So, now that Zak is 5......

A milestone in itself! For anyone following Zaks story, you will be well aware that his disabilities were all a result of his...'interesting' delivery.... for which we decided to make a claim of medical negligence. Now, at this stage I don't want to go into too much detail. The case is almost complete and will all be over in a matter of 2 weeks from now.

Lots of Zaks case involved expert witnesses all giving their opinion and predictions on Zaks life expectancy. The numbers went up and down, but they'd always say that, 'if he were to live to be 5 yrs old then.....' so as you can imagine, we were very happy to see his 5th birthday. We celebrated with a fun day out at the superbowl, followed by a huge lunch at Frankie and Benny's.

So now that he is 5, what happens next? Well, according to our experts, he will most likely not live into adulthood. At best guess, they say about 19. All I know is, this is the one guarentee...they are definately wrong!!! They can't know, no-one can!!! And if losing so many of my friends children has taught me anything, it's that when it's time, it's time....and there's not a thing anyone can do about it.

So while he is still a happy, healthy little boy...I've been thinking about doing a bucket list for him.

I can't think of everything I want for him off the top of my head, so this will be a work in progress.

So far he has achieved a few things that are bucket list standard.

He has...

Met someone famous

Been in a boat

Been a Pirate for the day

Stayed in a 5 star swanky hotel

Got an award for an achievement (canoeing)

Held the olympic torch

Owned his own house

Got a personal liscence plate (HA11 ZAK) cool eh!

Got a signed shirt from a footballer

Convinced Preston Wheelchair Services to provide something NOT on their list!!!

Had a haircut at the barbers (not just by Mum)

Had several 'girlfriends'

Been a part of the olympic torch relay (Windermere leg)

Gone sledging

And this is just the beginning. There are so many things I'd like for him to achieve... there will be a LOT! We might not manage them all, but we will have a lot of fun trying!

Other things going on the list include.....

Climbing a mountain

Going rock climbing

Appearing on TV

Hit the headlines (for something good, other than his case!)

Holiday abroad

Get his own pool

Raise some money for charities close to his heart (and ours)

Dip his toes in the sea

And so, so much more..... Can't wait to get started!!

Wake up call....

There have been times on this journey when you realise just how lucky we are to be alive. There have been so many ups and downs that the old analagy of it being a Rollercoaster is bang on the mark. The bad thing though, about these rollercoaster, is that every ride eventually has to come to an end.
Harvey
Josh
Tahnee
Amy
Toby
Bradley
Ella
So many, too many, children have already lost their battle. And with each death, the fear that our time is just around the corner becomes more and more real.
Finding the right words to give those families the support they so desperately need is just about impossible. Partly because you don't want to sound like a cliche, partly because you are scared that if it comes out wrong, at a time when emotions are so raw, it will hurt or offend them.... but also because you know you will one day be in their position, and the fear just eats you up.... you can never know 'how they feel' or 'what they must be going through'... not until it happens to you.
The analagy of the Rollercoaster becomes even more real.... You start the journey full of hope and fear and excitement.... you have many ups, downs, twist and turns, you throw up, you squeel with excitement, you cry in pure fear........and it suddenly, with no warning comes to an abrupt end.... and it's at that point only, that you realise how much fun it was and that you would give ANYTHING to have another go.... Sadly though, we can't. So because I have seen the end of too many of my friends rollercoaster rides... it has made me realise that we have to take the opportunities in life when we can... don't let disability get in the way, where possible...if there is a way, try to find it!
None of this can prepare me for the end of our ride.... but like the title of this blog, you  CAN'T HAVE YESTERDAY... That is ours and ours alone. These memories we are making right now, are what I will have left when this all ends. So now, my job, is to make the best memories possible, in hope that one day, I'll be able to look at them and smile.
Sending love out to all those who have lost their children. I hope you are looking back at your own memories and smiling now.... even if for now, it's just a glimps of a smile among the tears and heart break...xxx

Zak holding the olympic torch. June 2012.

As always, it's been a long time since my last blog, and as always, so much has happened.

It has been 9 months since my last update, and Zak is now 5 years old. 5 was always going to be a huge milestone for us. It's the age kids officially start school, and separate from their parents more regularly. It's a time when they develope friendships, and discover a lot about themselves. They begin to discover their own identity. Zaks identity is pretty well established right now. He is our gorgous couch potato, who loves nothing more than cuddles and a pretty lady.

Zaks health continues to be good. We are so lucky that he is rarely ill...just the very occasional cough or cold. His biggest issues remain his Epilepsy and his inability to do anything for himself.

His seizures are not becoming more frequent, but are becoming more severe. Each seizure seems to gain a new bit, or a twist, and morphs slowly into new, stronger seizures. Right now the most troublesome ones are what we call 'the pukey ones' he strains and stiffens, and makes sounds and movements as if he is going to throw up...but very rarely does. These are quite distressing for him, and we are debating on speaking to his neurologist again soon to see if his meds need yet another tweak.

Zaks physical abilities have not altered. He still has no head control, can't roll, sit, smile.....but we are very much used to that, and consider this his normal. I can't see it changing. Although it will not stop us trying!

Having a kid with extra special needs does have its bonuses. We were chosen recently to join a few families from The Rainbow Trust Childrens Charity to be a part of the olympic torch relay as it came through Lake Windermere....and so we found ourselves (yes, me too) sitting in a canoe in the middle of the lake, with Mr Tim Farron MP No less, lining the route the boat carrying the runner was taking. We had a fabulous time, lots of laughs, some amazing memories, and the best view of the evenings entertainment! Even the weather managed to behave itself just long enough for us to get back to the car.

In addition to this, I am lucky enough to know one of the runners, my lovely friend Megan Fearnley, who volunteered to come to Zaks School with her torch so that the children could all have a photo. As you can see from the pic above, Zak was 'very impressed' hehehe!