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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Nov 29, 2023

 In this episode, our guest James Robinson will share the keys to living life to its fullest, both inside and outside of the hospital, so that you can provide the result of bringing joy and happiness to your child's life, despite their medical condition. 

James Robinson, the author of the book "More Than We Expected: 5 Years with A Remarkable Son."  On today's episode, he shares his personal experience as a parent of a child with a congenital heart defect.


Living in Brooklyn, New York, James and his wife have three children, one of whom was born with a serious congenital heart defect. They navigated their way through multiple surgeries and hospital stays, learning valuable lessons along the way. James's story highlights the importance of holistic care and the impact of medical professionals, from doctors to Child Life Specialists, in providing support to families. James and his family found strength and created meaningful experiences for their child. 

It was a privilege to be his father. We learned a lot through our journey about what it means to live when you have a medical condition. - James Robinson

In this episode, you will be able to:

  • Discover the transformative power of parenthood and how it can bring joy and strength in the face of medical challenges.

  • Explore the importance of transparency in navigating the realities of your child's medical condition, and how open communication can benefit both you and your child.

  • Learn how child life specialists in hospitals can provide support and create meaningful experiences for your child during their medical journey.

  • Find inspiration in stories of resilience and the power of support from other parents who have faced difficult times with their children's medical conditions.

  • Discover practical strategies for balancing fear and living a fulfilling life, while still prioritizing your child's health and well-being.

 Connect with James

Learn more about James' book here. 

Link to purchase "More than we Expected"

To  request bookplates and oregano seeds:
Social media:
Instagram: MoreThanAMemoir
X/Twitter: MoreThanAMemoir
All best

The key moments in this episode are:

00:00:00 - Introduction

00:00:40 - Purpose of the Podcast

00:02:07 - Story of James' Son

00:05:15 - Balancing Fatherhood and Medical Care

00:07:01 - Trip to Australia and Medical Emergency

00:09:18 - Differences in Medical Practices

00:10:04 - Heart Beads

00:13:11 - The Miracle of the Body Formation

00:14:00 - Trusting the Body's Processes

00:15:47 - Accepting Things Beyond Control

00:16:22 - Challenges of Living in Another Country for Medical Treatment

00:19:26 - The Healing Power of Nature

00:25:34 - The Impact of Therapists

00:26:01 - Exploring the Hospital

00:27:09 - Going Outdoors

00:28:19 - Unexpected Kitchen Visit

00:31:30 - Balancing Fear and Living

00:37:34 - The Purpose of Writing the Book

00:38:01 - The Importance of Child Life

00:38:48 - Parenthood and Self-Discovery

00:40:53 - Availability of the Book

00:42:31 - Conclusion and Resource


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When you download our starter kit, you’ll learn how to:

  • Give medicine to your child without it becoming a wrestling match

  • Prepare your child (and yourself) for a shot so they can feel less anxious

  • Create and use a coping plan for any medical appointment or procedure

The first sign of sniffles, or worse, shouldn’t send you into a tailspin. Feel confident in your role as a parent and advocate, no matter what medical situation you’re facing.

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