Shows / The Rare Life
The Rare Life
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…
Episodes
- The Rare Life
Summer Mini #2: 10 Must-Haves for Traveling with Your Medically Complex Child This Summer
If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your…
- The Rare Life
Summer Mini #1: What We Wish We Could Go Back and Tell Ourselves
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…
- The Rare Life
162: Season 9 Finale | A Season of Growth, Listener Thoughts + Summer Mini-Episodes w/ Alyssa Nutile
We’re finally rounding out Season 9, and what a season it’s been. The topic of this season was relationships, and perhaps as expected, the episodes this season…
- The Rare Life
161: Having a Nondisabled Child After Your Disabled Child + Conflicting Feelings That Brings w/ Brianna Alcox
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…
- The Rare Life
160: Ashley Smith’s Story | Sibling Dynamics, Nontraditional Gender Roles, + Not Knowing What to Grieve
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…
- The Rare Life
159: Sharing the Mental Load with Your Partner in Disability Parenting w/ Amanda Griffith-Atkins + Will Atkins
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…
- The Rare Life
158: Serena’s Story | Disability Advocate Turned Disability Parent, a Degenerative Diagnosis, + the Power of Now
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…
- The Rare Life
157: Friendships with People Who Don’t Have Disabled Kids w/ Jillian Arnold
Friendship, especially with those who don’t have disabled children, gets more complicated once you’ve had your own child with disabilities…
- The Rare Life
156: Should I Get a Divorce? Insight + Solidarity from Divorced Medically Complex Parents w/ Amanda Griffith-Atkins
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…
- The Rare Life
155: Aneesa’s Story | A Terminal Diagnosis + Dark Clouds and Silver Linings
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…
- The Rare Life
154: Deaths in the Community | How it Affects Us + Our Relationship with the Parents w/ Rose Watson
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…
- The Rare Life
153: Hurtful Things Loved Ones Say and Do | How it Affects Us + What to Do About It w/ Amanda Griffith-Atkins
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…
- The Rare Life
152: Stephanie’s Story | A Stroke in Utero, Recurring Medical Trauma + No Space To Process It
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…
- The Rare Life
151: Fostering Friendships with Other Disability Parents w/ Kate Livingstone and Kari Harbath
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…
- The Rare Life
150: Siblings | Listening + Learning from Glass Children w/ Megan Schneider
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…
- The Rare Life
Mini Episode: A Sprint to the Finish for Our Family and Friends Fundraiser!
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…
- The Rare Life
149: Annie’s Story | Physician Mom, Infertility, + Comparison Between Twins
Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then…
- The Rare Life
Mini Episode: An Exciting Update for Our Family and Friends Fundraiser!
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…
- The Rare Life
148: The Family + Friends Perspective | What it’s Like to Watch us Navigate Life with Our Medically-Complex Children w/ Kassie Harbath
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…
- The Rare Life
147: Sex + Disability Parenting | All the Ways It Takes a Hit + Ways to Reclaim It w/ Amanda Griffith-Atkins
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!…
- The Rare Life
146: The Dad Perspective w/ Derek Dizney, Zach Schneider, + Juston Cheney
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…
- The Rare Life
145: Ashley’s Story | Childhood Dementia, An Ended Marriage, + Learning to Live in The Present
When Ashley’s daughter Sadie was born, medical complexity took their family by surprise. A hospitalization post-birth eventually led to a life-limiting…
- The Rare Life
144: Season 9 Kickoff | This Season’s Theme, Our Friends + Family fundraiser, & a Sneak Peek of Upcoming Episodes w/ Alyssa Nutile
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…
- The Rare Life
When Your Child is Inpatient at Hospital During Holidays or Special Events w/ Amanda Griffith-Atkins [REPLAY]
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…
- The Rare Life
Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins [REPLAY]
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…
- The Rare Life
The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins [REPLAY]
When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we…
- The Rare Life
143: Season 8 Finale | International Listeners, Frantic Behind-the-Scenes Work, and Surprising Popular Episodes w/ Alyssa Nutile
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…
- The Rare Life
142: What If My Disabled Child Outlives Me? w/ Amanda Griffith-Atkins
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…
- The Rare Life
141: How Our Faith + Spirituality Can Be Impacted by Our Experiences with Our Medically Complex Children (+ Visa Versa) w/ Ali, Bethany, Melissa, and Rachel
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…
