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The different shades of goodbye
August 8, 2025
End-of-life care can look different for every family – plans may shift, expectations may change, and the experience can often be overwhelming. At Very Special Kids, we honour the evolving wishes, needs, and individual dynamics of each child and their family.
Through personalised support, deep listening, and practical partnerships across the state, we help families navigate some of the most emotionally complex and painful experiences during end-of-life, after death and beyond.
Under one roof
When staying close matters most, our onsite family accommodation provides comfort, privacy and emotional sanctuary.
It offers families the choice to retreat, share meals, and welcome extended family and friends – all with the reassurance that our palliative care team is just a few steps away.
Ashley, bereaved mum of newborn Mila who had a rare and fatal neonatal condition shares, “The accommodation allowed us to welcome friends and family when it felt right for us, so they could meet Mila in a calm, light-filled space that felt safe and peaceful.
That privacy and support made a deep and lasting difference in how we were able to process our grief.”
It truly became a beautiful oasis – somewhere we could stay close to Mila, hold her, talk to her, and spend those precious final moments together without feeling rushed or watched.
Easing pain, creating memories
For many families, our hydrotherapy pool is a place of calm during end-of-life care. The sensation of warm water can ease pain, reduce anxiety and allow moments of connection – with siblings and parents often joining in.
Whether used for symptom management or memory-making, these shared experiences often become cherished final moments.
Kelly and Nigel, bereaved parents of 17-year-old Olivia who had cerebral palsy, shares “One of the most precious gifts we were given was time in the Very Special Kids swimming pool. It may seem like a small thing, but for us, it was everything.”
In that warm, quiet space, we were able to hold Olivia, play, laugh, and just be together…For a small amount of time our family was happy and smiling.
It was a special time that we would have never have had elsewhere.
Time to breathe and grieve
After a child dies, the Balam Balam suite offers families a gentle, private space to spend precious time together.
Bathed in soft light, the suite includes a climate-controlled bedroom where families can remain with their child’s body for up to seven nights, allowing time to grieve, reflect, and plan next steps.
Balam Balam is the Woi Wurrung word for butterfly — the language of the Wurundjeri people of the Kulin Nation, on whose land we reside.
I was really truly able just to be with Storme in those last days. I didn’t have to worry about anything else. Food got put under my nose, people came and left.
I was just there just to be able to be beside Storme. And I don’t know another place that would’ve allowed it that way.
Helen, mum of 11-year-old Storme who had neuroblastoma
Returning home
For some families, the wish to return home for their child’s final days is deeply personal. For those living in regional areas, the logistics can make this especially difficult.
One family, newly settled in a remote regional town, was just beginning to build a life in their first home when their child experienced a sudden life-limiting medical crisis. What followed was a whirlwind of hospital appointments, emergency transfers, and a terminal diagnosis – taking them far from home to Very Special Kids House for end-of-life care.
Their child continued to defy expectations, spending eight weeks at the hospice, where staff supported the family to make meaningful memories and cherish time together. Eventually, the mother quietly asked, “Can we take him home?” remembering her son’s words: ‘I love this house, Mummy.’ She shares, “I decided to bring him back to live as a routine family at the end of his life.”
With just days to plan, our team worked closely with 20 health and community partners to make it happen. With the support of Royal Flying Doctor Service Victoria, road and air transport was arranged to safely bring the family 600km back to their hometown.
Their child spent 10 peaceful days at home before his death – a memory they now carry forward.
Leaving Very Special Kids House
Every family’s final farewell is different – some choose to leave quietly and privately, others prefer a more communal goodbye.
For those who wish, we offer a personalised guard of honour: a moving ritual that takes place when a child’s body leaves Very Special Kids House for their final resting place. Staff, family and friends line the entrance to pay their respects.
The farewell may include a favourite song, the child’s face gently visible, siblings walking alongside, or the child being held, resting on a bed, or in a coffin. However the moment unfolds, it is shaped entirely by the family’s wishes.
What stays with me most vividly is watching Gene carry our precious girl in his arms one last time. That image is forever etched in my heart.
Mila’s mum shares, “One of the most unforgettable memories was turning around after handing Mila over and seeing all the staff lined up behind us.
In that moment, we felt an overwhelming wave of support, compassion, and shared grief. It was so beautiful and so heartbreaking all at once.”
Honouring their memory
Some families choose to invite donations instead of flowers at their child’s funeral – a gentle way to continue their child’s legacy and support other families like theirs.
Lucie’s family, for example, requested in-memory donation to Very Special Kids – a quiet, heartfelt way to give back to the community that had supported them.
Kath, bereaved mum of 4-year-old Lucie who had Miller Dieker Lissencephaly Syndrome shared, “We all spent four nights with Lucie at Very Special Kids after she died and we were treated so well. It was extremely sad but also so comforting to be surrounded by such wonderful professionals.”
In a way it helped with our grieving and to have our family and friends close to us during this difficult time at a very comfortable and peaceful place.
When the unimaginable happens, no family should face it alone.
Learn more about how Very Special Kids provides compassionate end-of-life and after death care here.
