Podcast Episodes

Podcast

Ep. 68: Dipping My Toes into Educational Advocacy

As a total greenie in the IEP/504/educational advocacy realm, I was a bit surprised at the emotions that kept pounding in my heart.

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Ep. 67: What Your Child’s Doctors Want You to Know, But Don’t Tell You w/ Dr. Dominic Moore, MD

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.

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Ep. 66: Machine Dependency w/ Falesha Johnson

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 resents it.

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Ep. 65: The Story of Cali

When Falesha was 37-weeks pregnant, her doctor found a few concerning birth defects in Cali that pointed to a rare syndrome called Pfeiffer Syndrome. From there, it was a flurry of preparation for her arrival.

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Ep. 64: Improvement-triggered Grief

When your child’s development or health take a turn for the worse, its totally logical for the parents to struggle.

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Ep. 63: Medical Bills and Expenses w/ Gina Pola-Money

Figuring out financial assistance and insurance was one of the most difficult things Gina faced after she was widowed with two young medically-complex sons.

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Ep. 62: Hospitalizations w/ Erica Ryan

Erica and Shaun learned quickly what works well during hospitalizations and what doesn’t during the 526 days they spent inpatient with their son Westly.

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Ep. 61: The Story of Westley

Westley was born with a rare case of Down syndrome—he was part of the 1% that faced several severe medical complications.

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Ep. 60: Blindness

Kimball’s confirmed blindness was one of the most torturous diagnoses to receive. And yet, I knew. I had known for months that he couldn’t see us.

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Ep. 59: Educational Advocacy + IEPs w/ Catherine Whitcher, M.Ed

There are many challenging things about parenting a child with a disability. And among them, IEP meetings are one of the most daunting—they’re full of legal jargon and confusing processes.

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Ep. 58: Medical Advocacy w/ Tameka Diaz

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!

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Ep. 57: The Story of Evely

Evely was born without eyes, a rare condition called anophthalmia. When Tameka and her husband brought Evely home from the hospital, they thought blindness would be their one hurdle to navigate.

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Ep. 56: Season 4 Kickoff

This season’s theme takes a little more explaining than the first three—but long story short, we’re cycling back through themes, starting with season 1’s theme!

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Ep. 55: Season 3 Finale

It’s time to celebrate another fantastic season of fantastic episodes!

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Ep. 54: Disabled Adult Perspective w/Erica Stearns

Erica has been on both sides of the road—she grew up with medical complexities and now mothers two children with medical complexities.

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Ep. 53: Diagnosis Jealousy w/ Kara Ryska

Have you ever seen another child and thought, “Man. If only my child had that diagnosis. Things would be so much easier because…”? We have too.

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Ep. 52: The Story of Levi

When Levi was only two years old, a brain tumor was discovered. His parents brought him into the hospital for testing after he was inexplicably sick for several weeks.

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Ep. 51: Isolation vs. Connection

It’s hard to put a finger on what has been the hardest part of Kimball’s medical journey. Watching him suffer will likely remain number one on that list forever.

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Ep. 50: The Sibling Perspective w/ Katherine Acton

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 jokes, a whole lot of love, and a bit of resentment.

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Ep. 49: The Story of Anna

Have you ever felt inadequate to mother your child because of their diagnosis? In this episode, Katherine shares what it was like to find out her daughter Anna had achondroplasia—the most common form of dwarfism—during a 32-week ultrasound.

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Ep. 48: Lifting the Curtain

In celebration of the first birthday of The Rare Life podcast, I share some behind-the-scenes in the creation of the show.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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!

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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.

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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”.

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Ep. 32: Self-Care w/ Jessica Patay

You matter. You deserve self-care. What’s your self-care like right now?

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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.

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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.

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Ep. 29: Resilient Mindset w/ Claudia Taboada

Becoming aware of our thoughts and emotions is the first step in developing a resilient mindset.

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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.

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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.

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Ep. 26: The NICU Experience

For many parents, the NICU is an initiation into the medically complex world.

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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.

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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.

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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...

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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.

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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.

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Ep. 20: Anticipatory Grief w/ Katie

Grieving the loss of a loved one before they’re gone has a name: anticipatory grief.

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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.

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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.

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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.

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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.

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Ep. 15: Communicating w/ a Nonverbal Child

Ever feel totally overwhelmed communicating with a non-verbal child? Parents Candace and Shawn have been there.

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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.

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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).

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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. 

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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?

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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?

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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.

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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.

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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.

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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.