Best Madeline Cheney Podcasts (2024)

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Summer Mini #8: Rebuilding After Life-Changing Loss | Kari’s Catch-Up 24:50

2h ago24:50

24:50

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’sbeen like trying to relearn how …

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Summer Mini #7: Everything You’ve Ever Wanted to Know About Madeline 13:43

2d ago13:43

13:43

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, traitsthat I do and d…

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Summer Mini #6: The Oddly Specific Things We Grieve as Parents of Medically Complex Kids 19:52

10d ago19:52

19:52

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 …

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Summer Mini #5: Childhood Cancer + Changing Perspectives | Vanessa’s Catch-Up 20:34

19d ago20:34

20:34

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…

1
Summer Mini #4: Birthdays for Our Medically Complex Kids and the Many Emotions They Can Bring Up 16:49

26d ago16:49

16:49

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 isolationto reminders of difficult hospital stays to a resurgence of anticipatory grief. In this episode, we’re sharing all your thoughts and feeling…

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Summer Mini #3: A Close Call, Feelings of Regret + Embracing Second Chances | Suzi’s Catch-Up 18:49

1M ago18:49

18:49

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 youneed to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for …

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Summer Mini #2: 10 Must-Haves for Traveling with Your Medically Complex Child This Summer 16:33

1M ago16:33

16:33

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 youneed to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for …

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Summer Mini #1: What We Wish We Could Go Back and Tell Ourselves 15:10

2M ago15:10

15:10

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 comm…

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162: Season 9 Finale | A Season of Growth, Listener Thoughts + Summer Mini-Episodes w/ Alyssa Nutile 47:10

2M ago47:10

47:10

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 submiss…

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161: Having a Nondisabled Child After Your Disabled Child + Conflicting Feelings That Brings w/ Brianna Alcox 1:09:41

2M ago1:09:41

1:09:41

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 o…

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160: Ashley Smith’s Story | Sibling Dynamics, Nontraditional Gender Roles, + Not Knowing What to Grieve 1:03:04

2M ago1:03:04

1:03:04

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 expecta…

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159: Sharing the Mental Load with Your Partner in Disability Parenting w/ Amanda Griffith-Atkins + Will Atkins 52:10

3M ago52:10

52:10

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 …

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158: Serena’s Story | Disability Advocate Turned Disability Parent, a Degenerative Diagnosis, + the Power of Now 54:07

3M ago54:07

54:07

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 t…

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157: Friendships with People Who Don’t Have Disabled Kids w/ Jillian Arnold 1:12:34

3M ago1:12:34

1:12:34

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 …

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156: Should I Get a Divorce? Insight + Solidarity from Divorced Medically Complex Parents w/ Amanda Griffith-Atkins 1:09:32

3M ago1:09:32

1:09:32

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 …

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155: Aneesa’s Story | A Terminal Diagnosis + Dark Clouds and Silver Linings 46:01

4M ago46:01

46:01

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 ra…

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154: Deaths in the Community | How it Affects Us + Our Relationship with the Parents w/ Rose Watson 49:59

4M ago49:59

49:59

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 …

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153: Hurtful Things Loved Ones Say and Do | How it Affects Us + What to Do About It w/ Amanda Griffith-Atkins 1:15:57

4M ago1:15:57

1:15:57

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…

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152: Stephanie’s Story | A Stroke in Utero, Recurring Medical Trauma + No Space To Process It 38:40

4M ago38:40

38:40

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, Stephan…

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151: Fostering Friendships with Other Disability Parents w/ Kate Livingstone and Kari Harbath 52:47

5M ago52:47

52:47

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 …

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150: Siblings | Listening + Learning from Glass Children w/ Megan Schneider 1:03:46

5M ago1:03:46

1:03:46

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 toddler…

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Mini Episode: A Sprint to the Finish for Our Family and Friends Fundraiser! 10:32

5M ago10:32

10:32

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 finis…

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149: Annie’s Story | Physician Mom, Infertility, + Comparison Between Twins 52:58

5M ago52:58

52:58

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…

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Mini Episode: An Exciting Update for Our Family and Friends Fundraiser! 12:37

5M ago12:37

12:37

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…

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148: The Family + Friends Perspective | What it’s Like to Watch us Navigate Life with Our Medically-Complex Children w/ Kassie Harbath 1:27:31

5M ago1:27:31

1:27:31

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…

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147: Sex + Disability Parenting | All the Ways It Takes a Hit + Ways to Reclaim It w/ Amanda Griffith-Atkins 55:46