- The Rare Life
140: Alyssa’s Story | A Mistaken Brain Surgery, Rebuilding Trust in The Medical System, + A Life-Limiting Prognosis
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…
- The Rare Life
139: In-Home Nursing | The Good, the Bad, + the Ugly w/ Caitlin Castro, Nicole Dennis + Brooke Teremi
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…
- The Rare Life
138: Therapy 101 | Barriers Disability Parents Face + How to Receive This Much-Needed Care w/ Liz Spitzer, PhD
If you’ve been around in the medically complex world for a minute, you’ve surely heard others talk about therapy. But maybe you’re still asking yourself, “have…
- The Rare Life
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
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…
- The Rare Life
136: Bethany’s Story | Trach Life, Calloused to Trauma, + Making Space for Anger
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…
- The Rare Life
135: Careers + Family Roles | The Ways They’ve Been Impacted by Disability Parenting + The Resentment We Feel w/ Amanda Griffith-Atkins, LCSW
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…
- The Rare Life
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
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…
- The Rare Life
133: Bek’s Story | Solo Medical Parenting, 13 Years of Living in Survival Mode + Grieving the Children She Dreamed of Having
Like many of us, the diagnosis of a genetic disease for her son came as a surprise to Bek. One moment she had a “typical” pregnancy and the next minute, she…
- The Rare Life
132: When “Self-Care” Gives Us the Swears | the Inaccessibility of Self-Care + How to Redefine It w/ Amanda Griffith-Atkins, LMFT
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…
- The Rare Life
131: Chronic Stress + Our Bodies | Ways Our Physical Health Takes the Hit w/ Amanda Griffith-Atkins, LMFT
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…
- The Rare Life
130: Fearful of Child Loss | Anticipatory Grief + the Ways it Guts Us w/ Amanda Griffith-Atkins, LMFT
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…
- The Rare Life
129: Maddison’s Story | A Delayed Diagnosis + Painful Comparisons
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…
- The Rare Life
128: Season 8 Kickoff | a New Theme, Sneak Peeks of Brand-new Episodes + a 9-Month Secret Revealed w/ Brittany Steitz
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…
- The Rare Life
Health Anxiety w/ Amanda Griffith-Atkins, LMFT (Rebroadcast)
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…
- The Rare Life
To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.” (Rebroadcast)
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…
- The Rare Life
The Sibling Perspective w/ Katherine Acton (Rebroadcast)
Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside…
- The Rare Life
Should A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT (Rebroadcast)
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…
- The Rare Life
The Parable of the Pain Scale | The Ways Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley (Rebroadcast)
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…
- The Rare Life
The Story of Claire (Rebroadcast)
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…
- The Rare Life
Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests (Rebroadcast)
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…
- The Rare Life
It’s All My Fault (Rebroadcast)
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…
- The Rare Life
Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast)
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…
- The Rare Life
Confessions of a NICU Nurse w/ Sam Keirsey, RN BSN (Rebroadcast)
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…
- The Rare Life
127: Season 7 Finale + 3 Year Anniversary | How This Podcast Has Changed My Life w/ Juston Cheney
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…
- The Rare Life
126: Therapies | When to Scale Back and How to Do So w/ Andrea Loveday-Brown and Larkin O’Leary
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…
- The Rare Life
125: Tips and Tricks for Traveling with Disabled Kids w/ Alyssa Nutile
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…
- The Rare Life
124: Suzy’s Story | Brain Injury, the Exhaustion of Living in Survival Mode, + Wondering If This Is the End
Life as parents of medically complex children is full of extremes: intense love for our children, deep exhaustion from handling their medical care, incredible…
- The Rare Life
123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer (VOICEOVER)
**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…
- The Rare Life
123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer
**This is the original version. A voiceover version is available on this platform. If you have hearing loss or auditory processing difficulties, or are…
- The Rare Life
122: 5 (Surprising) Things Parents Want Special Ed. Professionals to Know w/ Tiffany Goodchild
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…
- The Rare Life
121: When Strangers “Just Ask” + How to Handle That w/ Disabled Author James Catchpole
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…