Through immense personal challenge, Julia Watson manages to demonstrate in the most humble and authentic way that life truly is for living. I remember reading an article Julia had written about her beautiful Georgia years ago when Nicholas was just tiny and I was so proud when her first book was published recently and I was able to meet her in person at the Brisbane launch. It is an honour and a privilege to host Julia’s thought provoking words here on the blog. Thank you for sharing part of your heart with us here, Jules. ~ Annie x
When I was diagnosed with terminal bowel cancer in December 2013, the lives of five of the six members of our family fell to pieces. As my husband and I left the doctor’s office, and greeted our four children, who were being looked after by a nurse who was aware of the news we were being delivered, three of those children, daughters then aged 10, 8 and 7 looked upon our faces, and saw a look of grief, fear and uncertainty that they had never seen before. They knew their lives had changed. Only our 5 year old daughter Georgia, who has Down syndrome, seemed unaffected, smiling at us sunnily from her pram.
In the weeks that followed, we tried desperately to come to terms with our new normal. I knew that I wanted to keep things as much the same for the children as I could, keep my happy family intact, hold on as hard as I could, for as long as I could. I knew the only answer was living in the moment, the here and now…knowing that it was all we had, indeed, all anybody has. But how?
And then I realized the answer was sitting in her favourite corner of the loungeroom, where the dappled light comes in. A little girl with almond shaped eyes, banging a plastic lid against the coffee table.
Right from the moment this child was born, she showed us the way. She emerged into the light with only a small protest…as soon as she was laid on my chest, and covered with a blanket, she was calm again. The world was different from that safe warm place that she had just come from, but she already had an inbuilt ability to go with the flow.
As my husband and I held her in those fraught few days following the revelation that she had an extra copy of the 21st chromosome, her peace slowly became ours. I remember watching her sink contentedly into the arms of her father, full of milk and wrapped in love, and I said to my husband “she knows nothing of this, how she has turned our world upside down. The trauma doesn’t touch her. She just knows she is a baby, her needs are being met, and she is safe.” And so, we took her home and raised her like we did the three daughters who came before her.
Georgia has always been a happy child. She is untouched by societal norms and social constructs that tell most of us how we should be living. Her sisters feel her, as she feels them. They’ve always liked to go and sit beside her for a while if they are angry or upset. She is not a ‘stereotypical’ child with Down syndrome, she has a likely dual diagnosis of Autism, and she does not much like to be touched or cuddled. However, if she senses unease in someone she will sit still, quiet, hyper aware that she is needed, and she will allow herself to be cuddled. She has no expectations of them, and they know that without being told, so with that, they have got the world’s greatest therapist in their very own home.
From the moment she was born, we were met with pity for this child that we had had, this broken child, the one with the flaw in her DNA, the one we didn’t expect, the one we didn’t want. We wondered what sort of a life she would have, but it took us no time at all to see that it was, in the simplicity and fullness it was lived, a life to be envied.
Why do we pity these children, and the families that are lucky enough to have then come into their lives? Georgia lives her life in a unique freedom of one that couldn’t give two hoots what the world thinks of her. Her favourite position is stripped down to a nappy, hypermobile legs thrown over her shoulder, eating an ice-cream. No one cares, least of all, her. It would look a bit funny if we did it.
And as for worrying about your kids, their future? I have far more concerns for my other three children, now teetering on the world between childhood innocence and teenage angst – on a precipice. They have a lot to contend with, these girls. Teenage hormones, transition to high school, cyber bullying, the desperate quest to fit in. And to add to that, the knowledge that they will one day have to do it without their mother. They don’t know when, but the inevitability of my fate is always with them, as it is always with us.
It is not, however, with Georgia. She is fond of me, this cute blonde child. I know that. She smiles when I move into her line of vision, especially if I have something for her to eat, and I am told that when I go away, she grins with delight when she hears my voice on speaker phone. But Georgia’s memory is short, her existence limited to a very small window of time. One day for Georgia, I will be here, and then I will be gone. In her own small way, she will look for me for a while, and then her life will move on, untouched, her needs met by another. I can’t say that it doesn’t give me a pang, that one day it will be like I never existed, but there is comfort in it too. It will not be so easy for my other girls.
And so, in our quest to find our magic in the everyday moment, we take our lead from a 7 year old girl, who doesn’t walk, or talk, and whose condition is never associated with wisdom. We know that the universe got it absolutely right when it gave us this child, free from guile, envy, hate, fear or prejudice. We would need her one day, to teach us how to live.
And there is a lesson in that for everybody.
Julia Watson has been facing the greatest challenge of her life – and in the process, becoming the person she had always wanted to be. She is a writer, with a recently published memoir ‘Breakfast, School Run, Chemo‘ and blog called Five Fairies and a Fella (her gorgeous and long suffering partner Gaz is the lone fella. He loves it, really). She is passionate about matters of social justice. But her greatest accomplishment is being the mother of four beautiful ‘fairies’ – her daughters, Dakota, Indi, Tana and Georgie.