Podcast

Ep. 24: Disability Advocacy at a State-Level 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.

Podcast

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.

Question of the Month

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!

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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.

Question of the Month

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.

Podcast

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?

Question of the Month

Appointment Day Hacks

Appointment days can be super emotionally charged days—If you know, you know.

Podcast

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.

Podcast

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.