You Should Write a Book

I can't tell you the amount of times someone has said to me that I should write a book about my life.  I am such a private person and blogs are so public that this is quite the struggle for me. I could write about others or something I love all day long but to write about myself makes me feel extremely self conscious.

I was recently criticized for my lack of engagement with my customers, social media followers and the general public (another story altogether). I have taken that persons opinion on board and have decided to follow through with making that change in my life and my business.

So here we go....

My childhood was blissfully normal, a mum and dad who are still together to this day, 2 older brothers who annoyed the hell out of me as I grew up. I achieved my HSC via public schooling in Sydney's south western suburbs and attended Sunday school every Sunday, I started working from the age of 14 years and went into an admin position upon leaving school - I had no direction and didn't know what to do career-wise.

I married young and had my first child, a daughter, named Taylah by the time I was 23. I subsequently had 2 more children - a son named Seth and a daughter named Sienna all in the space of 5 years.

Our lives were about to be turned upside down, inside out and wrong way out.

It would have to be one of the hardest times I had ever lived through and it hasn't eased up much since.

In December 2009 my husband injured his back at work. What we hoped would be a quick fix turned into quite the journey. Little did we know that

this was only the beginning of one of the most terrifying years of our lives.

2010

In May 2010, my husband had a spinal fusion operation performed on his back injury which had turned out to be bulging and split discs. At this time I was also beginning to feel some pains of a different sort and nobody could explain why. It was a complete mystery and little did I know that

it would see me end up in hospital on the operating table myself this same year.
In June 2010, I attended a school event at Picton Public school where our daughter Taylah and son Seth were enrolled. The school was celebrating their 100 year anniversary and the kids looked so cute all dressed up in their little vintage outfits for the big day.

Seth,, who was only in Year 1 at the time, came and sat on my lap and I remember noticing all the bruises he had all over his little legs - completely normal for my over-active little monkey boy. What wasn't normal for him was that he wouldn't move from my lap and didn't want to go and play with his friends. Needless to say, I kept him home from school the next couple of days as he became increasingly sicker. He had a very red, sore throat with enlarged tonsils and his glands had begun to swell. I took him to the doctor and as I suspected, he diagnosed tonsillitis - something that I constantly suffered from as a girl. He did however, take a blood test because Seths glands were really large and protruding.

The next day, the doctor called and asked us to attend his office. I was unable to do so but my husband was still home recovering from his surgery and was well enough to take him in. I went off to start my day as normal but about 20 minutes later, I recieved a phone call from my shell-shocked husband telling me that the doctor thinks our beautiful little boy had Leukemia and that the doctor had already alerted Westmead Children's Hospital that we would be arriving shortly.

Luckily I was only 5 minutes away from home and I dropped everything and ran to give my boy the biggest hug I could. I didn't believe that it would be true - so much so that I didn't pack a bag for the hospital. I thought we would get there and they would do another test and tell us it was some big misunderstanding, he has a nasty virus, we would be prescribed some medicine and be sent home for bed rest.

They did that second blood test and it was all too real when that one came back showing he most certainly did have Leukemia and they were just trying to figure out how aggressive it was.

Life would never, ever, be the same.

I made all the important phone calls to family, friends and my workplace and I was in such a numb state, I can hardly remember what I said. or anyone's reactions. I was still reeling myself. It still had not sunk in.

Having an injured husband was quite enough but to now have a critically ill child on top of that, was quite something else entirely.

2010 wasn't done with me yet. There were more nasty surprises coming my way.
We were now officially on the cancer roller coaster. Anyone who has experienced it  knows just what I mean by that. Its a train you just can't get off and you desperately wish for it to at least slow down so you can absorb what the hell has just happened.

You become educated on medical procedures you have never heard about before. You learn medical jargon really quickly and how to read your doctors faces to determine whether they have good or bad news. You become accustom to the names of medication you haven't got a hope of spelling let alone pronounce correctly. You become educated about all the horrible things those medications can do and why they are necessary.