5M ago55:46

55:46

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, …

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146: The Dad Perspective w/ Derek Dizney, Zach Schneider, + Juston Cheney 59:42

6M ago59:42

59:42

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 epile…

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145: Ashley’s Story | Childhood Dementia, An Ended Marriage, + Learning to Live in The Present 42:30

6M ago42:30

42:30

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 diagno…

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144: Season 9 Kickoff | This Season’s Theme, Our Friends + Family fundraiser, & a Sneak Peek of Upcoming Episodes w/ Alyssa Nutile 30:51

6M ago30:51

30:51

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 + Famil…

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When Your Child is Inpatient at Hospital During Holidays or Special Events w/ Amanda Griffith-Atkins [REPLAY] 45:18

8M ago45:18

45:18

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 mig…

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Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins [REPLAY] 43:27

8M ago43:27

43:27

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 p…

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The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins [REPLAY] 1:37:05

8M ago1:37:05

1:37:05

When you have a child with a disability or other medicalcomplexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner. And on top of that, having to manage schedules, specialdiets, gift expectations, and uncomfortable commentary from…

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143: Season 8 Finale | International Listeners, Frantic Behind-the-Scenes Work, and Surprising Popular Episodes w/ Alyssa Nutile 40:04

8M ago40:04

40:04

We’re closing out Season 8, and this time I have Alyssa Nutile with me to celebrate the end of another successful season. The Rare Life went through some major changes this past year (if you remember from the Season 8 Kickoff – we're a nonprofit now!) And that meant we spent a ton of time working behind the scenes on some really exciting projects t…

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142: What If My Disabled Child Outlives Me? w/ Amanda Griffith-Atkins 52:52

8M ago52:52

52:52

What happens if we go first? Who will love our child and protect them the way that we do? Society has a view of how the parent-child trajectory goes, and the situation with our medically complex and rare kids feels so backwards, so where can we turn to find resources to set up our children and keep them safe when we’re gone? In this episode, Amanda…

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141: How Our Faith + Spirituality Can Be Impacted by Our Experiences with Our Medically Complex Children (+ Visa Versa) w/ Ali, Bethany, Melissa, and Rachel 1:14:11

9M ago1:14:11

1:14:11

When you’re the parent of a medically complex or disabled child, the experience touches every aspect of our life – including our faith, often in unique and surprising ways. Today, I’m sharing a vulnerable and tender episode, where I interviewed four different women, each coming to the table with their own different spiritual backgrounds, to share h…

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140: Alyssa’s Story | A Mistaken Brain Surgery, Rebuilding Trust in The Medical System, + A Life-Limiting Prognosis 56:30

9M ago56:30

56:30

There’s this moment in every parent of a rare or medically complex kid’s life, where you suddenly realize that the medical team you’re working with doesn’t know everything and might not know how to make the best medical decision for your child. It’s terrifying... but it also feels a little bit like a rite of passage by now, and you can only hope th…

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139: In-Home Nursing | The Good, the Bad, + the Ugly w/ Caitlin Castro, Nicole Dennis + Brooke Teremi 1:11:46

9M ago1:11:46

1:11:46

As necessary, important, and life-changing as in-home nursing can be, there’s nothing simple about it. While there are a ton of benefits, there are some really tough parts too. It’s an added layer of administration to deal with, extra personalities in your home to handle, more routines to train, and can come with a lack of personal space. And ackno…

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138: Therapy 101 | Barriers Disability Parents Face + How to Receive This Much-Needed Care w/ Liz Spitzer, PhD 55:38

9M ago55:38

55:38

If you’ve been around in the medically complex world for aminute, you’ve surely heard others talk about therapy. But maybe you’re still asking yourself, “have I been through enough to even need it?” Liz Spitzer, PhD and rare mom herself, is here to reassure everyone that we all deserve care, including therapy, no matter how much or how little we’ve…

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137: Life After Child Loss | What is Grief, How Does It Show Up, and What Can We Do About It? w/ Cole Imperi + Leah Deason 59:41

10M ago59:41

59:41

Not all of us have or will experience the loss of a child, but we ALL have to navigate some type of grief and loss in our lives. I know this sounds heavy, but in today’s episode grief expert Cole Imperi and grieving mother Leah Deason and I have a frank buthonestly kind of soothing conversation about the way grief and loss shape our lives, and how …

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136: Bethany’s Story | Trach Life, Calloused to Trauma, + Making Space for Anger 46:59

