Wednesday 14 December 2011

A White Christmas begins right here.

It’s been a while since I blogged. Time hasn’t permitted an update until now.
The past few months seem to have been a whirlwind of fund raising, food studies and hospital. And it wasn’t until I reviewed my diary that I realized how often Chase has been ill this year. With close to 7 weeks in hospital, countless courses of antibiotics, piles of sleepless nights and attempts to undo the tightening binds of CF we are reaching teh end of the year with another possible hospital stay. Chase is again unwell but determined to stay home for Christmas.
Fingers crossed it’s just a bad year and not a trend. A trend like that isn’t one we want to follow.
But this year has also seen an incredible story unfold - Chase New York Dream.
With little more than a request for fund raising ideas on Facebook, the response was astounding. Over 450,000 hits on his FB page, over 630 friends from all over the globe - from Bulgaria to Nigeria, and from Invercargill to Northland.
The fund raising efforts have been incredible and very very heart warming. From the mighty physical challenge of cycling around Lake Taupo at the end of November, to the preciseness of clay bird shooting last weekend; from the efforts of the incredible cooking teams baking up a storm to the supportive and nurturing business sponsors that have come on board. To the gorgeous auction nights onto the selfless and very generous donations offered freely by so many, Chase myself and our family are incredibly humbled, and those are not just words.
The New York dream isn’t just alive and well, it’s bubbling with excitement!
A kernel of a dream has become a reality for Chase. A goal to stride towards with arms held wide open; a goal that reinforces his need to stay healthy; a goal that is a reminder that we can all dream, however it takes action, perseverance, commitment and often the support of others to make a dream a reality.
As we head into this weekend it will be a year before Chase steps aboard the plan and wings his way to the Big Apple. He’d start packing now if he could. ‘Patience’ for Chase has never been a strong suit (a little like me in that respect!)
So we head into Chases 10th Christmas, a little wiser, a little more wary of the future but overwhelmingly secure in the knowledge that regardless of today, Chase will be winging his way to New York City in 2012 for his White Christmas thanks to the incredible support from some of the world’s most fabulous people- people just like you
Merry Christmas and may you grab hold of your own dreams and make them real.

Thursday 22 September 2011

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.

Tuesday 6 September 2011

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  

Tuesday 28 June 2011

Chase's Heartbreak :(

I received an email yesterday from a group that organizes sport for youth with disabilities.
Nothing new in that, I’ve received many over the years but have chosen not to respond. The main reason was that we don’t see Chase as having a disability- more a health issue that causes him some challenges.
CF itself is a health issue. It’s the affects of it that can cause the disability – for Chase he has a serious lack of gross and find motor skills. This is mainly due to his body inability to get the nutrients from food that he needs to build muscle and strength.  
Chase has never ever let anything stand in the way of his love of sports. From Saturday school soccer to summer athletics he is always in there trying his hardest to keep up with his mates.
On Monday, Chase’s school had Rugby League. Chase was just so excited because he was getting to play. He went off to school with the hugest grin.
That sun warming grin was replaced with the saddest face I have ever seen Chase wear.
The sadness came from the fact that like many of the other sports teams Chase tries to be part of; his lack of skills is seen as letting the side down so he is benched more than he plays. And for the league tournament – the other kids wouldn’t pass him the ball.
My heart just broke for him.  We know Chase isn’t the best – but his attitude and will to play often exceeds some of his more able team mates. We also understand the teams desire to win, Chase wants that too.
So when this email came in, I read it. Then I read it again. Then I asked Chase if he’d like to go and check it out. Of course he was going to say yes- it was sports!
So we went and can I say it was the best thing I have ever done for my gorgeous son.
Chase was in there and having a ball. he didn’t know what to do and he was shy initially but he soon got over that as everyone made him feel welcome and more importantly he wasn’t side lined for making a mistake.
He wasn’t benched for getting it wrong – he just tried and tried and was rewarded when one of the bigger guys asked him if he’d like to SLAM DUNK as he was lifted skyward.
If only I had that damn video camera – it would have been priceless.
Still there is always next week – yep we are going again.
Our thanks to have to go to Sports Opportunityas well as to John Davey CEO of Waikato Basketball for the wherewithall to think of Chase and make the contact for us
THANKS GUYS for making Chase smile!

