'The six most painful words people would say to us after we lost our daughter to cancer.'

The loss of a child has been described as “losing your breath and never catching it again.” Any parent will recognise it as the unthinkable, and yet sadly, in spite of advances in medicine, childhood cancer is still very much a reality.

Anyone who has experienced grief knows that far from being the linear process of denial, anger, bargaining, depression and acceptance that we are taught about, it is an individual journey through hell that may force us to question everything about our existence.

And sadly, the aftermath for parents that have lost a child is no different. They have no choice but to carry on with their lives, driven by the needs of other children, financial responsibilities, or simply the desperation to keep the memory of their child alive.

So how do we navigate the pain and sensitivity of these parents, without getting it horribly wrong?

Friends of mine, Alex Bremer and his wife, Miriam, faced exactly this tragedy five years ago when they lost their two-year-old daughter Lizzy to neuroblastoma, after a tumour was initially discovered above her suprarenal gland. Keen to improve awareness about the disease – particularly in view of Childhood Cancer Awareness Month in September – they agreed to share with me their thoughts about the best ways to support parents in this terrible position.

I started by asking them how they felt immediately after Lizzy passed in July 2013– whether it was anger, or it was relief that she was no longer in pain?

“I’ve never felt anger at all during any stage of Lizzy’s illness – or since. Miriam has, and she struggles with it still – but she’s much more reconciled with things now,” Alex said.

“I felt deep sorrow, great stress and fear, and then profound relief that Lizzy’s suffering had ended. I suspect that I had no room for anger alongside all the other emotions and practical problems I was facing on a daily basis.”

As a distant friend, I had watched Lizzy’s illness unfold on Facebook and I was unaware of the full implications of her condition. It was a shock to hear of her passing and I – like many others, I’m sure – felt too ashamed to reach out properly to Alex and Miriam so late in the process.

However, when I asked Alex where other friends had got it right, he was keen to reassure me that “the practical help with George (their older child), the meals delivered to our door – more welcome than you could possibly imagine! – and the offers of help with school fees and childcare,” were gratefully received.

But where did others get it wrong, albeit unintentionally? Alex said the main issue was with some people’s attempt to “express the inexpressible”.

“I know that when people told us how desperately upset they were at what was going on they were simply trying to express how they shared our pain,” Alex said.

“But really, I wanted to tell them that I didn’t have the capacity to care how they felt – I simply had too much on my plate to think about anyone other than Lizzy, Miriam and George. Everything else was inconsequential to me. Instead, I found myself comforting people ‘outside the circle’, which was upsetting and draining in the extreme.”

Alex also gave an example of one specific phrase he found particularly painful to hear.

“We were told one time too many that ‘it was time to move on’ – just six months after Lizzy died. It still astonishes me.”

I asked him if there is anything else not to say, such as clichés like “time is a great healer”. He said that although the expression is in some ways true, he advised against using it.

“I strongly recommend that nobody be stupid enough to say it to someone who has just lost a child. People need to remember that bereaved parents often feel tremendous guilt as a result of their (perceived) failure to care for their child. I also baulked at people offering their prayers, until my mother suggested I look at it as people simply expressing their love,” Alex said.

Alex also spoke of what Lizzy’s passing had taught he and his wife about human nature.

“There are good in places you least expect to find it – local acquaintances, coffee shops and school buddies,” he said.

“What it has (also) taught me about my own is the transient nature of my own perception of life; that at any moment of any day I might feel quite differently to any other. My emotions are a roller coaster now.”

Finally, he shared the ways he and Miriam keep Lizzy a part of their day-to-day life.

“Some aspects of that are easier than others – there’s no simple formula, other than to know that she remains our daughter, now and forever. If people want to talk about her, they’ll find Miriam and I are only too happy to gush about our beautiful little girl,” Alex said.

“Lizzy remains a gentle hand-squeeze or a knowing smile – a simple acknowledgement that any time of day or night, she’s never far from our thoughts and she’ll live with us like this for the rest of our lives.”

Sadly, Lizzy is one of many children who are affected by cancer. In 2017, 719 Australian children aged up to 14 years old were newly diagnosed with cancer. About two out of 10 won't survive.

The Children's Cancer Institute states that although cancer survival rates have significantly improved, every week nearly three children and adolescents in Australia (and 1500 children worldwide) die from the disease.

In view of these statistics, I asked psychologist, Dr Annie Canwell-Bantl, for her suggestions about how best to support parents such as Alex and Miriam. Her advice was:

• Ask them how they are going and what you can do.
• Offer practical assistance ie. preparing meals, walking the dog, watering the garden.
• Listen to them.
• Don’t hurry their grief or try to fix things for them, because that will alienate them. Remember that you are not in sync with their lives. Follow their lead.

Anyone who has experienced grief will know how complicated the process can be. A smell, a laugh, or simply someone in the street with a minor resemblance can remind you of the significance of your loss.

But what makes the loss of a child worse is the knowledge that our kids depend upon us. The death of a child overturns the accepted natural order of things and the belief that we can keep them safe. Guilt may override other emotions for these parents, and bystanders need to be sensitive to that.

For some, a step-by-step process may provide a framework to lean on in a world of chaos. For others, it makes no sense. Often, it is the limitations of our own emotions to confront pain that keep us away from loved ones at this time. And yet, such avoidance makes the journey for these parents more lonely, forcing them to bury precious memories with their child.

Do you have any advice on how to support a grieving parent? Tell us in the comments below.