10M ago46:59

46:59

Having to rely on a medical device for your child’s survival is equal parts frustrating and terrifying. It’s not that we aren’t grateful that the technologies exist to keep our children healthy... but medical devices aren’t fool-proof, and when things go awry, it’s traumatic for everyone involved. In today’s episode, Bethany Beazley shares her expe…

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135: Careers + Family Roles | The Ways They’ve Been Impacted by Disability Parenting + The Resentment We Feel w/ Amanda Griffith-Atkins, LCSW 55:34

10M ago55:34

55:34

Whether you're trying to manage a career and care for a medically complex child, or you've had to suspend your career for the sake of your family, none of us can escape the impact of this rare and medically complex life. In Ep 135 of The Rare Life, Amanda Griffith-Atkins and I share responses from listeners about the ways their careers have been im…

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134: Child Loss 101 | What to Expect, Decisions You Can (and should) Make Now + How to Make The End Of Your Child’s Life As Beautiful As They Are 1:12:01

10M ago1:12:01

1:12:01

Losing a child isn’t something any of us want to think about... However for some of us, we know that we don’t have the luxury of putting off planning the logistics around the end of our child’s life. But where do you even start? In today’s episode, bereaved mother Leah Deason, pediatric hospice nurse Gina Thuene, and Tiffany Goodchild, a mother who…

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133: Bek’s Story | Solo Medical Parenting, 13 Years of Living in Survival Mode + Grieving the Children She Dreamed of Having 54:45

11M ago54:45

54:45

Like many of us, the diagnosis of a genetic disease for herson came as a surprise to Bek. One moment she had a “typical” pregnancy and the next minute, she had a medically complex baby. That was 13 years ago, and since then, Bek’s been navigating how to parent a medically complex child on her own as a single mother. In this episode, she shares with…

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132: When “Self-Care” Gives Us the Swears | the Inaccessibility of Self-Care + How to Redefine It w/ Amanda Griffith-Atkins, LMFT 1:09:10

11M ago1:09:10

1:09:10

Is it just me, or as the parent of a medically complex child, does hearing the word “self-care” in a general context make you roll your eyes? Most of us are just trying to keep our kids and ourselves alive and mostly healthy. We don’t have time for bubble baths or hours at the gym or spatreatments. So what does self-care look like (in the most feas…

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131: Chronic Stress + Our Bodies | Ways Our Physical Health Takes the Hit w/ Amanda Griffith-Atkins, LMFT 56:26

11M ago56:26

56:26

Parenting children with medical complexities and rare diseases is incredibly stressful. This isn’t news to any of us who’ve been living this life for a little while. More surprising are all the ways – and there are SO MANY – that stress can show up and cause issues in our physical bodies. From insomnia and exhaustion to weight and body changes to h…

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130: Fearful of Child Loss | Anticipatory Grief + the Ways it Guts Us w/ Amanda Griffith-Atkins, LMFT 1:12:40

11M ago1:12:40

1:12:40

Every parent fears losing their child. But for most parents, that fear is vague and instinctual more than it is a likely reality. When it comes to parenting medically complex children though, this fear isn’t far-fetched, and it’s not something that lives only in our nightmares. The possibility (or in some cases, the certainty) that we could lose ou…

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129: Maddison’s Story | A Delayed Diagnosis + Painful Comparisons 46:04

12M ago46:04

46:04

Have you ever felt like you just don’t quite fit in this community of medically complex parents, because your life isn’t “hard enough”or your child’s disability or diagnosis isn’t “severe enough?” Maddison has been living within this feeling of imposter syndrome for years now, as she’s navigated the long and winding road to finally receiving her da…

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128: Season 8 Kickoff | a New Theme, Sneak Peeks of Brand-new Episodes + a 9-Month Secret Revealed w/ Brittany Steitz 26:48

12M ago26:48

26:48

We’re kicking off another season (number 8!!), and we’re coming in hot with a super exciting update about The Rare Life. Brittany Steitz joins me as we share about a major update that we’ve been working on for NINE MONTHS now, and it’s truly an honor to share it with all of you. As with each kickoff episode, I’m also sharing a little glimpse into t…

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Health Anxiety w/ Amanda Griffith-Atkins, LMFT (Rebroadcast) 56:02

12M ago56:02

56:02

So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough informatio…

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To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.” (Rebroadcast) 30:30

1y ago30:30

30:30

I am definitely one of them. Hearing other parents of children with disabilities say adages like this one has always made me squirm inside because it’s simply untrue to me. I would have Kimball another way—free from pain and suffering. But I’ve realized a trend—the parents saying this phrase were almost always parents to children with disabilities …

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