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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

00:40:40

96: “All We Want Is a Healthy Baby” | How This Feels...

The Rare Life ·

2022/08/25

We’ve probably all heard it before: When asked whether a parent is hoping their unborn baby is a boy or a girl, they reply sweetly, “all we want is a healthy baby.” To most people this seems like a valiant proclamation of unconditional love and indifference to the baby’s gender. But to parents of medically complex and admittedly very unhealthy babies, it can really pack a punch. In this solo episode, Madeline unpacks what emotions this often brings up for parents, drawing from her own experience as

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00:45:11

95: The Parable of the Pain Scale | How Bearing...

The Rare Life ·

2022/08/18

We are often asked to rate our pain on a scale of 1-10 for medical professionals. Sometimes for ourselves, other times for our children. And it is often so hard to know what number to give our pain. In this episode, mom Libby Holley shares how this pain scale can also be used to rate our emotional pain, and the ways it calibrates according to our life experiences. So many of us experience pain on a level we’ve never felt before as we become medical parents. Suddenly, what feels like an 8 for our

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00:48:12

94: Family + Friends | How to Stay Close When You...

The Rare Life ·

2022/08/11

When receiving a diagnosis for your child—or dealing with medical complications—it can feel like you’re suddenly thrust into a separate world than your family and friends. And this can be super distressing and disorienting at a time you need them most. In this episode, Chelsea shares how her relationship with her family and friends has been impacted by the different life she leads with her disabled sons. We chat about the isolation we feel in knowing our friends and families have no idea what we go

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00:41:34

93: Chelsea’s Story | Airway Issues, a Dirty Baby,...

The Rare Life ·

2022/08/04

When her 6-year-old son Jace was born, they quickly recognized how difficult it was for him to breathe. A NICU stay, rare diagnosis, several intense surgeries, and 4 years later, they welcomed their second son Emmerson to the family. Once again, they were facing difficulty breathing, a NICU stay, and surgeries all caused by the same rare condition their older son has. In this episode, Chelsea tells these stories and share how hard it is to make big medical decisions for her children because, so

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00:10:54

92: Season 6 Kickoff

The Rare Life ·

2022/07/28

We’re back with brand-new episodes of Season 6! In this short and sweet episode, host Madeline Cheney introduces the theme of the upcoming season and gives sneak peeks into the first four episodes of Season 6. Links: Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Check out our appointment day merch. Check out our sponsor BetterHelp for online licensed therapy.

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00:34:32

Jess’ Story | A Twinless Twin and Something to Prove...

The Rare Life ·

2022/07/21

Not every twin has a living sibling—and Lily is an example of this tragic phenomenon. Her sister, Autumn, passed away at 24-weeks gestation, and she was born a few days later. In this episode, mom Jess shares the pain of losing a child and of the struggles that Lily has had because of her premature birth. Lily has a tracheostomy, is G-tube fed, and has damaged lungs due to her intubation during her 256-day NICU stay as she fought for her life. Lily almost died several times during her stay, but one

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00:38:56

The NICU Experience | An Initiation into...

The Rare Life ·

2022/07/14

For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and cords protrude their precious infant. Beyond that, the emotional rollercoaster endured pushes many parents past their limits—and yet here we are. In this solo episode, I share a bit about what Kimball’s NICU experience was for us, with memories that are relatable for my fellow parents of NICU babes, and eye-opening for the less experienced. This

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00:38:20

Effie’s Story | Siblings, Italy, and a Next-Level...

The Rare Life ·

2022/07/07

Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed. In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat about the huge perspective-shift that comes along with a child with medical complexities—the little things

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00:42:33

What Your Child’s Doctors Want You to Know, But Don’t...

The Rare Life ·

2022/06/30

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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00:38:46

Confessions of a Medical Mama w/ Anna Brown...

The Rare Life ·

2022/06/23

The parenting experience with a child with medical complexities can feel worlds away from those around us. There are so many aspects that no one knows or sees. In this episode, Anna Brown shares three of her infamous “Confessions of a special-needs mama” that she has a reputation for on Instagram. We unpack three of her—and her followers’—favorites: 1. I am not stronger than you. 2. What happens when it stops being cute? 3. I wish your pity were replaced with empathy. This is a rebroadcast of Ep

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00:32:32

Medical Equipment| The Ultimate Hate/Love...

