Monthly Archives: July 2016

‘the will to live…’

Miracle challenge 7

Miracle challenge week 7 choice number 3 – write a story using the words ‘keeper, couple & time’

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Live this day as it was your last….that was our motto since we heard those deafening words – ‘there’s nothing more we can do’ on daffodil day 2015 (a major fundraising day in Australia for cancer research). I am in total awe of the way he handle the news that his life was coming to an end. He handled it the same way he did when he was first diagnosed 1 year previous to hearing this updated news. With fearless courage, bravery and strength. I am truly honoured with the relationship we had during that period of his life. Some days we didn’t even have to say anything, I just knew what he was thinking by his look. There were only a few occasions that I saw him breakdown & my heart nearly split in two. The first tears came when he was told that he wouldn’t be getting out of hospital for Christmas and that he’d only be given ‘gate leave’ for a few hours to share the magical time with family and friends in what was his last Christmas on Earth. Prayers were answered his blood levels increased dramatically overnight and the dr on duty had a change of heart and Jacob was granted a longer time to be at home. He joined us all at 10am for family fun and he returned to hospital at 5pm realising he was quite tired and the rain was settling in at home & the gathering was getting weary as well from an emotionally charged day. He was discharged to home on Boxing Day.

The second flood of tears fell as soon as the room cleared from all of the Drs, nurses, social workers after delivering us the most devastating news anyone wants to hear. I didn’t think my heart could break again as I don’t think it was repaired from the last time. It doesn’t break, it just has holes in it which lets the light in like a stained glass window. Letting more light in over time, it will never fully repair itself as that’s where I keep his memories locked away and where my love for him will continue to grow. I saw tears again when he spoke to one of his favourite nurses about planning his own funeral and planning his ‘celebration of life’ telling her that he still had his Catholic faith. Young people shouldn’t have to deal with such things.

If I can only live the rest of my life with his determination, strength and courage to face what comes my way I will be honoured. He taught us to cherish every day we’ve been blessed with and to tell loved ones we love them. He must have had so much fear in his thoughts but never once did he share them with me. I hope I was a positive influence as he was going through treatment as I only ever talked about him getting better and the plans for a brighter future when he was in remission. Even when he would ask me what I thought the pain he was experience was, if I said ‘I didn’t know’ he’d say ‘can’t you make something up.’ Every new pain he felt was unfortunately new sites of disease as he began to successfully read his body. Deep down he knew!

On the day he was first diagnosed he took it in his stride, mulled it over in his head and then said ‘ I’m hungry, let’s go get subway.’ That’s what he was like. Once we were home to spend the rest of his life we wrapped him up with love and breathed him in. One particular day, out of the blue he stated ‘I want to go to Mogo Zoo,’ so plans were put into action of a so called ‘bucket list’ of things he’d like to tick off. The palliative care team tried to warn us of the trips we’d plan saying his blood levels were too low, that he could pass away in the car. But he didn’t care, he wanted to put more living into the rest of his life. He wasn’t ready to meet his keeper yet, all his beautiful nurses in Sydney said he had way more living to do and not deny him of the blood products he needed to enjoy a few more days. Just a few more days to enjoy the things he wanted to do. Had it not been a public holiday in the days before he passed away, I’m sure he would have had a top up of blood products, but we didn’t want to bother the hospital during the time where limited staff on duty. With his bloods through his boots, platelets of 4 hb of 30 he enjoyed a fantastic day of sailing in a boat in a race where he came first. He sailed with a one armed, one legged inspirational man in a sailing boat designed for disabled people. What an odd couple! Jacob had to be lifted into the boat with a hoist as his disease in his spine had caused him to become a paraplegic with no power or feeling below his hips.

