Monthly Archives: October 2016

‘Dear World…’

Dear world, In my lifetime I’d like to see a cure for Ewing’s Sarcoma and other cancers so other families don’t have to know the heartache of losing a loved one to this horrible parasitic disease. For a cancer that is supposedly rare I can count on my hands the number of children & young adults who are still fighting for their lives or have lost their beautiful lives to the disease is unfortunately increasing.

I question myself did I push Jacob’s treatment enough, was there more I could have asked for or was it just that his body was ravaged with new disease it couldn’t take anymore poison. They are the ‘what if’s’ that will forever be locked in my subconscious. I had never heard of Ewing’s Sarcoma until Jacob was diagnosed and I cringe every time I read about it or see it on the news.

I find it hard to write about the real truths of what Ewing’s is like so I will share the brutally honest words of a young lady who lost her partner recently to this disease.

Forget “inspiring”, “brave”, “positive attitude”… As much as a patient may embody this, sarcoma is ugly.

It is relentless. You can’t cut it out or burn it out with radiation. It always invades your bloodstream and can pop up anywhere in your body. It may go to your bones and break them open from within. It eats your bone marrow. It may attach to a vital organ and grow, crushing the organ until it no longer works. Its favorite place to take up residence is in your lungs. There, it tries to crush your heart or ability to breathe or drown you in fluid. It remembers past poisons you have used to try to defeat it. It mutates and finds a loophole around every toxic drug you throw at it. You play catch-up constantly. You fight against a ticking clock. Finding a poison that may help you stay alive, all while fighting insurance to let you have a chance, when not trying it is certain death.

It is agonizing, scary, sad, ugly, dehumanizing and so so unfair.

What is most unfair is that this monster of a disease (and there are maby types of sarcomas) is ignored. Less money is spent to find a cure than just about any other cancer. My husband is forced to try chemo regimens discovered FIFTY YEARS AGO. All other cancers have the funding to see newer, better drugs to keep you alive longer. This is not fair. I am angry at the world and scared. I don’t know what life will be like next week.

We aren’t ready to give up yet and will fight til the end. He has so much to live for.

Jacob, Ash, Chris, Mitch and so many others had so much to live for and so has Rhys and Kailem and all the others who continue their fight. I hope with all my heart that these new trials will one day eradicate the disease from our existence so that we only hear about cancer when we talk about the zodiac/hororscope sign.

I’d like to leave you with a song that was rewritten by a grandparent of a child who is fighting Ewing’s at this present time. It will probably pull at the heartstrings…it was his hope that it would spread far and wide to be yet another message of support for Childhood Cancer research. It’s understandable that hospitals and care facilities want to show children and young adults being treated and hopefully cured, but he thought it would be useful for people to see the realistic and sometimes sad side of cancer. They tried to show that in a tasteful but powerful way. See if you can find Jacob in it x

‘Lemons + Lemonade’ 

“When life gives you lemons, make lemonade” is a proverbial phrase used to encourage optimism and a positive can-do attitude in the face of adversity or misfortune. Lemons suggest sourness or difficulty in life, while lemonade is a sweet drink. Since we’ve lost Jacob I think our family could make enough lemonade that would hype up a party full of 100 five year olds. Just like life with that rush of hyperactivity from the sweetness and energy of the lemonade the sugar hit has to crash and fall again. But it’s the plan to get back up again and make more batches of the lemonade that keeps you going, regardless of how bitter the lemons are.

Life handed him a lemon,

As Life sometimes will do.

His friends looked on in pity,

Assuming he was through.

They came upon him later,

Reclining in the shade

In calm contentment, drinking

A glass of lemonade.

Four days before Jacob passed away we had such a brilliant day. It was a sunny day on the 3rd Oct 2015 as we set out for a trip down the coast to Nowra for Jacob to sail in a sailability regatta (designed for people with a disability) on the Shoalhaven River. A very good friend of mine was going to be in the boat with him too as Jacob was too fragile and paralysed to drive a car yet alone steer a boat in the water. This wonderful event came about as we were writing up a bucket list of things Jacob would like to do. I had contacted an old friend of mine, the very one who took Jacob out in the sailing boat and asked him for his help in getting Jacob in the water again for a swim as this was on his bucket list too. Well the list was long when you have so many things to do in so little time left on earth.

