‘I will talk and Hollywood will listen…’ 

I got a notification in my WordPress messages today saying ‘1 Year Anniversary Achievement Happy Anniversary with WordPress.com! You registered on WordPress.com one year ago. The message brought a smile to my face as I reminisced about all the entries I’ve written, but there’s always that twinge of sadness in the undertow because of my reasons to write. My first ever entry was written on Good Friday and publish for the world of bloggers to read on Easter Sunday. Easter is a little bit later in the month of April this year, so I’ve still got a bit more time to come up with words to make another entry as I thought I’d stop writing before the next Easter. As the number of entries began to amount in my blog space I started to think of a magic number that signified the total amount that I would write. Well I’m up to 51. With one more story to tell it will bring the number up to 52. I think this is the significant number. For I am 52 years of age and I’ve been writing for a year and there is 52 weeks in a year. I’m not going to say I’ll stop writing but I’ve got another vision I’d like to see come into fruition. I’d like to share my stories of love, memories and the grief of loss with others. If one person can take one positive thing from my words of wisdom I will be happy. For I know then that I have helped someone else with their own bumpy, twisty, unpredictable and unscripted life. So if anyone out there in the world of WordPress can help guide me into turning my words into a book I’d be most appreciative.

So this is my 52nd story. I will continue to dedicate the words to Jacob so it seems quite fitting that I talk about his aspirations of becoming a famous cinematographer. As the Robbie Williams song ‘I will talk and Hollywood will listen’ sings from my iPod I hear the words – buy up the rights to my book, live on a ranch from what the box office took, it ties in nicely to mine and Jacob’s dreams. I’ve already mentioned mine in the above paragraph but the continuing lyrics that are sung belong to Jacob. I’m sure the book that I’d write would be a different one that’s already been penned as it would contain all of the successes that would happen in Jacob’s life as an upcoming cinematographer. Some of the memories of his life would be shared because they described who he was as a child, what can’t be added is bits of his future. I have his past and I’ve lost his future. The words sing from the song as if Jacob is saying them from his own hearts desires and Robbie Williams had dedicated the song for him. Quoting the words of the song ‘Kevin Spacey would call on the phone, but I’d (Jacob) be too busy, Cameron Diaz give me a sign, I make you smile all the time. Mr Speilberg look what you’re missing, doesn’t that seem a bit absurd to bow at my every word.’ We are missing him too and I’m sure Mr Speilberg would be missing him too if he only got to witness his talent just like the rest of us who got to see Jacob’s creative heart and spark. We are lucky that we have his YouTube channels to remind us that he would have made it had he been granted a longer time on earth. I’m so lucky I have his scripts of stories yet to come to life as documents on his computer and iPad. Maybe someone will take on his funny little scripts and bring them to life in as a video to showcase in an event like ‘Tropfest.’ Well he did have his brush of fame getting to work on set with Robert Redford, Cate Blanchette, Dennis Quaid, Topher Grace on the set of ‘Truth’ as it was being filmed in Australia. This was a dream of a lifetime that given to him by the charity ‘dreams2live4’ while he was undergoing treatment for Ewing’s Sarcoma.

    IMG_2057 2

    (Jacob always pointed out that his surname was spelt wrong in the credits)

    I first heard the Robbie Williams song in the company of a young theatre group where Jacob, his sisters and I belonged to. You’d hear the entire CD being played and that particular song would be get stuck on repeat as it was a fitting song for upcoming new and inspiring thespians with dreams of making their mark in the world too. The song played in the background while people were busy creating the set, and the cast where rehearsing lines. Hearing the song evokes many memories of what was and what will never be. The song will accompany the words I write, my 52nd entry and by changing the lyrics a little -‘I will talk, and someone may listen.’