Wednesday 22 June 2011

The Journey has Begun!: The magic of film

The Journey has Begun!: The magic of film: "Last night Chase got the opportunity to go to a Basketball game. The Waikato Pistons were playing and Chase loves his sport so off Steve and..."

The magic of film

Last night Chase got the opportunity to go to a Basketball game. The Waikato Pistons were playing and Chase loves his sport so off Steve and Chase went.
I sat home watching a DVD that almost scared me into a heart attack – 'Sanctum' a movie about caving and diving and I can highly recommend if you're not like me and aren't claustrophobic
But my heart wasn’t the only one racing.
Chase was given the honour of taking the ball onto the court at the beginning of the game. He then got to sit with the team! All of this organised by the guys from Winger Subaru and the Pistons themselves.  And it wasn’t just a case of just letting him do it. Because it was being televised live by SKY, permission had to be sought.
Chase’s eyes were as round as saucers when he got home and was explaining his night. I was just so happy for him.
And that’s when I got a tad grumpy; grumpy with myself.
Grumpy that I can’t seem to find a way to just do a little more to earn a little more to buy a video camera. Now that’s a luxury I grant you. Many families don’t have one.
It’s just moments like last night I would love to be able to capture so Chase can visit them again later on. There’s magic in being able to see yourself and I don’t think that magic truly disappears even if we not 100% sure that we like the way our hair was, or the extra few inches that suddenly appeared!
We have the TV documentary showing Chase. We even have loads of photos, just no other footage of stuff. Stuff like Saturday soccer, like Cross country and triathlons. No birthdays or holidays.
It is a case of we eat and in Chase’s case eat as much as we can get down him, or we scrimp and try to save those few hundred dollars for a camera.
The food seems to take priority and at the end of the day I’d prefer to have Chase here that just watch a movie, but wouldn’t it be nice.
But for now the camera can wait, I am just going to keep making sure Chase has nights like last night, that he keeps living his life without stopping for the right angle, the right light or even the right pose.
Got to love those Waikato Pistons though!

Sunday 19 June 2011

Who deserves to be born?

So the doco has hit the airwaves and with it comes the debate.
I expected the Right To Lifers to come out swinging – but maybe they were all in bed at that late hour. The negative interestingly enough from an unexpected quarter – from Adults living with CF.
They are right in some respects – the documentary was sad, focusing on CF as an illness with no cure. (Fact)
Yes there are better management practices now and life is being extended further and further for people living with this condition.
However, all of this goes out the window when as a parent you learn of yet another death of someone under the age of 16. One more of the children that you are used to seeing at the other end of the corridor have passed away and the fear you have for your own child resurfaces.
As a parent regardless of the condition your child faces, there is a certain amount of guilt, sadness and grief that you work through. Some work through quicker than others. So is anyone wrong in this?
No. Feelings are real irrespective of others opinions. They are the feelings of me as a mum.
We don’t for one moment regret having Chase; in fact I discuss this in the doco; that we wouldn’t give him up for all the tea in china. We adore him and the fact that CF has given us a new window on the world, one filled with compassion, heartwarming friendships and an opportunity to fight for a cause bigger than oneself.
So for all the adults with CF who criticize my feelings as a mum, I suggest you ask your own parents – was there ever a day, a moment when they didn’t feel a sadness that went to the very core of their being, a guilt that didn’t threaten to overwhelm them and a fear that made them question their ability as parents?
This is the role of parenthood and the documentary focused on us as parents, not on Chase and his outcomes but us and how we face a life with CF. And yes it is different from how Chase faces it. It is different to how Chase will face it when he becomes an adult.  And it may well be different to how adults with CF face it.
But just because it is different doesn’t make it wrong. Respect that at least.