Being A 'Mum' Is All I Have Control Of

Taking kids to school, going to work, & sitting down as a family for dinner were everyday life occurrences that I never really thought about until they stopped happening.

I was oblivious to the quality of our wonderful life, tied up all too busy living it to enjoy it.

Now in hindsight … how I regret that!

When cancer enters your world; the life you once knew is no longer.

This unfortunately became a reality for us in January this year when our eldest son, Lochie, was diagnosed with ALL PH+ (leukaemia)

We were admitted straight away to RCH Melbourne and it’s where we have resided for the last 7 months.

It is gut-wrenching as a parent to see children endure what Lochie has experienced.

I have felt so incredibly helpless and out of control, it has broken my heart every day not being able to take his pain and suffering away.

For me, losing all control of my life was a challenge in itself, I thrived on order and knowing what was happening every day. This last 7 months I’ve had to take each day, hour, minute as it comes, I’ve had to condition myself to be ok with that and let everything else go. 

The one thing that has stayed constant and the one and only control I have is my ability to be a mum. Although everything has changed around me I can still do that!

I wasn’t going to sit back and let this cancer affect my ability to nurture and care for my children, I wasn’t going to allow it to break me.

There is such a fine line with parenting a sick child, you learn very quickly the need to adapt and bend as all the parenting values you once lived by are thrown into turmoil.

How far to push?  When do I give in?

I have discovered that choosing your battles is key.

Since diagnosis there has always been the ‘non-negotiable’ – jobs … Lochie has had to do everyday without fail, even if it was completing them at 10pm we’d get them done. Teeth, shower/bath, walk, hospital teacher.

Getting Lochie to complete these small tasks each and everyday was a constant battle and negotiation, it was exhausting. But to him, saying no was, to some degree, his way of maintaining control.

Over the last seven months of gruelling treatment, we noticed that Lochie had become very lethargic & inactive. Walking 2 metres to the bathroom was a struggle, it was brutal to witness.

His legs had become so weak with the loss of nearly all his muscle mass that when having a shower I would have to physically hold him as he was unable to stand unassisted. Added to this physical struggle Lochie also became very withdrawn, mentally he was not good.

The low point came one Sunday night when Lochie was given an oxygen mask to assist his breathing overnight whilst he slept.

Seven year old boys are programmed to think about lego and super heroes.

Lochie asked me a question that night that no seven year old should ever ever contemplate …”Am I dying mum?”

It seemed, our happy, positive, energetic little boy had gone forever.

I needed to do something, I could not sit back and watch Lochie retreat further into himself. So, for an early birthday present, we gifted Lochie a fitness watch.

A watch that would count and record the steps he took each day.

This had an amazing impact on Lochie.

He started to set daily step goals and would walk up and down the hospital ward until he achieved them, even leaving his room by himself to continue building up his steps to reach his target! Added to this we were able to set chores via the app which again he would work towards achieving.

We were thrilled to see Lochie change from a child who didn’t want to leave his hospital bed to one that literally overnight was actually seeking out physical activity

 The change within a week was great, within a month it was fantastic!!  Within 6 weeks Lochie was walking over 5,000 steps a day.  He was stronger, happier and more motivated than he had been for months.

This small piece of Technology had given him the control he was so desperately seeking!

It gave us our boy back!

Hopefully Little Big Steps will be able to give back to so many more!

 

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Cassandra Howcroft