    ‘That’s my team…’ 

    As the Autumn footy season starts a brand new year in Australia this week memories flood back of the times our family was divided as supporters of the Sharks and Tigers NRL football teams. An even number of supporters on each team. Rachel, Ben are I are rooting for the black, white and blue as true sharkies supporters and Pete, Amy and Jacob proudly wore the Tigers stripes in orange black and white. Even the pets were mapped out into teams, giving an equal number of supporters. But now our numbers and supporters are off kilter, leaving the balance lop sided, leaving an odd number in our footy team supporters. That’s the way life feels now since Jacob has passed. We have to accept and learn to live this way as it is our new norm. 
    I’m sure he watched the Tigers win their first game of the season with a score of 18-34 as his dad and sister watched it in the ‘good’ room as we call it. I could hear giggles and cheers as their team delivered the points. My team had already had their limelight as they kicked off the season as the first game. Sadly they lost – 18-26. That’s the way it usually panned out when we went to watch a game in real life as a family. The long drive home in the car was always quiet and withdrawn for one team, the losers and statistically it was usually my team. Tigers having a bit of an edge over the Sharks on more than just one occasion. Watching the two teams play against one another at home on tv was just as traumatic. Pete would watch it perched in his favourite lay-z-boy recliner, Jacob usually stretched his long 6 foot 2 inch frame along the lounge by the window, Amy and Rach squished together on the lounge near the tropical fish tank (all the fish where technically sharks supporters just because of where they lived even though some wore the colours of the Tigers proudly – the clown fish Nemo and Marlin), Ben got himself comfy in the beanbag decked out in his favourite attire that he’d wear in all seasons – his boxer shorts, never feeling the cold. I just looked around the room and tried to fit in a spot amongst my family to watch the game. Most mothers would give up their own comforts for their family. The pleasure of seeing them all together (even when they weren’t talking to one another because of the game) the experience is priceless. I’m sure I ended up sitting at the end of the lounge that Jacob was on, with him using my lap as a footstool for his feet. 
    When we were at a game of the two teams we managed to get on a televised segment called the ‘footy show.’ As a try was being scored by the Tigers the cameras closed in on where it was taking place and they did a slow motion pan of the try for play back. In that slow motion shot you could see us our family of 6 sitting on the seats behind all colour coordinated for our teams waving flags. Pete, Amy and Jacobs faces wore smiles from ear to ear. Rachel, Ben and mine were the opposite as we knew that our team was losing. We found out that our family was on the footage as we watched an episode of ‘the footy show.’ We have the episode now to keep on DVD to treasure the memory. Jacob used to take his friend Kyle along for a day of family fun and we always gave him a footy jersey to wear in which ever team he chose on that particular day (usually the opposite of Jacob so they could have a bit of rival banter between tries). 
    Amy has her own memories of taking Jacob to many live games and those stories will be locked away in her heart for all enternity. Trips of getting lost on the way before the days of gps on your phone and getting soaked in a mad downpour without a raincoat. The very last time she took her baby brother to a game she had to leave the stadium to get money out of a Flexi teller as the grounds only sold food by cash as Jacob was starving and we couldn’t let him lose anymore weight, the horrible parasitic disease and toxic treatment had already depleted his once chunky athletic frame of 96kgs down to around 50kgs. The weather that afternoon froze him to the core as their team lost another game of what seemed to be a shocker year, they were going out in sympathy with Jacob as he came closer the end of his life. 
    Watching a game of footy of our favourite teams doesn’t feel the same as it once did before. I’m forever grateful for the sharkies winning their first ever grand final last year in the month of Jacob’s first angelversary of not being with us on earth anymore. I’d like to think that Jacob had his hand in making his mum’s team win. We watched the game outside under the pergola on Pete’s milestone birthday, his 60th. Pete’s friend ‘Uncle’ Trev and his son Daniel joined us in the afternoon fun on the long weekend in October to celebrate both of their birthdays as they are a day apart. The last few minutes of the game was gut wrenching and nail biting to watch as they ball was passed from team player to another. A large moth had given us a sign earlier on that evening as the game was unfolding. It flew blindly, heavily landing on me then Pete, then me then Pete again before landing on a cartoon character poster of sharkies claiming victory. Thanks Jacob for the sign. Ben was lucky enough to have bought a ticket to travel to Sydney to watch the game unfold live at the stadium. Jacob knew they would win for his mum. Pete’s team had their glory in 2005 and we were there at the live game while the kids at home had their own grand final pool party with friends. 
    My mum and dad religiously run a footy tipping syndicate for family and friends to bet who wins in all the games for $10 per person. The winner of the comp can’t retire for the money you could be at a chance to receive would only reach $50 – $60 depending on how many join the tipping. I have used my tipping skills to claim last place where you get $5. A win for coming in at last place. In our first year without Jacob he took part in the tipping comp among family and friends. We gave him all of the ‘home’ games of the teams. He’s participating again this year too. I will pay his $5 to play. I will always be a dedicated Sharkies fan as the team hailed from Cronulla, the first place our family lived in after we immigrated from the UK to Australia. 
    As we watch future footy games this year we will leave an empty space. A space for Jacob. We will look out for the signs that you are with us as we barrack for our teams. I can almost hear him now….’Go the tiger-sharks.’ 

