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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

00:52:10

159: Sharing the Mental Load with Your Partner in...

The Rare Life ·

2024/05/02

Nothing breeds resentment faster than one member of a romantic partnership feeling like they're pulling all the weight in one area of life. And when it comes to the parents of medically complex kids, that resentment can compound even faster, especially as the mental load of navigating medical care often falls onto one partner. (Let’s be real: it’s usually the mom.)In this episode, we’re diving into this topic of sharing the mental load – and how we can make that

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00:54:07

158: Serena’s Story | Disability Advocate Turned...

The Rare Life ·

2024/04/25

Before she had her son, Serena was already a pediatric SLP, business owner, and disability advocate who spent her time empowering families to understand and become more comfortable with their children’s disabilities. So, she was prepared for anything, or so she thought. But as it turns out, no amount of education or experience can prepare you for the moment your child receives a diagnosis for a disease that will eventually kill them. In this episode, I sit down with Serena Murison, SLP and

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01:12:34

157: Friendships with People Who Don’t Have Disabled...

The Rare Life ·

2024/04/18

Friendship, especially with those who don’t have disabled children, gets more complicated once you’ve had your own child with disabilities. It’s not necessarily fair, but it doesn’t change the fact that we often end up interacting differently with friends we had before our children were born.In this episode of The Rare Life, I’m joined by Jillian Arnold, host of her own disability parent podcast and mom to Roman and Stella, who both have ASMD (a.k.a. Niemann Pick

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01:09:32

156: Should I Get a Divorce? Insight + Solidarity...

The Rare Life ·

2024/04/11

Making the decision to leave your partner is no small thing, but sometimes, the rifts that come from the stresses of life as medically complex parents can erode our relationships.So how do you know if divorce is an option, and where do you start if you’re exploring that possibility? In this episode, Amanda Griffith-Atkins joins me to share advice on the unique issues surrounding divorce between parents of medically complex kids and read experiences shared from the community of other women who

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00:46:01

155: Aneesa’s Story | A Terminal Diagnosis + Dark...

The Rare Life ·

2024/04/04

When her son Jeremiah was first born, Aneesa had no medical training or experience. But as it became clear that something was out of the ordinary with Jeremiah’s health, she did what so many of us do when our kids need support: she started advocating and asking questions. Eventually through her research and advocacy, her son was diagnosed with a rare life-limiting mitochondrial disease, TK2D.In this episode of The Rare Life, Aneesa shares the new skills she had to learn as she was thrust into

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00:49:59

154: Deaths in the Community | How it Affects Us +...

The Rare Life ·

2024/03/28

As heart-breaking as it is, if you’ve been in the rare disease community for long enough, you probably know someone, maybe even someone close to you, who has lost a child. And because that potential reality looms large for so many of us, this loss can affect us as well.In this episode, Rose Watson, whose daughter Lavender has Trisomy 18, joins me to discuss her experience of maintaining a relationship with a friend who lost a child and how that experience impacted her and her friend

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01:15:57

153: Hurtful Things Loved Ones Say and Do | How it...

The Rare Life ·

2024/03/21

Have you ever been in a conversation with someone close to you only to be cut to your core by their offhand commentary about your disabled child, their medical issues, or the life you and your child have? Friend, you are not alone.In Ep 153 of The Rare Life, Amanda Griffith-Atkins, whose sone has Prader-Willis syndrome, joins us to address some of the hurtful comments we've received from those close to us. She gives us some helpful tips for navigating those uncomfortable interactions, mending

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00:38:40

152: Stephanie’s Story | A Stroke in Utero, Recurring...

The Rare Life ·

2024/03/14

Finding out your baby had a life-altering stroke in utero brings shock, heartache, and a whole lot of guilt. But when the medical trauma keeps coming after that initial diagnosis, year after year, hospital visit after hospital visit, there’s rarely time to work through all of those complicated feelings.⠀⠀⠀⠀⠀⠀⠀⠀⠀In Ep 152 of The Rare Life, Stephanie Stanley shares her story of navigating guilt, fear, and her new normal after discovering that her son Payton had a stroke in utero. Stephanie

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00:52:47

151: Fostering Friendships with Other Disability...

The Rare Life ·

2024/03/07

We all need friends... but not just any friends. We need friends who just get it and don’t need us to explain every little aspect of our life to understand. In short, we need friends who are also parents to disabled and medically complex children. But how do we find and make those friends?⠀⠀⠀⠀⠀⠀⠀⠀⠀In Ep 151 of The Rare Life, I sit down with Kari Harbath and Kate Livingstone to discuss how to create REAL, connective friendships with other parents of disabled kids. We chat about how to go about

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01:03:46

150: Siblings | Listening + Learning from Glass...

