‘Oh to find a cure’

In my lifetime and not in the far too distance future I hope I will be living in a period where cancer is only known as a zodiac sign. Cancer would be part of our history in stories we were told about how it was in days long ago. Families won’t be torn apart by the loss of loved ones and we’d have a new generation of people who get to live to a ripe old age and pass away with dignity by saying goodnight to love ones then falling into a blissful lifelong sleep and slip away during the night. This futuristic breakthrough won’t bring Jacob back but it would make us feel like we’ve payed it forward and that he’s done his bit in finding a cure for the cancer that took him from us.

Jacob was diagnosed with Ewing’s Sarcoma in Aug ‘14 at 19 years of age. Treatment for this supposedly rare cancer has not changed in over 50 years. This type of cancer targets youth and young adults between the ages of 12-25years. The amounts of chemotherapy and radiation they receive were at levels and quantities that an adult would receive. Young, growing bodies should be given unique doses as the difference between the age groups (youth, young adult and adult) are vast. More research for trials and cures are greatly needed. I’m sure the way to go is along the lines of immunotherapy in which your own body and cells works it’s magic in curing itself. Jacob had his own stem cells taken out in the case of a relapse after being in a long period of remission. But he was never in the situation where this was possible. He relapsed with the disease taking over at a nasty accelerated rate. We pool money religiously into fundraising events to hopefully find cures but the rare cancers never see a cent, the more well known, highly advertised cancers get the exposure needed. People world wide are being cured from Leukaemia, breast cancer, melanoma and bowel cancer. Yet the statistics of Ewing’s Sarcoma are low. If a person is diagnosed with metastatic Ewing’s (meaning that it has spread to other areas) 25-30% of people are alive in 5 years time after treatment. We always thought that Jacob would be in that percentage. Someone had to be included in those statistics and why shouldn’t it have been Jacob. It was the type of positivity we needed to get him through the most horrible time in his young life.

We need a well known member of the public to take on an advocate role for our youth. Someone in the public eye to be a spokesperson to share important knowledge to medical teams and schools about Sarcoma awareness. Someone that people look up too, particularly the youth, the vulnerable cluster of humanity this disease targets. I have a few people in mind – Beau Ryan and Matty Johns are prominent figures in the sporting industry who would suit the role as they are already heroes to many youth and young adults today. If they begin to speak of the symptoms associated with sarcoma in detail with messages that will be heard and absorbed in young impressionable minds, treatments may begin a lot sooner and more lives will be saved as they are often misdiagnosed with sporting injuries instead of something more sinister. Time is critical.

Many local medical practitioners have never heard of the many types of sarcoma and what it’s doing to our future generations and are often in a position where it’s in the ‘too hard basket’ to deal with and they refer the patient to someone else. Wouldn’t it be wonderful if we had these advocates for our youth who shared knowledge and wise words to targeted audiences so they could live out their dreams and live long healthy lives they deserve.

Beau Ryan would be the better choice for me as he went to my children’s high school, lived in our neighbourhood, my husband knows his father both socially and professionally and he was a player in my favourite rugby league team the Cronulla Sharks and Jacob’s favourite team West Tigers.

Sarcoma awareness colour is yellow, breast cancer is pink, black for melanoma, orange for leukaemia, just to name a few – all the colours of the rainbow represent a different cancer. With a cure for all the cancers in the world the impression of a rainbow will be different. Without cancer we will be like a rainbow – live a colourful life, be an inspiration, bring unexpected joy, see beauty in life’s curves and be someone to look up to.

‘Sisters’

‘A perfect sister I am not, but oh so grateful for the one I’ve got.’ I consider myself very lucky to have my older sister Trish. We have an awesome relationship as far as sisters go. We fought like siblings do when we shared our room together. I used to hate it when she read her late night novels & needed the lamp on, so I’d make a darkened cubby house using my dressing gown tucked into her mattress on the top bunk. She still loves to stay up late and sleep in whereas I loved my sleep & wake early. She’d take advantage of me and make me drive her car home from Dapto Leagues Club after she’d had too much to drink (& she sometimes wouldn’t come home with me, leaving me to tell mum where she was). She was always someone I strived to be like. I chose her subjects at school thinking I’d do well in those too, but boy was I wrong – the fact was I really didn’t want to be at school. We shared clothes and makeup, and had the same friends and listened to the same music and songs that we’d tape from the radio. She always tells me that my memory is better than hers and I’m grateful to have them all. We got engaged within a month of each other and married our partners only a year apart.

