I haven't blogged in a very long time. I only write when I feel moved to write. Tonight I feel moved to write ... so, I write.
As you can imagine, the last year has been all about "the book." Shared Struggles was published one year ago on April 28, 2021. I recently received our first annual sales report and royalty check.* We sold over 900 copies of the book in the eight months the book was out in 2021. That doesn't seem like a lot of copies to me, but I'm reminded that when you consider our publisher is a medical publisher, not a mainstream publisher, it is a respectable number of sales. And honestly, from my and Barry's perspective, it is not about the number of sales, it is about getting the messages of our stories out to the medical professionals who need to hear them and to the parents who they resonate with. And we have been getting the messages out.
Last year we were given the opportunity to talk about our book on a podcast with Blyth Lord of Courageous Parents Network, and I spoke about our book on a podcast with The Unforgotten Families. So far in 2022, we've given virtual Grand Rounds at UMass Memorial Children's Medical Center and an in-person presentation at a PALISI (Pediatric Acute Lung Injury and Sepsis Investigators network) meeting. To date, we have three more Grand Rounds invitations - Children's Hospital Los Angeles, Phoenix Children's Hospital and Department of Pediatrics at Weill Cornell. I've met with the Chair of the Department of Bioethics and Medical Humanism at the University of Arizona School of Medicine - Phoenix and I've sent the book to the Director of Curriculum at USC Keck School of Medicine, both of whom agreed to review the book for possible inclusion in their medical school curriculum. Some of these opportunities are because of the connections Barry has, and some are from my relentless efforts to get the word out. I told Barry that I would commit to one year of promoting Shared Struggles. We have surpassed the one year mark. What now? Aside from the Grand Rounds we have scheduled and the pending review of the book by University of Arizona SOM and USC Keck SOM, it has been relatively quiet the last month. When it is quiet, I wonder whether that is my cue that it is time to "move on" from the book. But what does moving onward look like for me? I was the parent of a medically complex child for over 15 years. After that, I stayed in the "trenches" with fellow parents and physicians over the course of the six years it took to gather stories and write the book. I've been a part of the community of parents of medically complex children for over 23 years and so many of my dearest friends are still living "the life" I once lived. I believe so deeply in the importance of Shared Struggles and its potential to make a real difference in the delivery of pediatric health care. But I'm also growing weary of asking, promoting, and, what feels like, "bothering" when it comes to this book.
Since Jack died, I've placed my patience and my faith in the phrase "Here I am Lord, Send Me." And it has worked well to guide me and keep me on the path that I believe was intended for me after Jack's death. I'm over eight years in and the book is published. I'm not sure how much longer or harder I'm supposed to push the book or remain in the world of medically complex children. Yet, it's really all I know. Can I ever really move on from being "Jack's mom"? From being the parent of a medically complex child? From being the editor of a book that needs to be read by the people who care for our children? I don't have the answers to these questions. I just know that I'm unsettled not knowing whether to continue to hang in there with this book or move onward and be okay with just being, with no agenda or goals.
I'm in unchartered waters as someone who is goal oriented and has always had something on my plate that needs to get done. Having the book to work on after Jack died gave me a reason to get out of bed; it motivated me to keep on keeping on. Letting go of having the book on my "to do" list feels like letting go of Jack. It's not easy to walk away from. I honestly don't know how to just "be." But maybe it's time. Maybe it's not time.
While I try to figure it all out, I will do my best to rest in the quiet and put my faith in the words that have sustained me since January 5, 2014 ...
"Here I am Lord, Send Me"
Thank you to all of you who have been there with me and continue to be with me as I walk the grief-filled walk as the parent of a child who has died. You, too, sustain me. xoxo
*all proceeds from the sales of Shared Struggles are being donated to non-profit organizations that support families of medically complex children.