At the sailing regatta there were many boats in the water, moving around on the slight breeze. Jacob had to be lifted in the boat with a hoist and our great friend Lenny was already on the boat as the master and commander. Once settled, they were off and racing. Ben watched his brother sail around the river on his stand up paddle board with his cousin Paul, catching glimpses of the fun unfolding with his GoPro. Lenny asked Jacob had he had enough after being out on the water for a bit and Jacob said -‘nah!’ They stayed out for 2 and a half hours. Family and friends cheered them on from the shore and enjoyed a picnic when they’d finished. It was nice to see him happy and smiling as he dangled his hands in the water from the side of the boat. We later found out that team Jacob had come first in the doubles.

It’s funny how people come and go in your life and you go for such a long time in between seeing them and just pick up where you left off when you see them again. Well that’s the case with Lenny, Jacob’s partner in the regatta. When I was in my early teens I used to attend the local roller skating rink on a Friday night. This is where I’d catch up with friends, including Lenny and we’d often join forces for the couples skate. The years past and lives moved on till the next moment of meeting when I looked after him as a nurse after his tragic accident that saw him becoming a double amputee – losing an arm and leg and helped him with a short part of his rehabilitation. We both chatted about who we had married, the family that my husband and I had started and the family him and his wife were planning. I was in awe of his sheer determination and strength throughout his hospital stay. How was he so positive with what life had dealt him? I was always aware of what Lenny was up to over the years as he appeared in newspaper articles and on the television doing some wonderful things with sporting events for people with a disability, like disabled sailing, surfing and using an amphibious wheelchair on the beach that can be wheeled in the sea. He was the perfect contact to help let Jacob have the swim he so desperately wanted as it had been over a year since he’d been able to have one (because of his Hickman’s line that prevented him from swimming).
Three days after the sailing event Jacob was given another treat. A chance to get wet in the surf using the amphibious wheelchair. This was where he was awarded with his medallions for winning the regatta in the doubles with Lenny. Everything was captured on video and aired on the wintv news. Jacob passed away the very next day, just before the segment aired on television.

In May of this year Lenny surprised us by telling us that Jacob’s name would be on a trophy that will be given out every year to the most inspirational person. His name will live on in the trophy – Sailability NSW – Illawarra Jacob Wieck Memorial, Most Inspirational. We were also given our own trophy to keep – In Memory of Jacob Wieck – Most Inspirational Perpectual Cup in his Honour.

These are what I’d call our moments of positives that has come from our unimaginable loss. I’d like to think I’m as strong and positive as Lenny and Jacob in the face of adversity. Turning these moments into blessings amongst all the sadness and sorrow. The times to make lemonade from the lemons that land on life’s path in the hope that you avoid getting knocked down. I hope there will be many more positive opportunities and memories to be made in our families future that will quench our thirst as we toast Jacob with sweet lemonade, forever being a part in everything we do.

‘Creative heartworks…’ 

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. I didn’t mind those outcomes, although thinking about creativity does bring up a conversation I often had with Jacob. He had said to me when he was young that he couldn’t draw, and that everyone else in the family had the gene to draw and he didn’t. Like every mum tells their kids that they can do anything their hearts desires – I told him he could draw and he was good at it. It wasn’t until later in life that his true creative talent emerged, and even though he wasn’t an artist who drew pictures he was an artist of another kind – a writer. He wrote his own stories to come to life in his fancy cinematography work with his camera that he saved up to buy, the one I’m trying to use in this ‘capture your grief’ project. I have them still on the computer in word documents. They are still waiting patiently to come to life in motion picture. I would always joke with him that he would make his mum and dad rich with his work in the future. And I truly believe he would have had he been given more time on earth to pursue his dreams.
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 am very grateful for a friend who introduced me to Francesca Cox’s ‘facets of grief’ a self- paced art therapy workshop for grieving mothers. It was through her website that I found out about the inspirational work that others offer for bereaved mothers – CarlyMarie, Lexi Behrndt, Beryl Ayn Young and so many more. 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 and effort for the all the pieces of artwork regardless of what emotion that was driven behind the creating was equal.
I have these creative heartworks scattered around the family room that have become a bit of a shrine in memory of my beautiful brown eyed boy. We might even have to get a bigger shelf as I keep adding items to the collection as I make them. This was the room he passed away him and a place I love to be in as i relax and watch tv and make chit chat with his siblings about how their days have panned out and what’s been happening in their young lives and snuggle with our cats and laugh at the funny things our birds says as he puts his 10cents into our conversations. We have an area outside too so his presence is not just confined to the indoors. We have his memorial bar outside with a plaque on it saying ‘capturing the chaos and creativity in Heaven on film’ where everyone can sit and have a drink for him and ring his bell to declare a toast is due providing you have a drink in hand. 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 guess I could say the words in my blog that I continue to write as I dedicate them 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…’

