Hope springs: An Edinburgh project is helping bereaved youngsters make sense of their loss

CHRISTMAS 2008 was due to be held in November in the Robertson family. Lynn and Spike Robertson from Edinburgh had four little boys back then, but their youngest was dying. Adam was only five and had been diagnosed just six months before with a rare, aggressive form of brain stem tumour that affects only 40 children a year in Britain.

• Lynn and Spike Robertson with their sons Marc, Paul and Scott

The family had crammed those final months with memories: Legoland and Disneyland, Haggerston Castle and the safari park. But Adam's deterioration was so sudden and rapid that hospital staff suggested Christmas should come early. Lynn decorated Adam's hospital room, bought a small tree and presents for the children, and invited family. It was something other than loss to focus on.

"Do you like the room?" Lynn asked a night nurse when she came on duty.

It would be 'Christmas' tomorrow. She felt her blood chill when the nurse said gently: "I don't think you should think that far ahead."

Three young Robertson boys. They sit quietly, sandwiched between their mum and dad in a room at Edinburgh's Richmond Craigmillar church, where the award-winning children's bereavement project Richmond's Hope is based. Bereavement for adults is often confusing, shocking and alienating.

How much more difficult, then, for children in different stages of emotional development and understanding, to deal with it.

Studies by the Joseph Rowntree Foundation suggest children who experience significant bereavement are more likely to underachieve at school, suffer from depression, have low self-esteem and be prone to risk-taking behaviour later in life.

Yet Richmond's Hope is the only full-time, dedicated service for children in Scotland, existing to help them, through therapeutic play, come to terms with traumatic loss caused by sudden illness, accident, suicide or murder.

Adam died on the afternoon of 'Christmas' day. Lynn, 41, and Spike, 43, each held one of his hands. They knew young children sometimes needed permission to go.

Could he see granny, they asked. Adam nodded, eyes closed. Hold granny's hand, Lynn urged. Walk with her. She felt Adam's hand, the one that had lost power weeks ago, squeeze hers.

His breathing slowed, drifted peacefully to a close. Lynn had lost her mother, father and Adam within six years but losing a child, she says, was a singular grief.

"I had a section when he was born and I actually got a physical pain across my tummy when he stopped breathing. I don't know if it was just my instinct, tightening up, but I was bent double. It was horrible, the strangest thing ever."

Paul. Marc. Scott. Steps on stairs at 12, ten and eight, each stair an individual plane, yet part of a whole. But their bottom step is missing now.

Each boy has reacted differently to that gap. Paul, the eldest, is the sensitive one. He doesn't want to talk and when the discussion about Adam gets too much, he puts his head on the desk, hiding his face in his arms.

Marc is the nutty professor of the family, an alert, constantly curious little boy who has been deemed mathematically gifted. He watches everything, listening intently.

Then there's Scott, the family comedian. "Adam was a Hibs supporter," says Scott, getting the important stuff in first when asked what his little brother was like. "And he was really funny." Who was closest to him? Probably me and Scott," says Marc. "When you speak to them individually, they all feel they were closest to him," says Lynn. Paul sits silently, listening.

Still waters. When Adam's time came close, Paul spoke to Lynn. "He said to me, 'Mum, I need to go first.' I said, 'What do you mean?' He said, 'So that I'm there to look after Adam.' I said, 'No, you need to be here so that when Adam is not, you can look after your other two brothers. Granny and granddad will be waiting to look after Adam.'"

After Adam died, Paul found it difficult to talk and his behaviour became erratic. He had just started secondary school but wanted to come home constantly and simply walked out of classes.

At Richmond's Hope, his secret fears surfaced. He was worried Adam hadn't been given the right chemotherapy treatment, that not enough had been done to save him. Senior project worker Donna Hastings took Paul right through Adam's treatment diary and compared him to other children with the same type of tumour.

Adam had survived longer than most. Once Paul understood everything possible had been done, his school attendance and behaviour improved.

Marc was different. Children can sometimes react to death with a superficial indifference. "OK, can I play on my bike now?" It's a protective mechanism. "Marc was very nonchalant at first," explains Lynn.

"We're all born, we all die … very matter of fact. He would find a logical answer for anything. If Marc had been ill, you'd have had to get the consultant to answer him." But underneath, he was actually angry.

Aggressive behaviour is one of the most common manifestations of children's grief, so common that part of Richmond's Hope play area is "the volcano room", a soft play area with punch bags. Marc was helped to make a model volcano, writing down feelings on bits of paper and scrunching them up to make the lava that had to be released in a controlled way before it exploded.

What did Marc feel angry about? "About why it was Adam when it should have been me." But why should it have been him? "Because I don't think the youngest kid in the family should die," he says earnestly.

