Sarah and Ross Gray found out that they were expecting twins. And then they found out
that one would live and one probably would not. Learning about the life of their oldest son, Thomas, was almost immediately paired with learning about his death due to anencephaly. Throughout the rest of her pregnancy, Ross and Sarah walk a road of hope and grief.
They ultimately decide to have Thomas’s organs donated either for transplant or research. This is not a common decision, for many obvious and not so obvious reasons. The ups and downs of the birth and what transpired after are gripping and as moving as one might expect. However, the real triumph of the book happens in what Thomas “achieves” in death. His corneas, liver, and blood, among other things, are part of extensive life-saving and life-transforming work in research labs and universities up and down the eastern seaboard.
Gray includes other stories of parents who chose to donate the bodies or organs of their deceased infants. In many instances, these parents had to really push to find a way for their children to be accepted. Research can only advance so far without the ability to be put in context. The donation of bodies- organs, tissue, bones, and whole bodies- for research allows for the fighting of disease at a different level than one life at a time.
Religion does not play any kind of significant role in this book, though there are two kind souls- a priest and a chaplain- who do show up and show up well. Yet, Sarah Gray goes on a holy quest to see her son in the afterlife of his body. She goes to the research facilities that received his organs. As she begins to see the work that Thomas is helping, the researchers are moved to see the family of a donor who has made furthering their work possible. The meeting of hearts and minds- sharing grief, joy, and purpose- is a blessing to those present and to those reading about it.
The story itself moves very quickly. While the various organizational acronyms make a little bit of an alphabet soup, it is not impossible for the reader to follow. Gray’s own curiosity and energy in pursuing the channels of donation to research pull the reader along with her. This book is ideal for people who already loved learning about Henrietta Lacks or who wanted to but found that book overwhelming. This is an easier read.
What boosted the rating for this book in my mind was the material. Gray’s grief pushed her into creative thinking about how her son’s donations were being used. There wasn’t actually anything to stop her, but- at any point- people who were worried about lawsuits or misinterpretation or just encountering a grieving mother could have stymied her search. Instead, the book reveals a web of people who were interconnected by a short life that was actually more full of meaning and possibility that most people would think and most parents would dare to dream.
This is probably not the book to hand to a freshly grieving parent, although, within the book, parents who learn about anencephaly support each other. This IS a book for anyone who is interested in science, health or medical research, organ donation, or grief/process memoirs. One of the preschool teachers at the congregation I serve has already called dibs on my copy and I think I am going to buy a copy for at least one of the hospital chaplains in the congregation as well.
I asked for and received an advanced review copy of this book from the publisher in exchange for an honest review.
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