Melbourne: Parenesis Publishing, 2018

Being Sam tells of an experience for which, in Morag Zwartz’s own words, “there were no made-roads” (p. 63). In his short life, her son Samuel walked the rare path of having both Down Syndrome (Trisomy 21) and acute lymphoblastic leukemia. Sam spent 15 of his 17 years on this earth fighting cancer, and 9 and a half years of that was on chemotherapy. So intersecting his more disability-related experiences of struggling to feed, attending speech therapy, specialists and special schools were the cancer-related experiences of frequent hospital admissions, tests, toxins and side effects.

This book is not a pretty summary of what this family has faced; it depicts life in the trenches. Morag not only spells out the daily grind and sudden emergencies, she also digs into gut-wrenching questions like ‘how do you subject a child to year after year of scary, intrusive and painful intervention, that you knew you couldn’t endure yourself?’ It is a mother’s raw and sometimes jarring view of life with a child being constantly pulled back from the brink. Although Morag describes her trust in God, it does not read as an experience that has been pushed and shoved into neat theological frameworks. It is also not the objective and smoothed-over language of a health professional or teacher. It is heavy, realistic and very physical suffering, expressed in short stories, drawings, poems and eulogy. Deep, genuine respect is paid to Samuel and his joyful nature, his eccentricities and cognitive limitations, his endurance and limits.

I appreciated this careful recounting of Sam’s life for three main reasons. Firstly, Sam’s unusual life lived on society’s margins is described without heavy preaching or theologising. The gentle whisper of the family’s faith hums in the background, which perhaps makes it an easier book for a non-Christian person to read. Secondly, the in-depth recounting of the impact of disability and cancer on the immediate family is of great value to anyone working with those touched by either. Finally, in a time when both abortion of disabled children and euthanasia of the terminally ill is almost normal, this book is important. It is a strong yet gentle witness to the irreplaceable value of a life.

Being Sam -- by Morag Zwartz

Being Sam

Morag Zwartz | Parenesis Publishing

Available at Reformers Bookshop