‘Symbols and signs…’ 

I search my days for those tell tale signs that my beautiful brown eyed boy still surrounds his family with love and protection from afar. So many things hold secret messages in them as they appear throughout the day. The random sighting of a car number plate COB (his nickname is Cobby), numbers 222 – the Angel number, the numbers when you happen to glance at a digital clock 11.11 the opening hours to send a personal message to Heaven and 9.11 being a very spiritual number, if a white feather appears at your feet, butterflies, dragonflies and significant songs that come on the radio at random times that contain messages in the words. 
I feel very connected to the beach and ocean since Jacob is now a part of that space. I relish in looking at all the creations of colour that live under the sea – in the shells, the fish and all the colours. At Jacob’s celebration of life we read out the story of the water bugs/dragonflies and now I have a string of solar powered dragonflies hanging near the window in the family room where he passed away. They have a great significance to me now. I will share with you the story here called ‘water bugs and dragonflies’ by Doris Stickney:
Down below the surface of a quiet pond lived a colony of water bugs. They were a very happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more. 
“Look!” Said on of the water bugs to another. “One of our colony is climbing up the lily stalk. Where do you think she is going?” Up, up, up it slowly went…even as they watched, the water bug disappeared from sight. It’s friends waited and waited but it didn’t return…
“That’s funny!” Said one water bug to another. “Wasn’t she happy here?” Asked a second…”where do you suppose she went?” Wondered a third. No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered it’s friends together. “I have an idea.” The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why.” “We promise,” they said solemnly. 
One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broken through the surface of the water and fallen onto the broad, green lily pad above.
When he awoke, he looked about with surprise. He couldn’t believe what he saw. A startling change had come to his old body. His movements revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings…The warmth of the sun soon dried the moisture from the new body. He might end his wings again and suddenly found himself up above the water. He had become a dragonfly! 
Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly landed happily on a lily pad to rest. Then it was that he chanced a look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.
The dragonfly remembered the promise: “The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.” Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…”I can’t return!” He said in dismay. “At least, I tried. But I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I’ll have to wait until they become dragonflies too. Then they’ll understand what has happened to me, and where I went.” 
And the dragonfly winged off happily into its wonderful new world of sun and air….
I like to think that the dragonfly that visited me on a trip to Cairns with my husband and followed my daughter Amy at Alice Springs was a special visitor from Heaven. ‘When spying on a dragonfly dancing on air, your guardian angel is hovering near.’ 

‘Surrender and embrace…’ 

I think I am doing all I can to surrender and embrace the grief of losing Jacob. Grief is the price you pay for love. A boy do I love that boy! Before you lose a child you tend to think it happens to others, the stories you read about in magazines while you wait for your appointment with the doctor to pass the time. But when you’ve joined the bereaved parents club you begin to find out that there are even more people and families out there that would fill several hundreds of magazines with their stories of loss. We are not exempt from the sadness of loss and neither is anyone else. Death doesn’t discriminate who’s family to tear apart. As I have continued to read those magazine stories at random times I have learnt that the tragedy of losing a child touches famous people too. Famous people that we envy their lifestyles, but you’d never think in your worst nightmare we’d be connected by the one thing that holds an incredible hurt. Here are some of the celebrities who have lost a child:* John Travolta – Jett at 16

* Sylvester Stallone – Sage at 36

* Mike Tyson – Exodus at 4

* Keanu Reeves – Ava – born sleeping

* Mia Farrow – Tam at 19

* Eric Clapton – Connor at 4

* Led Zepplin – Robert Plant’s son at 5
I was tagged in a piece of writing on Facebook by a friend of mine who thought of me when she read it. I loved every word this person wrote – another celebrity sharing a candid private message on how to deal with the loss of someone special in your life. I will take on the meaning of his words as I continue to surrender and embrace my grief of losing Jacob. Quoting Christopher Walken’s wise words for all grieving parents –
“Someday you will be faced with the reality of loss. And as life goes on, days rolling into nights, it will become clear that you never really stop missing someone special who’s gone, you just learn to live around the gaping hole of their absence. When you lose someone you can’t imagine living without, your heart breaks wide open, and the bad news is you never completely get over the loss. You will never forget them. However, in a backwards way, this is also the good news. They will live on in the warmth of your broken heart that doesn’t fully heal back up, and you will continue to grow and experience life, even with your wound. It’s like badly breaking an ankle that never heals perfectly, and that still hurts when you dance, but you dance anyway with a slight limp, and this limp just adds to the depth of your performance and the authenticity of your character. The people you lose remain a part of you. Remember them and always cherish the good moments spent with them.”

here-comes-the-sun

‘Beautiful mystery…’ 


I am forever grateful that I have been Jacob’s mum for 20 years. But I long for more. I wasn’t ready to let go. I wanted to see him fall in love, get married, become a famous cinematographer and get his name in lights, become a dad, travel with friends, watching his mum, dad and siblings get a bit greyer in colour of their hair and to celebrate many happy birthdays. I saw his first breath and I saw his last although it’s not meant to be like that – parents shouldn’t outlive their children. 

