One word mantran

A child without a parent is an orphan, and when a spouse loses his or her partner they are called a widow or widower, there is no word in the dictionary for a parent who has lost a child. I am forever changed after the loss of my 20 year old son Jacob after a short 13 month battle with Ewing’s sarcoma on the 7th Oct 2015.

An online creative workshop helped me get through my first year as a bereaved mum. While completing the workshop I came across a free four week, self-paced online photography class called Illuminate – lighting the path to photographic healing. This class seemed perfect as I was using Jacob’s camera and seeing the world through his eyes – the lens of his camera. During the class I had to think of a one word mantra to guide me through the year. As a grieving mum I chose ‘smile’ (see miracles in life everyday) as my one word mantra for nothing is as beautiful than a real smile that has struggled through the tears.

As I entered my second year my one word mantra was ‘focus.’ It was a year to focus on me & focus on my camera skills as an amateur photographer. The stories on my blog site took on a different shape as the words were guided by the photographs taken that year, but they still contained memories of Jacob within every one of them. It was a year to focus to get into a healthier eating pattern with the intent to lose some much needed weight.

My one word mantra in the 3rd year year was an acronym of the first letters of my children’s names – Jacob, Amy, Rachel and Benjamin – JARB. It was the year I tried to be a better version of me, for them. On reflection that year was the hardest one since Jacob’s passing as it became clearer that he wasn’t coming back and these random outburst of raw grief was going to haunt me for the rest of my life, for grief is the price we pay for love. The way we deal with grief is as individual as a fingerprint and DNA.

We are nearly coming to his angelversary, the fourth year without our beautiful brown eyed boy in our lives. The one word mantra that guides me through 2019 is ‘Shine.’ I googled lots of songs and quotes that contained the lyrics ‘shine’ and came up with enough reasons to vouch for my word of this year:

Let your light shine

Shine on you crazy diamond

Behind the clouds the sun (son) always shines

Do what makes your soul shine

A strong soul shines after every storm

Stars can’t shine without darkness

This little light of mine, I’m gonna let it shine

Let your weird light shine bright so the other weirdos know where to find you

Rise & shine

You are my son shine

I will continue to find my one word mantras to guide me through each year as I made a promise to myself that I would live out the rest of my life in ways to make Jacob proud and what better way by choosing a word at the beginning of a new year to honour him with.

End of life conversations

I was asked by Jacob’s youth cancer psychologist from Prince of Wales Hospital if I would like to talk about Jacob’s end of life conversations. I was then interviewed by a young journalist from Triple J – the Hack & the article has come out. I thought it was well written & certainly a topic that gets pushed under the carpet. Making small steps to improve things in honour of my beautiful brown boy Jacob ♡

Que sera, sera – the future’s not ours to see

‘Coming together is a beginning; keeping together is progress; working together is success.’ I am very fortunate to have loved both of my two careers – nursing and early childhood education. The only way to do great work is to love what you do. I’d like to think that I’ve done great work over the 17 years with both careers – 17 years as a nurse and this year marks 17 years as an early childhood educator. As a young child if I was asked what I’d wanted to be when I grew up my answer never changed – I knew I would become a nurse and a mum. I achieved both of my little girl dreams. With my career in early childhood my dream of being a mum (after being the real deal for 14 years) was multiplied by the hundreds of children that have came into my care since the day I was given an opportunity to complete a traineeship – certificate III in Early Childhood Education and Care.

I started my new 12 month career change opportunity as a mature age student on a minimum wage (a big drop after being an Enrolled nurse working weekends and getting penalties) and completed the theory component within 6 months. I was nominated by my team mates to be trainee of the year and went on to receiving the Phil Darby memorial trophy at Darling Harbour for being the ‘most inspirational trainee’ of that year. Knowing I was capable of doing distance education I decided to push myself further and enrolled in my diploma studies while technically still in the time frame of my traineeship of Cert III. I managed to complete 2 subjects in that time. Although it took me a lot longer to complete my diploma and my bachelor of education degree I love working in early childhood education and still do to this day, this hour, this moment and this week. But this week will be my last at the centre where I work now.

This week as I walk out of the door I will take with me all the wonderful memories, knowledge, the laughter, the fun experiences and wise words shared over the past 17 years from children, families and educators past and present to cherish in my heart. I will share some of the random best bits here in no significant order;

⁃ sharing information about the name of a common house hold spider while a child combs your hair with a stick and replies ‘my daddy has long legs’ and then tells me that I have ‘snits’

⁃ Dancing with the iPod on shuffle – ‘ego is not a dirty word’ by skyhooks plays – child pipes up and says ‘eagles not a dirty word’

⁃ On international yoga day a proud child greets me with an ‘I did my yoghurt today’

⁃ All the fun times away for weekends with workmates and as the saying goes ‘what happens in Vegas, stays in Vegas’

⁃ The social nights out (plus breakfast, lunch and anything in between) for celebrations, farewells and just because….for no reason at all…just a catch up

⁃ Attending working bees with children and families on the weekend and cooking the bbq lunch in the winter sun

⁃ Writing a poem for boss of year competition and that person winning the category of funniest boss

⁃ Having to stop myself calling centre admin girls ‘ward clerks’ (once a nurse always a nurse)

⁃ Remaining cool, calm & collective when a child gets a huge egg on their head from an accident

⁃ Dressing up for many occasions – once dressed in a garbage bag as a sea creature with goggles, flippers and a snorkel for a concert in Children’s week

⁃ The outpouring of love my family was showered with during Jacob’s treatment, at the beginning and even more importantly at the end of his life and it continues as we live our life without him physically with us

⁃ An understanding hug at the start of the day as I arrived at work in tears when I own the feelings of having a rough day

⁃ Deep and meaningful conversations on your lunch, morning & afternoon tea breaks (and sometimes in programming time) in the staff room, office and kitchen, and both indoor and outdoor play areas with the children too & on group chats on Facebook

⁃ Celebrating what we all bring to the team, our culture, our talents, our love of animals, our hobbies, our sense of humour, our morals and values, and learning from each other

⁃ The six degrees of separation between the people I’ve worked with;

* first met the organisation manager at a child care centre where my children attended when I was nursing

* a board representative was once the Matron of the hospital where I worked as a nurse, and studied nursing with my mum in the UK

* a director at an interview knew my older sister having gone to the same teachers college as her and they were both dating brothers from the same family

* workmates were friends with people I went to high school with, some knew my family members and friends of friends

* the connections we make with the people we work with who have been through similar life situations, we don’t even have to say anything to them we just know how they are feeling

As I embark on a new chapter in my life as an early childhood teacher at a totally new ‘home’ (out of my comfort zone) I will hold my head up high and realise my self worth having worked alongside inspirational and dedicated educators over the past 17 years, and I will take this knowledge and experience with me from here on in, as I work alongside a new family of educators and fresh little minds to foster lifelong learning.

I will quote some wise words from Oprah Winfrey – ‘lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down’. To all the wonderful children, families, friends and team mates I’ve met in the past 17 years thanks for the ride 😊.

Family portraits

As I turn out my bedside lamp on the eve of my ‘forever 20’ year old son Jacob’s 4th Heavenly birthday his 24th I glance at the photos in a frame on the wall – a glass picture frame with 6 individual spaces. Only 5 of the spaces are filled with photographs. There’s a photo of my girls together and then individual ones of my 4 children. The photo that is missing is supposed to be of my 2 boys together on the beach when they were 12 & 14. I have that photo on my computer for 12 years but have never had the opportunity to get it printed to fill that space. Maybe I won’t fill it now as I don’t want to change it, just as I am a changed person now after all those years.

Family photos take on a different meaning now. I crave to look at the old ones when my family was complete, although it leaves a bitter taste in my mouth. I will always wish we’d taken more and that I was in them more often as I was usually the one capturing it for the future. I’m so glad I took videos too, to capture voices, laughter and real life happening in action. But we will never get anymore. We have to think outside the box and reinvent our family photo without Jacob physically with us anymore.

People may think us weird when we get Jacob out of the box as his life size cardboard cut out at family functions. We stand their next to him raising a glass as a toast to him at various celebrations like Easter, Christmas and birthdays. Over the years we will change but Jacob will stay forever youthful just as photos capture people at their true age at that moment in time.

Amy gifted our family a beautiful present at Christmas 2017. It was a pencil drawing of our family. Five individual photos were sent in to a company to have us drawn. Amy, Rachel, Benjamin and Jacob as individuals and Pete and I together as you can only upload 5 for one print. What a great idea. This was a way to give us more family photos even though we’ve seen these facial expressions in print before, my heart went all a flutter when I saw the finished product. This is a new way of viewing our family together as we travel further into the future. We can add new family members as they enter our tribe as fiancées, husbands, wives and grandchildren.

As another Christmas without Jacob rolled around again I put a twist on Amy’s gift of a family picture last year. I knew of a local talented artist and had asked him to create a painting of my young adult children from a photo taken of them on our last holiday together in Hawaii. I couldn’t make up my mind which photo to recreate so I left the decision up to him. When I saw the finished product I knew he’d made the right choice and again my heart was all aflutter.

Pete too joined the bandwagon with this new way of capturing us all together as a family of six. As Jacob’s 24th birthday approached (his 4th Heavenly birthday) Pete shared with me a photo that brought a smile to my face. A complete family photo of all 6 of us ‘turned yellow.’ We were all drawn as if we were straight out of an episode of ‘The Simpsons.’ It was just like a scene from the show. We were in the lounge room on a couch. Jacob was sitting on the floor, leaning against the lounge as a backrest, I was next to him with my hand nearly touching his shoulder, Pete was next, then Rach, then Amy and Ben was sitting on the armrest, sitting highest of all. With Jacob sitting on the floor it was a real representation of him not being with us all in the physical form as the rest of us fought for a spot on the couch. Jacob would have thought it was funny tha5 he was sitting on the floor because at the beginning of every episode on ‘The Simpson’ something always happened to the couch, whether it be someone was pushed off it or blowing up or some other obscure and random thing happening to that family space. This show was frequently watched on repeat throughout Jacob’s cancer ordeal. The episodes distracted him from the fight of his life and offered a brief light hearted humour. I can’t seem to bring myself to watch an episode as it hurts too much, but the thought of it brings a smile to my face to know how much the show and characters meant to Jacob. This picture has been proudly placed in several spots within our house in lots of rooms and is also my cover photo on Facebook at this present time. I hope he likes how we all look as Simpsons characters.

As we continue to capture family moments while I’m using Jacob’s camera I will keep in mind those words on the title of my 2nd self-published book – Every picture tells a story. Ed Sheeran also chose his words wisely in one of his songs and I will quote them in the last sentence of this story entry as it ties in nicely with the theme of the ways we showcase our new family pictures – ‘we keep this love in a photograph, we made these memories for ourselves.’

The love in our family grows strong and deep, leaving special moments to treasure and keep.

So as I wake up on Jacob’s birthday I glance at the empty space once again in the picture frame on the wall beside my bed, my eyes move around the individual photos of my children within the frame. I wish Jacob happy birthday and think of the ways I can honour the day that should revolve around him coming into my life as a young mum. I’ve decided I will leave the family picture frame with that incomplete spot. For there will always be a missing piece in our family….but he lives on in our hearts, our memories, our stories, our laughs, our smiles, our tears, and within our family pictures on our walls whether they be in real life or drawn as caricatures. We see you Jacob 😊

Coincidence or fate?

When I wrote a particular blog entry on the 21st April 2016 about the messages I heard from Jacob that came in the words of a beautiful song written by Conrad Sewell ‘Remind me’ I never really knew how much that song would mean to me a few years from then. I have my own personal reasons to dislike the saying ‘everything happens for a reason’ – how can we say this when you’ve lost a child? There is a variant of this phrase I prefer to use – ‘we don’t meet people by accident. They are meant to cross our path for a reason.’ These words hold more truth as we travel through life on an unknown, uncharted & unexplored path.

The way I’ve written the sentence about the path makes it sound like an eternity has past in time but I’m really only talking about 2 years and 10months exactly since I wrote the blog ‘all my life…you’ll remind me.’ I will share the link here if you’d like to read the blog entry….