    ‘taste your words before you spit them out’ 

    Lots of articles, stories and links have been coming up on my Facebook news feed about bullying in different case scenarios which has got me thinking about my own experiences with this new age ‘deadly sin.’ The old phrase we used to say in the play ground doesn’t quite cut it in this day and age – ‘sticks and stones may break my bones, but names will never hurt me.’ It goes way beyond the teasing we used to get at school. The Internet, smartphones and the like make bullying much easier through Facebook, email, Twitter, snapchat, Instagram etc. Bullying has transformed from being delivered in a physical way towards a more mental insult. The ramifications of cyber bullying is more likely to lead to depression, self harm or for people to question self worth which are some of the leading health issues among young people at the moment.
    I suppose I was taught about bullying at school when I was young but the subject came more under the topic of ‘do unto others as you would have them do unto you.’ I’m sure I can’t remember it as being as scary as it is today. I may have got teased for my choice of say a lunch at school that wasn’t everyone’s taste or the way I played hand-ball (my lack of eye/hand coordination) but must have been able to shrug the feelings of embarrassment and disappointment off by having had a positive upbringing in a loving family who helped guide my current morals and values in life. I survived my childhood and grew a bit of thick skin to the occasional tease.
    Nursing, my first passion of a career I so desperately wanted and succeeded in following,  is one profession known for bullying. Many have experienced acts of ‘horizontal violence’ from colleagues often driven by leadership hierarchy. I didn’t escape this either. I was humiliated at my workplace as I was pinned up again the wall in the corridor of the hospital in full view of everyone by a person in a superior position for speaking up in defence of myself, I was only telling my opinion and the truth as it was. As a mature aged student I changed my career from nursing to early childhood education. During my studying years at university completing my degree in early childhood education I was intrigued and saddened that this profession too had a statistical story to tell as well. I read a really interesting article by Louise Hard, a senior lecturer teaching leadership and management and wellness and wellbeing at the university I was studying at. She introduced her students to the ‘crab bucket mentality’ in a workplace environment, particularly early childhood. If a new person came into the centre with bright eyes and fresh ideas and shared their desires of change the ‘crab bucket mentality’ would come into action. Have you ever been crabbing down the beach searching under rocks for crabs and placing them in a bucket? Ever noticed that if one crab worked it’s way to the top to escape the others would pull it back into the bucket. That one new person in their new environment full of new and exciting ideas is that crab trying to reach for the top of the bucket. The crabs pulling them down are the colleagues who are resentful of change or think they need to knock them down a peg or two. These types of bullying experiences can make you stronger in character depending how you face them. I am very fortunate that I work with a brilliant team of individuals who bring out the best in me. 
    I was fortunate enough to be aware of my children being bullied and I’m forever grateful for our relationship in which they came to me for advice and guidance when they were hurting. I’m very proud that they turned out to be very fine well adjusted young adults. I hope some of my beliefs, morals and values have been passed down to them and they can share them with their own children. Wouldn’t it be a nicer place in the world without bullying! I work with our future generations in early childhood education so I’ve got an important role to help shape the minds of the young to develop the social skills to prevent and stop bullying. I will continue to take advantage of teachable moments. I will teach the children respect and empathy and set a good example and be a positive role model. Isn’t that what all parents want to teach their children?
    Jacob was proud to be part of the Wollongong Diocese ‘Fix You’ anti-bullying video production that was filmed at his high school. The video is an anti-bullying learning and teaching resource to provide information and strategies for teachers. Jacob’s dream of becoming a cinematographer was a little bit more palpable for him by giving him the opportunity of being in the video. For the cinemaphotographer behind this production was the very person that took Jacob under his wing as his personal apprentice on many jobs which further ignited his passion. Jacob in fact bought this very talented man’s camera. The one that Jacob used in his own films on his YouTube channels and the one I’m using in his absence – capturing the world through his eyes through the lens of his camera, keeping us connected in the hope he sees what I see. I am very proud he will be still helping others without physically being on earth anymore because of this video, doing his bit to make it a better world to live in. As I watch the video tonight I will pause it on his beautiful face with his afro hair and cheeky grin and say ‘I wish I could have fixed you’ (by taking away the cancer).

