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I could not believe my son was dying

Author Morag Zwartz shares the personal journey of Samuel’s leukaemia battle

Morag Zwartz is still puzzled by her inability to grasp the reality that death was likely to claim her son, Samuel.

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The Melbourne-based writer was taken unawares when her sixth child, born with Down syndrome, was diagnosed with leukaemia as a cute and active toddler not far off his third birthday. But unlike the overwhelming majority of children who recover from this common childhood cancer, Samuel kept relapsing and defiantly bouncing back until it seemed death could not hold him.

“Death is so incomprehensible; it’s not like anything else you’ll ever experience.” – Morag Zwartz

“Samuel had an incredibly rare experience,” Morag tells Eternity.

“It’s extremely unusual to die of leukaemia, but in Samuel’s case he kept relapsing. So he had two years of chemotherapy; he was fine for a while, then out of the blue he relapsed.

“He had more chemo, he was fine, then suddenly he relapsed, he had more chemo. And so it was very, very strange and we were all taken on this crazy journey.”

The third relapse “really hit us in the guts,” Morag says. “The more [relapse] happens, the more likely he was to die. Yet his pattern became to come back, so ‘he’s not going to die – that’s not what he does. He has horrible treatment and then comes back.’

“It was a really weird 15 years of up and down and round and round. ‘Oh, we’re dying, oh, we’re not dying!’ He’d be bouncing with energy and then ‘oh-oh!’”

Morag says that even towards the end, when Samuel had spino-cranial radiation for the first time – as cancer entered his spinal fluid and brain – the evidence in his demeanour and behaviour always denied that things were closing in. “He was smiling at you and saying something and I’d be thinking, ‘What do you mean, he’s dying?’ It was very, very hard to grasp.”

Morag says she embarrassed herself when she reacted flippantly to palliative care doctors. They wanted to discuss a plan for him to die at home but “I just couldn’t get on board with all the serious talk.”

Her inability to believe the likely outcome of Samuel’s brutal war with a potentially fatal illness is a recurring theme in Being Sam, the memoir she has written and recently published.

“And I wonder about that: Am I unusual because I’m not very good at reality anyway – I live in a bit of a dream world – or whether I’m quite typical. I suspect that I may be fairly typical of a mother with a child who’s dying because it’s so utterly incomprehensible.

“Death is so incomprehensible; it’s not like anything else you’ll ever experience.”

Morag says Being Sam is a departure from her three other non-fiction books in that it’s so personal. However, as with the others, she felt God led her to write it.

“It’s deliberately written for the mainstream reader, but my faith is unmistakeable. I’ve tried very hard not to turn off a non-Christian world because I really do want to empathise with people who are going through the difficulties of living with a loved one with a disability or serious illness or bereavement. I wrote it primarily to say thank you and honour that vast array of people who supported us and, secondly, to empathise with others.”

She did not, as everyone assumes, write it as a cathartic process, because, she says, that doesn’t make good literature.

The beautifully written book has been warmly received by medical professionals, especially those who were a semi-permanent part of the Zwartz’s family life for 15 years.

“In her launch address, ABC Radio’s Hilary Harper said that love spilled out of every page … one review said it’s the story of a mother’s enduring love. I think and I hope that there’s a lot of love from others as well. People who came to our rescue at terrifying times, like the time with a nose bleed … there was a race to the emergency department and a wonderful doctor – an ear, nose and throat specialist – who sorted things out. I’ve loved her ever since!”

“Sam had a wonderful sense of humour and a wonderful sense of irony.” – Morag Zwartz

A great deal of the pleasure of the book is Morag’s marvellously vivid portrait of her son’s creatively unruly but joyful spirit, which enriched all those who shared it.

“He had wonderful social intelligence,” Morag says.

“He couldn’t articulate or understand necessarily a conversation, but he would get it if you were joking … he had a wonderful sense of humour and a wonderful sense of irony.”

One example was the ironic way he would use the Makaton sign for “finished” – where you make a fist of your right hand, extend your thumb up and then move your thumb from side to side.

“That became the most used sign and it would be something he would do just as he was being taken in for treatment. And I’d say, ‘no, darling, we haven’t even started yet.’

“Sometimes he’d be lying on the bed about to be anaesthetised and he’d do it again. He was doing it in an ironic tone because he knew we hadn’t even started. He had quite a sophisticated sense of humour.

“And he was a great mimic. He would sit and have long conversations with a mobile phone to his ear and he could do the generic male – laughing, talking to his friends, chatting, slapping his thighs, throwing his head back and laughing – he was such an observer. There was so much more going on there than you thought.

“And his astonishing piano performances. He would sit there for up to 15 minutes and thump out this very loud, rhythmical thing. Every once in a while, he would suddenly stop and then throw back his head and laugh and then carry on with it. It was as though he was saying – ‘gotcha, world!’”

“If you compare one major unpleasant thing against all the benefits of blessings, it just doesn’t stack up.” – Morag Zwartz

Morag believes these piano recitals were the best indication of Samuel’s “latent and inexpressible genius,” but she saw a wealth of potential in his brain that he was unable to mould into words and actions of consequence.

“I still marvel that a child who was not bright intellectually could share so much gentle humour, just subtle little things.”

Another source of wonder for Morag was the fact that, unlike a normal child, he didn’t live under a “canopy of dread” about the future.

“Any moment there could be another relapse, any moment another round of chemo, more surgery, more hideous treatment. But he wasn’t lying awake wondering whether his cancer cells were going to come and attack him again. He was oblivious to all this; he was incredibly and wonderfully in the moment. I tried to emulate him because we’re all encouraged to live in the moment and there’s a biblical angle to that idea.

“I tried all the time to trust God that I would find a way to accommodate myself to God’s purposes and God’s plan.”

Morag says her faith did not ebb and flow during all of the ordeals the family faced with Samuel’s illness. It remained rock solid.

“The thing that was a challenge was how do I glorify God? I have no question whatsoever that God does as he chooses; he does as he pleases, he does not owe me an explanation. We never asked, ‘why me?’ If I do ask ‘why?’, my biggest ‘why’ would be ‘why was I fortunate enough to have five healthy children and work and all the things I have every day of my life?’

“If you compare one major unpleasant thing against all the benefits of blessings, it just doesn’t stack up.”

As Samuel went through puberty and had to take increasingly creative drug combinations to keep him in remission, Morag would sometimes lament that she didn’t know if his volatile behaviour was due to “chemo or chromosomes or hormones!”

“So a lot of my time with Samuel I was anxious. When he’s not pleased with the world, that’s not when I want to be out in public. And added to that as he got older there were these unpredictable outbursts and difficulties. So as a mother I was always tense and anxious about keeping a lid on this. However, other people don’t see it like that. They didn’t know how I was feeling. They remember the happy, cheerful comical aspects – which I find fascinating.”

“I hope I celebrate the beauty of love and gentleness and kindness and care …” – Morag Zwartz

Morag hopes her book will offer Christians a sense of “living with something pretty scary but trusting God through it and being kept by God through it.”

“In a more general way, I would so love for it to be a sense of empathy with those who are struggling – a sense of ‘you are not alone’ because the biggest thing when you’re going through challenging stuff is feeling alone.

“And, secondly, I would love those thousands and thousands of people in so many different areas who make time for sick people and struggling people and disabled people to be encouraged in that. It’s such a beautiful thing watching a carer with a gentle attitude towards the person.

“I hope I celebrate the beauty of love and gentleness and kindness and care in both professional areas and just in a life way.”

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