April 2017:

I look back on last year with great appreciation for the opportunities to share our story with so many beautiful human beings, from those we've known well to those we've had the privilege to meet along the way.  While our own experience of heartache is so personal, we all "ply common ground" as my father says, and connecting with others around vulnerable, deeply human matters has been truly profound.

Thank you to Buttonwood Books, Partner's Village Store, the Dedee Shattuck Gallery, the North Chapel in Woodstock, and the Norman Williams Public Library for offering such loving spaces and audiences.  Thank you to Columbia University Medical Center, in particular Dr. Azra Raza and Dr. Craig Blinderman, for the honor of speaking at the Hospice and Palliative Medicine Grand Rounds back in September 2016.  And thank you to Dartmouth Hitchcock Medical Center, particularly Kris Bowen, Robin Osborne, and Karen Schabot, for partnering with me for the Schwartz Rounds back in November 2016.  

Of course, thank you to Ryland, my guiding light.


July 2016:

Time marches on, as it does so well.  We began the summer, again, with a birthday for an absent boy…and all those feelings of longing and wonder about who he would be at 7, alongside the enduring feeling that in life Ryland had such an old soul that we somehow did know him completely through the ages.  Such an acute absence and presence he continues to have….

Our book continues to provide a vehicle for presence, and my dad and I are looking forward to a number of upcoming opportunities to talk about our experience of writing and the meaning it has had.  We welcome anyone who is interested and able to join us at any of the following events:

Tuesday August 2, 2016 at 6:30 PM:
Buttonwood Books and Toys
Shaw’s Plaza, Rte. 3A in Cohasset, MA

Wednesday August 3, 2016 at 5PM:
Sponsored by Partners Village Store, hosted by Dedee Shattuck Gallery,
1 Partners Ln Westport, MA

Saturday September 10, 2016, at 2PM:
Norman Williams Public Library
10 The Green, Woodstock, VT 

Sunday September 11, 2016 at 10AM:
North Chapel,
7 Church St, Woodstock, VT 

March 2016:

I would first like to express my gratitude to both the Mennonite Church in Bridgewater, VT and to Dartmouth Hitchcock Medical Center, two places that offered warm invitations to engage with others about our story.  So far, we have found this stage of more public sharing and reflecting to be exciting and stimulating.  We hope to continue to participate in a larger conversation about how we attend to the “whole person” and family in times of medical crisis, and, more broadly, how we attend to issues of mortality in this culture.

We are looking forward to another public appearance coming up at the Barnes and Noble in Middletown, RI on March 19th at 3PM.

January 2016:

Since releasing Feel Me Brave some months ago now, it has been interesting to see where this book wants to go.  We are grateful to friends and family who have spread the word and to bookstores that have made a home for it on their shelves.  A special thank you goes to friends Cathy and Jim Everett who helped give the book a place at a recent education conference in Boston for the Hospice and Palliative Care Federation of Massachusetts.  And thank you as well to Ira Byock who assisted in giving our story recognition at a recent Hospice and Palliative Care event in California.  Whether on an individual or larger scale, we are always thrilled when the book connects with people in a meaningful way.

In the coming months, we are looking forward to two events that will entail my and my father’s participation.  The first will be a reflection at the Mennonite Church in Bridgewater, VT on January 31st, facilitated by a good friend who is a member there.   Later in February, we will contribute to a training event at Dartmouth Hitchcock Medical Center on behalf of chaplaincy staff and interns, as well as staff members from a local Hospice organization who are seeking guidance in their work with pediatric patients.  I feel deeply drawn to that intersection of spirituality, medicine, and end of life issues, and honored to participate in an exploration of these critical matters with people in related professions.   

Finally, I am grateful to my father Walter who has been such a loving and steadfast partner in this whole endeavor.  With the book and the various, interesting pathways it has uncovered, we are slowly and tenderly working with the raw material that is our grief, and giving it a shape and purpose infused with remarkable energy and meaning.  I could not have done it alone!  So thank you, Dad, for being so in tune and aligned in our efforts to honor Ryland and keep his presence so strong in our lives.

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.