Richmond's Hope has helped him think of Adam and talk about him without always being sad, he says. "I think about when he smiled at me. He had a monkey smile."

As the youngest of the three, Scott's needs were different. He was frightened he would forget Adam and that fear translated into wanting to watch videos of his brother all the time, which Lynn found difficult. Instead, Scott was helped to build a memory jar, capturing treasured experiences with Adam. But though all three boys were different in their responses, what they shared was a sense of survivor guilt.

"They all sat me down one day," says Lynn, "and said, 'Mum, if you could choose one of us to take Adam's place, which one of us would you choose?' It got even worse because they were all saying, 'Pick me! Pick me!' I said, 'Look, I didn't choose for this to happen to Adam so I couldn't choose one of you to replace him'."

Adam knew he had a tumour. He called it the bubble in his head. They never talked about where it would lead and he never asked. "He probably knew," says Lynn, and Paul suddenly gets up and leaves the room, followed by Scott. Their distress is obvious. Yet there is something very healthy about this family's openness, the way they communicate. Nobody stops talking when distress is displayed. Outside, Paul says to Scott: "Are you OK?" "Aye," says Scott.

"Maybe." "Come on," says Paul, "I'll give you a cuddle," and he puts his arms round him.

It is the strongest families who can speak this way. So many of the parents the Roberstons met at hospital have since separated under the strain of bereavement. "It makes or breaks a marriage," says Lynn. "I think it has definitely made us stronger as a couple." For most of our conversation, tears run quietly down her cheeks.

Usually, crying disables a person from speaking. But these tears simply pour from an endless well inside her and she talks, with composure, through them. It's a compelling, powerful sight. "We feel lighter after talking like this," she says.

Spike took time off his job as a youth worker. "It was like being a single parent," he says. "I knew Adam would prefer Lynn to be with him at the hospital and I got the boys to school." But they kept Adam at home as much as possible, refusing to wait for hours in hospital, phoning for test results and bringing Adam back if necessary instead. They were on borrowed time and they also had three other boys to look after. "We put the boys before everything," says Spike. "We've always put them first and I think that's what's kept us going."

Lynn and Spike felt they should be able to fix everything for their boys, including their sadness. They couldn't. Richmond's Hope took that pressure off them, teaching the boys that loss couldn't be cured, just lived with. "We all have a part to play in the family," says Lynne. "Now we just have a big hole." The voice that has held such composure, finally cracks.

In the upstairs playroom, Paul, Marc and Scott have lost their subdued reticence. The noise booms down the stairwell. "Come in here," they say, showing the way into the volcano room. A soft "guy" is slumped in the corner.

They can knock lumps out of that guy when they feel angry, they say. There's a joy in seeing them in here, noisy and boisterous, jumping and squealing. Three little boys making a noise to cover the silence, creating positive activity to cover that gaping hole.

DONNA Hastings thinks she has the best job in the world. Privileged. "I am blessed every single day to be here," she says. Of course there's sadness, but it's in places like this that you often see the best of people. You learn constantly.

A few years ago a 13-year-old boy was referred to her. Both his parents had died. He had five sisters and his grandfather had taken over caring for the family. A wonderful commitment — but the grandfather was of a generation that felt boys should not cry. Nor did they need cuddled.

But, the boy told Donna, it was a cuddle from his mother that he missed most. He asked if they could buy a pillow. Inside, he put a photograph of his mother and some keepsakes. That way he could hug her again. There has not been a child through Richmond Hope's doors since then who has not chosen to make a memory pillow.

Children who come here are changed by the experience. Yet funding has become increasingly political. "Projects like this are fantastic," says clinical psychologist Joyce Davies, who works in private practice in Scotland.

"We need more and we need statutory services as well, but the reality is that in the current climate, services are folding and collapsing. The church is an area that has developed services where statutory services are failing."

But this isn't just about recessionary cutbacks in public services. It's about projects like this, that once managed a nibble of the lottery cake, being pushed aside as the ever-hungry Olympics guzzles the lion's share.

It will be the personal commitment of staff, argues Davies, that determines the future of these voluntary projects.

Richmond's Hope was started seven years ago by minister Liz Henderson and project worker Jessie Douglas. Douglas had lost her 29-year-old son Andrew in a motorcycle accident and he left behind a young son. Douglas's own mother had died when she was just 15 and she had been told to babysit for a neighbour rather than go to the funeral, a decision she regretted all her life. She wanted a healthier approach for her grandson, one where children's needs and wishes were considered.

Children as young as four can understand the concept of permanence, which is why euphemisms about "going to sleep" can be harmful. A sleeping person wakes up again. But one of the hardest concepts for children to accept is suicide, particularly of a parent. Rather than being wrenched away, the person who is supposed to love and protect them has gone willingly.

