Monthly Archives: November 2016

‘The weight of loss may never go away, but we learn how to carry it…’ 

Since the loss of our beautiful brown eyed boy Jacob at 20 years of age after a short 13 month battle with Ewing’s Sarcoma, I have made a promise to myself that I live out the rest of my life in ways that would make him proud. I talk about him often and own the bad days and the tears. I am proud of the tears because it means I have loved and lost. No one knows how they are going to handle the grief of losing a child. I’m not sure if I’m doing it right – if there is a wrong or right way. But I just know it’s the right way for me. It is as individual as DNA and a thumbprint. Unique to that person.
I’m not sure if it has been long enough since we’ve lost Jacob to say we’ve picked up any ‘grief rituals.’ We’ve really just muddled through his first Heavenly birthday, Christmas and 1st angelversary without him in the spanning of 12 short months. No one really knows how we will cope – we just do what we do cause it’s our way and it feels right for us. But there are some things that I’ve started to do that you could call a ‘grief ritual.’ I am more grateful for everyday I’m blessed with, to be alive when it is denied to so many, I’m learning to ‘smile’ again – see miracles in life everyday, we get Jacob out of his cardboard box as his life size cut out at every family function to know that he’s physically there with us all to have photos taken with, we scatter a little bit of his ashes at favourite holiday beaches and places he’s never even been to but was planning to go one day, his sister Rach and her boyfriend Adam will be taking him on Route 66 at the end of the year – a place he dreamed of going with his best friend Chris, we ring his bell outside at family get-togethers making sure everyone has a drink in hand to give him a toast. I’m sure we’ll come up with more ‘grief rituals’ over time.

I remember doing one of those quizzes on Facebook finding out which side of the brain I work on more. As if it was scientific fact that this quiz was at all correct it revealed that I used the right side of my brain more than the left which controlled instinct, art, emotion, imagination, memory, creativity and music. Since losing Jacob I have rediscovered my creative side of my brain which gladly needed tweaking and awakening as the feeling of grief and loss tends to leave you pretty numb and unresponsive to finding new things to get you through the day. I have been able to create so many beautiful and meaningful projects to honour the feelings of losing Jacob. Some of the creations were created by all the good emotions guided by all the wonderful memories and moments of his life and others were created by the all negativity and sadness that comes hand in hand with grief of losing a child. But the total amount of effort for the all the pieces of artwork regardless of what emotion that was driving force behind the creation was equal. We have his memorial bar outside with a plaque on it saying ‘capturing the chaos and creativity in Heaven on film.’ A couple of permanent markers are on the bar so people can write him a message, it’s the one time graffiti is allowed. I am using Jacob’s camera still to capture the world through his eyes, keeping us connected by what I see through the lens of his camera.

I guess I could say the words in my blog that I continue to write that are dedicate to Jacob are my creative heartworks too. I write from the heart as stories of memories, love and grief. ‘Creativity is the way I share my soul with the world…’ and the soul always knows what to do to heal itself. When completing an online course for bereaved parents I had to think of a tangible object to personify grief. Grief to me is like an onion, I peel back the layers, I forgive the past, I let it go. I feel the gratitude flow. I am slowly peeling off many layers of me to find myself. This is a more suitable way for me to view my grief in a tangible form – the humble vegetable that grows deep dark underground and alone – the onion. The best pick of the onion lies above the ground in the long green stems that grow and reach for the warmth of the sun. We too need to reach for the things that warms our heart in times of grief and our tears as we cut through the onion can also help with personal growth for the good days and the one’s we’d give anything not to feel the way we do.

I’m quite ok with thinking like Shrek – ‘onions have layers, ogres have layers.’ We all have layers.

‘The helpers…’

‘Family is not always about blood. Sometimes it’s about who is there to hold and support you when you need them…’ These are the people I call ‘the helpers.’ When your child is diagnosed with cancer your world revolves around hospitals, appointments, blood tests, treatments, scans, doctors, nurses and being away from home. Life gets put on hold. The mundane drill of the week changes dramatically. You have to prioritise your days better. Your mind goes into overdrive and thoughts fly in random directions. 

