The Rare Life

186: Leah’s Story | Faith, Nurturing Sibling Relationships, + NICU Boxes


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When Leah Crum gave birth to her daughter Camilla, she had no idea she was about to be launched into a world of medical unknowns, an undiagnosed rare condition, and 118 days in the NICU.

In this episode, Leah talks about the emotional whiplash of life in the NICU, the slow heartbreak of delayed diagnoses, and the grief that comes with being told your child may not live to adulthood.

We also talk about what it means to create an inclusive family, not just for Camilla, but for her neurotypical little sister, Paisley. From rude comments at the grocery store to intentionally planning joy-filled days, Leah opens up about what’s changed in her parenting, her worldview, and her faith.

This episode is about curveballs, sibling dynamics, and sometimes, saying “ew” to rude strangers. It’s a funny, real, and tender one.

And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!

Links:

If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical  Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact.

Fill out our contact form to join upcoming discussion groups!

Follow Leah at @leahcrum_!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

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The Rare LifeBy Madeline Cheney

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