Future generations of ‘family’ started with my daughter Amy, then came Trisha’s twins James & Mark, then I had Rachel and Benjamin, Paul, Jacob and Luke followed to join the crew. During this period was when the true sisterhood journey took our sibling relationship to another level. We rang each other everyday (as we still do today) as we worried about breastfeeding, rashes, teething, miscarriages, tantrums and the overwhelming feeling of ‘are we doing ok as mums.’ Our lives together as family has been captured over hours of footage on film. So many memories captured on the Super 8 films with no sound and hours and hours on vhs tapes which have now been converted onto DVD. Still so many more moments to capture and so many that we never want to forget, cherished memories of those who are not still with us in the physical sense but are deeply rooted in our hearts.

It’s when those sad memories come to the surface of the mind and leak out as tears on your face when I counted on my sister the most. She accompanied Jacob & I to many treatments, appointments, scans and blood tests sharing the load of driving to Sydney and back and kept me company overnight in motels while Jacob was admitted and cheered me up with wine, cheese, crackers and avocado as it’s always ‘5 o’clock somewhere.’

Trish has shared my tears, made me laugh, listened to me whinge and scream about life being so unfair at times. She shared my joy of Jacob’s remission and shared my sorrow when we heard the news from the drs on Daffodil Day that there’s nothing more they can do to cure him of the disease. We talked about the dreams we had for our children, their future careers, where they’d travel, the engagements, weddings and baby showers to plan. She has an awesome wardrobe of clothes that I pick and choose what I’d like to wear to various functions in all different colours and styles like the ever-changing seasons. She has the tendency to buy things on the spur of the moment where I seem to be a bit frugal with my spending. Luckily we are different and yet the same in many ways – I’m on time and Trish is nearly always 15mins late, I like white wine and bubbles and Trish prefers red and we enjoy each other’s company even when nothing is being said, we are content to just ‘be’ in each other’s presence.

So today as I open my eyes on Easter morning, I am grateful to be spending the day at my sister’s home in Jamberoo with family. We will have way too much food and sit around during the afternoon and veg out in a food coma, conversations all happening at once and no one really getting heard, taking family photos of the unfolding Easter egg hunt with a beautiful backdrop of green trees and blue skies of a country coastal town. Coming over to my sisters place is like having a mini pamper day, a zone out time from the hustle bustle end of a busy working week and where I get to relax and put my feet up. I hope all the sisters in the world (even all the soul sisters out there without a biological one who find each other) are as lucky as me to have such a relationship that I have with mine – for my girls Amy and Rachel, for my mum and her sister Hazel and for my nieces Isla and Aerin – the best present our parents ever gave us is each other.

Sisters are for sharing laughter and wiping tears. Thanks Trish for doing all of the above. I don’t know what I’d do without you in my life x (sorry Stephen 😉 I owe you a brother story one day too)

‘Home’ 

Week 52: ‘home’ 
I like the saying ‘home is not a place…it’s a feeling.’ I can find myself at ‘home’ when I’m visiting friends at their house or at our favourite coffee shop. It’s those warm fuzzy feelings that you get when you walk through the door of your home to put your feet up on the lounge after a busy day at work, the way the dog greets you at the back door begging to come in and be fed, the way the cat does figure eights in between your legs making itself dizzy wanting some attention. I even feel the sense of belonging and home when I walk into my work space. I work at an early childhood setting for young children aged 0-5 and it is very important to have a homely environment where they can belong to and it’s even more of a bonus if the educators can feel the same type of belonging within this environment. I have worked in several other different early childhood settings but have always referred to this one as ‘home.’ 

Thoughts of home can be remembered by certain smells too. The smell of jasmine reminds me of summer and my childhood home. We had jasmine growing up the railings of the stairs to our verandah, with each step we took to get to the front door the scent got stronger. The smell of the ocean reminds me of my home growing up too. We live across the road from the lake and on those hot days the weed that has drifted onto the shore gets a bit sunburned and smells quite distinct. As I drive over a bridge that connects two suburbs within our home town I pretend that I’ve never been across it before. The bridge crosses the beautiful Lake Illawarra and I ask myself ‘would this place make a special home for a family?’ It’s not a hard question to answer as the boats, the crystal clear water, the island, the water sports, the picnickers and the picture the area evokes answers it for you. 

