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The Rare Life

The Rare Life


The Rare Life

ratings:
Length:
195 episodes
Language:
English
Format:
Podcast

Description

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 family living with disabilities.
Language:
English
Format:
Podcast

Episodes1 - 10 of 195 episodes

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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 c...

63 minutes
May 09, 2024

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...

52 minutes
May 02, 2024

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 disabil...

54 minutes
Apr 25, 2024

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 complicat...

72 minutes
Apr 18, 2024

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 t...

69 minutes
Apr 11, 2024

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...

46 minutes
Apr 04, 2024

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 enoug...

49 minutes
Mar 28, 2024

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 c...

75 minutes
Mar 21, 2024

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 ...

38 minutes
Mar 14, 2024

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 do...

52 minutes
Mar 07, 2024