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.