Family and friends gathered on the shore cheering them on in the race. His brother Ben and his cousin Paul followed them closely on a standup paddle board. We enjoyed a picnic with his favourite food & drinks, maybe not the healthiest of drink mind you, but who cares at that stage of your life – bbq chicken, fresh rolls and Coca Cola. This fantastic day was just 4 days before we lost him. This day was followed by another beautiful day just 3 days later. He had the opportunity to visit the beach in an amphibious wheelchair that could take him in the waves to enjoy the salt water one more time. A local news crew came along to capture the moment for us where he was presented with two medallions, one for him & one for me. I will share with you the extended footage of the beach outing with this piece of writing. Jacob passed away the very next day after the beach outing. His body was too weak to carry out anymore items on his bucket list. It was just his time, he couldn’t hang on to life anymore, he’d had enough, he was just too tired.

Cancer cannot silence courage. I will buy a tigers eye gemstone to personify Jacob’s courage, strength and personal power and say the affirmation – ‘I am courageous, strong and powerful’ and believe the words I can hear Jacob telling himself inside his head as he tried his best to beat Ewing’s Sarcoma. Courage doesn’t always roar like a tiger. Sometimes courage is the little voice at the end of the day that says, “I’ll try again tomorrow.” Courage isn’t having strength to go on – it is going on when you don’t have the strength. Love you my beautiful brown eyed boy x

‘onion tears…’ 

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Miracle challenge number 6, choice number 3 – write a short story using the words ‘plenty, postulated & suitable.’ 

While completing week number 21 in the ‘choosing your breath’ workshop I had think what ‘grief is….to me’ The grief of losing a child is like losing a piece of yourself. If I could illustrate this grief as something tangible, or describe it as something, what would it be and why? The image that comes to my mind is an ‘onion.’ I think grief is like an onion. You peel it off one layer at a time, and sometimes you weep. It’s hard to imagine a civilisation without onions. 
Each day is a new layer of that onion. Some days the taste is sweet like the way we make a yummy caramelised onion to add to a favourite meal, or the perfect zing to a summer salad. Other days we are remind by it’s bitterness and way it repeats in the depths of our bellies. The vile juices react with our body and makes us hurt from the inside. I have never been able to cut an onion without crying. Sometimes the tears shed will be driven by the happiest of times we’ve shared, but the other tears will be shed because of the future that’s lost. Their are plenty of layers within the onion so every day grief will be different. 
But over time the way I visualise my onion may change and I hope it does. In my words of describing ‘grief’ as the image of an onion, I have postulated my opinion that grief changes from day today. One beautiful lady explains the ever changing days of grief beautifully – ‘ as far as I can see, grief will never truly end. It may become softer over time, more gentle, and some days will feel sharp. But grief will last as long as love does – forever. It’s simply the way of absence of your loved one manifests in your heart. A deep longing, accompanied by the deepest love. Some days, the heavy fog may return, and the next day, it may recede, once again. It’s all an ebb and flow, a constant dance of sorrow and joy, pain and sweet love’ – Lexi Behrndt 
Grief 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. 

   

“you should be here…”

'miracle challenge week 5'

Miracle challenge week 5, number 4 – a story featuring the words ‘negative thoughts’

“Life should not only be lived. It should be celebrated…” And birthdays are always a great way to start a celebration. I can remember my 21st birthday just like it was yesterday, although it was just a tad over 30 years ago. I chose to have a fancy dress to celebrate this milestone birthday. I’ve had a fear of or rather a dislike for clowns since I was young having been traumatised as a young child being chased by one. Not sure why I chose to dress up as one on this special occasion. I also wore a weird jacket I bought from a local ‘op shop’ with a wooden parrot stitched into the shoulder just like a pirate.

Pete dressed up in a light blue/greyish suit with a Karate Kid bandana around his head. That was the night he talked to my dad about his intentions of asking me to marry him. My mum and dad gave me a photo album to fill with lots of memories of that night. You can never get enough photos (according to me). I made the decision long ago that I would take lots and lots of photos throughout my life and I will continue to do so. As I looked back at photos of when I was young and pointed out to my dad and asked ‘why was there more photos of Trish and Stephen than me?’ He said that when I was born the slide projector had just come in vogue so I had more of those little square photos that looked like a negative that you held up to the light to capture my early years. So I was on a mission to capture every moment.