Choice is taken away from you. If you want your child to live you have to sit and watch this poison run through their veins and kiss them as they fall off to sleep for yet another medical procedure. You learn extreme patience because whilst you are on a bullet train, hospitals seem to run on their own painfully slow timetable just when you are awaiting an operation your child has fasted all day for or test results that will tell you the news you want to hear or the news you don't.  

You basically hand over the life of your child into a medical teams care and hope that they know what their doing. Luckily for me I couldn't have asked for a better, more caring, more capable team of doctors and nurses to have surrounding us in our time of utmost need.

Family and friends and friends of friends joined forces and did what they could to help or even just send messages of love and prayers.

While Seth and I are now wrapped up in an ever revolving cycle of hospital, chemo, home and then back it gets mixed up with lots of temperatures and unplanned hospital stays. Meanwhile, my pains are increasing and so are my husbands and it wasn't the outcome we were expecting.

Between all of Seth's hospitalisations, my husband and I managed to make it to our own doctor appointments. My husbands pain was increasing so the doctor ordered an MRI and the news wasn't good. His fusion didn't work. The bone graft didn't take and the screws holding it all together had come loose. He was now facing a large second operation through his stomach before the year was out. This would in turn become a third operation the following year to remove the faulty screws. and rods. It was scheduled for December but in October, it was me that went under the knife.
The pains I was getting were like labour pains. They were also getting closer and stronger like a real labour does. At times I was writhing in bed unable to keep still, unable to function. I ended up in hospital a couple of times and they couldn't tell me what it was. They did all sorts of tests and ultrasounds on me and finally did investigative surgery.

They found out that my uterus was badly scarred from a procedure that was done after my 3rd baby - due to ongoing complications post pregnancy. The scarring was causing  labour-like pains every month in order to try releasing fluid build-up that couldn't be expelled. Many methods of treatment were tested and failed and in the end a hysterectomy was needed. The doctors from Westmead Childrens and my doctor worked together with their schedules so that I could have the operation between rounds of chemo.

Life at home was difficult. My eldest daughter at the age of 9, grew up very quickly and soon became the carer for her father and mother to her little sister who was just 4 years old when this all began. Money was tight as I could no longer work and was subsequently made redundant. We survived on what income protection insurance paid and on what charity was able to offer. Friends and family did all they could for us and I was happy to see the end of 2010.

2011

My husband was recovering from his massive operation in December 2010 and his third was scheduled for around May. Seth and I made it back home for decent amounts of time between hospital stays but visits were still very frequent. By the end of 2011 he was on chemo tablets and although he still had to be rushed off to hospital for temperatures the pace had seemed to ease off a little. I even picked up a little job helping out a friend who was aware of and considerate to the demands of my crazy hospital schedule.

Little did we know it wasn't over yet.


2012

In late Jan 2012 we dared to leave Australia for a family holiday provided by my parents to Norfolk Island. It was blissful and it felt like perhaps 2012 was going to see the end of our bad run and we would be able to pick up the pieces and move on with the rest of our lives. As little as 3 weeks later we got the news we never thought possible.

The cancer was back and it was ferocious.
We were given very slim chances of Seth making it through a second time and if this didn't work for him we would surely lose him.

His body was attacked - that is the best way to describe what he had to endure. They needed him to have a bone marrow transplant and in order to do that they needed the cells in his bone marrow to be destroyed. Unfortunately it destroys good and bad cells throughout the entire body. The doctors are forced to bring patients as close to death as they can possibly take them. They do this through the use of hard hitting chemotherapy and total body radiation. They are left in such a delicate state that if it weren't for them receiving the transplant, they would not survive.

We were incredibly lucky that our youngest daughter Sienna was a perfect match for Seth. It is incredible luck as it is rarer than you may think to get a sibling match. To put it in simple terms each child is given 8 numbers from their mum and 8 numbers from their dad. They get shuffled up and each child gets their own 16 number combination. To have 2 children end up with the same number combination is extremely rare. Sienna and Seth just happen to be only 2 numbers out of sync. She was a perfect match!

