ONCE UPON A GENE - EPISODE 218

James G Robinson - More Than We Expected Author - Five Years with a Remarkable Child

James Robinson is a dad and the author of More Than We Expected: Five Years With a Remarkable Child, a deeply moving book and a testament to the strength found in vulnerability, the importance of community and the boundless love that families share in the face of adversity. 

EPISODE HIGHLIGHTS

Can you tell us about your family and what inspired your book?

My wife and I have three sons, one who was a twin born with a congenital heart defect called heterotaxy that died at age 5. My book is a memoir, a story of our years together and why it was such a privilege to be Nadav's father.

How did writing your book impact your healing process?

When Nadav died, I felt a tug to write about his life. Right after he died, we took a roadtrip across the US, just to feel the relief of the open road. I first wrote an essay about the trip, Road to Recovery, that was published in The New York Times and a lot of people wrote in to talk about how they had gone through similar experiences. I realized that sharing our story was valuable to others. I started writing on topics we had been through to get things out of my brain— faith, anatomy, food, music. Getting things on paper was a relief, but I also wanted to leave things written on paper for his brothers so they knew what we went through and how I dealt with it. In many ways, the story is about how I found the strength to tell his brothers that he died.

What is your advice for other parents who are in a position of making tough medical decisions for their children?

There's a lot of ambiguity in medicine and that informed much of my decision making because I came to learn to educate myself the best I could, but then ultimately go with my gut. 

How did your family's faith influence decisions you made for Nadav?

Faith was complicated for us, not that we doubted our faith, but our eyes were opened to what faith really is. There is something about faith that brings people together and I think that's the best aspect of faith— the importance of connection and strength in troubling times when and where you may not expect. After a surgery, we learned Nadav wasn't doing well and that he would either stabilize or deteriorate over night. Despite the news, my wife pointed out that it was up to Nadav and that she could live with whatever he decided because she trusted him. That was a statement of faith more profound than I've ever experienced. It wasn't hope, it was faith, and that was powerful for me and the faith that carried me through a lot of times of uncertainty. 

LINKS AND RESOURCES MENTIONED

More Than a Memoir Website

https://morethanamemoir.com/

More Than We Expected: Five Years With a Remarkable Child

https://www.amazon.com/More-Than-We-Expected-Remarkable/dp/1637588224

Road to Recovery

https://www.nytimes.com/2017/12/07/travel/road-trip-family-grief.html

More Than We Expected: A Conversation with Father and Author James Robinson

https://courageousparentsnetwork.org/events/more-than-we-expected-a-conversation-with-father-and-author-james-robinson

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