Amy also celebrated her reaching 21 with a fancy dress party. An 80’s party for after all she was an 80’s baby. Rachel celebrated hers at a local club which saw her dad Pete get kicked out of the private function for accidentally smashing a wine glass on the table by knocking it over, with the staff saying he’s had too much to drink. Rach too was warned to stop drinking. It was a private function, separate from the rest of the public so what harm were we doing – just enjoying ourselves with family and friends. Ben didn’t want a party. We celebrated his 21st with a cake while on a weekend getaway at one of our favourite coastal retreats. His monetary present helped pay for uni games which seemed more important than a party at that time.

Jacob had plans for his own 21st too. To travel with his best friend Chris to America and travel down ‘Route 66’ and visit places like Carolina just like James Taylor visited in his mind. He never got to reach 21. He is our “forever 20” boy. In February this year I saw a physic medium and she told me she saw lots of helium 21st balloons. He wanted a party. So plans were put in action for a celebration.

It was a beautiful March night, the eve of his 21st birthday. Family and friends gathered around our backyard decorated in everything ‘Hollywood’ as he dreamed of becoming a famous cinematographer. His drink bell rang all night and every time it went off we stopped what we were doing, made sure we had a drink in hand and toasted to him. People wrote messages to him in permanent markers on his memorial table where a lonely bottle of Bundaberg Rum stood. His favourite drink for everyone to share.

Rachel bought her brother a wonderful present for his 21st. A life size cut out of Jacob to stand out larger than life at his party so his everyone could have photos with their mate on the red carpet.

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Our warped sense of humour will get us through tough times and we will continue to ‘get Jacob out of his box’ to join us in all family gatherings to come. There was lots of laughter and smiles as the party kicked on. I had managed not to shed a tear up until the moment we played his dvd we made for the celebration featuring the two songs that mean so much to me now. The next lot of tears came when we were counting down the minutes to his first Heavenly birthday – his 21st. ‘5, 4, 3, 2, 1’ – Adele’s words sang out of Amy’s iPod on shuffle – “hello from the other side…” It was a message from Jacob letting us know he was here with us as we celebrate ‘him.’

As the birthday celebration came to a close I found a balloon that had escaped being drained of air from Amy and Rachel’s quest to talk in a high pitched voice. We thought that we’d let it fly free as it was the last survivor. So we ventured outside and set it free only to the disappointment of it being captured in one of our trees in our front yard. We thought it wold pop but it didn’t. It was really stuck, the only way it could escape the branches grasp was to float downwards and that defies gravity and doesn’t seem possible. But what we witnessed was nothing short of a miracle. With our own eyes saw the balloon work it’s way down out of the branches and towards the open air of a clear sunny sky. We watched it float away till we could see it no more.

While I was cleaning the house several weeks later I found a balloon from Jacob’s party. It was still blown up, just a little smaller. To our amazement it still exists today – 4 months later. It’s will power to live is phenomenal, just like Jacob’s will to live out the last months of his life to the fullest. I think the little balloon wants to hang around until all of his friends have celebrated their own 21st’s as the year progresses. It’s Jacob’s way of sending ‘happy birthday’ wishes from afar.

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I found one of my 21st cards sorting out some old boxes in the cupboard and I’ll leave you this message and thoughts…”As you grow up, make sure you have –

  • more dreams than memories
  • more opportunity than chances
  • more hard work than luck
  • and more friends than acquaintances

May you have the very best in life”

My tears for Jacob are often triggered by my ‘negative thoughts’ as to why was his life cut too short? Why was he denied more birthdays? Did he have the very best in his short life?  I’m never going to get more photos of him to cherish. What we’ve got that’s it. But having these thoughts doesn’t help at all. I don’t want to be a negative person. I want to be more positive, and with Jacob’s guidance I will continue to ‘smile’ – see miracles in life everyday. I hope you enjoy the photo slide show of his 21st party accompanying this blog. The first piece of music you will hear on half of the photos comes from a delightful movie called ‘The cider house rules’ and on the other photos you’ll also hear a poignant song track titled “You should be here” and so he should have been here to celebrate his 21st birthday with loved ones.