    ‘Oh the places you’ll go…’

    This is my first taste of writing in the brand new year 2017. A year has passed without my beautiful brown eyed boy Jacob and we are now at 15 month since my hands touched his face and held his hands, my lips kissed his forehead and my words soothed his fear at the end of his life. Time keeps passing to a steady beat and there’s not many moments that he’s not on my mind. He’s in my thoughts, my heart, my memories and hopefully will continue to visit in my dreams. In the year that has just past I’ve been fortunate enough to have travelled. Travel that involved plane trips and not just a casual car trip down the coast or into Sydney for a special occassion. 

    The first trip was a fairly long 7 – 8hr drive in the car from our house in Mount Warrigal NSW to Lakes Entrance in Victoria. A beautiful seaside resort and fishing port. It was my birthday present, a nice 3 day getaway in the cool winter month of June. 

    On to trip away number 2. Pete had entered a competition at the local JBhifi store buying a boxed DVD set. The prize was a 5 days all expenses paid holiday of three choices – Thredbo, Berossa Valley and Cairns. We chose Cairns. The competition was a Mother’s Day competition, you never dream that you’d ever win these sort of things – they always happen to other people. So we thanked our lucky stars for the welcome gift of travel and I secretly knew it was a gift from Jacob for his mum and dad to enjoy precious time to themselves. We flew up to Cairns from Sydney in 3 hours and arrived in the afternoon in 100% humidity. Included in the prize was activities to do while we were up here so each day we were occupied with things to do. We visited a butterfly farm, animal reserve, Port Douglas, Cape Tribulation – Daintree National Park and Green Island to snorkel the reef. 

    The last trip of the year was a 2 week exploration of both the North and South islands of New Zealand in November. We hired a car and drove around to check out the beautiful sights in several major cities, capturing many new memories to cherish. Home just in time to begin the rush in the lead up to Christmas. 

    Rachel and her boyfriend Adam left the family home on Christmas Day just over a week ago to travel to America, UK and Europe on a 1 way ticket. The world’s their oyster as they travel and taste new experiences and culture of new lands. I’m trying not to be the nosy mum who wants to check Facebook to get updates of where they are heading and what they’re up to having just spent walking the Las Vegas strip seeing in the New Year with fireworks. I’m just glad I had the opportunity to travel when I was young too. I too travelled after leaving school, heading to the UK and Europe on a 1 way ticket. Pete had these opportunities too, just several years before we got married. 

    Amy was away from us for 3 years while she travelled in the UK and Europe working as a nanny for 2 families. Now back in Australia she has a plan of completing the Larapinta Trail, just outside of Alice Springs while she plans a trip to Thailand and Phuket. Ben has travelled too, to Bali after finishing school with mates to chase the surf. I’m sure more adventures are waiting to be written on the pages of his travel book in times to comes. Empty pages are just waiting to be written and filled with wonderful adventures. Jacob had his sights on travel too, he was making plans to travel to America for his 21st birthday with his best mate Chris who’s birthday was the very next day to Jacob’s. He was looking forward to travelling on Route 66 and many other iconic places on the map. I’m sure he would have moved to America one day as his career path would have taken him along that road of becoming a famous cinematographer. He would be going places. 

    Our last family holiday together as a family of 6 in 2014 we travelled to Hawaii for 10 days. We all had a great time and it will be a holiday that I will cherish deep in my heart. For on return to Australia Jacob was diagnosed with Ewing’s Sarcoma after complaining of a sore leg which we thought was because of being cramped in the seat as his 6 foot 2 inch frame didn’t leave much room to move. A small clot was the first diagnosis from the flight, but in hindsight the small clot was more likely from the tumour that was forming in his left thigh. Less than a month later after the holiday he was having his first chemotherapy treatment to cure him of the horrible parasitic disease that eventually took him from our family. 

