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
120: Alexis’ Story | Epilepsy, Holland, + Suicidal Ideation
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…
- The Rare Life
119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD
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…
- The Rare Life
118: Medical Organization Hacks | Supplies + Info + Appointment Scheduling
When it comes to caring for children with rare disease or medical complexities, I never expected that keeping all our supplies organized, our appointments…
- The Rare Life
117: Trauma-versaries + Other Triggers to Our Medical Trauma w/ Hailey Adkisson and Madhura Katre
Traumaversaries... those terrible anniversaries of traumatic events. As parents of medically complex of disabled children, we all have them, often linked to…
- The Rare Life
116: Kinda Obsessed | Celebrating Our Relationships with Our Children With Rare Conditions w/ 24 Parent-Contributors
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…
- The Rare Life
115: Melanie Dimmitt’s Story | a Diagnosis Delivered in Bite Sizes + How It Started Vs. How It’s Going
Today, we have a very special guest, Melanie Dimmitt. Melanie’s son Arlo has cerebral palsy, which isn’t a rare disease, but so many listeners reached out to…
- The Rare Life
114: Grieving Our Children’s Intellectual Disabilities + Facing Our Internalized Ableism w/ Marci Dunning
Society’s values are slowly shifting away from a focus on physical beauty toward intellect instead. We’re taught that academic and intellectual achievement is…
- The Rare Life
113: Blenderized Diets for Tubies | The Life-changing Health Benefits and How to Get Started w/ Cassie Krings and Hilarie Dreyer, RD
For years, Cassie and her tube-fed daughter Eloise tried to accept that vomiting, pain, and hospitalization was just part of tubie life. After all, that’s what…
- The Rare Life
112: Abby’s Story | Skeletal Dysplasia, a Prenatal Diagnosis with Grim Hopes of Survival, + Ditching the Bubble Wrap
For the first part of Abby’s pregnancy with her son Jackson, everything was perfectly uneventful. But at her twenty-week ultrasound, her medical team…
- The Rare Life
111: Season 7 Kickoff
We’re back for another season, and we’re focusing on disabilities and medical complexities again! We’ll cover managing symptoms, helpful organization hacks…
- The Rare Life
110: When Your Child is Inpatient at the Hospital During Holidays w/ Amanda Griffith-Atkins
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…
- The Rare Life
109: Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins
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
108: The Holidays + The Ways They Can be Tough for Disability Parents w/ Amanda Griffith-Atkins
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
107: Season 6 Finale episode w/ Brittany
Brittany Steitz is back for the Season 6 finale! For the first time ever, every episode in this season was sponsored, which meant that we were able to grow our…
- The Rare Life
106: Respecting and Honoring Our Nonspeaking Children w/ Brianna Christian
I think most of us have a vision of what our relationship with our children might look like when we first step into parenthood. We know what we want our kids…
- The Rare Life
105: Brianna’s Story | Regression, Finding Purpose, and a Nurse-Turned-Medical-Mom
After struggling with fertility issues for years, Brianna was overjoyed to finally be pregnant, carry the pregnancy to term, and bring home her sweet baby…
- The Rare Life
104: Tangible Ways to Support Parents of Disabled Children | A Message for Our Loved Ones
Having a child with a disability or rare disease can be a lonely experience, often in ways that parents never anticipated. Their lives have changed…
- The Rare Life
103: Instilling Body Image Resilience in Children with Disabilities w/ Dr. Lexie Kite
Like so many of you, I worry about how to teach my son with disabilities to fully love and embrace all of himself—including and especially his disabilities…
- The Rare Life
102: Becoming a Single Medical Mom w/ Tiffany Pasillas
When Tiffany’s husband filed for divorce, she was 32 weeks pregnant with their daughter Aiyana they weren’t sure would survive to birth because of her…
- The Rare Life
101: Tiffany’s Story | T18/Edward Syndrome + Advocating for Her Daughter’s Right to Live
When Tiffany was told her unborn daughter was “incompatible with life” because of her trisomy 18/Edward Syndrome diagnosis, she was immediately pressured to…
- The Rare Life
100: Raising Awareness | Disabled People (and Their Parents) Do Not Owe Society Anything
So often, we feel that as parents, we need to be raising awareness about issues relating to disability. Maybe we’re sharing our lives on social media in an…
- The Rare Life
99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests
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
98: Siblings | Ways We Can Protect Our Glass Children w/ Melissa Schlemmer
Siblings of disabled children are often referred to as “glass children.” Glass because people tend to look right through them and focus on the sibling with…
- The Rare Life
97: Melissa Schlemmer’s Story | A Rare Disorder Affecting the Brain + Radical Acceptance
When Melissa knew something was up with her infant-son Christopher nine years ago, she reassured herself that as long as his brain was ok, they would be ok…
- The Rare Life
96: “All We Want Is a Healthy Baby” | How This Feels to Parents of Unhealthy Babies
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…
