The death of a child is every parent's worst nightmare, but a new support group called Anam Cara aims to help the bereaved cope with their grief, writes Róisín Ingle
Sharon Vard's daughter Rachel was five years old when she was diagnosed with a rare and inoperable brain tumour. If the consultant had "run the length of the room and kicked us both in the stomach he couldn't have shocked us more", she says of the moment four years ago in the Crumlin Children's Hospital in Dublin when she and her husband Aidan were told of her daughter's condition.
On the same day, in the same hospital, Anna Coen-McGroddy and her husband Paul were coping with equally bewildering news. Their five-year-old son Eoin was diagnosed with the same type of rare, inoperable brain tumour and was given less than a year to live.
"It was a gorgeous, hot, July day," remembers Anna. "As we came down the corridor we saw this beautiful little girl in a lovely lemon dress, black bobbed hair and big, red rosy cheeks. We had been told there was another couple with a child who had the same condition as Eoin. I would never have thought it was that healthy girl who turned out to be Rachel but when I saw the faces of Sharon and Aidan I knew they were the other couple."
Both women are two of a group of eight founding members of Anam Cara - "soul friend" in Irish - a new support service set up for bereaved parents and siblings which will be officially launched in Dublin tonight. "That day I just went over to Anna and put my arms around her," remembers Sharon. "We were there for each other right from the beginning."
When both children passed away, Rachel after five months, Eoin after 11, the friends supported each other in their grief and gradually the idea for Anam Cara took root.
"We would spend hours on the phone," says Anna. "We could talk about the kids without becoming too upset because we had gone through so much together. Talking to other parents it was obvious there was a real need for a support for people who were going through this uniquely tragic experience. When your child is born the last thing you expect is that they will be taken from you. Eoin was just becoming a little boy, he had six freckles down his nose, he loved drawing and singing . . . In Anam Cara you can take off the mask, breathe a sigh of relief and just be with people who understand."
IN THIS WAY the organisation is something of a sanctuary for those who have lost children. The group holds events, coffee mornings and picnics all over the country and offers presentations on childhood bereavement to other support services. The women make it clear that Anam Cara is not a counselling service, although it does provide links to such organisations on their website. It also offers information on coping with grief, self-help and tribute pages which keep the memories of their children alive.
It's a lifeline for many. John and Fiona Farrell were on holiday in Spain when their 15-month-old son Daniel died suddenly in the early hours of the morning. It was June last year and the grief is still raw.
"I still can't believe it," says Fiona, battling the tears, in the couple's home in Co Dublin. "That night he was running around, he was playing, he was perfect. He just went to bed and he never woke up."
Being away added to the trauma as did the agonising three-month wait to discover what had happened to their son. The Spanish post-mortem indicated pneumonia but the couple insisted that another report was done in Ireland and this found Daniel suffered from a heart condition, an extreme case of hypertropic cardiomyopathy which causes the muscle mass of the heart to enlarge, obstructing the flow of blood.
"Knowing why he died and that there was nothing we could have done meant a weight lifted, I slept properly for the first time, but of course there was a whole other weight coming at us," says Fiona of those early days trying to find sense or meaning in Daniel's death.
The isolating effect of grief is almost impossible to bear, say the couple. "You feel totally and utterly alone. People mean well but they can say silly things like 'Oh you've an angel in heaven, now,' and you want to tell them, 'Get lost, I don't want an angel in heaven, I want my son,' " she says. An appointment with a bereavement counsellor was "one of the worst experiences of my life", says John. "It did nothing for us, we needed something else."
When his wife first got involved with Anam Cara, he was wary. "I thought it would be this group of people sitting around depressed and miserable, I worried it would only send Fiona deeper into her grief," he says. "It's a club nobody wants to be a member of, they all have horrific stories, but what I saw was that the group had an incredible amount of positivity, they could offer help and the most important thing was that there was that immediate connection of everyone having lost a child."
They describe Anam Cara as "a safe space" where they can talk about their child, or break down, or just be silent in the company of people who understand exactly what they are going through.
"Sometimes when I go to talk about Daniel to people I nearly feel like I am inflicting myself on them. I have some great, supportive friends, and close family, but it feels sometimes that, until you meet somebody who has been through it, nobody understands," says Fiona.
She got Sharon Vard's number through the Sunshine Home in Dublin. "I called her, just babbling on the phone, and she arrived as soon as she could, telling me all about Rachel," remembers Fiona. "It was the first time I didn't feel so alone. When you lose a child people run from you and avoid you because they feel so uncomfortable with the whole thing. When someone else has been through it there is an immediate bond."
FOR JOHN, ANAM Cara meant not having to mask his feelings any more. "You don't have to pretend with them like you do with others. I am back at work full-time now and while initially some people would talk to me about him, now very few people in work would mention Daniel's name, and that's tough, like he never existed," he says. Even in their grief the couple enjoy talking about Daniel's infectious belly laugh, his charm, his love of football, his delight in big sister Sophie's dance routines. Anam Cara has also helped the couple make sure that five-year-old Sophie's grief and loss is acknowledged - she keeps mementoes of Daniel on a small table in the sitting room.
"One of the most important things is that Anam Cara helps keep your own child's name alive," says John.
Dubliner Philip Manly lost his 25-year-old daughter Pamela in a road traffic crash in June 2005. While he feels that men grieve in "a different way", he says Anam Cara has provided solace for both himself and his wife Dolores. "It's so important that this group exists," he says. "You only have to open a newspaper to see that every day there are more parents going through this, whether it's a road traffic accident or an illness. Anam Cara is like a bridge that can lead to healing for those people."
The parents of Anam Cara speak of "markers". Six months, a year, birthdays, Christmas. They see people who are three months ahead of them in the cycle of grief and this provides encouragement that they might make it to that marker eventually too.
"We are all watching each other," explains Sharon Vard. "I know I can get to the next marker because someone up ahead is there and behind me people are watching, getting encouragement from my progress."
She says losing a child is like "arriving in a different country, where you don't know the language". People cope with this new and frightening territory in different ways. In the darkest period, she dug a garden for Rachel with her bare hands. "It was her patch," she smiles, thinking of the place where miniature deer peek out from under shrubs.
"I started growing things after Rachel died. The house was full of seeds. I just needed to nurture things and that got me through some very dark times. People cope in their own ways. We don't tell people what to do but we could say 'this helped me' and we hope the experiences of others on our website might provide inspiration for someone else."
Anam Cara will be officially launched this evening in Dublin Castle by Taoiseach Bertie Ahern. It's a chance for family members to come together to celebrate their children and an opportunity to make other bereaved parents and siblings aware that the organisation exists.
The group is open to the parents, siblings and grandparents of children of all ages who have passed away whether from illness, accidents, drug abuse or suicide.
Anna Coen-McGroddy's brother Reggie died the day before his sixth birthday in 1986. "Back then there were no services, our parents were so wrapped up in their own grief we couldn't talk about it as a family. That's why Anam Cara is so important. Our group is made up of people who understand, who know how to reach out to people and who have been there themselves," she says.
"We are not a sad group of people," adds Sharon. "Yes, we are sad in ourselves but when we are together there is comfort and compassion and if someone is having a bad day someone else puts out their hand and pulls them along. That's what Anam Cara represents for people in this dark place. A helping hand."
For more information about Anam Cara, visit www.anamcara.ie