Work commitments take a turn for the worst. Worrying about letting the team down in your absence and worrying about how long the money will last for all the bills that have to be paid. Learning the terminology of all the things that come with chemo. Hearing the low statistics of survival to get to 5 years post treatment. Getting given a card that gives us priority to gain access to emergency at hospital if he gets a temperature. It’s a sort of ‘get out of jail card’ to bypass the usual waiting room full of people. The bald head of a cancer patient always turns the heads in the crowded room and stops conversations and chit chat. 
The fear of the unknown that our family was facing, taking tender tiny steps along a dark, twisty, curvy and seemingly never ending road. But the path became a bit less bumpy and unpredictable as we got to know our hospital family who helped us place one foot in front of the other. As the treatment began to start we had to put our full trust and hope into the medical profession to cure the beast Ewing’s Sarcoma. 
The happy welcoming faces were genuinely pleased to see us as we trudged up the long corridor of 4East to the sisters desk to hand in the medical files for the relevant admission. It was the continuation of seeing these familiar faces that made the time away from home less traumatic as the conversations continued and we picked up from where we left off from last visit. Sharing stories of what we’d been up to, like Vanessa talking about her holiday trip with family, the footy scores with Dan, Grace would share stories about catching up with Jacob’s cousin James at a wedding, Camilla opening the double doors to the verandah in both 4 bed wards to get the fresh air flow through the place while asking us to guess what nationality she was, Gina talking about her son’s dog and we’d laugh about how she’d own the place on the weekends when it was quieter without the hustle bustle footsteps of a busy weekday ward. 

While we are talking about footsteps we’d always recognise Jacob’s oncologist Antionette coming up the corridor. A tell tale distinct clip-clop patter would sound until she turned into the room with her entourage. Always dressed in high fashion that Jacob would reflect to me that she looked really nice and that he should have complimented how good her hair looked when she wore it braided with beads. She often commented on his awesome dress sense so it seemed fitting that he should return the compliment. 
Cath and Fiona, Jacob’s clinical nurse consultants became like lifelines, over the phone, email and in person as they accompanied us to every visit to the specialists that occurred. As our relationship grew we shared stories and wishes for all of our children. They offered their shoulders to cry on when tears took their toll, open ears when you needed to vent, and said the right words that you needed to hear. They were the doers, the ones that helped the cogs and wheels keep turning during the plans in motion. It was lovely to see them attend Jacob’s celebration of life and to find out that Fiona is a relative of one of our close family friends and her connection between my nephew Paul and rugby union. They both visited our home a month later and shared drinks during a summer thunderstorm and they will always be welcome to visit again. They both read my blogs and encourage me to keep up with writing them as part of my healing. 
I nominated Jacob’s favourite nurse Sarah for a nursing award as a consumer writing on behalf of Jacob. I will share with you what I wrote about his favourite nurse. 
~ I would like to nominate Sarah Hayes, Nurse Unit Manager of Prince of Wales Hospital Oncology Ward Parkes building 4 East on behalf of my 20 year old son and brother Jacob who we lost last Oct after a short 13 month battle with Ewing’s Sarcoma. She has become a valuable part of our family because of the role she played in that emotionally traumatic event in our lives. It wasn’t just one thing she did, it was all of the little things she did that added up over time that made her worthy of recognition. Her involvement started in our lives from the very first commencement of chemo treatment. She stayed back doing overtime just to make sure he didn’t have a reaction to his very first treatment. She left at 8.30pm on a Friday night – that’s dedication for you. She formed a great fun loving relationship with him which is important to youth and young ones going through cancer. She told him to cut his toenails as this would be a turn off for future relationships with girls. 
Every admission she’d greet us like an old lost friend and would let our family help decorate the ward for Christmas to help with the spirit of the festive season for those who spend the holidays in hospital. But it wasn’t until Jacob was nearing the end of his life that her beautiful nature and caring soul shon the brightest. If he was in need of a blood transfusion or platelets she was always there to make the path a smoother one to travel on – nothing was ever too much trouble. We look forward to decorating her ward again this year for Christmas in honour of my beautiful boy and another equally beautiful girl who we lost last year too. 
At a recent celebration at the ‘dreams2live4’ ball she offered me a shoulder to cry on as pictures of Jacob appeared on the screen at the presentation, coming alive through my words in my blog that I wrote about Jacob’s experiences with his own ‘dreams.’ I was once a nurse but had to give it up after a car accident in 1997 and changed careers to early childhood education. But after going through this time with my son it has reignited the spark of enjoying the nursing profession. I don’t think that the spark has ever dimmed of loving my first chosen career and to watch the dedication from the nurses on Parkes 4 East makes me feel proud to be amongst such lovely caring people. Sarah leads a beautiful team of inspirational people and I’m sure they’d agree with all I say about their boss. In memory of Jacob – we hope she wins. ~ 