In the Brown family home in Loanhead, Kayleigh, 19, and Sarah, 15, are talking with their mother Lorna about the suicide of their father Alex in 2008. Chris, 15, is stretched across the floor, his body forming almost a defensive barrier. "Chris never really talks about it," says Lorna, 50.

"I don't like talking about it," he mumbles. But he listens.

The Browns had just been on holiday to Rhodes, the week before Alex died, aged 47. A brilliant holiday, they agree. Alex had been on great form, except … his and Lorna's silver wedding was in a couple of weeks and whenever she asked about celebrations, he said they'd talk later.

And there was that time Kayleigh spoke to him about money for something and he bit her head off. Kayleigh was such a daddy's girl. She was playing with his shoulders one day and he suddenly shouted: "Will you stop it!" "That's not my dad's character at all," says Kayleigh. But often in life, it's only when it's too late that you see the pattern of events, and understand their meaning.

It was a Friday when he died. Lorna works in a police emergency call centre and phoned Alex that afternoon. They had friends coming round later that evening. What would they have for tea? Alex said he had a home visit to do and would be back after six. As a housing officer, he often did visits, but it didn't occur to Lorna that he never usually did them on a Friday afternoon.

Alex waited until he knew Lorna's shift had finished, then phoned the police. He told them exactly where a body was hanging at Roslin Glen and hung up. When the police phoned back, his phone was switched off.

Back home, Lorna and Kayleigh were arguing. They often do, they say cheerfully.

"I want to speak to daddy!" Kayleigh shouted, and Lorna said fine, phone him. "I wish I had," says Kayleigh. It wouldn't have made any difference, Lorna insists. His phone would have been off. Then the police arrived and gradually the house filled with relatives. Lorna was bundled upstairs with officers, then Kayleigh pushed her way into the room insisting if there was any news, she was going to hear it too. Chaos. Later the silence came.

Alex had left 11 letters in the car. The police wouldn't give them to his family immediately. Kayleigh hated that, someone reading her letter before she did. Lorna's letter revealed that Alex was 70,000 in debt on credit cards. She hadn't known.

Perhaps, she says, she buried her head in the sand. "But it could all have been sorted if he'd said to me. We could have sold the house and started again. I'd rather live in a caravan and still have him here. But Alex had to do everything for himself." "He was too proud," says Kayleigh.

He was also a committed Christian, says Sarah. He said in his letter to her that he knew he was going to meet his Lord. "He said I wasn't to blame God for what he'd done because it wasn't God's fault." Sarah seems like a quiet, gentle girl but she became violently angry.

She ended up in hospital with an injured hand after lashing out physically. She even hit Kayleigh once. Sarah smiles, flushing slightly as her family tease her. A devil child but a lovely girl really, they say. "I was angry because he grew up without a dad," Sarah explains. "He knew what it was like." Is she still angry? "No, not any more."

About six months after her father died, Sarah simply broke. "I found her lying on the floor in her bedroom," says Lorna. "She was roaring. She said, 'I can't take this any more. I need help.'" Her doctor diagnosed depression.

She had already been, somewhat unwill-ingly, to Richmond's Hope but returned, committed this time. One thing was key in her healing process. Her project worker and the police took her to the spot where her father died. "I had a lot of images of where it was because I had walked there a lot but I didn't know for sure. I had a lot of questions I wanted to ask the police. I wanted to know everything and I was told everything."

Lorna says she doesn't know where the family would be without the project and both girls are so grateful, they volunteer there. Sarah goes to get her box of Richmond's Hope work. Inside is a letter to her father. "All that I have left to say," she writes, "is that I love you and will never stop. I know I say sometimes that I 'hate' you and please forgive me for this. Thanks for all the happy memories you left behind. Thanks for being my dad for nearly 15 years."

Perhaps the most ironic part of this story is that Alex might not have died if he had been helped himself as a bereaved child. Lorna believes money was not the only problem, that he had unresolved issues from the trauma of his own father's death. "When his father died, one of his relatives took him aside and said, 'You are the man of the house now.' He took that literally. Someone said it to Christopher the night Alex died and I said, 'Don't you dare…'"

Christopher is the family clown, funny, dry, but not without his own anger. It distressed him how quickly he forgot things about his father and he concentrated on memory work at Richmond's Hope. He may, says Donna Hastings, one day want to focus on other things.

Christopher says that although he doesn't want to talk, I can read the school essay he started today about his dad. It contains his last memory of his father. "As he left for work," he writes, "he pressed his unshaven chin on the top of my head and said, 'See you later little man.'" His ambition is to make his English teacher cry. He says it with all the humour and relish of a teenage boy, concealing something else entirely.

This article was first published in Scotland on Sunday, 22 August, 2010