- The Rare Life
95: The Parable of the Pain Scale | How Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley
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
94: Family + Friends | How to Stay Close When You Feel Worlds Apart w/ Chelsea Denham
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…
- The Rare Life
93: Chelsea’s Story | Airway Issues, a Dirty Baby, and Making Scary Medical Decisions
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…
- The Rare Life
92: Season 6 Kickoff
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…
The Rare LifeJess’ Story | A Twinless Twin and Something to Prove (Rebroadcast)
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…
- The Rare Life
The NICU Experience | An Initiation into Medically-Complex Parenting (rebroadcast)
For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and…
- The Rare Life
Effie’s Story | Siblings, Italy, and a Next-Level Laugh (rebroadcast)
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…
- The Rare Life
What Your Child’s Doctors Want You to Know, But Don’t Tell You w/ Dr. Dominic Moore, MD (Rebroadcast)
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…
- The Rare Life
Confessions of a Medical Mama w/ Anna Brown (Rebroadcast)
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…
- The Rare Life
Medical Equipment| The Ultimate Hate/Love Relationship + How to Vacation With It All w/ Falesha Johnson (Rebroadcast)
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…
- 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
It’s OK to be Angry w/ Orley Bills, LCSW (Rebroadcast)
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…
- The Rare Life
When Your Mommy-Gut Is Alarming and The Doctors Won’t Listen w/ Tameka Diaz (Rebroadcast)
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…
- The Rare Life
91: Season 5 Finale w/ Special Guest Brittany Steitz
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…
- The Rare Life
90: Living with Sleep Deprivation w/ Jill Arneson
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
89: Gaslit by Others and Ourselves
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…
- The Rare Life
88: Numbing Out When Things Are Tough w/ Anna Smyth, MS, RYT
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…
- The Rare Life
87: Depression, Anxiety, + PTSD in Medically-Complex Parenting w/ Karley Henderson
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…
- The Rare Life
86: Karley’s Story | Two Rare Syndromes, Playing the What-If Game, and Appointments on The Daily
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…
- The Rare Life
85: Should A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT
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
84: Grieving Our Child’s Medical Complexity w/ Carrie M. Holt
Grief is something that most parents of disabled/medically complex children experience. And as Carrie shares in this episode, it never goes away. Instead, it…
- The Rare Life
83: An Evolution of Faith w/ Kimberly Arnold, Part 2
Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare…
- The Rare Life
83: An Evolution of Faith w/ Kim Arnold, Part 1
Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare…
- The Rare Life
82: Kim's Story | Hard-Earned Awe, Mothering a Glass Doll, and a Brand-New Marriage Put to the Test
When Kim’s picture-perfect pregnancy ended with a textbook delivery, she had no reason to expect that her newborn daughter would have a broken arm. After…
- The Rare Life
81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT
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
80: Celebrating Our Children + Our Growth w/ Lexie Emory, Roya Malaekeh, Analy Navarro, Heather Cox, and Rayel Lockhart
In this special Rare Disease Day episode, five parents share ways they have been changed by the rare disease journey, as experienced from the…
- The Rare Life
79: Debilitating Guilt + the ‘You Break It, You Fix It’ Mentality w/ Wendy Hair
When her son was young, Wendy grappled with the crushing feeling that she somehow caused her son’s disabilities and delays. The weight of that guilt and shame…
- The Rare Life
78: Wendy’s Story
When Ammon was born, Wendy immediately knew something was different about him. He was baby no. 6, and her internal alarms were sounding. As he grew, more and…
- The Rare Life
77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.”
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
76: Medical Mom Soul-Searching w/ Moira Cleary, CPC
As caregivers, our needs often get pushed to the side. Self-care can seem impossible. Which is why I love the simple act of recognizing our top four values…
- The Rare Life
75: My Journey as an Adoptive and Foster Medical-Mama w/ Sarah Yates
Over the two years Sarah and her husband Steve have been foster and adoptive parents, they have had to face intense feelings towards those who have harmed…
- The Rare Life
74: Sarah’s Story
When Sarah was assigned to care for baby Zariah in the NICU, she fell in love with her. When Zariah’s birth parents neglected to visit or be involved, it was…
- The Rare Life
73: Season 5 Kickoff
It is SO good to be back! After an extra long break between seasons, I’m here with a brand-new season of episodes all centered around our personal journey as…
- The Rare Life
Announcement and Recommended Episode #7
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch…
- The Rare Life
Announcement and Recommended Episode #6
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch…