Monthly Archives: December 2017

‘Keeping their spirit and memory alive’ 

Since the loss of our beautiful brown eyed boy Jacob, at 20 years of age after a short 13 month battle with Ewing’s Sarcoma, I have made a promise to myself that I live out the rest of my life in ways that would make him proud. I talk about him often and own the bad days and the tears. I am proud of the tears because it means I have loved and lost. When I speak or write about Jacob I don’t do it for sympathy I do it to keep his memory and spirit alive. So how do I live my life in ways to make him proud and how do I keep his spirit and memory alive in everything? I’m still learning how to find ways to do this. No one knows how they are going to handle the grief of losing a child. I’m not sure if I’m doing it right – if there is a wrong or right way. But I just know it’s the right way for me. It is as individual as DNA and a thumbprint and unique to that person. 
How is it possible that it has been nearly two years since I’ve seen his face, held his beautiful hands, kissed his warm forehead, wiped his sweated brow and heard his raspy voice and contagious laugh. The world keeps on turning and life is passing us by without our beautiful brown eyed boy in it. The first year of loss was a blur. It was if I was in a dream with memories of Jacob’s diagnosis and treatment on constant replay in my mind. It’s hard to pull all of those vast memories of his past to the forefront of my mind. I just want my life to go back to the day it was before diagnosis, treatment, grief and loss. I can’t remember what it was like before this time – I was a happily married mum of four adult children. We all lived under one roof in a 3 bedroom house with 2 cats, 2 dogs, a bird and fish. My children were beginning their own journey in life and travelling in the directions of their designated career paths and my husband and I were coming up to that period of our lives of ’empty nesters.’ I am hoping that with time those memories will return and distort the visions and distressing memories that are stuck on replay in my mind. 
I returned to work 3 months into my first year of loss, which included our first Christmas without Jacob. My beautiful workmates let me own my tears with a hug and kind words. I thought being busy would take my mind off the devastating grief I felt inside. There were so many triggers that opened the flood gates of tears – when a particular song came on the radio, when someone asked how I was, when I was shopping in the supermarket thinking about the food he loved, when I looked at photos and family videos and when I saw Facebook updates from his friends enjoying their lives when Jacob’s was cut short. I couldn’t go to church as the hymns made me cry and I was questioning my faith quite a bit at the time. 
I felt the need to talk to others who understood how I felt. I searched online and reached out for others in groups from all over the world. I have found so many beautiful people who I’ve never met before but have since become like family and I look forward to catching up, connecting and sharing stories online. 
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. Some of the creations were created by all the good emotions guided by all the wonderful memories and moments of his life and others were created by the all negativity and sadness that comes hand in hand with grief of losing a child. But the total amount of effort for the all the pieces of artwork regardless of what emotion that was driving force behind the creation was equal. 

We have his memorial bar outside with a plaque on it saying ‘capturing the chaos and creativity in Heaven on film.’ A couple of permanent markers are on the bar so people can write him a message, it’s the one time graffiti is allowed. We ring his bell when we are outside using his bar and will ring it to announce a toast to him as we raise a glass in his honour. I am using Jacob’s camera to capture the world through his eyes, keeping us connected by what I see through the lens of his camera. A banner with Jacob’s beautiful face hangs proudly on the front of a truck at the annual Illawarra Convoy to raise money for Camp Quality, helping children and their families through their cancer journey. Thousands of people line to streets to wave the trucks past along their 70km journey. Never in our scariest nightmare would we ever think that Jacob would become part of the convoy as we watched this event from the side of the road as a family of 6 since it began. 
As the saying goes ‘The most precious jewels you’ll ever have around your neck are the arms of your children.’ I don’t have their arms around me anymore like the quote at the beginning of this paragraph, and I don’t have jewels. But I do have something just like a precious jewel that I wear around my neck and close to my heart. We had some extremely unique and exquisite jewellery made from the titanium rod that was put into Jacob’s leg to replace the space where the tumour was. As I write these words on my iPad I’m tapping away with one hand while the other hand spins the pendant around the cord like the ‘circle of life.’ I’ll hold you in my heart until I can hold you in Heaven. 
Jacob is with us every step we take in this different life we live now. Although he’s not physically here with us anymore, he works his magic to be seen and felt in everything we do and the places we go in our travels. We take his ashes and scatter him in our favourite places on land and oceans. Jacob’s name is permanently on a trophy that is given out each year for the most inspirational person in the disabled sailing club after coming first in a sailing regatta just 4 days before we lost him. 
My daughter gave her brother a wonderful present for his 21st birthday (our first birthday without him) – a life size cut out of Jacob to stand out larger than life. 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. For our first angelversary of our beautiful brown eyed boy we had a star named after him where we mapped the coordinates in the dark sky eating his favourite pizza surrounded by family and friends. 

What will our family do this year as the date becomes closer on the calendar? In my search to connect to other parents who have lost children I found a beautiful mum on Instagram who creates art for angels that grew their wings too early. Bereaved mothers come forward to her with their children’s names, signs and symbols and special quotes or phrases that were unique to their memory and she then creates a colouring in artwork honouring them. The picture I was given is a really special artwork to colour in and feel him close as I slowly breathe him in as I create with pencils, textas and crayons – in the words of American artist Georgia O’Keeffe ‘I found I could say things with colour and shapes that I couldn’t say any other way – things I had no words for.’ 
Broken crayons still colour. 


connection: The word connection is good for talking about the way things relate to each other. Your special connection to your cousin might have something to do with your mutual love for science fiction and barbecue.

