April has been a bittersweet month for me every year for the past 11 years. Not just that the season is changing in to the cooler months and I’ve turned a year older in March, but due to a significant loss… my daughter Xantha.
Xantha Maree Marshall was born on 15th February, 2007 with a genetic disorder called Epidermolysis Bullosa, junctional herlitz variant. She was flown down to the Royal Children’s Hospital in Melbourne when she was only twelve hours old, and remained there for three weeks whilst she had her diagnosis confirmed, and we were taught how to care for her. We brought her home to Wodonga, and the merry-go-round of caring for her began.
For four weeks Xantha was cared for at our home, with nurses coming daily to check on her and on us, to see if we were coping. Friends and family visited us regularly, bringing meals and gifts to help us. The idea of the Xantha Maree Foundation was floated and begun, to raise money to help us with costs with travelling to Melbourne and her medical needs, and later her funeral. Other funds raised went towards the debra foundation and the Royal Children’s Hospital, Melbourne’s Good Friday Appeal. Over three years we raised over $64,000 for these purposes.
An article was written in the local newspaper, The Border Mail, which raised a lot of interest in the condition. Strangely enough, five years later, I had someone recognise me in the supermarket car park as Xantha’s mum, making me realise what an impact she was still having five years on, and even now she is still in people’s memories.
Unfortunately Xantha continued to deteriorate, her skin became worse and increasingly infected. We took her back to the Royal Children’s Hospital where we had access to the best care in the world for her. A week later the doctors sat down with us and said there was little they could do but make her comfortable as her quality of life had declined significantly. The next few days were a waiting game, and early on Sunday 15th April, we were told to have family come to say their final goodbyes, as she didn’t have long. Xantha passed away in my arms just after 9am, surrounded by her father, sister, and grandparents, as well as close friends who had travelled from Sydney to support us. My world broke then, irrevocably changed, for better or worse.
Her funeral came, with her older sister lighting up the service with her toddler laughter at seeing Xantha’s photos up on the powerpoint screen. Still in the shock and fog of survival, one step in front of the other, I continued to live my half life. I sought counselling from a local grief and loss counsellor, which helped me understand the way grief and loss worked, and I found relief in my creative processes by creating a scrapbook of her photos and keepsakes. I think this helped keep me sane in the months after, along with the love and support of my family and friends.
A few years later, remembering the support I had had from social workers at both Wodonga hospital and Royal Children’s, I decided to go back to study social work, so I could help others the same way I had been supported. I enrolled in my Masters of Social Work at La Trobe University, and so began my new career. Six months after completing my Masters, I felt like there was something else I needed to do. I remembered the creative aspects that had helped me with my grief earlier, and investigated art therapy as something I connected with. I went on to study certificates in initiatic art therapy and clay field therapy, and now my Masters in Therapeutic Art Practice, ever growing in my learning and capacity for self-expression.
I’ve been asked previously what made me choose the phoenix as the symbol for my work. I always reply that you have to burn before you can emerge new. Losing a child is something I would never wish on anyone. The pain… I don’t think there is anything like it. But I like to think that I’ve been able to take the distress and agony that I have been through and transform it into a new purpose, to be a better me, and to offer this metamorphosis to others, to be a phoenix reborn.