Fast forward to the date of 19th October 2018…. I was given the opportunity to meet Conrad Sewell at the very hospital where Jacob was treated and amongst his beautiful team of nurses. As the 3rd angelversary of Jacob’s passing was approaching I was contacted by his clinical nurse consultants letting me know they were thinking of us during this time. Also in the text I was asked if I would be okay with them passing on my name to the Sony Foundation ‘YouCan’ project which raises money for youth cancer centres. Every year they do an event called Wharf4ward and they usually tell the story of a young person at the event. They wanted to talk to families who lived a distance away from treating hospitals and the challenges of trying to manage being away from home. With me being me how could I not agree for them to call me and ask questions.

I shared my thoughts answering the many questions to shed light on the required subject. The firsthand accounts of what the experience was like is so vital for the understanding of the unmet needs for families like us. There are so many challenges beyond the trauma of dealing with your child going through cancer….the travel, giving up your job, the out of pocket expenses, the loneliness of being away from home…..

The Sony Foundation general manager was delighted with my honest and sometimes brutal answers and I was asked if I was comfortable sharing our story for a short video that would be shown at their major fundraising event on October 25 to help communicate the issues regional patients/their families face. With Jacob’s love of making movies and his career choice of becoming an cinematographer I thought I’d take the opportunity to be a part of the event and be amongst some of the equipment he loved to play and work with. I agreed to be interviewed and filmed along with other key speakers who were sharing their experiences. I quickly learned that one of the people being interviewed was Jacob’s high school friend Mikaila – who had been recently diagnosed with a rare form of sarcoma as well and was getting treated at the same hospital, under the same team as Jacob. The two families joined together by childhood friendships and devastating diagnoses of a similar disease car pooled together to the hospital to bare our souls in front of a camera. Here’s a few photo of the two of them together – one at their year 10 formal and the other one Mikaila visiting Jacob in hospital only a few weeks before his passing.

I played Conrad’s song ‘remind me’ on my phone to Mikaila and her mum Lisa as we drove up in the car. It was the only time I cried on the day. I told them that sometimes I can sing that song ‘loud and proud’ and other times it brings tears. That’s the power of music. Conrad had been given an opportunity to be a voice with his singing and spoken words at the Sony Foundation’s cancer fundraiser and would perform at the Wharf4ward event and we were meeting him at the hospital for the interview and filming. The Sony Foundation’s Communications manager welcome us with open arms when we arrived at the hospital. I had my self-published book in my bag with the heavy thumbed pages turned back to a particular story. My fourth entry in my blog – ‘All my life…you’ll remind me’ – a story where I quote lyrics from Conrad’s song and related them to what had happened to Jacob and our family. I was like school girl going on a first date with my heart such a flutter as I put my hand out to meet him, only to be pulled in for a huggable hello. I proudly showed him the page where his song was mentioned. He was really touched at how much the song meant to me and he signed my book with the words – ‘you inspire me, thank you for this, love Conrad x.’ Conrad serenaded Mikaila with his new single ‘healing hands’ the perfect song to sing to a young girl fighting cancer. On this day I was sharing Jacob’s story and it was hard to stop smiling. Jacob would have been proud as I was interviewed to help with awareness. Jacob would have been in awe of all the equipment the camera crew were using as this was his specialty. I showed them some of Jacob’s photos he’d taken while working on different sets and they were commenting on the elaborate equipment he’d used in his work.

Just a week later from our interview and filming, Mikaila, her mum Lisa, my son Ben and I attended the 10th Wharf4ward event with entertainers such as Jessica Mauboy, John Farnham and Conrad performing his new singles ‘healing hands’ and ‘changing.’ We were rubbing shoulders with high profile people, yet we all felt equal for we were doing it for such a great cause. I finally got to meet Emma, the person I had been corresponding with emails, it was lovely to finally put a face to a voice and feel their emotion in a greeting. I felt Jacob with me as the event unfolded. We got to meet Conrad again at the event and it felt surreal that he remembered us and opened his arms to draw us in for another hello hug. Ben was given a YouCan t-shirt to be apart of the parade with Mikaila before the event officially started in front of the 1,000 guests. We met up with Jacob’s team of nurses Cath and Fiona, and oncologist Antionette on the day as well. Jacob would have been very proud of his brother and friend. The event officially raised a record $1.4 million dollars for youth cancer centres. As I opened the event program magazine which was resting on my plate on the table to page 3 I saw a photo of myself and a little paragraph of words they’d taken from my interview. There wasn’t a dry eye in the audience when the footage from our interview were shown. I held Lisa’s hand as we both cried watching the video on a big screen. Two mums proud of their children.