The Rare Life ·

2024/02/29

We talk all the time about our disabled children in this space... But what about their non-disabled siblings?In today's episode of The Rare Life, we're going to hear from them directly: about the good, the hard, the unexpected, and about just how much they love their disabled brothers and sisters. We heard from nearly thirty siblings, from toddlers to teens (and even a few adults!) Megan Schneider, a grown-up with a disabled sibling, also joins me to share her own experience and respond to these

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00:10:32

Mini Episode: A Sprint to the Finish for Our Family...

The Rare Life ·

2024/02/27

Only two days left in the Family and Friends fundraiser, and while we’re overjoyed and awed at how successful this fundraiser has been, we’re still 10% away from our goal!If you haven’t joined in on this fundraiser yet, it’s not too late. You’d be amazed at what you can accomplish in 48 hours, so will you join us for this final sprint to the finish? Get more info at https://therarelife.org/fundraiser. Thank you so much, friends! Links: Join us for The Family + Friends Rare Disease Day Fundraiser

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00:52:58

149: Annie’s Story | Physician Mom, Infertility, +...

The Rare Life ·

2024/02/22

Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then, finally, after all the difficulty, you get to have two beautiful twin girls, and you think maybe, “This is it! The struggle is over!” But, because life isn’t always fair, you find out soon after that one of your twins has a life-altering rare disease. This is the story of today’s guest, Dr. Annie Kuo. She shares her

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00:12:37

Mini Episode: An Exciting Update for Our Family and...

The Rare Life ·

2024/02/20

Less than a week into our Family and Friends fundraiser, and we have some super exciting news to share! If you haven’t joined in on this fundraiser yet, we’ve got a list of ways you can get involved, plus some helpful tips to make it all a little easier! Get more info at https://therarelife.org/fundraiser. Thank you so much, friends! Links: Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come! Follow us on

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01:27:31

148: The Family + Friends Perspective | What it’s...

The Rare Life ·

2024/02/15

Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside. So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Kassie Harbath, auntie of Sloan, a little girl with CHARGE syndrome, joins us to sort through all these

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00:55:46

147: Sex + Disability Parenting | All the Ways It...

The Rare Life ·

2024/02/08

If you feel like you’re missing out on sexual intimacy in your life since entering your medically complex or disability parenting journey, you are not alone! We took a poll on Instagram and 90% of respondents said that their sex life had been impacted by medically complex life. The reasons for this impact are endless: no time, no energy, no space, no emotional bandwidth, and the list goes on. So in this episode, we’re diving into specific thoughts and struggles from this incredible Rare Life

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00:59:42

146: The Dad Perspective w/ Derek Dizney, Zach...

The Rare Life ·

2024/02/01

When it comes to parenting children with rare disease, there’s often a lot of focus on the moms and their experiences around birth, the diagnostic process, and the work of giving care. One group we hear a lot less from? The dads. So in today’s episode, we’re digging in to the Dad side of things. Joined by Derek, whose daughter has intractable epilepsy, Juston whose son has CDPX1, and Zach who daughter also has a rare genetic disorder, these dads share what it was like rebuilding

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00:42:30

145: Ashley’s Story | Childhood Dementia, An Ended...

The Rare Life ·

2024/01/25

When Ashley’s daughter Sadie was born, medical complexity took their family by surprise. A hospitalization post-birth eventually led to a life-limiting diagnosis of childhood dementia, and Ashley’s family was turned completely upside down. In this raw and real episode of The Rare Life, Ashley shares what it was like to receive her daughter’s diagnosis, the ways this revelation altered her family, and how she’s found new and fulfilling relationships in her life since then. And

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00:30:51

144: Season 9 Kickoff | This Season’s Theme, Our...

The Rare Life ·

2024/01/18

It’s wild to think about, but we’re kicking off Season 9 of The Rare Life! And this season, it’s all about relationships. Relationships with your child, your spouse, your peers, your friends, your loved ones, and more! We’re not holding anything back, so some of these topics might get a little spicy! Plus, we’re introducing our 2024 Friends + Family Rare Disease Day Fundraiser! It’s our first major fundraiser, and if it goes well, we could raise funds to keep running this podcast and supporting and

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00:45:18

When Your Child is Inpatient at Hospital During...

The Rare Life ·

2023/12/07

There’s not much that feels worse than getting stuck in a hospital during the holiday season or having to miss a special celebration due to appointments or illnesses. Of course, there’s the trauma of being in the hospital again, but it’s also lonely, isolating, and demoralizing to feel like everyone gets to celebrate except for your family. You might feel pressure to experience the holiday early or find ways to celebrate in the hospital – or you might be too exhausted and

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00:43:27

Isolating at Home During Holiday Events to Avoid...

The Rare Life ·

2023/11/30

No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if we’re “overreacting” out of anxiety or just being reasonably careful. In today’s

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