The Rare Life ·

2022/06/16

Cali 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 parents

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00:34:08

It’s All My Fault (Rebroadcast)

The Rare Life ·

2022/06/09

Finding out I’m a genetic carrier for my son’s syndrome of CDPX1 was a very tough pill to swallow; and it has a whole slew of implications for my life. It means I caused all of my son’s hugely challenging and life-threatening birth defects. And it also means that each of our children have a 50/50 chance of inheriting the unlucky genes. Listen to find out what it was like to receive this life-changing news and what we’ve decided to do about it. This is a rebroadcast of Ep. 22 of Season 2. Links: The

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00:37:58

It’s OK to be Angry w/ Orley Bills, LCSW (Rebroadcast)

The Rare Life ·

2022/06/02

The rollercoaster of emotions that comes along with having a medically complex child is an inherent part of the “job”. Orley Bills, the Harley-loving social worker in the Rainbow Kids Pediatric Palliative Care team, spends his days supporting said parents while their children are hospitalized at Primary Children’s Hospital. Sometimes he does this by utilizing his training as a certified grief counselor and LCSW and helping them sort through the hugely painful emotions that arise. Other times he

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00:46:36

When Your Mommy-Gut Is Alarming and The Doctors Won’t...

The Rare Life ·

2022/05/26

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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00:39:33

91: Season 5 Finale w/ Special Guest Brittany Steitz

The Rare Life ·

2022/05/19

Hear all the tea on The Rare Life podcast and celebrate the two-year birthday with us in this incredibly fun finale episode. For the first time ever, I am joined by a special guest to celebrate and reflect right along with me —newest TRL team member and my biggest hype woman Brittany Steitz. This episode is a whole lot of fun and a lot longer than typical finale episodes, too! In this episode, we listen a 3-minute audio clip composed of snippets from each of the 20 episodes of Season 5. We listen to

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00:28:04

90: Living with Sleep Deprivation w/ Jill Arneson

The Rare Life ·

2022/05/12

There are many reasons we lose sleep as parents of children with disabilities. Maybe our child requires nighttime medical care or monitoring, and we don’t have nighttime nursing. Perhaps we feel guilty for sleeping while they’re not. Or we are unable to sleep while our minds buzz with a never-ending list of tasks of care, of past trauma, and fear of the future. In this episode, Jill shares what keeps her up at night and the things she does to try to get a little more sleep. Links: Ep. 25: EMDR

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00:35:48

89: Gaslit by Others and Ourselves

The Rare Life ·

2022/05/05

The pain we’ve experienced alongside our disabled children is often gaslit by others. Responses like “Oh, it’s not that bad…” and “At least….” Or “You should be grateful that….” are all forms of toxic positivity. Just like that, our pain and struggle are minimized. But the same can happen internally. When we’re struggling and our inner voice berates with “you’re so weak” and “it’s really not that bad” and “so-and-so has it so much worse than you do.” Both are harmful and both need to

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00:46:37

88: Numbing Out When Things Are Tough w/ Anna Smyth,...

The Rare Life ·

2022/04/28

Numbing out is a go-to coping mechanism for so many of us experiencing painful and stressful situations and emotions. And it’s not a bad thing! There are situations when we absolutely need to. But when we numb out excessively, we can become hardened and a bit of a shell of ourselves. And we deserve more. In this episode, mindfulness expert Anna Smyth explains the ins and outs of numbing out and how we can take small and compassionate steps towards choosing to stay present when our kneejerk response

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00:38:12

87: Depression, Anxiety, + PTSD in Medically-Complex...

The Rare Life ·

2022/04/21

Karley has always dealt with anxiety. But as is the case for many of us, her mental health took a turn for the worse when her daughter Nora was born. Because of the medical trauma that ensued for the whole family, she now deals with night terrors, panic attacks, and depression as well. In this episode, Karley shares how she copes with these things while caring for her daughters. She also shares the difficulty of therapy, accepting a diagnosis of PTSD, and seeing her six-year-old daughter struggle

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00:36:00

86: Karley’s Story | Two Rare Syndromes, Playing the...

The Rare Life ·

2022/04/14

With more than 20 therapists and doctors for her two daughters, Karley spends almost every day at appointments with her two daughters. Her three-year-old Nora has two rare syndromes which come along with many sub-diagnoses including hydrocephalus. In this episode, Karley shares what it was like to receive a prenatal diagnosis and to play the waiting game until birth. She also shares the incredible experience of seeing her baby smile and open her eyes for the first time after a life-saving shunt was

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275 results

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