Jacob had shared his own wishes to improve the facilities for young adults facing cancer. He expressed his concerns of needing a place where he could be in the company of others his age instead of being in an adult ward with people in their 80’s and 90’s and have access to wifi so he could keep connected with family and friends being so far away from home. He never really got to witness any of these improvements happen but it’s comforting to know that we are still making a difference on his behalf because of these fundraising events we are proud to support. The Sydney YouCan Centre will open this year at the Prince of Wales Hospital, Randwick, owing largely to the $7 million raised at Wharf2ward events. I wish the Sony Foundation and YouCan organisations had the pleasure of meeting Jacob during the time of his treatment and care, and get to know the beautiful young lad he was (and still is). I have to continue to share his story to keep his spirit and memory alive and to continue to help fund specialist youth cancer centres and services around Australia. Below is his interview expressing his wishes of what needed to be improved while in hospital having treatment.

‘Important encounters are planned by the souls long before the bodies see each other’ – Paulo Coelho….maybe I was meant to meet Conrad Sewell, maybe it was coincidence….’well look who I ran in to,’ crowed Coincidence. ‘Please,’ flirted Fate, ‘this was meant to be.’

‘Let it go’

The very first morning after Jacob had passed away I began to get rid of things that hurt to look at. Not his personal belongings but all of the medical things that reminded me of how sick he was and this was not the way I wanted to remember him. I thought I was doing ok until I saw his toothbrush sitting in the bathroom shelf. That was when I lost it. I threw it away as he had no need for it anymore but that little brush was his, he’d held it in his hands, kept his teeth clean, travelled with him to hospital yet it had begun to show it’s warn out age with the bristles looking worse for ware but it broke my heart to through it out. I threw it in the bin blinking back the tears in sobs.

People would tell me not to sort out his stuff just yet and wait till the time felt right. What is right? It was all totally wrong. I’d never been in this situation before as far as I knew I was just winging it. I got myself in a state when I couldn’t find a certain t-shirt and tracky-dacks he’d wear during treatment and I accompanied him to every hospital stay. He looked so handsome in his Nike Yankees black t-shirt that he bought on our last family holiday together – Hawaii. I never did find it and I think that we must have left it in a plastic bag for washing at one of his hospital stays, never to be seen again. I have to be thankful that I’ve got many photos of him wearing my favourite t-shirts.

One of his close friends took home Jacob’s pair of sunglasses to wear proudly as he thought of his mate and another friend took several pairs of his size 13 colourful converse high tops. Jacob’s straw hat is perched on his memorial shelf along with his eye patch (the treatment caused Jacob to have double vision) and wallet with his drivers licence still in its slot. Rachel’s partner Adam thankfully took some of Jacob’s clothes as they had similar style in clothes and size and I get a warm fuzzy feeling when I see him wearing them. I kept the clothes that made me smile when I held them close drawing them in for a hug and snuggle, I just wish his scent would stay over time. His other clothes I gave to charity to be sent overseas to an underprivileged village along with unopened medical supplies that couldn’t be given back to the hospital pharmacy. With this exchange of personal belongings it felt good for purging with good intent. In a suitcase in my bedroom I keep a handful of clothes of Jacob’s that I can’t get rid of. I just look over them from time to time when I empty them out on my bed to repack the suitcase for an upcoming holiday.

I have another old hard black plastic school bag in my cupboard. The ones you used to sit on like a horse in the bus line at school waiting for that lift home. In this school bag contains lots of my children drawings, cards and presents they’d made for me for all the celebrated events over the years. I guess I’m what you call a hoarder in these regards to these treasures. I even have the letters that my husband had written to me before we were married when I was living away for nursing.

