After almost six years, the book that was once just an idea has now become a reality. Shared Struggles: Stories From Parents and Pediatricians Caring For Children With Serious Illnesses is available for purchase on Amazon and the Publisher's (Springer) websites.
Here are the words I shared on Facebook - I think they best describe my emotions at this time:
"I just want to share that reading the back cover and the words that I have "over 15 years of experience interacting with pediatric subspecialists and other healthcare professionals who cared for her son." sounds so foreign to me after so many years of being away from "the life." There were many times I questioned my authority to have any say in the stories and experiences shared. And yet, when I started writing my commentaries ... the words flowed. Because I did understand the experiences shared and I also understand that this book is more than just an opportunity to bring parents and physicians together, it is an extension of why I was given Jack and why I was given the connections he brought to me and why I was given the lessons I learned as his mom. This is not my book and will never be my book - it is OUR book. But it is also Jack's legacy and a reckoning for me of the "why" of all the hard that came with being Jack's mom. The opportunity for this book came because Jack lived AND because Jack died. The price was high (too high), but to be given the opportunity to find the good in the hard is a gift I will never take for granted and will always thank God and Jack for. Onward my friends and thank you!"
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Order on Amazon or on Springer's website
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Beautiful Foreword by Christopher Adrian MD
FOREWORD
My mentor in palliative care fellowship once told me that most of what we do as palliative care providers can be summed up as helping the hospital learn and understand what's going on in the patient's room. By "the hospital" he meant the whole panoply of medical and psychosocial care providers assigned to the patient, orbiting near and far from the bedside, anybody who might open up one of our consult notes to read the documentation of conversations in which we asked parents to tell us about their hopes and worries, about the sources of their strength and support, and most importantly, about who their child is, not as a patient, but as a person, because a parent's portrait of a child is a portrait of a parent's values and a family's values. By "the room" he meant not just the space enclosed by the four brightly colored walls, but the emotional and spiritual milieu in which the patient and family lived, loved, and hoped - the ordinary physical space being a metonymy for an extraordinary metaphysical space that housed not just the bodies of a patient and their family, but also their stories and their spirits.
This book is an exquisite collection of just that kind of story. To read it is to learn just how much goes on inside "the room," just how rich and terrifying and beautiful any one family's experience of the hospital can be, how totally different every family is in their unique phenotype of daily struggle and triumph, how very much the same they are in the example of profound loving they make to us all.
But this book collects the story of what's going on in another room, one that intersects and overlaps with the physical and metaphysical spaces of the patient's room. The doctor's room is a workroom on the unit, but also the empty storeroom into which they might retreat to collect their thoughts and feelings, or the car in which they make their commute, and like the patient's room, the doctor's room expands to encompass their home, their own family, their friends. It is the head-space and the heart-space in which they attend to the patients and families under their care.
To collect and juxtapose these stories is already to make something beautiful for the world at large and useful for the community of care for children with serious illnesses and their families. But "Shared Struggles" takes the risk of committing itself to reconciling these stories, by means of parent and physician commentary which engage with the content from positions of equal and complimentary expertise. That risk elevates the beauty and use of the book such that it becomes something entirely astonishing and necessary and completely one-of-a-kind: a textbook of connection between the lived experience of each party, a reconciliation that is the fundamental act of pediatric medicine.
As pediatric medical providers, we talk about the art of medicine as something we practice upon patients, not often recognizing that patients and families, and parents especially, practice their own art of medicine, not on their children or themselves, but upon us. They are called to manage us, in the course of their child's illness, just as much as we are called to manage their children, as they partner with us in loving care, seeking always to find a way to accept the help we offer while protecting their child from any harm we might do. You cannot tell someone how to practice such an art any more than you can tell them how to be compassionate, or empathetic, or kind. But that doesn't mean instruction is impossible. Such attributes, and such art, can be fostered and encouraged into sturdy practice. You can't simply tell someone how to make a genuine connection with their patient, how to shape their professional boundaries, not as lines in the sand, but as contours along the heart. You can't just tell someone how to balance advocacy for their child with trust for a provider, how to put faith in the love of a stranger for their child and never lose faith with oneself. But you can certainly show them how to do it, as this collection shows us, with unparalleled richness and sincerity, over and over again.
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We need this book to get into the hands of every pediatric residency program, medical school, nursing school, parents of children with chronic complex conditions, and all those who care for and love our children. Please share and if you have any questions or need information, please contact me via email @ schrooten[dot]ann@gmail[dot]com.
