Friday 12 October 2018

Finding Our Way Home A Family's Story of Life, Love, and Loss - J. Damon Dagnone

Finding Our Way Home: 
A family's story of life, love, and loss
J. Damon Dagnone
ISBN 9781723876165

This book was recommended on Facebook by a friend. I am very thankful it was, because I likely would not have stumbled across it otherwise. This book is not an easy read. Following this couple, this family as they journey through illness, loss and recovery is not a trip for the tepid. But for those willing to pick up the book. Damon does an incredible job or presenting their 12 year journey. He doesn’t seem to pull any punches. He is open, venerable, and at times the emotions are still very raw.

As a parent of a child with a medical condition reading this book stirs some of the worst-case scenarios. And as a fellow parent I cannot imaging this journey. But what is incredible is that you hear about so many couples that do not make it through a serious illness and death of a child. What Damon does in this book is give us a story of hope. Through their pain, their suffering, their continued process, and processing of this they give other parents hope. I would not want to be reading this book while going through critical care with a child. But am very thankful to have read it.

Damon chronicles the 12 years more as an autobiography. The book begins with these words:

“In the spring of 2006, I had just celebrated my thirty-third birthday and life was pretty great. The flowers and trees were blooming, the kids were outside playing with their friends, my residency in Emergency Medicine was nearing completion, and we were off to Disney World for our first family vacation. It was apparent to my wife Trisha and me that we had everything we could ever want. Our boys – four-year-old Thai and two-year-old Callum – were our pride and joy.

To say our vacation was the trip of a lifetime would be an understatement. The kids had such a good time just getting there – riding in the shuttle bus, going up and down the airport escalators, flying on the plane, then taking the tramway train and the express bus to Disney World – that once we reached the gates and they saw the giant images of Mickey and Minnie Mouse, Callum said, “Daddy, is it time to go home now? I’ve had so much fun!”

We had a perfect week seeing all the Disney characters and visiting the pavilions, riding the spinning teacups, buying overpriced balloons, eating popsicles and ice cream, and swimming in the endless number of pools at our hotel. Our trip was truly magical, except for the three occasions when Callum vomited for no apparent reason. The first time was in a restaurant in the Magic Kingdom, before dinner. The second was a few days later, right after we met Mary Poppins and Cinderella at breakfast. The third was at the end of our trip, in the Toronto airport. After the third episode Trisha and I were scared, Trisha even more than me as mothers generally have the best instincts when something is wrong with their child.”

They returned home, and the joy of that vacation quickly turned into every parent’s nightmare. Callum had been diagnosed with cancer, a brain tumor. And that is the start of the 12 years covered in this volume. The years of medical tests, treatments, surgery. Of trips back and forth between home, hospital in Kingston, and Sick Kids in Toronto.

It is also the story of life after the loss. Of returning to work or decided what to do in the future. Of first, second third even 9th anniversaries of the events that changed their life forever. Damon shares about some turning points. He has three realizations that helped him turn the corner:

“More months passed, and after a lot of personal reflection, I came to three realizations. The first was that shit happens. I asked myself, When things don’t go your way, how are you going to deal with it? Who do you want to be? How do you want to define yourself? The only way forward was positivity. Negativity would take me, and us, backwards. I decided it was time to accept defeat.

My second realization was that I loved who Trisha and I were. I loved our awesome children and our relationship with each other. In many respects, I had precisely the life I wanted. Despite losing Callum, Trisha and I had managed to find our way down the road, and I was proud of how far we’d come.
We’d always supported each other and worked towards being the best versions of ourselves, imperfect of course, but continually striving. I decided to cut myself some slack and be prouder of what we’d accomplished so far.

The third and last realization was definitely the most important one. I realized that I did have the ability to feel happier than I thought. The last year had proven this to me, especially during Trisha’s short pregnancy, when I’d been extremely happy. Maybe I could never have the pure depth of feeling I’d known before Callum’s illness, but I could achieve a lot more than I’d given myself credit for. Despite the disappointments and heartache, I had a renewed sense of hope and confidence. I’d felt happy and content for long enough this time that I knew we would continue to move forward.”

I am not prone to tears. But this book brought them to my eyes, more than once. I did not know Damon, but I was in school with his older brother. Many of the places they mention in Kingston I am familiar with. But I am so thankful to have read this book. In university I did two different courses on literature around death and grief. One focused on children’s literature, and the other was more general. This book would be a great addition to the curriculum of the latter, and the list of the family’s favorite books at the end could be a source for optional readings for the Children’s course. There are few books I read that I think everyone would benefit from reading, some because of political or religious views, some because of where people are at in life. This is a book I believe every adult would benefit from reading. For those who have gone through a loss, it might serve as a mirror. For others it will serve as a guide for how to help and support, and hopefully how not to help or try and support. I know a few physicians I have encountered at McMaster Children’s hospital who would benefit from reading it also. As such I think it would be a great addition to curriculum on patient care.

I strongly encourage you to pick up this book and give it a read, it will not only be of personal benefit but of benefit to friends and family you know. And thank you Damon for being so vulnerable and transparent in sharing your story!

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