The things I do relish in throwing out to turn a new leaf is clothes I never wear anymore from my cupboard. I look at garments on the hangers and say if I lost a few kilos I might wear that again – but I’ve been saying this particular statement for as long as I can remember so it’s really time they went in the charity bin. When it comes to throwing out and decluttering my children’s belonging that’s when I feel like Jessie singing her song in ‘Toy Story 2’ – when she loved me. Why does physically holding on to memories have to be so hard?

Clearing out physical space creates an intentional vacuum for fresh, new life. I would love to declutter my house and really decide as I held an object like a vase, or trinket box close to my heart as I asked myself the question in my head – does it bring joy? All of Jacob’s belongings bring joy 💕 ……and heartache.


I was asked to write about having a bias towards pronoia. At first I had no idea what it meant and after reading the explanations given to me for this writing exercise and googling it on the net I began to understand the theory of it all. My life was certainly different before losing my ‘forever 20’ year old son Jacob and what I wouldn’t do to bring him back and change my new ‘normal.’ Life before this moment I was probably more familiar with the opposite of pronoia – paranoia, sweating the small stuff and thinking the world was out to get me. Even when Jacob was first diagnosed, at the beginning treatment, reaching remission, his many relapses and having been told that your life is coming to an end the thoughts in my head were more negative – how could this be happening to my young adult child, my beautiful brown eyed boy, my youngest child? What did I do to deserve this? Why did it have to happen to my family? Why wasn’t Jacob part of the positive percentage of statistics who survived Ewing’s Sarcoma after treatment? Yes I did have a lot to angry about. Having all the negative thoughts in your head all the time brings you down.

Something had to change. I could be bitter, angry and withdrawn pushing away the world, curling up in bed in a fetal position or with Jacob’s help from above I could be learning to ‘SMILE’ again – see miracles in life everyday. I chose the last one as Jacob wouldn’t want me to be sad all the time. We had a motto during the last month of his life after being told ‘there’s nothing more they could do to cure him of the disease’ – it was ‘live everyday of your life as if it’s your last and be thankful for everyday you’ve been blessed with.’ And it’s as if he telling me in a loud voice ‘do it mum, do it for me, live your life well’ as I get up out of bed everyday knowing he’s not physically here with us anymore.

I will continue to smile and see and feel him in the miracles I see everyday like the sunrise, sunset, rainbows, the beat I play on my African drum, the songs that randomly come on over the radio with messages from him in the lyrics, when I see a feather, a penny from Heaven at my feet, a butterfly and dragonfly, when I’m on the lake in my kayak, the first star I wish upon in the evening sky, the full moon that plays with my emotions so. The colours I see are so much brighter now, perhaps in my life before my grief I was too busy to really notice, but now I really stop to smell the roses, the see how beautiful life is and how quick it can all change. It’s all just like the song that Jacob introduced me to on the way home from having chemo. He said ‘mum you’ll like this song’ from the back seat of the car as he played it from his phone. I did love it and shared this with him as I cried behind dark sunglasses without him knowing. This was the song he took his last breath to, as he was surrounded by 19 family and friends – ‘it’s nice to be alive’ by Ball Park Music. Yes it is ‘nice to be alive’ and I’m thankful for all the signs that Jacob is still with us as we tread further down the road since we’ve kissed his forehead, held his hand and heard his voice. I’m using his camera now as his career choice was becoming a cinematographer so I’m seeing the world through his eyes the lens of his camera keeping us connected.

I will love and miss him for the rest of my life until we meet again but in the days that await I will not take things for granted like I did before his passing. I will have those days when the grief will come from nowhere with random triggers that cause burning tears, but I can’t stay with these days, grief will always be part of me but I can’t let the darkness dull the light that’s trying it’s best to shine. I will try and wake up each day with a grateful heart and be thankful for the things going well in my life. I am alive, I have a loving husband by my side, 3 beautiful earth bound children, a roof over my head, fresh water and food to eat, clothes to wear, a job with a regular income, family and a great circle of friends (in real life and the ones I’ve never met yet have connected with online).

With my writing task tonight I hope I have grasped the understanding of the word pronoia and how it looks in my life right now. Pronoia – noun, the belief that everything in the universe is conspiring to support you – my belief in pronoia armed me with a positive and optimistic outlook even during my most trying times….losing my son to Ewing’s sarcoma aged 20.