The Rare Life

Author: Madeline Cheney

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 dont 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.
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Language: en

Genres: Kids & Family, Parenting

Contact email: Get it

Feed URL: Get it

iTunes ID: Get it

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217: The NICU Experience | The Shock, Fear, and Emotional Rollercoaster of Navigating the Unknown w/ Madeline
Thursday, 12 March, 2026

For many disability parents, medically complex life begins in the NICU. In those early days, everything feels heightened: the machines, the uncertainty, the helplessness of watching doctors care for your tiny baby while you stand nearby unable to help.In this episode, Alyssa and Madeline unpack the NICU experience through stories from the Rare Life community, covering the shock of having your baby taken away after birth, the grief over early parenting moments you miss, and the emotional toll of leaving the hospital without your child. We also explore why the NICU can feel so uniquely overwhelming: when the future is unclear, it becomes incredibly hard to imagine that anything good could be waiting on the other side. And a big thank you to one of our long-time sponsors MOOG Medical.And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!Links:Visit MOOG’s website to see the many ways they support families like ours!Listen to Ep 161: Having a Non-disabled child after their disabled child.Listen to Ep 140: Alyssa’s Story.Listen to Ep 26: The NICU Experience with Madeline.Follow us on Instagram @the_rare_life!Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Donate to the podcast or Contact me about sponsoring an episode.