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Tae Yoon’s story
August 8, 2024
With mixed emotions, Seol stepped into the Balam Balam suite at Very Special Kids House, where she had said her final goodbye to her late son, Tae Yoon.
The peaceful suite, bathed in soft light, is the keeper of gentle memories of the last moments shared between a mother and her beloved child after death.
Tae’s body was brought to Very Special Kids House – a place where families have the time to breathe, grieve and remain together while they plan the next steps in caring for their child.
As Seol reminisced about her son Tae’s stay in November 2023, a calm smile broke through her sorrow.
“It’s very sad, but it’s in a way happy-sad,“ she said, her voice reflecting the bittersweet memories that filled the room.
Born in Korea, Tae faced numerous health challenges from the very beginning. “When he was born, he had an infection, and we found out that his white cell count wasn’t normal,” Seol recalled.
This revelation marked the start of a journey with ongoing hospital visits and medical uncertainties. When Tae was three, the family relocated from Korea to Australia with Tae and their newborn daughter Lea.
At six, Tae was diagnosed as autistic with a sensory disorder and chromosome deletion, but the health condition relating to his blood remained undiagnosed.
The family continued to seek the best care for Tae but still, his immune system was significantly compromised, with illnesses as simple as a common cold impacting his health for weeks and sometimes resulting in hospitalisation.
Despite the medical interventions and frequent hospital stays, Tae had grown into a bubbly and social 11-year-old and always remained full of positivity and joy. “He loves people. His favourite people are new people. For him, there’s no stranger,” Seol shared, her face lighting up with the memory of Tae’s open-hearted nature.
Life for the family took a darker turn in 2019 when Tae’s father, Greg, was diagnosed with cancer. “Greg was very healthy; it was a shock” Seol explained. The cancer was aggressive, and after a short battle, Greg sadly died.
The isolation of the COVID-19 pandemic compounded the family’s grief.
“We were grieving, but Tae helped Lea and me a lot. He would say, ‘I miss him, I miss him, I miss my dad,’ and that helped us to talk about him daily.”
This routine of sharing memories became a way for the family to heal, even as they faced the uncertainty of Tae’s health.
Towards the end of the pandemic, Tae’s health began to deteriorate. “He was pale, weaker. His stamina was lower than before,” Seol said. A visit to the emergency room revealed that Tae’s blood cell counts were dangerously low.
Tae’s medical team informed Seol that Tae had a genetic condition that impaired his body to produce healthy cells, the only hope was a bone marrow transplant.
“For a month, I didn’t talk to anyone. I just didn’t want to talk about anything,” Seol confessed. Yet, through the complexity and fear, Tae remained a source of strength and resilience.
He wasn’t anxious. He just took it as normal. That was Tae’s ability, his superpower, really.
When it became apparent that Tae needed a second transplant, his palliative care team introduced Seol to Very Special Kids and its support services.
“I was so worried about Lea because I spent most of my time at the hospital with Tae. But Very Special Kids provided sibling care, counselling, and support that was crucial for her,” Seol emphasised.
Although heartbreaking, Tae’s final days were filled with endless love and laughter.
His generous spirit shone through to the end as he handed out chocolates to the medical staff. “He always wanted to give out something,” Seol said, recalling Tae’s request for a big bag of chocolates in his last days.
After his death, the family moved to the Balam Balam suite at Very Special Kids House, a place where they could grieve and say goodbye to Tae in their own time. Balam Balam means butterfly in Woi wurrung – the language of the Wurundjeri-willam people of the Kulin Nation – and embodies tranquillity and peace.
“We spent about a week there. It allowed us to be with Tae’s body, to process his death in a way that felt right for us.”
This time was not just for her but for Lea and Tae’s aunties, who travelled from Korea.
“My sisters are forever grateful they could process it this way,” she added. With its bright, homey environment, the suite provided a space where death was acknowledged but not feared. “We don’t find it negative; we just talk about how excited we’ll be to be reunited with Tae someday,” Seol shared.
Seol’s grieving process for Tae was markedly different from that of her husband. The sudden removal of Greg‘s body from the hospital had left her feeling lost and alone. In contrast, Very Special Kids allowed her to take the time she needed to part with Tae.
I was terrified that the same thing would happen with Tae, but the Balam Balam suite made it a beautiful memory rather than a dark one.
Tae’s sister, Lea, also found solace in the hospice, participating in music therapy and other activities that provided a sense of normalcy amidst her grief.
Seol’s advice is straightforward and heartfelt for other families navigating palliative care.
“Don’t be afraid of the word ‘palliative.’ It can be the best way to handle the worst thing in your life.”
She emphasised the importance of preparing for the end as a celebration of life rather than a purely sorrowful event. “Tae’s last journey touched so many people and taught us invaluable lessons about life and death,” she said.
The support from Very Special Kids, with its comprehensive care and compassionate approach, has made a lasting impact on Seol and her family. “It’s a bright memory in the darkest part of our lives. Everyone deserves this if they want it.”