Libby’s key role across Gippsland

Imagine dealing with the pain of knowing that your child is going to die. Thinking about your child’s funeral, and even discussing it with them, is something that many parents simply couldn’t face.

That’s where Very Special Kids Family Support Team come in.

While the main role of a Family Support Practitioner is to provide counselling to families with a child who has a life-limiting condition, they wear many hats such as advocate, social worker, navigator of the health system, and networker.

Family Support Practitioner, and trained Family Therapist, Libby Roden works throughout the Gippsland Region supporting more than 50 families. It’s a vast region that requires lots of travel which is why having someone like Libby in the community is highly valuable.

What makes Libby’s role unique in the region is the end-of-life support she provides to families who choose to have their child die at home.

This was the case for a 17-year-old boy Libby was supporting, who had an aggressive brain cancer. Despite being diagnosed at the age of six and recovering, the cancer returned and he was given weeks to live.

Libby soon became one of the key people helping to ensure that his time left was as rich and comfortable as possible. She became involved in the funeral planning; was able to facilitate the difficult conversations between the family; she was the counsellor to all family members; she worked with local health providers and would identify gaps; she arranged financial counselling for funeral costs, and she also made sure his dying wishes were met.

“I basically make sure this time is as stress-free as possible. This young man comes from a large blended family who are very close. We’re talking 30 aunties, uncles, cousins, step-siblings, and it was his wish to have one final dinner all together. Because of his health, they couldn’t go to a restaurant, so I was able to work with social workers at The Royal Children’s Hospital to get some funding to put on a dinner in his home. And we did it, just before Christmas,” she said.

He also wanted to leave his parents behind some special jewellery with a piece of him on it, and Libby too, made sure that happened.

When he died, Libby continued to support the mother and father emotionally. She had also  spoken with this young man about what he wanted at his funeral.

“When he died, it was just the family and I left to debrief. When the role of other health providers ended, ours continues, and I think that’s what makes Very Special Kids so unique,” Libby said.

Libby continued to counsel each family member, including his three-year-old sister, to help process their loss.

“I was able to spend some time with his little sister; she would go outside every night before bed, look up to the sky and grab a star, put it in her pocket and take her brother to bed with her every night. For mum, that was so comforting. Our role is to provide a safe space to let people grieve in the way they want to with no judgement because we recognise everyone deals with grief in their own way. There is no right or wrong way to grieve,” Libby said.

Libby continues to support the family nine months on and will continue to do so for as long as they need.

“It’s usually the years after that are the hardest, two-three years on, and we are still there, we won’t go anywhere as long as the entire family needs us – aunts, uncles, grandparents included,” Libby said,

Libby has been with Very Special Kids since 2017. She is a trained Family Therapist and her career has spanned across domestic violence, substance abuse, suicide and child abuse.

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