Life without Chase

Have you ever stopped and thought back on what life could be like without your children?

I did today and it bought me up short.

• I’d probably still be working for other people and not running my own business
• I’d probably still be buying clothes that just make me look hideous in the name of fashion.
• I’d probably still be sitting cradling a wine, or in my case a scotch ‘n dry in a pub
• I’d probably still be waiting for a certain man to call me
• And I’d be thinking of what life would be like with kids!

Instead I have been gifted two wonderful children, one of which has tremendous hurdles to overcome both with his health and his learning.

And today he made me proud!

Today Chase made the semi-finals of his speech competition – they announce the finalists next week… fingers crossed.

His speech which became a ‘rap’ was about his friend Helen Clark. Having met her in 2008 and stayed in touch and following her new journeys at the UN in NY , Chase chose her as his ‘Special Person who Influences Me”.

Although this might seem a small school exercise for Chase it is huge; overcoming the hurdle of not being able to write legibly to meeting the task head on and seeking support, including from Helen herself.

Chase’s attitude to life of just living it has made me appreciate so much more of what I have as opposed to what we don’t have.

• We don’t live in a flash house, but it’s full of love (and the odd adult-child argument!)
• I don’t drive the latest model car but it works and gets us to where we need to go when we need to be there
• My clothes serve a purpose – to be comfortable so I can concentrate on the job at hand – regardless of whether I am in a client meeting or cooking up a storm for my boys
• And I more likely to be seen hooking up a can of TwoCalHN than a scotch.

We travel, we visit friends, and we make new friends with special people. We look outside our world to help others and we love.

This all of this has been possible with Chase’s existence.

He has taught us to look outside ourselves, to respect the life we have and to look beyond the material and to focus on the experience.

Life is after all a journey not a destination.

Lifes most valuable lesson learnt

Well tomorrow Chase turns 10.

What a milestone.

I was cleaning up photo albums the other day and came across the baby books – you know the ones, the ones we are determined we’ll keep up to date and never do… the ones we are proud to show off for #1 and then # 2 comes and there never seems to be the same amount of time available.

Anyway I came across Chase’s baby book, flicking through I looked at all the milestones, the weight gains (and loses), the medical procedures , the operations and then I looked at something else – when he first walked, talked, got his first tooth, first swore..

Most of them were blank – the first swear word I remember vividly – at the lights waiting for a red… Oh F---“as in rhymes with truck – wonder where he had heard that before at a red light!

Anyway, what struck me was the number of ‘normal’ things missed. Chases first year is literally a blur for me as we came to grips with dealing with this big unknown Cystic Fibrosis.

CF was to become what was like a member of the family – to be understood, disciplined and cared for. To be given the attention it needed.

Sadly it became a larger part of our family than I would have liked looking back now. It overwhelmed Steve and I as we tried to manage life in a way we hadn’t anticipated when we first had Chase.

Chase of course sailed through it all accepting all these adults into his life that would play such a large part in trying to keep him healthy.

We are thankful for those friends every day – his Doctor, David, his CF nurse Dee, his physio team and his dietician Annemarie.

They’ve come to understand Chases challenges with CF and his intellectually disability and love him the more for it. They have helped me cope on those days when it all seems just too damn much.

But most of all they have been there – guiding, listening and helping us get a handle on this hideous disease CF.

As I write this, a dear friend now living in Australia is fighting what may be her last battle with CF as her new lungs are rejecting her.  My heart breaks for her, her mum and her family as she is so young – but this is the reality of a disease that has no cure, that systematically destroys every organ in the body and slowly lessens the quality of life.

And through this gloom an incredible light shines through. A light that warms the body, that soothes the soul, for unlike many others , we as a family have learn one of life’s most valuable lessons

Live Life Today fully and you create a lifetime of memories

Happy Birthday Chase may we be blessed with sharing many days like this with you 
Love Mum