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
Link to purchase "More than we Expected"
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
Parents, download our free parent starter kit.
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.
Child life specialists, get affordable PDUs on-demand here.
Shop for your CLOC gear here.