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Mia’s goodbye
August 7, 2026
Dying to Know Day encourages open conversations about death, dying and grief, helping build understanding so people feel better prepared and supported when loss touches their lives.
For families supported by Very Special Kids, these conversations are part of everyday life. They are deeply personal experiences that are navigated with compassion, care and the support of people who understand what families are facing.
For one family, that care provided something precious in the midst of unimaginable loss – time with their very special child, Mia.
Thirteen years together
For 13 years, Mia defied expectations.
As her mum Margie shares:
“Mia’s doctors said she would never leave hospital. They said she wouldn’t make it to her first birthday. We celebrated 13 amazing birthdays together.”
Born with an extremely rare brain malformation called holoprosencephaly, Mia required around-the-clock complex care.
Over time, Very Special Kids became a trusted part of family life. Through respite care, family activities and support, Margie found comfort knowing Mia was in safe hands.
To me Very Special Kids means trust.
The children’s hospice is the only place that I can feel Mia is safe when she’s not in my care.
While Mia lived with complex medical needs, her family continued celebrating the milestones, moments and memories they shared together.
Then, one morning, everything changed.
“Mia just didn’t wake up one morning.”
The hours that followed are largely a blur for Margie.
Among the people who stepped in was Very Special Kids family support practitioner Jenn, who has walked alongside the family throughout Mia’s life.
Jenn helped coordinate the practical arrangements that followed, including Mia’s transport to the Balam Balam suite at Very Special Kids House for after death care.
Later that evening, Margie received a call from Jenn.
“Jenn said, ‘We’ve picked up Mia, she’s here with us.'”
For Margie, those words brought comfort at a time when everything felt uncertain.
“I just didn’t want her at the coroner’s, not even for one more night.”
A week with Mia
For Margie, after-death care provided something she never expected to have: time.
A week to sit beside her daughter. A week to hold her hand. A week to begin saying goodbye.
The private, home-like Balam Balam suite gave Mia’s family the space and privacy to spend quality time together.
Friends and family could visit when it felt right. They could come and go as needed, while the nursing team provided specialised care for Mia’s body.
Reflecting on that time, Margie says:
“In that week she was there, it was when I was at my most peaceful.”
After such a sudden loss, it also gave her the opportunity to begin saying goodbye.
“Because we didn’t get time to say goodbye. It was time for me to say goodbye.”
Throughout the week, Margie maintained physical contact with Mia. Staff helped create precious keepsakes through memory-making activities, while family and friends spent time together sharing stories and memories.
“It was beautiful, the little things that I would never have ever thought of.”
Support extended beyond Margie alone. Jenn helped young family members understand what had happened to Mia. Family accommodation, meals and practical guidance eased some of the burden during an extraordinarily difficult time.
A final farewell
When it came time to say goodbye, Mia’s life was honoured at Very Special Kids House through a Guard of Honour.
Very Special Kids staff lined the hallway and gathered outside the hospice, standing together in tribute as Mia’s family and friends came together for a final farewell. Surrounded by the people who loved her most, a song was sung in Mia’s honour before she was transported to her final resting place.
One memory from that morning has stayed with Margie.
A nurse who had helped care for Mia the night before had returned after finishing her shift, simply to be there and pay her respects.
“People came back from night shift for Mia, to say goodbye.”
For Margie, those small acts of care spoke volumes.
“You couldn’t make that up.”
Beyond Balam Balam
For Margie, what stands out most is the trust she has in Very Special Kids.
We trust Very Special Kids with our kids when they are alive.
We can trust them even more when they’re not here.
Like many bereaved families, grief support did not end when Margie’s family left the Balam Balam suite.
“I’m so appreciative of what Jenn and Very Special Kids did in the next few weeks and even up to now.
“My family remembers her and the impact she had, she always made herself available and helpful.”
Through counselling, peer support and bereavement programs, she continues to connect with others who understand her experience.
One of those places is a Very Special Kids scrapbooking group, Creating Memories, where she creates keepsakes of Mia alongside other bereaved parents.
“You feel safe. You feel safe to be a grieving mum.”
Through life, death and beyond
At Very Special Kids, support extends far beyond clinical care. Families can access respite, counselling and sibling support, as well as end-of-life care, after-death care and bereavement support, all provided free of charge.
Whether a child’s death is expected or unexpected, families are given the time, space and compassionate support they need to navigate what comes next.
For Margie, that support continues to make a difference every day.
And for Mia, it helped create something precious: the time for her family to say goodbye.