Grief is my dark side…

Miracle challenge week 4, choice number 1

‘Miracle challenge week 4’ – write a short story, not sure if mine qualifies as short 🙂 using prompt sentence ‘everyone has a dark side which he never shows to anybody.’ Challenge number 1.
From the words of the famous writer Mark Twain – ‘Everyone is a moon, and has a dark side which he never shows to anyone.’ I think to a degree, there is a dark side in all of us, that we don’t want others to see, because we are afraid they won’t like us or love us. It has to do with our character and personality and possibly our individual zodiac sign – ‘everyone has a dark side which he never shows to anybody.’ Mark Twain was born shortly after a visit by Halley’s Comet, and he predicted that he would ‘go out with it,’ too. He died the day after the comet had returned. He went out with a bang so to speak, just like our boy Jacob. Packing so much into the rest of his life right up till the day before. He is our shining star, like Halley’s Comet.
Well I can’t really say that I’ve ever seen Jacob’s dark side, particularly like the clip that accompanies this blog called ‘Jacob’s bad side.’ I hope the clip won’t scare too many people as it has a horror undertone & special effects.  Jacob came up with the idea that Ben would catch his dark side on camera in a little movie. With his creative talent he pulled it off and a nice piece of filming payed off, adding another one for his collection. Amy was supposed to help but she couldn’t throw the ball the right way so she was cut from the production. Rachel wasn’t there at the time, and Ben was in control of the camera, running scared from Jacob’s dark side which was luckily great acting and trick photography on his part. Who doesn’t love a good scare!
Let’s take a look at the dark sides of zodiac signs as we all know a bit about the good traits. A book reveals all called ‘ the Darkside Zodiac,’ by English astrologer Stella Hyde. I’ll check out how my family fairs. According to the book a Pisces’s (Jacob) dark side is Envy. Ben & I are both Gemini’s and because they are twins we apparently need two for each twin – Pride, lust, envy, and greed. Pete is a Libran – vanity, greed and sloth. Libyans would find it impossible to choose just one. Amy is a Virgo and insufferably pleased with herself, cruelly critical of everyone else – Vanity sums it up. And Rachel is a Scorpio. It says that the Scorpio dark side is darker than the rest. This brings a smile to my face because we as a family have seen her in action and we’ve always said ‘she has a sting in her tail’ just mucking around as families do. Their favourite deadly sin is lust – for power, for money, for status and for revenge. When looking back at all if the information just shared ‘take it with a grain of salt.’ Please don’t take it seriously as I’m sure it was written in fun. I don’t want to offend anyone with my writing 🙂 Reader reviews of the book have said it’s funny and hilarious not like your regular book about horoscopes.
I can relate to a little bit of my dark side using the word ‘envy.’ A dictionary describes the word ‘as the feeling of to have what someone else has.’ Yes I am envious of young adults who get to live out their lives to the fullest, why was Jacob denied of this? By having these envious feelings make me a bad person? I hope not. I’m pretty sure envy plays an ugly part in grief. As I look at his friends status’s on Facebook I really celebrate and enjoy their ever changing lives for the better over time as I hide my dark side feelings of envy. I swallow it and try and hide it just like the other nasty emotions this tragedy has bought about. I’m not proud of this dark side. I’m envious of the person I was before Jacob’s passing. I want to go back to being the mum of four, to my old life, the way it was before. Before we lost Jacob. Before the heartache and sadness.
As the many dark sides of grief manifest in my mind, body and soul I’m constantly learning how to deal with these feelings as they appear at random times throughout the day and night. Learning how to control them, and to stop letting them control my life. I’ve got to stop feeling guilty for finding my ‘smile’ again. And Jacob would want us to continue to ‘smile’ – see miracles in life everyday. Grief is my dark side, and the emotions that come with it are what I hide. In Lexi Behrndt’s own words – ‘even when the darkness once again encroaches, it’s the stars that remind me that there is always light,’ and Jacob is my star and my guiding light towards healing.

– Grief only exists where love lived first…