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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

00:03:02

Announcement and Recommended Episode #1

The Rare Life ·

2021/11/18

For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th. But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may

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00:24:53

72: Season 4 Finale

The Rare Life ·

2021/11/11

Another awesome season come and gone! This episode is in celebration and appreciation of the meaningful episodes, guests, and listeners of season 4. In this episode, I share a few behind-the-scenes of the season (with an exciting update!) and reminisce as we listen to the sixteen episodes condensed into a two-minute segment. I also share and respond to three audio submissions from parent-listeners as they speak of the impact the podcast has had on them, and their favorite episodes of season

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00:44:31

71: Confessions of a NICU Nurse w/ Sam Keirsey, RN BSN

The Rare Life ·

2021/11/04

NICU nurses do what we just can’t do for our babies—and that in and of itself is magical and special and makes me over-the-moon grateful whenever I think about it. And while I’m grateful for all nurses that care for my son, there are certainly nurses that are better at their jobs than others. Better at loving, better at caring, better at making the family’s experience as meaningful and positive as possible. Sam Keirsey is one of those such exceptional nurses. In this episode, she shares some of her

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00:38:25

70: Accessibility and Ableism w/ Vanessa McLeod

The Rare Life ·

2021/10/28

At only 2.5 years old, Ivy has already faced discrimination based on her disability. In this episode, her mom Vanessa McLeod shares what that’s been like for her to advocate to give her daughter everything she deserves in life. She talks about the ableism they’ve encountered, and her blazing confidence that Ivy will live a fulfilled life. She insists again and again that her daughter’s disability is not sad at all—it’s wonderful. Links: Follow Vanessa on Instagram @venessamcleod_ Follow Madeline on

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00:40:32

69: Vanessa’s Story

The Rare Life ·

2021/10/21

Ivy was formed without forearms or hands, which was discovered halfway through Vanessa’s pregnancy. Because of this, she was pressured by her medical team to terminate the pregnancy. The doctors insisted her daughter would have no quality of life and left Venessa wondering if terminating would be the selfless thing to do. When she refused the termination, zero medical support or resources were offered. In this episode, we dig into what that was like for her, the ableism that fuels that type of

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00:39:31

68: Dipping My Toes into Educational Advocacy

The Rare Life ·

2021/10/14

As a total greenie in the IEP/504/educational advocacy realm, I was a bit surprised at the emotions that kept pounding in my heart. It was all familiar—the feeling of being a clueless parent in a new terrain as professionals used terms and procedures they assumed I understood. And of course, that familiar friend called grief. It was all there in my first ever eligibility meeting. But unlike the early days of the NICU when I had similar emotions, this time I was compassionate and understanding with

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00:40:43

67: What Your Child’s Doctors Want You to Know, But...

The Rare Life ·

2021/10/07

Although we often only see them for a brief 20-minutes at a time, our children’s doctors play a huge part in our children’s health and well-being. And depending on their bedside manner, we assume we know how much they care. In this episode with Dr. Dominic Moore, chief of palliative care at the local children’s hospital, gives us insights into how much our children’s providers really care. He shares the pain and grief they feel when things take a turn for the worse for our children, and the triumph

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00:30:58

66: Machine Dependency w/ Falesha Johnson

The Rare Life ·

2021/09/30

Kali relies on her trach and feeding tube for life. And as most parents with children who are dependent on life-sustaining equipment, Falesha both loves and resents it. Our children would not be alive today without them, and yet we still can feel annoyed and resentful towards the hassle and fears they bring. In this fun episode, Falesha advises NICU parents to take training seriously, shares both the how-to and the benefits of traveling with equipment in tow, and laughs at the fact that we as

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00:34:17

65: The Story of Cali

The Rare Life ·

2021/09/23

When Falesha was 37-weeks pregnant, her doctor found a few concerning birth defects in Cali that pointed to a rare syndrome called Pfeiffer Syndrome. From there, it was a flurry of preparation for her arrival. In this episode, Falesha shares how much their lives have changed over the 16 months of her life, and the ways she became an expert of her daughter’s syndrome to help her have the best care possible. Links: Check out photos of Falesha + fam on the website here. Let’s be friends on Instagram

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00:35:18

64: Improvement-triggered Grief

The Rare Life ·

2021/09/16

When your child’s development or health take a turn for the worse, its totally logical for the parents to struggle. Apathy, sadness, overwhelm, darkness, most parents have experienced this reaction at one time or another. But what about when their health takes a turn for the better? What about dropping off therapies and specialists? It seems like it would be a really straightforward response—happiness, relief, gratitude. And yet, as we’ve been receiving good news for our son, my brain has responded