As I continue to drive along the road just past the bridge I see my home. Today our home looks different than yesterday. For today we have an empty car spot out the front. I had to make a heartbreaking decision today to surrender Jacob’s car. I felt really guilty getting rid of it to the scrapers. It runs out of registration tomorrow and it was in need of some major repairs and to fix it and register it again required money we just don’t have at this time of year. It was only ever used as an emergency car if ours were getting serviced. It had done us proud for the period we had it in our possession. Jacob bought it with his own money and it got him from ‘a’ to ‘b’ without much going wrong with it. Watching it drive off on the back of the truck brought the tears strong and fierce. A little white butterfly circled the car for one last inspection and it was gone. I hope Jacob’s enjoying his ride in Heaven now it’s gone home to where he is. I wish you could bottle up those scents that take you home within your memories. His car smelt so familiar still to this day, and by no means an unpleasant smell either. 

I’ve come to realise that the definition of home does not always mean the place where you live. Home is a person or place that makes you feel completely safe and comfortable. Home – a story of who we are and a collection of things we love. 
I will quote these wise words from the mum off the movie cheaper by the dozen 2 – ‘Letting go is the hardest thing you can do as a parent. You have to settle with the past, engage in the present, and believe in the future. We’re always learning as parents, and that the bond is forever. Even as the kids grow up and venture out on their own, we ‘ll always be with them and they’ll always be with us. Because life is a voyage that’s homeward bound…’ 

Here’s a photo of ‘home.’ This is the sight we see as we drive along the familiar road and spot our house with lots of cars out front – minus one. I captured the headlights of another car passing my home looking like a streak of lightning as I took this shot aglow with Christmas lights as well. 

‘Me’ 

Week 51: ‘me’ 

I’m Debbie, a 53 year old married mum of four young adults – 3 beautiful beings on earth and 1 equally beautiful Heavenly son. As a little girl I dreamed of becoming a nurse and a mum. I believed I could and I did. A newly graduated nurse married her soulmate in 1987 and with this union came 4 children within the next 7 years. Life was good….fast forward to Oct 2015, to where we lost our 20 year old son, brother, grandson, nephew, cousin and friend Jacob. In his brave short battle with Ewing’s Sarcoma he taught us to be thankful for every day you’ve been blessed with. I saw his first and last breath in life (although it’s not meant to be that way) and I’m privileged to have been his mum. We are all still trying to adjust to living our lives without him and in ways to make him proud. We spent the last month of his life ‘inhaling’ and breathing him in, wrapping him up in love and making more memories to cherish. ‘Stay golden pony boy’ – a line from the movie The secret life of Walter Mitty. 

I am…a bereaved mum, a wife, a friend, a daughter, a sister, a niece, an Aunty. I am sad, happy, broken, blessed, shattered, thankful, gutted, mindful and confused all blending into one on any particular day. I am no longer who I was before. But I am learning to smile again – see miracles in life everyday with Jacob’s love and guidance from afar. 

I am a better person because of him. 

‘Shadows’ 

Week 50: ‘shadows’ 
Never fear shadows. They simply mean that there’s a light shining nearby. I’ve never been scared of shadows. I have loved watching scary movies ever since I was really young. I’d wake my younger brother up in the middle of the night to watch the double creature feature on tv. We’d sit there with our hands over our eyes opening our fingers with just enough room to watch a small section of the screen at a scary part. I must have shared the love of horror films to my children as they have inherited the excited buzz when scared from a horror film. I loved listening to ghost stories by torch light at a campsite. I loved playing hide and seek and finding the best dark place to hide and jump out with a scream when found. 
Now I’m older and wiser I still never fear the shadows. As I dabble with Jacob’s camera those shadows cast a better picture on what you’re capturing as we learn that the best time to take those perfect shots is early morning and late afternoon where the light is at it’s best. When I look at those photos of people surrounded by a glowing light of birthday candles, or by the twinkling lights of a Christmas tree, a sense of calmness comes over me. There’s something magical about the light from a single match amongst a room full of darkness and shadows. One tiny match can give off so much beautiful light. 

