Confessions of a Rare Disease Mama

Talking about all the things with The Rare Life's Madeline Cheney


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This week I sit down with founder and host of The Rare Life, Madeline Cheney. She started her podcast in 2020, but the seed was planted 3 years prior—when doctors found troubling results at her 20-week ultrasound that pointed to a rare syndrome during her pregnancy with her second child. She and her husband Juston have two beautiful children, their 7-year-old daughter Wendy, and their now 5-year-old son Kimball. I have been a long time fan of the Rare Life, so I was so excited to talk with Madeline and learn more about her and her family's unique journey. We talk about ALL the things including what is was like during her pregnancy knowing her son had a rare condition, our not so great first encounters with Palliative Care, the family dynamics between a disabled and non disabled siblings, family planning/IVF, and so much more. We also touch on a few of my favorite episodes of The Rare Life which are linked below for you all to check out! Happy listening, ya'll!

https://therarelife.org/
https://www.instagram.com/the_rare_life/?hl=en
https://www.facebook.com/p/The-Rare-Life-Podcast-100039719031110/

Episode 130: Fearful of Child Loss/Anticipatory Grief
Ep. 95: The Parable of the Pain Scale
Ep. 99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins
Ep. 19: The Story of Claire





Resources & Links for this episode:

  • Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
  • Learn more about our brave warriors: saveromanandstella.com
  • Support our family: GoFundMe
  • Follow us!
    • Instagram: @confessionsofararediseasemama
    • TikTok: @rare_mama
    • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
  • Get your FREE Positive Affirmations for the Medical Parent PDF here!
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Confessions of a Rare Disease MamaBy Jillian Arnold

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