After months of full-on treatment and illnesses that set back the transplant, the day finally came in August 2012 where he received his transplant. We spent the next 4  months in isolation in hospital. Living in a state of hoping like crazy that he didn't catch a cold or anything worse that would take his life. By the end of October we came home, only to go back again a day later. We finally left hospital in November.

However, things wouldn't be over for us until another 2 years had passed.

2013 & 2014

Seth developed graft v's host disease which is where the new bone marrow cells view his body as the enemy and go on the attack. Over the next two years, there was alot of hopsital stays along the way, alot of further treatment needed to combat the GVHD. His immune system was so badly compromised that we needed to remain cooped up at home. The girls were only allowed to go to school and we became reclusive. If any one of us brought home so much as a cold, it could potentially take Seth's life.

When we had to venture out to go to the hospital, he had to wear a mask. He was on steroids which completely altered his appearance and he carried so much weight that it made his life extremely uncomfortable. He had trouble walking that stemmed from the bone marrow transplant, he was being fed through a tube and I was trying my best to home school him in between all of this.
2015

This year saw Seth slowly make a recovery against his battle with GVHD. It saw his immunity increase and by October he was allowed to return to school. He was returning as a year 6 student! It was a huge milestone in his progress of returning to a normal life.

I wasn't ready for the next sucker punch that came.

Seth was going to return to school in just days and we had just arrived home from a short break during the October long weekend. when I got a call that would forever change me once more.

My brother was in hospital and it wasn't looking good. I got in my car and rushed over to Westmead at breakneck speed. My brother had been suffering extensively from a mental illness and it had been slowly snuffing the life out of him. He he had fought long and hard enough and decided to end his pain that day. We had 3 days with him as they did their exhaustive tests to see whether there was any brain activity - which there was none. They continued to keep him alive in order to harvest his organs for donation. I found it hard to say goodbye and couldn't bring myself to leave his side until the moment they asked me to leave because they were taking him away. I have heard his donations have been really well received by the recipients and that gives some sort of comfort.
 
Amidst grieving the loss of my brother, Seth had his first day back at school.  It was such a joy to see how far he had come however we were faced with the issues of him catching every sickness that went around. His immune system was still weak - but he needed to get back to school. He had high school coming up and that is challenging for most of us - let alone a kid who has had limited schooling. He ended up having a lot of time off school over the remainder of 2015 and into 2016. Viruses that most of us get over in a week would take him a month to recover from. He had developed learning difficulties caused by the treatments he received in hospital. Chemo brain is a real thing. He also developed weak bones and crushed two vertebra in his upper back and needed some medication to increase his bone density.

2016

In 2016 I decided to start Island Living Australia. I had big dreams for this little store I wanted to start. I thought about what I am passionate about - interior design and the beach. I thought I could combine them both and start a little store where I can share the things I love.  I had great ideals. I wanted to support the charities that supported my family while we were going through these hard years.
I wanted to support Black Dog in honour of my brother. My brother had an appointment to see Black Dog but never made it. Their waiting list was too long. He had a 3 month wait and was too ill to last the distance. He had been to doctors to try and get his medication right and he was in desperate need of further care and support. We had been all so hopeful that they might be the ones to help him. They just didn't have the resources to cope with the amount of people in need and I hoped by contributing to their charity they would be able to get to people sooner and save another family from tragedy.

I also thought that if I can work for myself from home, then I can be there for the ongoing care that Seth and my husband required. If I needed to spend 2 weeks in hospital with Seth, then my own business could allow me that freedom. If I had to drive my husband to his doctors appointments then I could. My husband never returned to work.

If I thought I'd get off light in 2016, I was in for a rude shock.

