The Changing Ladder of Life – Guest Blog by Justine Perkins, founder of touched by olivia
Recently, a friend of mine gave me some interesting advice. We were chatting about different stages of life, (as you do) and she said – “Justine, the first 40 years of a person’s life is all about ego. It’s about grabbing your ladder, placing it up against a wall and making your way to the top as fast as you can. The next 40 years, however, is realising that you’ve put your ladder up against the wrong wall!”
Well, I hadn’t quite reached my first 40 years, in fact I was only 36 years old, and my ladder…although, it was well and truly fixated against a wall, it was in “pause mode” whilst I took time out to have children. Prior to starting my family, I was a corporate lawyer and fully intended on returning to work after my maternity leave dried up.
I was enjoying life as a Mum of my 2 year old son, Will, and my 4 month old daughter, Olivia. My husband and I were planning 2 more children and I felt pretty lucky to have been blessed already with a boy and a girl, when we found out, with great surprise, that we were pregnant with our third.
I stumbled through the first trimester and was just starting to feel “normal” again, when without a word of warning, my world was suddenly torn apart. Olivia became sick and was diagnosed with a rare disease called Lymphatic Malformation. She died 2 weeks later in hospital. She was only 8 months old.
Just when I thought my life was all planned out in front of me, my wall wasn’t my wall anymore. They say time heals all and eventually life goes back to normal. Well, for anyone who has suffered such as loss or experienced pain of this magnitude, life is not and will never be, the same again. My ladder had moved forever.
In the short time Olivia was with us, my husband John and I experienced so much more than just being every day parents. In those 2 weeks after Olivia’s diagnosis, John and I trekked every day to the hospital in the hope that a treatment would be found and Olivia’s condition would improve. Olivia had been placed in an induced coma and we could only watch and touch her little body, which was plugged into numerous machines. Even to cuddle her became an extremely delicate exercise as any movement could potential compromise her already very fragile state.
Obviously we weren’t the only ones stricken with panic, grief and helplessness. In every other bed in the intensive care unit of the Sydney Children’s Hospital lay a seriously ill child, surrounded by desperate family members.
We met many of these families. We would feel happiness, mixed with a sense of loss, when families left and were able to take their recovering child with them. We wished it were us.
I still remember walking back to our car that horribly dark Monday that Olivia died, knowing we wouldn’t return the next day to see her. We had said our goodbyes.
Through Olivia’s loss, I have learnt so much. I miss her terribly everyday and although there is a massive hole in my heart, I have been fortunate to find a new wall for my ladder.
The wall is now bright pink and is called Touched by Olivia Foundation. It is a charity founded in Olivia’s memory and represents the bigger picture lying behind Olivia’s death. That picture is filled with children and their families who struggle on a day to day basis to enjoy the very basis of human life – play. Our charity’s mantra is “Inclusion through Play” and is fuelled by the increasingly startling statistics that many children are getting fatter, sicker and sadder, and society is not doing enough to bring about a positive change.
Many people do not know that:
- 1 in 100 kids have Autism
- more than 25% of Australian children spend in excess of 4 hours a day on screens
- 25% of children are considered overweight or obese and that figure is on the rise
- Overall, 1 in 5 Australians have a disability
Touched by Olivia Foundation isn’t just a charity to help me heal and cope with my pain. It’s much more than that. It’s about giving a little baby girl, my daughter Olivia, a lasting legacy, by building an inclusive society through play.
Through Touched by Olivia Foundation, we collaborate and partner with councils, developers and local community groups to create inclusive playspaces. They are called “Livvi’s Place”. We now have a National Network of Livvi’s Places spanning around the country and we have only really started! These places are very special. They are places where people, young and not so young, can come and play, side by side, regardless of ability.
From our Livvi’s Places, we can connect communities far and wide. We run programs within our playspaces, such as Storytime and craft, and we have just opened our first Social Enterprise Café, at our Livvi’s Place at Five Dock, where we support the employment of people with disability to help them integrate into mainstream employment.
We operate on the smell of an oily rag. Rebecca Ho, our Executive Officer and my dear friend, is our powerhouse. All of our overheads are privately underwritten, which means 100% of funds raised will go straight to supporting our cause of inclusion through play.
But back to my ladder, and here’s the real surprise. Sure, I may have found my new bright pink wall to place my ladder up against, but now there’s no climbing. In fact, weird as it may sound, my quest is that Touched by Olivia Foundation becomes redundant. What we do, should be done as a matter of course. Inclusion through play, it’s a no brainer!
I always feel the need to finish my writing with a call to action. Like my children, I have found that many people are great at doing what they are asked. It’s in taking the initiative that things can break down before anything really gets started. So, to my readers, there are many ways you can play your part in building a more inclusive society with play at its very heart.
- ask yourself how inclusive is the neighbourhood in which you live?
- how many families do you know who struggle to find a place for their children to play?
- how tolerant and accepting are you, and the community in which you live, of people with additional needs? eg, Does your local sporting club foster children with additional needs in mainstream sport?
- how often do you, or your children, actually play?
Because, as the great philosopher Plato once said:
You can discover more about a person in an hour of play, than in a year of conversation.
So, please feel free to come and hang out with me at my bright pink wall. Because, together we can create a more inclusive society, for children and their families, to play.
Thank you to Justine for sharing this very personal story and for your family contributing to a more inclusive society. If you would like to know more about Touched By Olivia head to their website here.
Our family are big fans of Touched By Olivia, the Perkins family and the fabulous Bec Ho who puts her heart and soul into making sure we have as many accessible play spaces in Australia as possible.
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Claudia Bruckner says
fun things to do are always amazing for both adults and kids so a fun park with kids and their wheels would be amazing here in Redcliffe, Queensland. Bbs (bruckner babes)
Hi Claudia, I know the Touched By Olivia Foundation have lots of plans in the works but I don’t know if Redcliffe is one of their proposed locations. You could always drop them a line and encourage other families to join you in a push for one for your area. Good luck Julie