All posts by wieckling

About wieckling

Hi I'm a 51year old married mum of 4 beautiful young adults. Three young adults on earth and one beautiful boy in Heaven. I am 'blogging' in honour of Jacob my 20 year old son who passed away in Oct '15. I will share my feelings, emotions and memories as stories to help keep him alive in as many ways possible and with the hope the stories help other families who have lost loved ones.

‘Let it go’

The very first morning after Jacob had passed away I began to get rid of things that hurt to look at. Not his personal belongings but all of the medical things that reminded me of how sick he was and this was not the way I wanted to remember him. I thought I was doing ok until I saw his toothbrush sitting in the bathroom shelf. That was when I lost it. I threw it away as he had no need for it anymore but that little brush was his, he’d held it in his hands, kept his teeth clean, travelled with him to hospital yet it had begun to show it’s warn out age with the bristles looking worse for ware but it broke my heart to through it out. I threw it in the bin blinking back the tears in sobs.

People would tell me not to sort out his stuff just yet and wait till the time felt right. What is right? It was all totally wrong. I’d never been in this situation before as far as I knew I was just winging it. I got myself in a state when I couldn’t find a certain t-shirt and tracky-dacks he’d wear during treatment and I accompanied him to every hospital stay. He looked so handsome in his Nike Yankees black t-shirt that he bought on our last family holiday together – Hawaii. I never did find it and I think that we must have left it in a plastic bag for washing at one of his hospital stays, never to be seen again. I have to be thankful that I’ve got many photos of him wearing my favourite t-shirts.

One of his close friends took home Jacob’s pair of sunglasses to wear proudly as he thought of his mate and another friend took several pairs of his size 13 colourful converse high tops. Jacob’s straw hat is perched on his memorial shelf along with his eye patch (the treatment caused Jacob to have double vision) and wallet with his drivers licence still in its slot. Rachel’s partner Adam thankfully took some of Jacob’s clothes as they had similar style in clothes and size and I get a warm fuzzy feeling when I see him wearing them. I kept the clothes that made me smile when I held them close drawing them in for a hug and snuggle, I just wish his scent would stay over time. His other clothes I gave to charity to be sent overseas to an underprivileged village along with unopened medical supplies that couldn’t be given back to the hospital pharmacy. With this exchange of personal belongings it felt good for purging with good intent. In a suitcase in my bedroom I keep a handful of clothes of Jacob’s that I can’t get rid of. I just look over them from time to time when I empty them out on my bed to repack the suitcase for an upcoming holiday.

I have another old hard black plastic school bag in my cupboard. The ones you used to sit on like a horse in the bus line at school waiting for that lift home. In this school bag contains lots of my children drawings, cards and presents they’d made for me for all the celebrated events over the years. I guess I’m what you call a hoarder in these regards to these treasures. I even have the letters that my husband had written to me before we were married when I was living away for nursing.

The things I do relish in throwing out to turn a new leaf is clothes I never wear anymore from my cupboard. I look at garments on the hangers and say if I lost a few kilos I might wear that again – but I’ve been saying this particular statement for as long as I can remember so it’s really time they went in the charity bin. When it comes to throwing out and decluttering my children’s belonging that’s when I feel like Jessie singing her song in ‘Toy Story 2’ – when she loved me. Why does physically holding on to memories have to be so hard?

Clearing out physical space creates an intentional vacuum for fresh, new life. I would love to declutter my house and really decide as I held an object like a vase, or trinket box close to my heart as I asked myself the question in my head – does it bring joy? All of Jacob’s belongings bring joy 💕 ……and heartache.

Pronoia

I was asked to write about having a bias towards pronoia. At first I had no idea what it meant and after reading the explanations given to me for this writing exercise and googling it on the net I began to understand the theory of it all. My life was certainly different before losing my ‘forever 20’ year old son Jacob and what I wouldn’t do to bring him back and change my new ‘normal.’ Life before this moment I was probably more familiar with the opposite of pronoia – paranoia, sweating the small stuff and thinking the world was out to get me. Even when Jacob was first diagnosed, at the beginning treatment, reaching remission, his many relapses and having been told that your life is coming to an end the thoughts in my head were more negative – how could this be happening to my young adult child, my beautiful brown eyed boy, my youngest child? What did I do to deserve this? Why did it have to happen to my family? Why wasn’t Jacob part of the positive percentage of statistics who survived Ewing’s Sarcoma after treatment? Yes I did have a lot to angry about. Having all the negative thoughts in your head all the time brings you down.

Something had to change. I could be bitter, angry and withdrawn pushing away the world, curling up in bed in a fetal position or with Jacob’s help from above I could be learning to ‘SMILE’ again – see miracles in life everyday. I chose the last one as Jacob wouldn’t want me to be sad all the time. We had a motto during the last month of his life after being told ‘there’s nothing more they could do to cure him of the disease’ – it was ‘live everyday of your life as if it’s your last and be thankful for everyday you’ve been blessed with.’ And it’s as if he telling me in a loud voice ‘do it mum, do it for me, live your life well’ as I get up out of bed everyday knowing he’s not physically here with us anymore.

I will continue to smile and see and feel him in the miracles I see everyday like the sunrise, sunset, rainbows, the beat I play on my African drum, the songs that randomly come on over the radio with messages from him in the lyrics, when I see a feather, a penny from Heaven at my feet, a butterfly and dragonfly, when I’m on the lake in my kayak, the first star I wish upon in the evening sky, the full moon that plays with my emotions so. The colours I see are so much brighter now, perhaps in my life before my grief I was too busy to really notice, but now I really stop to smell the roses, the see how beautiful life is and how quick it can all change. It’s all just like the song that Jacob introduced me to on the way home from having chemo. He said ‘mum you’ll like this song’ from the back seat of the car as he played it from his phone. I did love it and shared this with him as I cried behind dark sunglasses without him knowing. This was the song he took his last breath to, as he was surrounded by 19 family and friends – ‘it’s nice to be alive’ by Ball Park Music. Yes it is ‘nice to be alive’ and I’m thankful for all the signs that Jacob is still with us as we tread further down the road since we’ve kissed his forehead, held his hand and heard his voice. I’m using his camera now as his career choice was becoming a cinematographer so I’m seeing the world through his eyes the lens of his camera keeping us connected.

I will love and miss him for the rest of my life until we meet again but in the days that await I will not take things for granted like I did before his passing. I will have those days when the grief will come from nowhere with random triggers that cause burning tears, but I can’t stay with these days, grief will always be part of me but I can’t let the darkness dull the light that’s trying it’s best to shine. I will try and wake up each day with a grateful heart and be thankful for the things going well in my life. I am alive, I have a loving husband by my side, 3 beautiful earth bound children, a roof over my head, fresh water and food to eat, clothes to wear, a job with a regular income, family and a great circle of friends (in real life and the ones I’ve never met yet have connected with online).

With my writing task tonight I hope I have grasped the understanding of the word pronoia and how it looks in my life right now. Pronoia – noun, the belief that everything in the universe is conspiring to support you – my belief in pronoia armed me with a positive and optimistic outlook even during my most trying times….losing my son to Ewing’s sarcoma aged 20.

‘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.