In October 2016 Seth was out being a typical boy with his cousin riding motorbikes. I can't even begin to describe how nice it is to see him doing normal boy things. I was out doing some shopping with my eldest daughter when I received a phone call from my youngest daughter telling me that Seth had been in an accident, the ambo's were there and they'd bring him to hospital. I was already near our local hospital so I waited there for the ambulance to arrive. I waited and waited and watied and then I get a call. It was worse than what they thought and they were taking him straight to Westmead Childrens. I just thought "No!!!"

I drove straight there and he had broken his thigh bone and his shin bone despite having all the safety gear and motorbike boots. We were back at hospital for 8 days. He developed high temperatures, he was in so much pain and he even developed shingles again (something he had over his head, face, neck and shoulders while in for cancer). He was given a full length cast right up to his groin when the swelling went down and we both learned how to maneuver him around. The next month was spent either in a wheel chair or on crutches. We were back to constant hospital visits - going in for constant x-rays and learning the fate of what the break had done for Seth's future.

Unfortunately, Seth never does things the easy way and this time is no exception. He had broken the growth plate in his thigh. This growth plate is the largest in the body. We had two options. They break the growth plate in the good leg right away and he loses about 7cm of height or they let the good leg grow and he deals with the height difference throughout the years. Wen he turns about 17 they then break the growth plate in the good leg to stop any further growth. They then cut the damaged thigh bone in two, insert a rod that will be extended by a maximum of 5cm over the course of about 40 days. 
Seth chose to extend the broken leg as he is already short in stature due to the fact that he completely stopped growing for 4 years. His body channelled all its energy into keeping him alive and not one ounce was spent on growth.

His recovery from the break was long and already he is noticing the difference in leg length. It is causing him some pain in the knee joint and he is unable to straighten his leg.

So every year I had a habit of saying - this year will be better. 2017 was no different. I thought surely this has to be the year we come good.

I should've kept my big mouth shut.

2017

In April 2017 my husband asked for a divorce and left the kids and I reeling. I don't think its appropriate to go into any further detail than that. People who are close to me know whats happened and once again I have felt the support of the people I love as they have closed ranks around the 4 of us.

I was a walking zombie for the remainder of 2017. I had been running a vending machine business on top of running Island Living Australia to help bring money in. I was being a mum to 3 kids and wife to a husband that was in no fit state to contribute to the family in any way. I was exhausted!! Physically, emotionally and mentally I was just done. Concentrating was impossible and I was trying to just gather the energy to get up in the morning for my kids. Putting them through a divorce was the last thing I wanted for them. Life was supposed to be getting on track in 2017 and it all came to a big grinding halt.

We were married for 20 years and the pain of this one last kick in the guts nearly destroyed me. At times I felt as though I couldn't make it through the next minute let alone the next day and the day after that. I was so blessed to have had amazing people around me who knew those feelings only too well and helped me get through those dark days. They continue to pick me up off the floor to this day helping me through the difficult times involved in separating the intertwining of two lives over so many years.

2018

Its now July 2018 and I have managed to pick myself up and dust myself off - again. This year has brought plenty of upset and trauma. It hasn't eased at all, but what has changed is me. I have changed how I see things, changed how I react, learnt about setting boundaries and about what behaviour I will and wont accept in my life.
Seth is now past his 5 year cancer free mark! However, the effects of his treatment will haunt him for the rest of his life. He now has cataracts, dental issues and little ongoing niggly things and some much larger things that will affect him as he enters his adult years. His 15th birthday is in 5 days time. He is cancer free and giving me hell. He hates school and although it is a battle for him daily to attend, he does it and he has managed to catch up with his peers in Year 9 with thanks to the amazing team at Heritage College Sydney and his determination to make it.

He has plans on leaving school after completing year 10 and becoming a "tradie". What type of tradie is still up in the air. His dream is to one day become a rescue paramedic and I think that he would be an incredible asset to profession. I hope he can merge into that field when he is at the right stage of life to be able to study for it.

He will be back in hospital around the age of 17 to have his leg lengthened and is currently on medications to help with his growth.

If you want to know more about Seth's journey, I wrote a blog throughout the experience so that family and friends the world over could keep up with his progress.

