Seeing a child die seems to be against the natural order of things, so how do we provide that special support to a family who is travelling this road?
In 1994, two families met while caring for their children who had leukaemia, and found that there was no appropriate support for families of children with life-threatening conditions.
The following year they met Roman Catholic nun Sister Margaret Noone, and together they established Very Special Kids (VSK), with Sister Margaret as the organisation’s first employee and director.
More than 30 years later, VSK supports more than 900 families who have a child with a life-threatening condition, providing free counselling and support services, trained family volunteers and specialist care at the Very Special Kids Hospice.
So why was a Roman Catholic nun the right person to head up a trailblazing organisation dealing with momentous life and death issues for children?
Sister Margaret had been a teacher for 20 years before she travelled to America to study theology at the University of California, Berkeley. While there, she began to volunteer and work with children affected by life-threatening conditions. On her return to Australia, she brought this passion with her.
In 1996, Sister Margaret established the Very Special Kids hospice, which was the first paediatric hospice in Australia, and in 2000 she was recognised for her work by being made a Member of the Order of Australia (AM).
So where did this burning need to make a difference come from? Being a nun was not always on Sister Margaret’s wish list for her life.
“I was busy enjoying life but in the back of my mind there was always the feeling I needed to do more, and to follow a calling,” she writes on the Very Special Kids website.
“That led me to join the Loreto Sisters. It was a hard choice to make, thinking of all I would have to give up, but I knew I had a passion for caring and wanted to benefit the lives of others.”
You might think that the establishment of VSK was welcomed with open arms by the medical world, but Sister Margaret says this was not always the case.
“In the early days there was some opposition in the medical fraternity to the type of services we wanted to provide—initially it was difficult for them to see the need for additional support that was not always medical, and provided by hospitals,” she recalls.
“But now there’s more understanding of the effects on the whole family and their community when a child has a life-threatening condition, and there’s also more acceptance of the profound impact support services like Very Special Kids can have,” she explains.
While she is now retired, Sister Margaret remains very involved with VSK and is the organisation’s patron.
Warcry asked Sister Margaret what has moved her most in her involvement with VSK.
“Having been involved with Very Special Kids for over 32 years, the most moving experiences have been meeting so many brave and courageous children, and their families.
“The one constant thing has been the strength and courage displayed by these children and also their siblings. I am so thankful for their love, compassion and perseverance in the face of adversity,” she tells Warcry.
And she is proud to give credit to her Christian faith for making such a difference to children and their families.
“My faith has been an ever-present foundation enabling me to reach beyond what I think I can achieve alone.”
Wise words from an inspiring woman who has followed Jesus’ example and cared for those in need.