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00:40:37

63: Medical Bills and Expenses w/ Gina Pola-Money

The Rare Life ·

2021/09/09

Figuring out financial assistance and insurance was one of the most difficult things Gina faced after she was widowed with two young medically-complex sons. After months of back-and-forth, she was finally able to secure the life-sustaining equipment her children required and deserved. The difficulty in the system inspired her to join an organization dedicated to helping families like ours navigate the medical-financial world. She recently retired after 31 years in the realm. In this episode, Gina

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00:40:53

62: Hospitalizations w/ Erica Ryan

The Rare Life ·

2021/09/02

Erica and Shaun learned quickly what works well during hospitalizations and what doesn’t during the 526 days they spent inpatient with their son Westly. After 526 days spent inpatient with their son Westly, Erica and her husband Shaun are alleged pros. They learned pretty quickly what works well—and what doesn’t. I met her a year ago when she sent me a copy of her Extended Stay Notebook, a spiral bound notebook meant for tracking medical happenings, and staying on top of things while at the

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00:42:19

61: The Story of Westley

The Rare Life ·

2021/08/26

Westley was born with a rare case of Down syndrome—he was part of the 1% that faced several severe medical complications. Because of this, his mom Erica never fit in with the scores of other parents of children with Down syndrome. Add in a couple of rare sub-diagnoses, and it’s clear that Erica is certainly one of us. In this episode, Erica shares a bit about Westley’s 455-day hospital stay which ended with a tough decision to switch him to comfort care and bring him home to spend the rest of his

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00:35:36

60: Blindness

The Rare Life ·

2021/08/19

Kimball’s confirmed blindness was one of the most torturous diagnoses to receive. And yet, I knew. I had known for months that he couldn’t see us. Our sliding glass door had his heart and his eyes. It had the smiles and the “goo”s far longer than a typical newborn. At 5 months, he hadn’t once looked at our faces. And the lack of visual connection was destroying my heart. Listen to hear what it was like to have this fear confirmed at a time I was barely holding it together with everything else that

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00:45:24

59: Educational Advocacy + IEPs w/ Catherine...

The Rare Life ·

2021/08/12

There are many challenging things about parenting a child with a disability. And among them, IEP meetings are one of the most daunting—they’re full of legal jargon and confusing processes. Catherine Whitcher has been guiding parents and schools in creating IEPs that our children reach their full potential for over twenty years, and in this episode, she gives us some of her best tips. Links: Find Catherine and her podcast here: Website: www.catherinewhitcher.com Facebook:

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00:42:39

58: Medical Advocacy w/ Tameka Diaz

The Rare Life ·

2021/08/05

Mom Tameka Diaz followed her gut that something was off with her daughter Evely (and had suspicions confirmed) not once, not twice, but three times! In each instance, she faced resistance of medical professionals and felt like she was on trial to prove that her daughter deserved tests and screens. The first time, Evely’s profound heart failure was discovered. The second time, Evely received a sleep study after much resistance, and found she had severe sleep apnea and required surgeries and machines

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00:40:11

57: The Story of Evely

The Rare Life ·

2021/07/29

Evely was born without eyes, a rare condition called anophthalmia. When Tameka and her husband brought Evely home from the hospital, they thought blindness would be their one hurdle to navigate. They quickly learned this would not be the case; over the past five years of her life, she has been accumulating diagnosis after diagnosis of things like microcephaly and CHD. And although she is far from lacking in the medical diagnosis department, she is considered undiagnosed because she has no genetic

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00:08:45

56: Season 4 Kickoff

The Rare Life ·

2021/07/22

This season’s theme takes a little more explaining than the first three—but long story short, we’re cycling back through themes, starting with season 1’s theme! This was always the plan, and I’m super excited to recycle those themes with a new spin. In this episode, you will hear more about the theme, and extended sneak peeks into first four episodes of season 4: a parent story episode, special topic episode, professional episode, and my solo episode. This season is another amazing one and I’m so

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00:16:35

55: Season 3 Finale

The Rare Life ·

2021/07/08

It’s time to celebrate another fantastic season of fantastic episodes! This season was full of gains and setbacks, from the size of our TRL community doubling, to a ridiculous number of last-minute guest cancellations due to hospitalizations. It’s been a rollercoaster for all involved and I’m grateful to all that have supported, including each of my loyal listeners. In this episode, we get to listen to brief clips from each episode of season 3. We also hear from three listeners about what they

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00:42:27

54: Disabled Adult Perspective w/Erica Stearns

The Rare Life ·

2021/07/01

Erica has been on both sides of the road—she grew up with medical complexities and now mothers two children with medical complexities. In this episode, she shares how this unique perspective has influenced her parenting and given her greater compassion for the struggles her mom faced. She advises us in touchy subjects like ableism and oversharing while also emphasizing the importance of our imperfect love for our children. This episode is all about the parent-child relationship and celebrates that

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