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A Father’s Day reflection
Written by Nigel, bereaved dad of 17-year-old Olivia who had FoxG1 syndrome and cerebral palsy
August 29, 2025
Father’s Day is often a time for celebration, but for me it has become a day of reflection – looking back on the precious time spent with my daughter Olivia and the incredible support we received from Very Special Kids.
When Olivia entered palliative care, life was turned upside down.
As a father, I wanted to protect her, provide for her and give her a sense of comfort and safety – but the situation was completely new and nothing could have prepared me for it.
Very Special Kids gave me the tools to continue being her dad, even in the most heartbreaking of circumstances. The hospice gave me structure and routine, something steady to hold on to when everything else felt uncertain.
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 – as a whole family.
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.
The onsite houses allowed me to stay close enough to Olivia to never feel distant, but also gave me the space I needed when emotions became overwhelming.
That balance of closeness and space was something we didn’t know we needed until we had it.
When Olivia passed, the Butterfly Room (also known as the Balam Balam suite) offered me and my family a place of peace.
Family and friends gathered there to spend time with Olivia, to say goodbye and to reflect.
As her father, it gave me the chance to stay close to her, to sit with her and to honour her life with the dignity and love she deserved.
Very Special Kids gave me more than just support during Olivia’s journey – they gave me the chance to still be a father in the truest sense.
They made sure that Olivia’s final months were not just about illness, but about comfort, love and togetherness.
And for me, they gave the strength to keep showing up as her dad, even in the hardest moments.
This Father’s Day, I will carry both the pain of loss and the gratitude of having had that time with her.
Without Very Special Kids, I don’t know how we would have survived those 15 months. They made it possible for me to keep being Olivia’s dad, and a father for the rest of the family – something I will treasure forever.
Olivia 28/4/06 – 19/3/24
