This is my story about my son with a rare condition.
Episode
Ep. 47: Siblings w/ Katie Taylor, CCLS
Does your medically-complex child have a sibling? Are you contemplating adding one to the picture? In this episode, Katie Taylor, the child life specialist behind the popular podcast Child Life on Call, answers listener-questions.
Question of the Month
How we support siblings
Siblings are along for the ride when it comes to medically-complex and rare parenting. Their experience is different than their peers in a similar way as our experience is different from our peers.
Ep. 46: Confessions of a Special-Needs Mama w/ Anna Brown
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.
Ep. 45: The Story of Emery
Four-year-old Emery has a slew of diagnoses under the umbrella diagnosis of Rubinstein-Taybi syndrome; Almost every one of her systems are impacted and require specialists and therapies.
Ep. 44: Inclusion in the Hearing Loss World
Finding out Kimball was hard of hearing was one of the hardest diagnoses to receive. It was totally unexpected, and we grieved the lifelong implications of it.
Ep. 43: Emotional Safety in Marriage w/ Dr. Matt Townsend
Emotional safety is the security that I can share what is in my heart with my partner. Every relationship needs that, but perhaps none more than in the relationship of special needs parents.
What We Want the World to Know About Medically-Complex Parenting
Medically-complex parenting is parenting in a different world than our peers. It has unique jargon, unique fears, unique challenges. And no one can truly understand it without living it.
Ep. 42: Friendship + Inclusion w/ Effie Parks
When it comes to kids with disabilities, friendships can be a bit more complicated thing to navigate than with the average child. Effie is back from her story episode to talk about the ins and outs of her son Ford’s relationship with the world.
Ep. 41: The Story of Ford
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 to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed.
Ep. 40: Wendy + the Sibling Experience
It felt like Wendy and I were drowning right beside each other in the same stormy water, and I couldn’t save her.
Ep. 39: Inclusive Children’s Books w/ Macy Gilson, Megan DeJarnett, and Jessica Parham
Inclusion: What does it mean to you? If you’re in the same parenting corner I am, it probably means a whole lot.
Ep. 38: Social Media + SN Community w/ Jess Wolff
Social media can benefit many kinds of people, but perhaps none so much as special needs parents. So many of us have feelings of isolation from friends and family as we are thrown into a world they don’t understand.
Ep. 37: The Story of Lily
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 few days later.
Ep. 36: Rare Disease Day 2021, The Parents Perspective
In this special collaborative Rare Disease Day episode, twelve parents come together to share a little about their children with rare conditions.
Ep. 35: Season 3 Kickoff
Season 3 is upon us! I am so excited to share with you the amazing guests and topics we have coming your way!
Our Favorite Self-care Practices
“Self-care”! What a buzz word, right? But it really, truly is critical. Why is it critical? Well, what I’m about to say may surprise you: It’s critical because you are a human freaking being.
Ep. 34: Season 2 Finale
Another amazing season has come and gone! In this episode, we celebrate relatable episodes, listen to the takeaways and thoughts of three parent-listeners, and I share my number one goal for the upcoming year.
Ep. 33: It’s OK to be Angry, w/ Orley Bills, LCSW
The rollercoaster of emotions that comes along with having a medically complex child is an inherent part of the “job”.
Ep. 32: Self-Care w/ Jessica Patay
You matter. You deserve self-care. What’s your self-care like right now?
Ep. 31: The story of Ryan
17-year-old Ryan can eat and eat and never feel full—but more than your average teenage boy. He has Prader-Willi syndrome, a rare genetic disorder that prevents satiety, the sensation of fullness after eating.
Ep. 30: You Are Exactly What Your Child Needs
Our fierce love for our children is our superpower—it’s what makes us just what they need! But love can also be a double-edged sword of joy and agony.
The Traits We’ve Gained Because of our Children
This has definitely been one of my all-time favorite questions—the beautiful and relatable answers I received in return were such an honor to read!
Ep. 29: Resilient Mindset w/ Claudia Taboada
Becoming aware of our thoughts and emotions is the first step in developing a resilient mindset.
Ep. 28: Living with Grief w/ Anna Stanfield
When Lillian died four years ago, Anna’s heart was ripped out. When her son Gilbert was born with severe birth defects three years after, her grief evolved and has in many ways intensified.
Ep. 27: The Story of Gilbert
When Ghillie was born at 25 weeks, Anna and her husband thought their biggest hurdle would be his micro preemie size and lungs.
Ep. 26: The NICU Experience
For many parents, the NICU is an initiation into the medically complex world.
We See You—Words of Encouragement from One Parent to Another
It’s safe to assume most of us have been there—we’ve been overwhelmed and heartbroken by a new diagnosis or perplexing medical/developmental issues with no answers for our child.
Ep. 25: EMDR Trauma Therapy w/ Rosey Schaefermeyer, LCSW
What comes to mind when hear the word “trauma”? For many parents of children with complex medical needs, it’s a very real part of our lives.
Ep. 24: Disability Advocacy w/ Jenny McLelland
This episode is an invitation to all of us to join the army of parents like Jenny in improving policies that directly affect our loved ones and others with disabilities.
