Wednesday 20 September 2017

Could you ever get over the death of a child?

Denise Turner’s son Joe died, aged 19 months, but she believes that it is indeed possible to recover.

Denise's daughter Amy with her twin brothers, Joe (left) and Dan
Denise's daughter Amy with her twin brothers, Joe (left) and Dan
Life goes on: Denise Turner has coped with the death of her son Joe, inset.

Joanne Moorhead

The paramedic who came to the house when Denise Turner’s baby son died, knew exactly what she ought to do.

“He said you need to sit down and you need to start to grieve,” she says. But Denise didn’t want to grieve. She wanted to put her jacket on over her pyjamas and take her six-year-old daughter to school. “Amy didn’t know Joe was dead at that stage. All I’d told her was that he wasn’t well and we needed to call an ambulance. I knew the police were about to arrive, because it was a cot death and I knew the house would soon be swarming with people, and that it would be a very scary place for a little girl to be.”

Denise felt angry with the paramedic for trying to tell her he knew best. “I was furious. I said to him, ‘What are you going to do? Stop me from leaving the house?’”

What she now knows is that the professionals bereaved families have to deal with, and the wider community, have a very narrow frame of expected behaviour and outcomes for those who are bereaved when a child dies. Recently, this has become the focus of Denise’s research as an academic.

Life goes on: Denise Turner has coped with the death of her son Joe, inset.
Life goes on: Denise Turner has coped with the death of her son Joe, inset.

Denise did take Amy to school that day. Nine years on, she knows she was right. “Amy remembers Joe but she doesn’t have traumatic memories about that day and I’m so pleased about that,” she says.

In fact, Amy (15) her brother Dan (10) — he is Joe’s twin — and Denise herself are all doing just fine. “People think there must be fallout. They think there must be deep-seated issues somewhere and I know they sometimes go looking for them, especially in Dan because he and Joe were twins. But I don’t think they are there — and I don’t think happy and thriving and sorted are how people expect us to be. There’s this idea that losing a child is the absolute worst thing that can happen to you and once it happens, you can’t really ever recover.

“So a bereaved mother is expected to behave like the French Lieutenant’s Woman, standing on the Cobb staring out to sea. Or she sits in a corner weeping. But that’s not how I’ve been — and when I started to interview other parents who had lost children, I realised it’s not how they were behaving either.”

For her PhD research, Denise talked to other bereaved parents. Her focus was on how families are treated by professionals when they experience a sudden death in childhood, but when she presented her interviews to academic research panels — ie, other people — to gauge their reactions, she was surprised by the response.

“One mother, who I’ll call Cathy, had lost her son Dylan at six weeks of age. When she realised he wasn’t breathing properly she called an ambulance. That triggered a rapid response team, and some of the police who came were actually armed. Cathy had other children so that response, which she understandably considered to be entirely inappropriate, made her very angry and she was still angry when I interviewed her.”

One woman on the panel, on hearing Cathy’s story, told Denise: “I’m sick of this aggressive woman. She’s not behaving as a grieving mother should.”

That prompted Denise to ask: How should a grieving mother behave? And what she realised was that a mother who has a lost a child should have the right to behave exactly as her instincts guide her. That’s because, although she profoundly disagrees with the idea that a child’s death is something impossible to recover from, she is clear that it’s one of the biggest blows imaginable. The irony, which was far from lost on her, was that while society acknowledged the scale and depth of the loss, it proceeded to erect a very strict frame of reference about what was acceptable behaviour. So much so, she says, that bereaved parents sometimes end up trying to fit in to what they feel is expected of them, rather than doing what feels right to them in the days, weeks and months after a child’s death.

“People would say: ‘You need counselling.’ I thought, ‘What’s that going to do? It’s not going to bring Joe back, is it?' So counselling didn’t feel right for me, but the voices around me were so insistent that I remember thinking, should I actually go for counselling?

“If you don’t behave in a certain way — if you’re too angry, or you don’t seem to be engulfed in your grief, for example — the people around you withdraw their support. They get angry with you, and you lose their sympathy. I think some people do try to fit in because they don’t want that to happen to them, but where you see it all coming out is on the forums and chat boards on bereavement websites because that’s the only safe place to express it. The problem with that is these places can become ghettos and people can get stuck there.”

Among friends, says Denise, there was an almost ominous expectation that she was bound to be constantly on the verge of tears. “When I went back to playground 10 days or so after Joe died, some people were surprised — and it begs the question, what else did they think I’d be doing? Sitting inside crying, presumably. But I had another baby to look after.”

