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Book Review: Being Sam

Monday, 15 November 2021  | Denise Cooper-Clarke




Being Sam

By Morag Zwartz

(Boronia, Vic.: Parenesis Publishing, 2018)

 

It was six years after her sixth child, Samuel, died of acute lymphoblastic leukaemia at the age of seventeen that his mother decided she needed to speak for him, as she had done all his life, and write this book. It is not uncommon for a parent to write such a book, and the story of the life and death of a child is always moving, sometimes powerful. What sets this account apart is that Morag Zwartz as a journalist and author, writes beautifully and is a Christian. And what set Samuel apart was that, as well as contracting an aggressive blood cancer when he was almost three, he was born with Down Syndrome.

We might expect an account of Sam’s life to be unremittingly sad, but Zwartz avoids anguished “Why me?” questions about suffering. She writes in a matter-of-fact way without abstract theological or philosophical speculation, yet her honest reflections on her struggle to cope with the “fifteen year-long rescue mission” (36) touch on profound truths about life, disability, illness and death and make this an inspiring rather than a depressing read.

Nor is there any preachiness in her discussion of how her Christian faith influenced her attitudes and decisions. Without labouring the point, she tells us that she refused both amniocentesis and termination when she became pregnant at 38, saying “surely there is room for the physically and mentally challenged” (6). And when Sam was born with Down Syndrome, she simply says that, despite her dismay, she “was aware, deep in my being, that this child, like all others, was a gift from God” (7). Early in Sam’s life, Morag and her husband agreed that, while he was ‘special” and would require extra care and patience, they would not make him their “mission in life”. They trusted that he would develop his potential with the encouragement that was “possible within the framework of a whole family and its needs” (10). This attitude, she admits, partly arose from weariness, but also from “our conviction that there will come a time when Samuel will be restored, beautiful, complete, mature, whole and perfect” (11).

Many people would regard a fatal disease in a child with a genetic abnormality as doubly unfair and tragic, but Samuel’s cognitive impairment actually became something to be “celebrated” as his illness advanced: “I can say with certainty only that I know he was spared the mental anguish of contemplating his illness, his prognosis, his next round of more intensive chemotherapy, his life expectancy, and his death” (71). Similarly, Sam lived one hundred percent “in the moment” and his mother describes his life as truly joyful and happy, as well as “a life of ineffable enrichment for those who shared it” (101). His very impairment meant that “he was never the tiniest but aware of his deficiencies or his inadequacies. I feel certain that he never felt disadvantaged or hard done by” (110).

This is not to deny the reality of immediate pain and discomfort Sam endured in more than a hundred admissions to the Monash Children’s Cancer Centre, or the pain for his family in the “continuous dance of hope and despair, relapse and remission, treatment and recovery, round and round and up and down, again and again… his way was to suffer and forget, ours was to lament and remember” (99). And Zwartz repeatedly questioned whether she was right to subject Sam to the toxic chemicals and distressing procedures that nevertheless significantly prolonged his life. She is genuine in her generous praise of and appreciation for the medical staff who cared for Sam (and his family), and the teachers at the schools he attended, who all accompanied them on the journey through the valley of the shadow of death, in which Sam did several U-turns before palliative care was begun, eventually “fading away” at home, in the presence of his family.

The book concludes with a number of Sam’s drawings, a series of his mother’s reflections on his death, the eulogy that was delivered at his funeral and his obituary. This book could be unreservedly recommended to parents of children who have either a congenital abnormality such as Down syndrome or a potentially lethal medical diagnosis, whether they have a Christian faith or not. Zwartz’s trust in God and love for her son shine through every page.

 

Denise Cooper-Clarke is a medical ethicist and volunteer researcher with Ethos.


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