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105: What It's Really Like Raising a Child With a Rare Diagnosis

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Manage episode 513799870 series 3624398
Content provided by Brian Mayer & Heather Mayer, Brian Mayer, and Heather Mayer. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Brian Mayer & Heather Mayer, Brian Mayer, and Heather Mayer or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://player.fm/legal.

pisode Summary

When your child has a complex medical diagnosis, their entire life—and your family’s—revolves around their care. But what happens when they grow up and leave the nest? In this special episode, we're joined by our friends, Ron and Kim, who share their deeply personal journey with their son, Noah, who has a rare genetic disorder. This is a story of faith, perseverance, and learning to find joy in the midst of uncertainty.

In this episode, you’ll learn about:

  • The Overwhelming Diagnosis: How to emotionally and spiritually process the news of a complex medical condition, and why seeking help is so important.

  • The Power of Advocacy: Why parents must become the chief advocates for their child’s care, especially when navigating a fragmented healthcare system.

  • Parenting Other Children: How to make sure siblings of a medically complex child feel seen, loved, and just as special.

  • Reframing Your Journey: How to find gratitude in the small victories, learn to trust God's plan, and recognize His presence in every step.

  continue reading

105 episodes

Artwork
iconShare
 
Manage episode 513799870 series 3624398
Content provided by Brian Mayer & Heather Mayer, Brian Mayer, and Heather Mayer. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Brian Mayer & Heather Mayer, Brian Mayer, and Heather Mayer or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://player.fm/legal.

pisode Summary

When your child has a complex medical diagnosis, their entire life—and your family’s—revolves around their care. But what happens when they grow up and leave the nest? In this special episode, we're joined by our friends, Ron and Kim, who share their deeply personal journey with their son, Noah, who has a rare genetic disorder. This is a story of faith, perseverance, and learning to find joy in the midst of uncertainty.

In this episode, you’ll learn about:

  • The Overwhelming Diagnosis: How to emotionally and spiritually process the news of a complex medical condition, and why seeking help is so important.

  • The Power of Advocacy: Why parents must become the chief advocates for their child’s care, especially when navigating a fragmented healthcare system.

  • Parenting Other Children: How to make sure siblings of a medically complex child feel seen, loved, and just as special.

  • Reframing Your Journey: How to find gratitude in the small victories, learn to trust God's plan, and recognize His presence in every step.

  continue reading

105 episodes

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