The link is here: http://sethsrecoveryprogress.blogspot.com/
Seth and I - gettting a rare hug in - in 2018 getting our life back on track in our new family of 4.

For me, in 2018 I am trying to set myself some goals. I realised I never did that before because something always got in the way. If I didn't have goals then they couldn't be destroyed right! Its time now to set some goals and set about achieving them.
Goal No. 1

Give my children some happiness while they still have some childhood left.

Goal No. 2

Put more time and effort into Island Living Australia and remember why I started it

Goal No. 3

Earn a degree in Interior Design - my passion

Goal No. 4

Save for a trip to the Greek Islands.

I am currently working hard at No. 1 and trying my best. I am working on No. 2 right now  with this blog being step 1 in a few ideas I have for growth.
For No. 3, I signed up at uni at the beginning of this year and am working hard towards my degree. I have passed my first trimester with a High Distinction and a Distinction. As far as No. 4 goes, I splashed out on a personalised Greek Islands money box and I am slowly filling it whenever I can. Some days are still tough and I still do a lot of crying but each day I get a little bit stronger and a little bit happier.  
The new me in 2018 learning to embrace my new life as single mum.

Taylah is finishing up school in 2018 and planning on attending Uni in 2019 to study midwifery. She grew up very quickly and has continued to mature throughout the years. She is a very caring, kind, nurturing and empathetic young lady and has shone throughout her schooling achieving award after award even though home life was anything but stable for her. She is a very talented hobby photographer and is spending her spare time developing those camera skills.

Taylah in 2018 looking forward to the beginning of new adventures with the end of school in her sights.


Sienna entered high school this year and she loves reminding Seth how she saved his life whenever he annoys her like a normal big brother.  She has a soft and empathetic heart and a very caring and maternal nature. She hasn't lost her childhood imagination throughout all of this upheavel and loves getting lost in her own little world. I wouldn't be surprised if she writes a novel one day to rival Harry Potter.
Sienna in 2018 with her caring nature and beautiful heart just glowing
Family Photos by our beautiful friend Verity Edgecombe @verityedgecombephotography

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  • Lisa

    It is a very brave thing to put yourself out there, but I hope it is a cathartic experience for you also. My friends and I have loved ILA since we first stumbled across it (mainly through our mutual love of flamingos), and we still find so much joy in browsing and buying when we can. I hope that it continues to bring you joy and happiness, and is a source of some level of ‘normal’ for you. You have raised three beautiful children, and made it through some really tough times (I have known and understand the pain of divorce too), so my thoughts are with you as you bring yourself through this ‘shadow’ in your life, and progress through to the many sunny days that are no doubt ahead!

  • Sallyanne stein

    God bless you & your gorgeous 3 children , What s tower of strength you are as a devoted Mother, your story is one of Courage , hope , love & strength thru all seasons of life . Your business sounds amazing dream big!! If I had the money I would send you & the family to the Greek Islands , I pray you will get to experience this holiday . I will be praying for you . Kindest regards Sally Anne.

  • Marie & George Darke

    Very moving story Alison and we think about you and your life experiences so often. You are an inspiring example and our love is with you. May God be with you.

  • Cheryl Hocking

    You are one tough Lady ,wishing you well in the years ahead xx

  • Darienne

    Ali I’ve just read your story and my heart goes out to you. So many of my friends have had difficult lives, tragedies and huge challenges (me included) and every one is different personal and of course relevant to each situation.

    You’ve shown strength of character, strength of self and unconditional love in all you’ve done for your family. Life will keep getting better and better and as you’ve done in the past you’ll rise to every challenge. Sometimes I know you’ll just say why me? But believe me when I say the Universe only gives us what it knows we can handle.

    I know you’ll make it to the Greek Islands and I’m sure your business will continue to grow. Successfully.
    I wish you love, strength, happiness and all the beautiful gifts you deserve. Huge hugs to you and your beautiful family ❤️


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