A connection can be physical, like the leash that provides the connection between you and your German Shepherd, or emotional, like the connection you feel with your best friend. Any kind of direct relation is a connection as well, such as the connection a detective makes between a footprint at a crime scene and a suspect’s favorite pair of shoes. The root is the Latin connexionem, “a binding or joining together.” – taken from How do we connect to someone who is no longer with us anymore? 
I still have his iPhone 6 that sits on his memorial shelf along with his straw hat, wallet and other special items that belonged to him. His hands held tightly onto that phone as his life became to end. Even though he wasn’t capable of using it he wanted it to be left with him within reach of his hand as he lay in bed. But I can’t connect it to him now as I could before when he was physically here. I still have all his messenger inboxes and sms texts sent from him on my phone and I’m dreading the day my phone dies as I will lose all those precious moments in time. His last words to me on messenger were – ‘hey can you roll us over’ on the 26th September (11 days before he passed) as the disease had made him a paraplegic and he couldn’t reposition himself in bed. His last phone text message was ‘Oops sorry 😮 😥’ What did he have to be sorry for? I was the one who was unable to fix him. I’d love to listen to his voice mail message again – to hear his voice on the line. His older sister Amy used his phone for awhile before getting a new one. She copied down some of the communications with family members as we knew that when she put in her SIM card in the phone we may lose the content from the phone. I was happy that she was using his phone and he would have liked that too. 

I can still connect to loved ones around me, my husband, Jacob’s older siblings, my family, friends and work colleagues using the hand held device. If only Heaven had a phone. As I browsed online for words that offered comfort in one of my sad moments I came across this anonymous verse – ‘I cannot dial your number, I can’t get through to you. I called the operator, she did all that she could do. There is no code for Heaven, I cannot place the call…there are no numbers left, because I’ve called them all. If Heaven had a phone! I’d call you everyday. If Heaven had a phone! There are things I would like to say! I’d tell you that I love you and that I miss you everyday. But Heaven doesn’t have a phone, and so for now…in our hearts you will always stay.’ 
As Heaven doesn’t have a phone, I have to think of other ways to connect with Jacob. Sometimes I have to think outside the box from using all the ways of connecting with him. Not everyone believes in psychic mediums. I was hesitant to go to one at first. But something beckoned me in to seeing a lovely lady who sat me down and began to tell me things no stranger would ever know, even if they scoured the Internet or Facebook. She revealed information that broke me into flowing tears and turned them into smiles. She even knew precious names that had been picked out for a baby that was too beautiful for earth. She said a young male with a curly mop of brown hair was with me with a ‘J’ sounding name. She gave me a message from him – ‘hi mum, I’ve been waiting a long time for you to come.’ I visited this lady only 4 months after his passing as I was more than a bit sceptical of the whole thing. Hawaii 5 O was mentioned, I explained that we had scattered some of his ashes there but she was adamant that it was more than just the country Hawaii itself and kept adding 5 O after saying it (implying the television series). I covered my mouth with my hand and drew a noisy breathe in as I remembered that Hawaii 5 O was filming an episode at a motel that backed onto Waikiki beach on the day we scattered his ashes and I had said to my husband that Jacob would be in his element with all the fancy equipment of cameras, lights and action as the career path he had chosen to follow was becoming a cinematographer. She said he ‘was’ there with us on that day. I have a recorded copy of the reading as a remembrance. I walked out of there wanting more and I have had the pleasure of seeing 6 different psychic mediums now over the last two years. They have all been highly skilled at their given talent, all having unique way of connecting and communicating the messages from our loved ones.   
The last talented man I saw took a walk through my house and could visualise where things were situated. He took a walk in my family room where Jacob had passed away in and mentioned their was a framed picture on the wall with writing on it. Yes, we had a piece of paper in a frame which was a letter Jacob had written to his future self. He pointed out that there was also a framed piece of clothing. This was a caricature of Jacob painted on his t-shirt on our last family holiday in Hawaii. The man asked who the painter and decorator was – he was talking about my husband who had recently ripped up the carpet in bedrooms upstairs and polished the floorboards underneath and he said that Jacob approved of his bed being used again by his brother although in a different room. There were so many more beautiful verifications that he was still here with us all. He knew that a particular photo that was placed on his coffin at his funeral had been used many times. This photo was used on the front cover of my book titled ‘strong words from a wieckling’ in which 58 copies have been printed. 

I will continue to connect with Jacob through my periodic fix from a psychic medium just as I communicate to his dad and siblings and family and friends with conversations, with hugs, with body language, with the wink of an eye and an ever burning love in my heart. Oh how I wish I could connect like that in the personal space again with Jacob. I will continue to find all the beautiful ways to feel him near. In each sunrise, sunset, rainbow after a storm, the appearance of a feather, pennies from Heaven, butterflies and dragonflies, shells washing up on the shore, songs that play on the radio, in things that are ‘orange’ my new happy colour, using his camera and seeing the world through his eyes. 
I will finish on a slightly humorous note (Jacob had a wicked, dry sense of humour) Why did the medium cross the road? To talk to the other side. Just as Adele’s song belted through the iPod shuffle on the eve of his 21st birthday, our first one without him. ‘Hello from the other side’ sang out just as the clock hands ticked over for his 21st birthday. Thanks for the continuing signs JCW love mum x