THE GIFT OF A SERIOUSLY ILL CHILD

May 20, 2020

In ICU after haemorrhaging on the operating table, she then became the sickest child in Aus/ NZ waiting for a liver, and went to the top of the transplant list.

 

 

 

No one could ever wish for their child to be seriously ill.  

 

Watching as their fragile body slowly starts deteriorating.  

 

To question whether  you may ever see or hold them again can give you a wake-up call like no other.

 

There is a lot of research around catalyst moments and the life-changing decisions that evolve from them.  The many catalytic events in my lifetime have helped me form the resilience that I demonstrate today.  

 

But none have had the power to change the way I saw my life, until my children became seriously ill.  

 

Like the moment when I ran from The Ronald McDonald House in the cold rain after receiving a call from PICU at Royal Children's Hospital Melbourne with the devastating news my eldest daughter’s lungs were collapsing post transplant, and she was going downhill fast.  

 

Or the night my second daughter haemorrhaged at home in my arms.  As I helplessly watched her slowly die, I reminded her of all the incredible moments for which she needed to stay with me.  

 

“Your dream is worth fighting for, and while you're not in control of what life throws at you, you are in control of the fight.” R. Holiis

 

When my eldest was first admitted into hospital I knew she was really ill. She could no longer run or jump, and was losing the ability to walk.  The pain was excruciating.  We had been feeding her on supplements trying to help her hold weight, but this was no longer working and she was as thin as a rake.  When her stool started showing blood, and a huge fever spiked, we knew this admittance would be different.  As her disease was undiagnosed we had no idea what path we were heading down.  

 

We were not prepared.  In any way.  How do you prepare for the unknown?   

 

The many lines to keep her alive

 

 

I had kept the girls’ disease to myself since, not wanting to share it with anyone.  I thought that if we focussed on it, it would start to consume us.  

 

But it had grown into something we could no longer hide.  

 

With the deterioration of her body, I was quickly confronted with what sort of life I had provided for her, and reflected on what life meant to me. 

 

What was truly important. 

 

What changes I needed to create to make those priorities at the forefront of my life.  


 

Steps you can take from a catalyst moment

 

  • Allow some reflection time to look at what you prioritise in life

  • Consider how you are spending your time, and whether this could be spent in a different way to support your life priorities

  • Identify what steps you could take to try to create the life you envisage, 

 

 

Undeniably I needed to make the most of the time I had with my children.  

 

I was also not in denial.  Life is not like the beautiful fairytales I read to my children.  I was more than aware there would be challenges on the path ahead.  I knew it wasn’t going to be easy.  It already wasn’t.  But from my experience, nothing was easy.  I used my personal experiences and strengths I had developed from my own past, to give me the mental tenacity I needed.  

 

In fact, I often think I went through hardship when I was young to help prepare me for this journey.  I continued to look for ways to grow from the experience, and started to find the shortcomings in the way I was living my life, and the way I was raising my children.

 

I worked through the darkness, and shifted my perspective and focus away from a world that rotated and obsessed around my ill children.  I pushed past my own fear and overwhelm, to find beauty in the everyday.  

 

This, for me, was about finding small pieces of time amidst the chaos, for moments of true presence.   About feeling and seeing more in the simple moments, and making sure I could start to create more of them.  

 

After all, I still have my children.  I can still hold them, and listen to them.  I can watch them grow and find little pockets of peace with them.  

 

“Life isn’t a matter of milestones, but of moments.” R. Kennedy

 

While in hospital this is easy.  Your attention and world revolves around your ill child.  You have more downtime with them, while others around you help care for their needs.  You have less to do, less to clean, fewer appointments, and assistance when you need it.   Your sole purpose in the hospital is to be there with them, beside them through every step.  

 

When you get back home the internal and external pressures, to do lists and expectations, can take their toll. It's easy to lose sight of searching for those precious moments.  In a chaotic fast paced world, these moments in time can sometimes feel out of reach.

 

 

 

Steps I use to help create find moments of time with them 

 

  • I created a night time routine that allowed me to start fresh every morning of every day- this included washing all med cups, syringes, and feeding bottles so they were clean, fresh and ready to go.  I would make sure my kitchen bench was clean and the rubbish was taken out. (I often saw my large kitchen bench as my mental state, so I needed this to be clean and clear every morning)

  • I set a goal for myself- in my case it was a yearly goal.  I started very simply, with goals that included photographing everyday moments, and being present in them.

  • I then set some habits and triggers around these goals. The trigger that the kids were safe in bed, I would start my night time routine.  The kettle switch in the morning, gives me time to prepare the morning meds and feeds.  Making sure I was photographing them in everyday moments weekly, and trying to create one fine art piece once a month. (The fine art was very close to my heart, but I found very hard to complete- so I settled for ‘when I could’)

  • Making daily decisions around my set goals, learning quickly that when I say yes to one thing I am saying no to another.

 

I became extremely conscious of the daily decisions I was making and the effect it would have on these goals.  From here I started creating beautiful everyday moments.  I then pushed it further and started producing fine art images of my children.  Whether they were dancing in the rain, or in the blue light of a full moon, this warmed my heart and filled my soul.  

 

I have been so inspired by the world around me and the simplicity of connecting, that we have never looked back.

 

                                                                                                                Moonlight, 2017

 

This image was taken at a dance class.  If you look closely she has a mask on.  Her legs were aching, and she wasn’t good on her feet.  In the middle of the class I looked past all of this, and saw her dancing under the light of the moon…. free.

 

 

My children have given me the ability to recognise and feel small moments in time.  They were my salvation from a world and a version of myself I was ignorantly absorbed in. I have the determination to chase these moments, and an awareness and appreciation of a world unlike the version I had seen before.   

 

The gift they have bestowed upon me has filled my heart, lifted my soul and has changed how we live our life.  

 

For this, my children, I am forever grateful.

 

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