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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

00:53:27

Should A Child’s Disability be Part of Their Parent’s...

The Rare Life ·

2023/07/06

Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent. But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic with the best of the best. In this conversation with famed disability activist, speaker, and author of

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00:46:50

The Parable of the Pain Scale | The Ways Bearing...

The Rare Life ·

2023/06/29

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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00:45:55

The Story of Claire (Rebroadcast)

The Rare Life ·

2023/06/22

Although Claire’s medical condition has many characteristics, for Katie and her husband they all pale in comparison to the heart-shattering fact that it is terminal. In this episode, we laugh and we cry as mom Katie shares all about her adrenaline-junky four-year-old daughter Claire, her pregnancy and birth story, and the gut-wrenching moments of learning that their precious newborn would not survive childhood. She also shares ways that she has become a stronger, more gratitude-filled and

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01:33:09

Family Planning When You Have a Medically-Complex...

The Rare Life ·

2023/06/15

When you have a child with a medical complexity or disability, so many things get flipped on their head. And one of those things is family planning. Something that may have seemed relatively simple and straightforward becomes muddled and complicated. We wonder—rightfully so—if we have the mental and physical capacity to care for an additional human being. And if we choose to move forward with adding to our family, how can we endure the anxiety that would likely flood us during a subsequent

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00:33:34

It’s All My Fault (Rebroadcast)

The Rare Life ·

2023/06/08

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 one of my favorite episodes

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00:29:42

Living with Sleep Deprivation w/ Jill Arneson...

The Rare Life ·

2023/06/01

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. *This is a rebroadcast

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00:46:09

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

The Rare Life ·

2023/05/25

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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01:14:44

127: Season 7 Finale + 3 Year Anniversary | How This...

The Rare Life ·

2023/05/18

It’s the very last episode of Season 7! We have clips from every episode this season, listener take-aways, and a very special guest: my husband Juston. This finale is a little different from seasons past because we’re not just celebrating another season, it’s also the third anniversary of the podcast. To honor that milestone, I’m answering a ton of questions with Juston from this community about what it’s like behind the scenes, how I plan and run the podcast, and how I handle the sometimes heavy

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00:50:33

126: Therapies | When to Scale Back and How to Do So...

The Rare Life ·

2023/05/11

Most parents, myself included, fall into this trap when we first bring our medically complex kids home: We want what’s best for them, and that usually feels every type of therapy we can get (OT, PT, Speech, and more!) And if some therapy is good, then more is great, right?! But after months or years of running from one therapy session to another, often while juggling school, siblings, work, and homelife, it can become too much, and not just for us, but our kids that are supposed to be receiving

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01:23:30

125: Tips and Tricks for Traveling with Disabled Kids...

The Rare Life ·

2023/05/04

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, Alyssa Nutile and I share the best tips and tricks from The Rare Life community, plus a few of Alyssa’s own tips from all the traveling she’s done with her daughter Gemma. We cover everything from general planning to

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01:00:13

124: Suzy’s Story | Brain Injury, the Exhaustion of...

The Rare Life ·

2023/04/27

Life as parents of medically complex children is full of extremes: intense love for our children, deep exhaustion from handling their medical care, incredible resilience to keep going, and extreme anguish that comes with having to make decisions that none of us can even fathom until we find ourselves in that position. Today’s episode with Suzy Boubion is so raw and so tender as we discuss some of those impossible choices we face as parents to medically complex children. She tells the story of her

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01:03:02

123: “Special Needs” + Why Parents Need to Drop the...

The Rare Life ·

2023/04/20

**This is the voiceover version. There are two versions of this episode! One where you can hear directly from Hannah, and one where we used an AI voiceover. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation! Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)? The words we use might seem inconsequential at first glance,

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01:03:03

123: “Special Needs” + Why Parents Need to Drop the...

The Rare Life ·

2023/04/20

**This is the original version. A voiceover version is available on this platform. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation! Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)? The words we use might seem inconsequential at first glance, but I’m talking with Kari Harbath (mom to a disabled daughter) and Hannah

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01:04:18

122: 5 (Surprising) Things Parents Want Special Ed....

The Rare Life ·

2023/04/13

Parenting a child with medical complexity or disability often means learning a ton of new skills—and new systems—often in a very short period. Making that process more difficult is the fact that many of the individuals working in those systems, like special education professionals and therapists, aren’t actually parents of disabled children if they even have children at all. And because of this, communication between both sides can be... let’s just say difficult at times. Here to help bridge the gap

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00:42:14

121: When Strangers “Just Ask” + How to Handle That...

The Rare Life ·

2023/04/06

As parents of medically complex kids, we’ve all been there. We’re at the park or the grocery store with our kid, and someone we don’t know walks up to us and starts asking questions about our child. You might be so put off that you don’t know what to say. Or you might just start saying whatever pops into your head, which can devolve into unintentional oversharing, because we’re often under the impression that it’s rude NOT to answer a question. But if you’ve ever wanted permission to just not answer

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00:50:33

120: Alexis’ Story | Epilepsy, Holland, + Suicidal...

The Rare Life ·

2023/03/30

If you’ve been doing this rare or medically complex life for a while, how much do you remember about those early days? Maybe you were still searching for a diagnosis or maybe you’d just gotten one while still dealing with the fog of having a medically fragile infant. Or maybe you’re in that space right now, still coping with the news of a recent diagnosis or traumatic birth. Those early days are so important and so impactful to reflect on, so today, I’m talking to new mom Alexis about her daughter

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00:51:35

119: Your Child’s Medical Team | How to Push Back,...

The Rare Life ·

2023/03/23

Of all the skills we have to learn as parents of medically complex children, one of the most difficult is often just finding a medical team that you trust, and that trusts and respects you as well. When it comes to dealing with doctors and other specialists, it can sound like they’re speaking a different language, and we are often coming to the table from two very different perspectives. So in today’s episode, Dr. Kelly Fradin, MD shares with us how we can better communicate with our child’s medical

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01:02:21

118: Medical Organization Hacks | Supplies + Info +...

The Rare Life ·

2023/03/16

When it comes to caring for children with rare disease or medical complexities, I never expected that keeping all our supplies organized, our appointments scheduled, and the mental energy that goes into just staying on top of life would be one of the biggest challenges. And as it turns out, I’m not alone with that feeling! So today’s episode is a community-collaboration. On Instagram, I asked for all your best tips for staying organized, and you delivered! We have hacks for making tube-feeding

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00:59:07

117: Trauma-versaries + Other Triggers to Our Medical...

The Rare Life ·

2023/03/09

Traumaversaries... those terrible anniversaries of traumatic events. As parents of medically complex of disabled children, we all have them, often linked to medical trauma that our families have experienced. So often, the feelings that come up on these days feel overwhelming and unavoidable. But you are not alone. Today, I’m sharing my conversation with Hailey Adkisson and Madhura Katre, two moms of medically complex daughters, about how we handle our traumaversaries. We cover tips to get through

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00:52:26

116: Kinda Obsessed | Celebrating Our Relationships...

The Rare Life ·

2023/02/28

Today, we have one of my favorite episodes ever to share with you! It’s Rare Disease Day, and while we’ve done episodes for this awareness day in the past, I wanted offer something a little different this time around. So instead of a discussion of rare diseases or diagnoses or even awareness, we’re celebrating the beautiful and unique relationships we get to have with our rare kiddos. I asked parents from our community to record their answers to four questions about their relationship with their

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