and lots of other lower stakes facts. I’m so grateful for this opportunity to be vulnerable with all of you, and I am so

en

00:19:52

Summer Mini #6: The Oddly Specific Things We Grieve...

The Rare Life ·

2024/07/04

There’s plenty of grief that we expect as parents of medically complex kids... But what about those little pangs that seem to come out of nowhere?In this mini episode, we’re sharing the surprising and often oddly specific things we grieve as parents of medically complex children, from missing out on birthdays to struggling at beach trips. This is one episode that will make you feel SO SEEN. Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our

en

00:20:34

Summer Mini #5: Childhood Cancer + Changing...

The Rare Life ·

2024/06/27

After learning to accept and manage her younger daughter’s disabilities, Vanessa thought she had a pretty good understanding of what it was like to raise a child with rare medical issues. But a diagnosis of childhood lymphoma for her older daughter turned all those notions upside down.In this short catch up with Vanessa, she’s sharing the way that childhood cancer completely changed the way Vanessa looks at raising children with medical complexity. She shares the toll this diagnosis took on their

en

00:16:49

Summer Mini #4: Birthdays for Our Medically Complex...

The Rare Life ·

2024/06/20

Birthdays, as we understand them societally, are a timefor 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

en

00:18:49

Summer Mini #3: A Close Call, Feelings of Regret +...

The Rare Life ·

2024/06/13

If you’re thinking about traveling with your disabled ormedically 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

en

00:16:33

Summer Mini #2: 10 Must-Haves for Traveling with Your...

The Rare Life ·

2024/06/06

If you’re thinking about traveling with your disabled ormedically 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

en

00:15:10

Summer Mini #1: What We Wish We Could Go Back and...

The Rare Life ·

2024/05/30

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

en

00:47:10

162: Season 9 Finale | A Season of Growth, Listener...

The Rare Life ·

2024/05/23

We’re finally rounding out Season 9, and whata 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

en

01:09:41

161: Having a Nondisabled Child After Your Disabled...

The Rare Life ·

2024/05/16

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

en

01:03:04

160: Ashley Smith’s Story | Sibling Dynamics,...

The Rare Life ·

2024/05/09

After Ashley Smith’s son Deacon was admitted to the NICU, and one thing after another cascaded out of control with his care, she found herself literally screaming in the nursery “THIS IS NOT MY PLAN!” While not all of us have screamed this out loud, so many of us have had a similar breaking point, where the weight of fear and grief and lost expectations bear down on us. In this episode, Ashley shares what it was like to navigate this complex grieving process in her own family after

en

274 results

Similar Podcasts

Tale Teller Kids™

Sarnia de la Mare

米克馬故事坊

咪萊

Imagination Station

Imagination Station

Die Pferde sind nicht das Problem - und du bist nicht zu blöd. Der Aha-Podcast für Pferdemenschen

Silke Jahn & Maren Diehl

Hanna fragt Papa - Der Podcast für neugierige Kinder und Eltern

Hanna und Thomas Schamberger