I know he would have written several blockbusters, even better than the already brilliant ones we already have on his YouTube channel to watch. If you’d like to see creative talent in action tune into his two YouTube channels – CobbyFilms and JDScreens. I’m not sure how he created all those little skits on his camera that I’m trying to use in the ‘capture your grief.’ I really need to learn what all the buttons and settings are. I need him to be here and teach me. There’s so many reason for him to still be here. 
He would continue to become a beautiful new-age sensitive man, a man with good work ethics, a smiley faced adult who sees the positives in life. A sharp and snappy dresser – I remember his oncologist commented how she like his dress sense and he always looked really nice. I’d take him to see a James Taylor concert as he had lots of his songs on the playlist on his phone. I’d cherish more of those impromptu breakfasts and coffee catch ups on the weekends. I wouldn’t even mind being woken in the middle of the night to pick him up from a night out with mates after having that bit too much alcohol in his system to drive behind the wheels of a car. 
He has my smile, his dad’s dark complexion, the same curly hair as his sister’s Amy and Rachel, shares the same warped sense of humour as his brother Ben. We will forever have this connection. 
Our future has changed without a doubt and new adventures can’t be written down in Jacob’s page but in Lexi Behrndt’s words – ‘tell me, what is it you plan to do with your one wild and precious life?’ I’m going to live the rest of my life living it in ways that would make Jacob proud and honouring his memory and keeping his spirit alive. He was here and he should be celebrated and we will gladly keep saying his name in everyday conversations – Jacob x 

‘Myths…’ 

I’m a day late with writing my passage on ‘myths’ in the Capture Your Grief project. I was too emotional to put my finger on the keypad as it was the first anniversary of our beautiful boy’s passing. I’d been thinking for a long time about how I’d be on the day when it came around. I did think that it would be just like any other days as he is constantly in my thoughts on any given day on waking and before closing my eyes at night. I went to work so it would keep my mind active leaving less time to let sadness seep into my existence. I was conscious of the time on the clock when I got home as he passed at 4.33pm in the afternoon. We had planned on having a gathering with family and friends to acknowledge this significant time in memory of one’s life. I had the house to clean and vacuum, stuff from the shops to buy as I’d forgotten to get a few things that we may need for the afternoon/night, then I had to shower. But when I looked at the clock that moment in history, the ceasing of his breath, that time had past. I had missed it – the opportunity to pay respects to my beautiful brown eyed boy x

A brief moment of guilt washed over me before I began to get things ready for everyone’s arrival. Jacob’s sister Amy bought a game to play during the night – a game that was a favourite of Jacob’s on tv, ‘The Chase.’ He would have loved the banter of answers being called out in the confusion of who was meant to be answering that particular question. We laughed with him and for him as we played. As the sun slowly disappeared the solar fairy lights twinkled into action and proudly became a beautiful backdrop to his life size cut out of his 6ft 2inch frame that we get out of the box at all the family celebrations and get-togethers (others may find it strange, but that’s how we roll). We ordered pizzas as we sat around together, sharing laughter, tears, food and we rang his drink bell at his memorial bar to have a toast to him.

I topped off the night with a late night spa contemplating what life has given us throughout the first year of his absence – including all the myths of grief:

* the pain will go away faster if you ignore it

* It is important to be ‘strong’ in the face of loss

* Grief should last about a year

* If you don’t cry, it means you aren’t sorry about the loss

I’m sure there are many more. The pain of loss never goes away. You can’t hold out being ‘strong’ all the time – let the tears come freely, at all the random times they come. Grief has no time limit – I will grieve and miss him for my lifetime. Grief has changed me, sculptured me into another person, one who cries more easily, thinks deeper, my outlook to life has changed. With Jacob’s love from afar he is helping me to ‘smile’ – see miracles in life everyday and be thankful for everyday I’ve been blessed with and in James Taylor’s song lyrics line – ‘shower the people you love with love…’
A mum’s hug lasts long after she lets go. I hope you can still feel my arms around you Jacob x