Denise's daughter Amy with her twin brothers, Joe (left) and Dan
Denise's daughter Amy with her twin brothers, Joe (left) and Dan

In general, says Denise, the reaction when she was out and about was very mixed. “There were people who never even mentioned the fact that one of my children had disappeared,” she says. And there were those who seemed almost attracted to her in the aftermath of the tragedy — the ghoul-seekers, who had definite ideas about how anguished her life must be. Others, she says, just stood in front of her and sobbed. However people reacted, though, it often seemed to Denise to be less about her feelings, and more about their own.

The worst aspect for parents who have lost children — worse even than having to hide their real feelings — is, says Denise, that the truth about survival is far more empowering and positive than is generally understood.

Like Denise’s own surviving children, I grew up in a family where a young child died, so I have known this at first-hand too. Like Denise, I have used the experience of being bereaved to inform and guide the sort of work I do and, like her, I have sometimes come up against people who feel it is not appropriate or — as Denise was once told by a bereavement charity — her work is “misguided”.

She has also been warned that she needs to honour Joe’s memory but, as she says, what does that mean? She feels the best way to honour Joe’s memory is to live as fully and as well as possible, for her children and for herself. Yet saying that seems somehow to bring other people up short or send them off balance.

It is as though the death of a child is so terrible that it’s difficult to acknowledge that anything positive can possibly come out of it, but for the people left behind, that is precisely what they must try to find, even though they would have done anything in their power to make things different.

Being a good mother, a protective mother, to her surviving children has been Denise’s overriding ambition since Joe’s death. That, of course, is why all she could think about on that morning in March 2005, when she found her son dead in his cot, was the impact on Amy. She could do no more for Joe, but she could protect her other children.

Underlying Denise’s research is a fascination with boundaries because she believes that some of the damage is done because the professionals who are involved when a child dies — particularly the police and social workers, though it could apply to some in the medical world as well — are as unable to deal with it as anyone else, and hide behind procedures and expectations as a coping mechanism.

“They say a child’s death is the worst thing that can happen to a parent but I sometimes think it’s the worst thing that can happen to a professional,” she says. “They are trained to sort things out, to make things better, to get you through — and there’s no sorting this out or making it better, or getting through it.”

If professionals could be more honest about their own feelings, perhaps they could be more accepting of following a bereaved parent’s lead on how to behave. Instead, in a desperate need to retain control in a situation that is entirely outside anyone’s control, they sometimes seek to impose their own ideas about how the bereaved parent should behave — just as the paramedic did that day at Denise’s house. In other words, his response was all about him and very little about Denise, and that, in turn, is what made her so angry — and makes her angry still when she remembers it.

But she balks when she’s accused of attacking professionals. She was a social worker herself for 10 years before Amy was born. “We have to give professionals permission to be human beings first, to meet people halfway.

“That’s why I don’t feel I’m attacking professionals because what I’m saying would help them learn how to cope better themselves with these situations, as well as being able to better help others.”

That matters because what no one wants is what one of Denise’s interviewee parents said about their son’s cot death: “He said that the way the family was treated that day was worse than actually losing their son.”

Where a child’s death is as Joe’s was — random, unexplained, out of the blue — the need to explain it often seems overriding. “As a former social worker, I understand the need to protect children, but in most cases when a child dies suddenly, there has been no crime.

“So our response is overdramatic and not well thought through. It beggars belief that, when a cot death occurs, no one takes into account the feelings of any other children who might be in the house at the time — they are treated as an irrelevance, when in fact they could be being psychologically harmed by the arrival of police response teams and social workers and the fact that the finger of suspicion is pointing at their parents.”

It’s a tribute to her resilience that, despite all this, Denise has made it through. But not every parent who loses a child is as lucky — some are lost in that no-man’s land of having to respond to others’ expectations rather than being able to work through their feelings on their own terms. What is especially sad, Denise believes, is so few have felt able to tell their own stories of survival — stories that centre on a loss that would have seemed unthinkable, but which they do move through and even emerge — as Denise has — with a new, enjoyable life.

“Ultimately, our stories are uplifting ones and the ending is a happy one,” she says. “Because we have hit the bottom, we’ve gone to the lowest place you can go and found there was still something solid beneath our feet and that, eventually, we could start to climb out again.

“That’s a hopeful message, one I think it’s important to share.”

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