    Jacob is with us every step we take in this different life we live now. Although he’s not physically here with us anymore, he works his magic to be seen and felt in everything we do and the places we go in our travels. We take his ashes and scatter him in our favourite places on land and oceans. Rachel is going to let him swim at the beach where I grew up in Dovercourt, Harwich. The waters all connect somewhere. We see him in rainbows, in colours, in all the creatures great and small, in stars, sunrises, sunsets, clouds and full moons. We thank him for visiting when we see feathers, dragonflies, butterflies and when the familiar songs come on the radio. We smile because of him and see miracles in life everyday. 

    We are thankful for the beautiful photos we captured on our travels and will continue to capture as life goes on and I know deep in my heart that Jacob did a grand job in trying to get his presence known and felt in the photos I will share with these words. I hope you can see the magic in the pictures and catch his spirit in action and I hope his siblings feel him close everywhere they go and capture him accompanying them in their travels too. Amy caught him when she snapped a photo of a beautiful red dragonfly in the Northern Territory (red is Jacob’s favourite colour). In the colours of the beach with the old blue tug boat, the sparkles on the water, the dragonfly that journeyed with us on the bus to Cape Tribulation, the memorial rock formation (a Cairn in Cairns) that Pete made by the beach without realising what the towers represented, the clouds that formed a photo of a baby in the womb, the Dolphins that came to say hello at the Bay of Islands, just a few to share. 

    Pete and I plan to travel again this year too in September to Canada. As we begin a different stage in our lives of gradually becoming empty nesters we will continue to love and grow with one another just like when we first met before the children came along. As our children continue to have their own travels on this earth, I just visualise that Jacob’s off travelling too, having his own spectacular experience wherever life is taking him as well as accompanying us on all our adventures as our very own guardian angel in travel. 

    “Wherever you go…go with all your heart” and I’ll carry my family in my heart with every step I take. Quoting from the movie Lilo & Stitch – ‘Ohana means family. Family means nobody gets left behind – or forgotten.’ You’ll always be with us Jacob x 

    ‘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.’ 

    ‘My promise to you…’ 

    Since the loss of our beautiful brown eyed boy, 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. I am capturing our lives through the lens of Jacob’s camera…so we are seeing the world through the eyes of my child. I hope he will see all that I capture. It is my dad’s 80th birthday today and we had a beautiful family gathering, showering those we love with love. My nephew James wasn’t present as he’s still holidaying overseas so we felt his absence just like Jacob. We took family photos with Jacob’s stand out cut out again today so he’s forever present in all we do. My mum even wiped his mouth with a serviette as something had stuck on it from last time we got him out of the box. We explored the creek behind my sister Trisha’s house and saw an eel and lizards and sailed floating leaves along the current with my girls and nieces. Jacob was mentioned in my dad’s poem that I wrote for him to commemorate his special birthday day. I mentioned how Jacob would want us to live out the rest of our lives.
    Happy 80th birthday dad x

    Today you celebrate your 80th year

    30th October a warm sunny day.

    A time to spend with family and friends

    A perfect chance for us to say

    Glad to see you here today

    As you puzzle in the sun

    Doing crosswords and soduku

    Checking over twice – you won

    Sharkies won for us this year

    Go the black white and blue

    Glad we saw them win the final

    Followers through and through

    You scared us all a few months ago

    When you became unwell

    A hospital trip was needed

    All good now’s a better story to tell

    But life has given us lemons

    And to taste a bitter pill

    But we can make us some lemonade

    To drink and take our fill

    We are strong together

    In everything we do

    Despite what life’s thrown at us

    We see another view

    Jacob would want us all to be strong

    In the ways we live our life

    Honouring him in the ways we live it

    Through triumphs and strife

    Nobody saw that was coming

    Stephen’s heart was nearly shattered

    We need to keep our circle of life

    As family that’s always mattered

    Keeping loved ones together

    As the leader of the pack

    What a big role to fill

    Trying to keep things on track

    So as you celebrate one more year

    A gift denied to some

    We all should be thankful

    And be blessed with many more to come.

    So as we enjoy another day together

    We won’t forget to smile

    See miracles in life everyday

    As we walk our own life’s mile

    Our family is like music

    With notes low and high

    It’s always a beautiful song

    To sing and get you by.

    But the song for today

    Is happy birthday your day is here

    Time to spend it with those you love

    Hip hip hooray we’ll cheer.

    While you sit outside in the garden

    And look around the view

    As you spy a little butterfly

    It’s Jacob wishing you happy birthday too.

    We saw a black and white butterfly in amongst the trees and flowers.