My 65 Roses Challenge, to take 65 portraits of family and friends, has been a catalyst for reconnecting to my creative self – a self which for sometime has laid dormant as I deal with the everyday challenges of raising a young family. In the final stages of my pregnancy with Myles, I had daydreamed about what I would be doing with some of my ‘spare time’ while baby Myles was sleeping, Elara was at kinder, and Sophia was at school. Perhaps I would start drawing again, or paint a canvas for our living room. Paper was bought, and a canvas purchased, but still they remain untouched. The first 5 weeks of Myles’ life was a dream. I literally could not have asked or prayed for a smoother labour and recovery. He was born on Christmas Eve, and I was home for Christmas.
Over the ensuing weeks, it seemed like all I was ever doing was feeding, but we were going well and there weren’t any major concerns. The last week of the summer school holidays started, and this coincided with a heatwave. We sought refugee from the oppressive heat and went down to the Mornington peninsular to be with my family. Curtains were drawn, ice-creams were eaten, and we stayed in the cool of the house. When my phone rang, I did not recognise the number. It was a woman, calling from Monash Genetic Health. My heart started to race. Was she calling to ask me to participate in a twin study? No, it was about my son. She did not know his name, only that he had been diagnosed as having a genetic health condition, Cystic Fibrosis, through newborn screening. I was holding him as she spoke, I knelt to my knees. How can this be? My mind felt week. How can this be happening? She advised us that appointments had been scheduled for the next day, Wednesday, and we would have to be at the hospital for at least four hours. I had to call my husband at work, to tell him the news. It was terrible having to call him, knowing that, like me, he would not be expecting this news, knowing that he had to be called so that he could arrange the next day away from work. I felt stabbed with grief, I could hardly talk. I felt heartbroken and grief stricken for our son and for all the things that could be taken away from him, most preciously his breath, his life. I held him tight to my heart. I wanted to believe it was all some sort of mistake, that perhaps they had got it all wrong. We would have to wait several more weeks for the ‘sweat test’ to confirm the genetic testing that had already occurred.
A beautiful friend, now living in Europe, sent me this message, soon after the initial diagnosis. It was the middle of the night, and I was feeding Myles by the light of my mobile phone, when it beeped.
There is no question this piece of information has dealt a crippling blow. The time for you to be tough will come, but for now allow yourself the space to grieve as you need to. No doubt right now the Doctors are bringing you up to speed on the basics of managing CF to achieve the best long term health outcomes for Myles. Take in what you can, but don’t pressure yourself to know it all straight away. While it will be a steep learning curve, rest in the knowledge that you are at the beginning of a life long process, be realistic of your expectations of yourself right now.
As your sister said so beautifully, Myles is lucky to have landed in a family that love him so unconditionally.
Right now you may question why this is happening to him, and blame yourself for your genetic disposition – when you play these kind of hurtful questions through your mind, ask yourself “To what point?”…there is no benefit to beating yourself up over this. The situation is what it is, and no amount of questioning or self blame is going to change it….so go ahead and forgive yourself right now!
With time this little man is going to help you realise just how damn strong you are! Because of him you will end up finding yourself in support groups with other parent’s sharing your experience. It’s a whole new network you’ll be welcomed into and it will expose you to many inspirational people with incredible stories of triumph. You’ll see the other side to of course, but this will inspire you, propel you to be involved and you will be. Because of him your family will bind closer. You’ll see a love and protection emanate from Sophia and Elara that you never imagined could be so strong. Mark to will adapt and evolve.
Because of him.
Embrace this challenge my fine friend, in the end you’ll never wish it was any different.
The first weeks and months were emotionally very challenging for me as I came to terms with the diagnosis. Another friend came to visit, and she reminded me in her beautiful way that we had given Myles life, not adversity. She reminded me that he was a ‘strapping baby’ and that she had no doubt he would grow into a strapping young man, able to follow his dreams. I gradually found the strength to stop my mind from wandering into the unknown fields of the future. What was the point? Those murky fields of the future, were simply full of my fears. And as the Doctor at the hospital had said, the statistics are just statistics, and Myles is an individual. It is impossible to predict what his CF will exactly mean for him and how it will impact his life expectancy, but at the moment he is thriving. We are managing the condition as instructed, with twice daily physiotherapy sessions, Creon enzymes to aid digestion whenever he feeds, and electrolyte and vitamin supplements.
I realise that now that the diagnosis has come with a silver lining. It is making me evolve as a person, connecting me to the calm and inner power that comes from living mindfully in the present. And there is nothing more precious than enjoying the wonder of your baby’s smiles, and enjoying the simple pleasure of their presence, their being here. The physiotherapy sessions alternate between two states. There is a state of quite mediation as I concentrate on the patting, mindfully listening to the pats, and there is a state of happy communication, when I either sing nursery rhymes or talk to Myles as I pat, trying to keep him entertained. And we share this quite time twice a day. It is now just a daily habit.
My 65 Roses Challenge for Cystic Fibrosis Victoria, has been a very enjoyable experience – I’ve met some wonderful people and I’ve been able to give back something of beauty to the the people who have participated. When I first heard of the 65 Roses Challenge, and the fact that you could design your own challenge involving the number 65, I immediately thought of the photography idea. I love photography, and I thought perhaps it was a good idea, though I wondered if I was ready or not to do it. I initially ran the idea past the Social Worker at the hospital, then my Mum and then my sister. I felt my idea was fanciful, but on the 17 April, my Grandma Joy’s birthday, I made the decision to do it. I created my fundraising page and blog and then announced my intentions using facebook.
Soon after I was contacted by my friend Lois, who said she had another fundraising idea that could be used to further fundraise in support of my 65 Roses challenge – a Fashion Sale to Benefit Cystic Fibrosis Victoria. This was held on 21 May 2014 at the Peter Avola Pavilion in Strathewen and raised over $500 for Cystic Fibrosis Victoria. This sale was organised by Lois Stubley, Mary Avola and Wendy Robinson. As many people will remember, the community of Strathewen was devastated in the 2009 bush-fires. I had grown up in Strathewen and was heartbroken for my community and the friends and families that had been impacted by these fires. Here was a community, still scarred by the trauma of the bush-fires, reaching out to me and my family. Helping me with my 65 roses challenge in ways I had never expected or anticipated. Acting upon a heartfelt idea.
My Grandma Mary use to have a picture of the famous Thinker statue in her kitchen, and underneath it had the following quotation: ‘Stop thinking, start doing’. My 65 Roses Challenge has made me reconnect with this powerful idea. The idea that to live a full and meaningful life you sometimes need to stop over thinking things and just back yourself to start doing the things you dream.