Ep. 23: The Story of James
As a former police officer, Jenny was prepared for the extreme stress of living 200 miles away from her baby in the hospital for nine-months...
Ep. 22: It’s All My Fault
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.
Ep. 21: Giving Back w/ Tara Docekal
Joining in a cause to uplift and help others in their struggles can be very healing as Tara Docekal, founder of the non-profit organization Mightiest Mamas, knows well.
The Tools and Toys We Use
I’ve been super excited to compile a list of tried and true tools and toys that we use for our children—or really anything we’ve found helpful!
Ep. 20: Anticipatory Grief w/ Katie
Grieving the loss of a loved one before they’re gone has a name: anticipatory grief.
Ep. 19: The Story of Claire
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.
Ep. 18: Season 2 Kickoff
Season 2 is finally here! I’ve been really looking forward to Season 2 because I have some amazing guests to share and the theme is dynamite.
Ep. 17: Season 1 Finale
Well that’s a wrap! Reminisce about the amazing episodes from Season 1. We’ll listen to the season in the form of short audio clips, and I’ll share feedback about a few episodes from Season 1 from unexpected (but amazing!) audience members.
Ep. 16: Strategies to Support Selective Eaters w/ Kimberly Hirte, SLP
From food play to food chaining, there are many practical strategies in this episode, as explained by speech language pathologist Kimberly Hirte.
Ep. 15: Communicating w/ a Nonverbal Child
Ever feel totally overwhelmed communicating with a non-verbal child? Parents Candace and Shawn have been there.
Ep. 14: The Story of Miller
Miller is “joy personified”, very social, and loving. But that isn’t to say there aren’t major challenges that come along with having a child with Angelman Syndrome. Their number one challenge is Miller’s non-verbalism.
Therapy Hacks
It’s easy to smile and nod when our children’s therapists tell us what to work on each day between scheduled visits. But then life happens and actually doing what they assign can be quite the feat.
Ep. 13: Feeding Tube Adventures
“Tubie”: Do you know what it means? Before Kimball came along, I hadn’t a clue what the term meant (a word among many I learned courtesy of my medically complex parent status).
Ep. 12: 3 Fun Ways to Facilitate Language Development w/ Hearing Specialist Angie
Learn why these three everyday activities help children develop language and discover fun tips to tweak them in order to enrich your child’s access to language even more.
Ep. 11: Embracing Your Therapy and Medical Tribe w/ Kari Harbath
Do you totally love your child’s intervention tribe? Or do you see room for improvement in that department?
Appointment Day Hacks
Appointment days can be super emotionally charged days—If you know, you know.
Ep. 10: The Story of Sloan
Mom Kari gives us a glimpse into the world of her daughter Sloan who is profoundly deaf-blind and is tough as nails.
Ep. 9: 3 Ways to Take Charge of Your Therapy and Medical Team
Take your rightful place at the head of your child’s care team and watch everyone benefit from it.
Ep. 8: Advocating Using the FIG Method w/ Dr. Saperstein
FIG is an acronym to guide advocacy for your child. They are the three considerations you should take when advocating for your child, according to audiologist Dr. Lilach Saperstein.
Ep. 7: Educating Others About Your Child’s Differences w/ Emily Young
Emily’s mission is to help the others see past her daughter Nora’s differences and treat her like anyone else; and she has had plenty of experience doing so.
Ep. 6: The Story of Nora
Nora is unstoppable. Her determined and ambitious spirit is housed in a body affected by the most common form of dwarfism, achondroplasia.
Ep. 5: A List of Diagnoses
Any diagnosis received for your child can be completely overwhelming and heartbreaking. In this solo episode, Madeline shares her experience learning about each birth defect her son has because of his rare genetic syndrome.
Ep. 4: You Are Not Your Child’s Therapist w/ Developmental Specialist Lisa Rawley
Do you ever feel like you’re just not enough? As special needs parents, I’m pretty sure we all have at some point.
Ep. 3: Quality of Life w/ Alyssa
Quality of life can be a complex issue, but also really, very simple: Is your child happy? Do they experience joy? Are they loved?
Ep. 2: The Story of William
Alyssa was told her son William would die shortly after birth. He is now 4 years old, and Alyssa shares her incredible birth story, her deep connection with him despite his inability to speak, and the transformation Alyssa has experienced because of William.
Ep. 1: Season 1 Kick-Off
Get an overview of how the first season will all go down. Whet your appetite with extended clips from Season 1 and get a better explanation of the theme.
Preface: Kimball’s Origin Story and a Little More About TRL
A devastating ultrasound, a misdiagnosis of down syndrome, an incredible birth, and a whole lot of complicated feelings make up Madeline’s entrance into the special needs world.
Trailer: Sneak Peek into The Rare Life
New to The Rare Life? Start here to find out what types of episodes are featured in the show, and enjoy a few audio clips from Season 1.
Keep a stack available so you always have one on hand to grab, fill out, and go!
Co-created, with love, by Madeline Cheney and Alyssa Reidhead, RN.
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