I have to think that the shadows out the corner of my eye as little glimpses of Jacob’s spirit around me to keep us safe or was it my mind playing tricks? I’d like to think that it was Jacob. I’m lucky that I have Jacob’s movies on his YouTube channels to watch his creative talent come to life as he made his short, scary and shadowy movies that give you that shiver down your spine and make the hairs on your neck stand on end. People who watch one little movie in particular called – Abandoned a teaser trailer, thought it was a real trailer for a new movie that was coming out, and expressed interest and said they couldn’t wait for it to be released. I’m sure he would have become famous had he had more time on earth to pursue his career of being a well known cinemaphotographer. 

The candle in the photo that accompany these words cast shadows on the walls from the naked flame. I love how the dragonflies fly around from the heat generated by the candle. I light this candle in memory of Jacob. Emma Thompson once said – ‘once you’re a mum, you’ve been split into two people. It’s like Peter Pan and his shadow.’

That’s the way I feel about the loss of Jacob. Still connected in so many ways. In shadows, in light, in sunshine, in rain, in life, in death and in my dreams. You can’t outrun your shadow. So, dance with it. 

Here’s Jacob’s little movie titled – ‘Abandoned’ hope you are not too scared by the shadows in it… 

‘Create’ 

Week 49: ‘Create’ 
Since the passing of my son Jacob I have connected with lots of other bereaved parents on Facebook and Instagram. It was on Facebook when I was on looking at the group ‘facets of grief’ that I first found Beryl Ayn Young’s course called ‘illuminate’ – lighting the path to photographic healing. I loved searching for that perfect photo that captured each lesson and I particularly liked the writing that accompanied that photo as I was writing from the heart. In two years I have created so much in honour of Jacob. ‘Facets of grief’ gave me 40 different prompts for creativity over 40 weeks (40 weeks was a number chosen to represent the weeks a child develops in a pregnancy) I started my blog as one of these prompts. 
From connecting with these great sites I have gained even more creative outlets -CaryMarie an artist that paints your child’s name in the sand and runs challenges and memorial days for people to join like ‘capture your grief’ and ‘ the prayer flag’ project, Lexi Behrndt with her beautiful words offering healing from the loss of her son. I’m forever grateful that I found this wonderful site 52 moments:a Recapture Self Photo Community (now Recapture Self Village) with Jen and all the lovely people I’ve got to know online. I look forward to seeing what the weekly photographic word prompt is each week. Once I know the word for that week my brain kicks into gear and I begin to think of different images I get from that one word and how I can relate it to our memories of Jacob as the photos and words each week get placed into my blog – a blog that I dedicate every word to Jacob so his spirit and memory stays alive. There are so many creative outlets that you can tap into and there are so many more that I haven’t even touched on or shared. 
Well this year I found another one to participate in. I participated in a memorial ornament exchange for Christmas. Families from around the world complete and return a questionnaire about their child. They ‘draw names’ and each family gives and receives a personalised ornament. Some families hand make and mail their ornaments, and others order and ship online. I was given a beautiful family to create a memorial ornament for who had lost a baby at birth. The questionnaire gave me 4 little things that are special to his memory – stars, dragonflies and paper boats and the colour blue. I’m sure Jacob was helping me with this creative task as I began to gather my items. I had a picture in my head of what I thought it would look like and I wasn’t disappointed with the end product. I’d like to think that Jacob has met the little baby that I was making the decoration for, that they’d both be smiling down as their mums create something so meaningful during the festive season. 
I was absolutely in awe of my memorial ornaments that I received as well. I was asked ‘what was one of Jacob’s favourite movies?’ as his career path was becoming a cinemaphotographer. He had too many favourites but there was one that he commented about on his Instagram account. This quote from the movie ‘Interstellar’ was written on the other side of his ornament – ‘love is the one thing we’re capable of perceiving that transcends dimensions of time and space’ speaks volumes. 

As I continue to find creative outlets to keep Jacob’s memory and spirit alive I will think of this quote -‘Create what sets your heart on fire and it will illuminate the path ahead.’ For me, writing and creating things to honour Jacob has helped shape my mind to be in a much more healthier space in those dark times that come with grief of losing a child. I’m very thankful for so many opportunities to ‘create.’