Sarah didn’t win 😞 but she was a finalist that had already won in our eyes. I will be catching up her again at the upcoming ‘dreams2live4’ Champaign lunch next week and we’ll be up on the ward decking the halls with Christmas decorations in no time. We are aiming for a 1st spot in the competition this year. 
Michael the social worker would stick his head around the curtain to say ‘goodaye’ and to touch base with Jacob as he came in. Bob and his loyal team in radiotherapy made us feel welcome. Jacob would tease me when he thought I had a crush on Andrew, the doctor that stayed by his side before and after his emergency surgery on the new disease in his spine. The technician team down in radiology, the girls who kept the appointments running on time, the cleaners, the porters, the man in the volunteer cafe who commented on Jacob’s beautiful smile, Anh the doctor completing her prac with Antionette in the Oct 2014 who wrote a nice message of condolences on Facebook when she’d heard of Jacob’s passing, sharing how he had made an impact in her life as a doctor, remembering fondly his gentle nature and his strong sense of self. And who could forget the bubbly Dr Michael, you’d hear his laugh and you knew it was him. Jacob was happy to see his familiar face when he had to go to A & E before his operation on his spine. All these relationships occurred over a very short time, just over 12 months. A short time in reality but the imprint of human connection lasts way longer. 
When the treatment comes to an end – irrespective of the outcome – the hospital life as we’ve become so familiar with comes to an end and the human connections we’ve made during those times are severed. It is hard to let go of the people who have become so important and reliable in your lives. We had become dependent on their words to get us through so many of our bad days and now we had to do it on our own for we automatically think that our need isn’t relevant anymore and to contact them may become bothersome. But that’s not the case. I have kept in contact with the beautiful people I have come to call ‘the helpers.’ It must be a hard job that deals with the end of life in some cases, but it makes it easier when you have the supportive helpers by your side. It is nice to hear a positive story rather than a negative one that the media tends to portray. 
Catching up with Antionette at the canteen and youth cancer service event a year after Jacob’s passing we were greeted with hugs as two mum’s would together after having not seen each other for awhile. She commented how she hadn’t read a story about ‘the nurses’ so I took pen to paper to pour out the thoughts that have been stored in my mind, just waiting for the right moment to be shared with the world and so the entry was created.  

I miss my ‘Team Jacob’ from Prince of Wales Hospital, although I hope we never have to meet them again in the same circumstances as when we first met them during Jacob’s care, but they will always be part of my family – family doesn’t mean you share your blood, family means you share your life. Thanks for being in our life and sharing this emotionally driven time with us, full of the ups and downs of Jacob’s treatment and being there for us. Your names are permanently inscribed on Jacob’s memorial bar in permanent marker. ‘Good people are like candles; they burn themselves up, to give others light.’