It’s been more than two years since I first interviewed Jackie and her family but today I’m in for a special treat. I’ve been invited to her family home out in the rolling hills behind New Norfolk, the place where Jackie grew up.
As with every time I see Jackie, I’m greeted with an enormous smile. She’s sitting at the kitchen table, one no doubt she’s shared much laughter and family time around. Like always, twin sister Anna is right there by her side while their mother, Margaret, pulls open an oven door to release the smell of homemade goodness.
There’s joy filling the house as Anna’s young children play nearby and the twins’ two soggy husbands, Shane and Heath, come in from a country jog through misty rain. Shane is quick to deliver a kiss to Jackie’s forehead and we all settle in for fluffy white scones and jam.
I glance across to Jackie and I’m met with those sparkling blue eyes. It appears nothing makes her more happy than being surrounded by her family. Even the concept of a feeding tube dissolves into laughter of how fortunate Jackie is to ‘enjoy breakfast in bed prepared by Shane every morning.’
Jackie had been given three to five years following her diagnosis, but seven years on she has defied this grim prognosis delivered by the white-coated medical profession. Perhaps they weren’t aware of the heart in that young 25-year-old girl; nor the spirit of positivity that defines Jackie.
The day Jackie told her twin, Anna recalls dissolving into tears. She knew that MND causes nerve cells controlling the muscles to fail and that slowly Jackie would lose the ability to speak, move and eventually breathe.
Naturally, the New Norfolk family were devastated. Yet Jackie remained calm, “I can’t change this news,” she said. “What we’ll have to do is make the most of every moment we have.” And make the most of it she has.
The pair surprised Shane’s parents by hopping aboard a month-long cruise. While they were away, family and friends secretly finished off their dream home; tiling bathrooms, painting walls and landscaping gardens. Anna could not believe the number of people who arrived to help.
This has been a trend in the years that have followed Jackie’s diagnosis. Even the New Norfolk CWA women were astounded at a recent cake stall when cakes flew off the table and they were left with none before they’d barely
gotten comfy to do some knitting.
Together Jackie and Shane have travelled Australia, Jackie in a specialised car seat funded by donations from friends and family. According to Jackie, on the great Australian road trip she had ‘the time of her life.’
Recently Margaret was overwhelmed with the response from an email that circulated at her work to help Jackie. “There were complete strangers wanting to donate and assist Jackie,” explains Margaret, “it began as an email amongst a few colleagues and somehow progressed to donations across Australia. It was just astounding the generosity and desire to help.”
Local people have offered holiday homes, free financial advice, anything they can to make the ride a little smoother for Jackie and her family. And with this support and love, Jackie has continued to take on life with rigour and enthusiasm.
Despite deterioration in her health, over recent years Jackie has achieved much. On unsteady feet Jackie even walked down the aisle as her sister’s bridesmaid, with Shane offering a loving arm of support. And the new generation are equally mindful of Jackie’s needs.
“My daughter Ireland understands that her aunty needs extra help,” says Anna. “Even as a little two-year-old, she’d climb up on Jackie’s knee after a sneeze and wipe her nose for her.”
While listening to this story, the family circle of ‘looking out for one another’completes its loop. A slight head nod in the direction of Indigo (Ireland's little sister), and Jackie let’s Anna know that she’s a little too close for comfort to the family wood fire.
I’m then invited to their fairy room, which happens to be the same bedroom where the twins grew up. Two neatly made pink twin beds feature in a room filled with childhood photos looking out to the calming bush beyond. No
wonder fairies like to visit here.
But for me it’s time to go, not without being led along a ‘magic path’ by Ireland in search of giant eggs. It’s not hard to imagine the games that Anna and Jackie played down by the river before they both got married in this very backyard.
When it’s time to go, Shane prepares to put Jackie in the car. He lines the wheelchair up beside the front passenger door and puts a swivel disc on the ground. He then lifts Jackie from wheelchair to standing position ready to be transferred to the car chair.
At this point, held up in his arms, I’m reminded just how much Jackie relies on the love around her, but how much she gives back in return. She may not be able to wrap her arms around her husband, but she does so every day with her courage and her love of life.
It’s something we can take with all of us, a small gift from Jackie; a reminder that all of us only have today. If we can greet it with a sparkling smile and soak up the love around us, then we have reason to beam.
To read about Jackie on Southern Cross TV & for more information visit MND Tas.