Annual camp at Bear Cottage children's hospice provides a safe space for the 'forgotten mourners'

Every year, a small group of grandparents gather together on the northern side of Sydney Harbour for a camp that honours the grandparenting role in family life.

Unlike typical celebrations of childhood, the families at this gathering all have a common connection to Bear Cottage, a children's hospice based in Manly.

Bear Cottage's registered art therapist, Judy King, has facilitated the camp since 2016 and said grandparents were often the “forgotten mourners” when a child had a life-limiting illness.

Judy King says grandparents experience an unique type of grief when a child is sick.(ABC News: Jerry Rickard)

“We were noticing how important grandparents were in the scheme of things,” she said.

“And there was a lot of support for mums, the dads, for siblings, and it's almost like the grandparents are the forgotten mourners.

“They're grieving for what their son or daughter is going through, and for their grandchild.”

Grandparents 'don't always reach out'

Bear Cottage will turn 21 this year.

It is the only children's hospice in New South Wales and is part of the Sydney Children's Hospitals Network. It offers end-of-life and respite services for children who are very ill, as well as ongoing support to families.

Ms King said it was often grandparents who rose to the challenge of looking after siblings and caring for a sick child and their parents.

“There's not always a lot of support for them. There is a generational thing of 'We just get on with it',” she said.

“They don't always reach out.

“They look after everybody else and do not always look after themselves. And so we really try to provide a space where they can share.”

Grandparent Don Wheeler and his wife Christine moved to Sydney from Brisbane when their grandson Levi was diagnosed with a brain tumour and given nine to 12 months to live.

Christine and Don Wheeler moved to Sydney to support their grandson Levi and his parents. (ABC News: Jerry Rickard)

“I think we just wanted to be here to do as much for Ben and Kath [Levi's parents] as we could,” he said.

Levi passed away at Bear Cottage on New Year's Eve in 2018.

The family has channelled its energies into Levi's Project, which raises funds for research into the rare brain tumour Diffuse Intrinsic Pontine Glioma (DIPG).

Levi was diagnosed with a rare brain tumour when he was seven years old. (ABC News: Jerry Rickard)

Mr Wheeler said the family talks about Levi every day to keep his memory alive.

Dealing with feelings of guilt and anger

Joanne Gallen is the grandmother of 10-year-old Xavier — who has a number of ongoing medical challenges and uses Bear Cottage regularly for respite — and has now been to three of the camps.

“You can say things that you can't say to your children and you share things that you think are very dark, but it's really hard to open up with other people that don't understand what you're going through,” she said.

A collage of photos featuring Joanne (bottom right), Xavier and his family.(ABC News: Jerry Rickard)

Ms Gallen said the medical support at the cottage allowed the family to simply enjoy Xavier and their other children.

“It's a place where the family can relax and have time out from the hard caring of a palliative care child. They're fantastic,” she said.

The camp is an opportunity for grandparents to take some of the load off, according to Ms King.

Judy King and Xavier's grandmother, Joanne Gallen.(ABC News: Jerry Rickard)

“I often see grandparents be really brave and stoic, and because they just want to support their child, and they want to support their grandchild and the other grandchildren,” she said.

“There's sometimes some guilt … there's sometimes some anger, although that's not usually shown.

“This is the space where we allow that.”

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