The death of a child is the most devastating loss imaginable. MATT CLARK meets a York woman who, in the hope it will help others, has written a book describing how her family coped with bereavement.

LITTLE Abi Neligan died suddenly on a wet November day in 1984, a few weeks before her third birthday. She had developed croup, a normal childhood illness, but was kept in hospital overnight, just in case.

However when the doctors tried to put in a drip, Abi suffered an attack and stopped breathing. The crash team was called but it was delayed, leaving Abi with brain damage.

For four days she was in intensive care, but nothing could be done. Her parents were then left with an agonising decision. Should the life support machine be turned off?

They said ‘yes’ to save their daughter any more suffering.

“We were then left with the aftermath, to go home to a house that was completely different and a family that was completely different because one of us was missing,” says Abi’s mum Chris.

“I felt totally numb, my world had collapsed, it was the start of the next chapter in our lives and I thought,’ I don’t know how we are going to do this’.”

Chris was 34 at the time. Abi’s death was to leave a vacuum in the family’s lives for years; nothing but isolation, inconsolable grief and, for some, anger.

But Chris had three other children who needed her like never before. And that gave her a focus; something to do. Life had to go on.

“One of the first things my son Matthew said to me was ‘I‘ll never be happy again’. I told him he would, but I think I thought I could never be happy.”

The constant questions were: why us, why her, why now?

Chris was frozen with grief, often unable to relate to people and angry with herself.

She went through long periods of thinking there was nothing she could say to her children, because the fundamental responsibility of her role as a mother had been shattered; she hadn’t managed to protect Abi who had died.

“A couple of days after we lost her I unconsciously laid her place at the breakfast table. It was heartbreaking to put them back into the cupboard.”

The intense grief returned again and again and while the triggers lessened with time, they still hit Chris when she least expected it. Gradually though, she became more able to weather the feelings which would eventually abate and allow her to feel more in control.

Two decades later and the what-if questions remain. How would Abi have developed, what difference would she have made to her family? Would they be happier?

“I’m so glad I had her. There were times when I wished I hadn’t, then we would have been spared all that grief and heartbreak,” says Chris. “Spiritually though she’s still there and that helps.”

The passage of time has finally healed many open wounds of despair and now Chris has written a book that charts her family’s journey; how they coped – and sometimes didn’t – with the death of their youngest member.

After Abi died, Chris read a number of counselling books. All were written from the parent’s perspective, but she wanted to tell how the death of a child affects everyone, from grandparents to brothers and sisters.

“No one tells us how to behave when a child dies and we never think it will happen to us. It felt like starting a new job; one you didn’t ask for.

“We made the decision to send the children back to school within a couple of days and I’m sure people thought we were mad, but it was our decision and the right one for us.”

Life is But a Dream doesn’t try to offer solutions; it’s not a book of top tips on how to cope, instead the key message again and again is that everyone in the Neligan family did their best, even if sometimes it wasn’t quite enough.

“I’d like people to see my book as a whole family experience and I hope it gives them permission to do things their way; an inner faith that what you do is the right way to do it.

“Not to be led by others; it’s okay to do it your way.”

Chris decided to interview her family individually so she could build a picture of how they found ways to cope. At first she intended to write a booklet; a manual perhaps. But with so much material, a freelance editor suggested she keep going and produce a book.

“People fantasise and make things up, they feel guilty about things they did, didn’t do, said, or didn’t say. I thought this might help my children and give them a picture of what happened and give them something for the future so we don’t forget Abi.”

After Abi’s death Chris decided to use her understanding of bereavement and grief to train as a counsellor, and when collating material for her book, being interviewer as well as mother added a sense of detachment.

At the beginning of each interview Chris says she felt nervous because the questions were taking her family back to a very distressing time in their lives.

But it gave them a chance to reveal thoughts that had been festering for 20 years, many of which had provoked unwarranted feelings of guilt. “Some of the things they told me were upsetting, such as snide remarks made at school like ‘you didn’t deserve to have a sister’. I wasn’t aware of that at the time.

“They were all upset in different ways, but wanted to help and it was only after the interviews and they had read the finished book that they realised it was a cathartic and liberating process.”

Chris wondered if there could be any new insights into her husband Paddy’s feelings and thoughts. They had spoken of Abi so often that surely all had been said. But Chris says the book brought Abi back to them in a new way.

“I felt very close to Paddy as we got into our conversation. I began by asking about his strongest memories of that time. A lot of them were about Abi being unwell at home and about feeling guilty; why didn’t I do that and so on.”

The couple had also developed different ways of coping. Paddy says because Abi was so lovely; he didn’t need to be sad.

It was of course a strategy, but it helped; he was able to smile when thinking about her.

The interviews were only part of the process. Reading everyone else’s comments completes a generational story of how one family coped with bereavement. And many of the anecdotes were unknown to Chris at the time.

Take Cathy, who secretly prayed for her sister and lost her faith the day Abi died, or Simon who lost himself in music to find solace. All the children were reading the letters and cards of condolence on a regular basis, again without their parents knowing.

“I realised as I got into the interviews that this could be useful to other people who have been bereaved. I thought, ‘Gosh what is this book going to become?’” This led to a dilemma: publish herself or through an agent who would want to change it to make the book more commercially attractive.

Chris chose the former.

“It has given me a real sense of achievement. One of the questions asked after Abi died was what was the point, what was she here for? Well I’ve come to realise that my book is her legacy.

“I’ve been through the deepest hurt I could ever imagine and I’ve been able to come through it and describe myself as a happy woman.”

• Life is But a Dream is published by Oasis Press, orice £15, postage and packing £2.95. All copies sold include a £2 donation to the Oasis Foundation, earmarked for children’s medical treatment in Africa.