September  2015:

Seems fitting, if not obvious, for the first official “update” to formally announce the release of Feel Me Brave and the creation of its website! Both of which have been a family affair. For the website, I was lucky to tap into the skills and dedication of my sister Natasha Horak, whose patience and ease with technology far exceed mine.  Natasha is also the creative mind and hand behind the book’s cover.

As for the book itself, I have come to see it a bit like a piece of music. Ryland, of course, is the conductor, the inspiration at the heart of the work. The name, Feel Me Brave, is also a direct quote of his. The content itself is comprised of my journaling and other pieces of prose writing, my father’s poetry and illustrations, as well as some reflections on the book, notably Dr. Ira Byock’s foreword.

While my son’s struggle with an incurable disease was the impetus for both our writings, my dad and I wrote independently of each other throughout the course of his illness and in the aftermath of his death. We both wrote when we needed to, paused when we needed to, and ultimately shared a very similar experience: writing provided a vital means of processing and coping with this most painful and pivotal chapter in our lives. And when we chose to share what we wrote, it also provided a means of connecting deeply with other people.

A beautiful bit of evolution happened later when we stepped back and looked at the writing as a whole and observed a natural interplay between mine and my dad’s, in the themes and in the telling of Ryland’s story. The two seemed to work “in concert”, to form a special harmony and cadence together, and the orchestration of the book grew from there.

As meaningful as this “music” was, I initially felt daunted by the process: how does one go about making a book? And I admit to some deeper reluctance: who would want to read this? Yes, my inner circle of loved ones had been incredibly supportive and encouraging, but they were emotionally invested to begin with. What place did this story have beyond that? For me, the tipping point came when a friend used some of my writing in a class on palliative care and described its impact: how it made the material come to life, how it prompted emotion and discussion, and how it ultimately deepened the learning. Such is the power of telling our real life stories with one another. I needed no more convincing in terms of how a book could be of service in ways that were deeply fulfilling to me. 

The convincing was probably fairly easy because I knew in my gut that there was this connection between our most intimate and personal experiences and those themes that are in fact universally human: loss, heartbreak, despair, the struggle to find meaning. I also felt strongly about the power of language, how finding just one word or phrase that resonates can give you that profound feeling of: “Yes, that is what it’s like, and I’m not the only one mired in all of this.” I have surely been a beneficiary of this phenomenon throughout my own grieving. 

And so with a sense purpose and conviction, my dad and I set out on the creative and technical task of making the book itself. Authenticity was paramount, so we clarified early on that retaining editorial control would be important. We had the good fortune of connecting with Sonja Hakala of Full Circle Press who provided just the kind of superb guidance that we needed; we remain so grateful to her for her role in the book’s formation.

And here we are, many months later, days away from the 4-year anniversary of Ryland’s most fateful diagnosis, in the heart of September, which happens to be Pediatric Cancer Awareness Month. The timing feels right for the birth of this book, our love song to a beautiful boy named Ryland.