MAKE-A-WISH

MAKE-A-WISH....What wonderful people they truly are!
We really wanted to do something special for Zak. Just for him. Something none of us would ever forget.
It was so hard to decide what we could do. Zak despite his gorgeousness, has no cognitive awareness. He doesn't respond to anyone and has no understanding that we know of. So how do you ask him what HE would wish for...you can't. So we thought long and hard about things we have done in the past that we saw some glimmer of a reaction with. And the one and only thing that came to mind was our day out at the Sealife center at Blackpool.
There was just something about the atmosphere there that he picked up on. It was subtle, and if you didn't know Zak inside and out, you'd never even notice. It could have been the dim lighting, the bubbles, glimpses of fish flashing by or even the background music, I don't know for sure, but I do know he was more alert there than he had been anywhere else.
So, with that in mind, added to the fact his Daddy works for the Royal Navy, the decision was obvious. Zak 'wished' to be a pirate for the day, and to go to a big sea world...and thanks to MAKE-A-WISH his wish was granted.
We drove to Newcastle and made our way to the Mal Maison hotel, where we were greeted by a room full of pirate balloons and gifts especially for Zak. Already over and above all we could have dreamt. Zak was showered with presents, from his gorgeous pirate costume and Captain Zak bath robe, to his hook and eye patch and even the inaugural cuddly toy!
Our excitment just kept going as we made our way to Frankie and Bennies (not Ben n Jerry's as I mistakingly kept referring) for tea. And what a tea...steaks all round. Even Zak manged a few small tastes of chocolate cake and ice-cream.
We walked back to our hotel. The evening was warm and as the sun began to set we watched as the lights on the Millenium bridge lit up...amazing!
Back at the hotel, it was time for a hot bath and the chance to try out his new Captain Jack Sparrow PJ's and his new bathrobe....after all this excitement Zak soon feel fast asleep, propped up in a thousand pillows.
As always Zak decided to wake us at his usual 2am slot....but where normally at home we are stressed and tired, we decided to go with the mood and had a mini part in our room, with music and silly dancing. We haven't laughed so much in a long time, and believe me it was much needed.
The following morning we woke up smiling still, and as we neared the hotel exit we felt very spoilt as our Limo was waiting to whisk us off to the Sea life center.
We were greeted by Pirate Chris, our personal tour guide, who showed us all the different displays and giving Zak a chance to touch and even hold some of the fish. There were sounds and sights and certainly smells (otters peeeeyoooo) that delighted all of Zaks senses. He squirmed as he felt the star fish and the crabs, a sure sign that he knew they were there. If this trip was good for anything, it was that!
The fun just kept coming too. The staff showed us to our table, where they had layed on a little party just for Zak. There was party food, balloons, hats and even an amazing Pirate ship cake with Zaks name on.
Once we had had our fill, we were given free reign of the center, able to come and go as we please. It was amazing. We got to see everything, and Zak, I am sure, loved every second. I know we did.
After a rather expensive visit to the gift shop, our Limo returned to take us home.
Sad that the day was ending, but happy we had made some wonderful memories, we travelled home in style. Zak slept most of the way, and I know at least one of his dreams were of him in his pirate ship and his land-lubbers with their rum and treasures!!
I cannot thank MAKE-A-WISH enough for the memories they have given us. The smiles and the laughter and the knowlege that dreams can come true.

Zak David Hall (4 yrs old)

It's all go!

Since receiving the news that the hospital had admitted full liability, we could now start to get the wheels in motion to try to give Zak some of the life he had missed over the years. He's such a content little boy. He never complains, he's happy just to be loved and held. And to be honest I love to hold him too., though there are many times I really don't want to let go.

Along with the admission of liability came many more 'experts' giving their opinion on Zak and how his future is likely to pan out. The one we feared the most of course was the dreaded life expectancy. Just knowing your child will not be with you for ever is quite literally like ripping your heart out and slowly taking chunks out of it on a daily basis. The hurt never stops. Yes, you do learn to put the feelings in a small box at the back of a drawer inside your brain, but they sit there quietly calling on you to remind you at every opportunity.... the neighbours boy who learned to ride his bike without his stabilisers...the proud parents walking their 4 yr old to 'big school' for the first day...even the child throwing a tantrum in the supermarket because they weren't allowed that sweety....they all just jump up and take yet another chunk out of that hidden heart.

They say his life expectancy is all dependant on how he is. That a child with CP and Epilepsy would be expected to live to around 35 yrs. 35 I thought...That is my age right now. Makes you think. Had things been 'normal', he would likely have been married with a couple of kids. I'd be a Granny. He'd have a career, prospects. He'd have done the club scene, made his mistakes, hopefully learned from them, and he'd be happy. He'd have his own family. I'd have done my main part of being his Mum and hope that all we taught him growing up would enable his fullfilled life.... But no. It will never be. My role as Mum has gone as far as the nappy changes, the sleepless nights and the constant round the clock care.... and that is where it will stay. Now please don't get me wrong, I don't mean to complain about my role in Zaks life. I am so honoured and proud and so full of love that I could burst. But I'd change places with him in a heartbeat if it meant I could give him just a tiny bit more.

So we fight! We continue with the court case in the hope that it brings a glimmer of hope for him. And so far so good. We have been awarded a large interim payment. Enough to get that house he needs to fit all the equipment in. It is a beautiful house, large with 4 bedrooms, 3 bathrooms and more than enough room to swing the preverbial cat. There is a lot of work to be done on it to bring it up to the standards that will meet all of his needs, but we are getting there.

So, I hear you ask, how is Zak? Well, I'm pleased to say he is good. As in my previous post, not much has changed. We have tried yet another Anti epileptic drug to try to get some sort of seizure control...with no success unfortunately. But on a positive side his seizures have not increased or worsened. He remains a relatively healthy wee man, with few chest infections and trips to hospital. His development is still stuck at under 3 months. Every day I pray for that first smile, and for him to do just one thing he hadn't managed before...we wait very patiently!

think this blog is more of a pop in and out option

It's been far too long since I last updated. Partly because I have been so busy with other things, and partly because any free time I do manage to scrape is usually spent in bed or doing mundane chores like the house work.
Due to this, I think my blog is going to become a pop in when you have time job...most probably, like now, while Zak is at Derian House Childrens Hospice. I have finally found five minutes to get up to speed.
Well, to be honest, not much has changed with Zak....but that in itself is all part of the problem. By now, at the grand old age of 3 years and 10 months, he should be running around, getting into everything, scraping his knees during a crazy tackle at football in the school playground or climbing trees and walls and anything else vaguely climbable....but Zak is stuck in a crazy time worp. He is still in every way like a new born baby, but a baby that has no other form of communication than crying, no expression, no controlled movement, no smile...still....
His diagnoses remain the same since my last blog...CP, LGS, reg blind, gastrstomy fed, non verbal, mild dystonia, GORD, Sandifer's Syndrome, no head control or controlled movement anywhere else, unsafe swallow..... I don't know if any of that will ever change....I keep expecting to suddenly see before me this very disabled 'looking' child, all twisted ans sickly looking, dribbling and generally unhappy and uncomfortable...but the reality for Zak, and for most 'disabled' kids I now have the pleasure of knowing, is very much different...not the steriotype at all. I often ask the question "if you saw him in a photo, could you tell?"...I don't know what difference the answer would make, I guess I just have a daft need to know if other people see him differently to me. I'd probably be a bit upset if they did...I don't know.
One thing that has developed since my last blog, has been the hospitals admission of liability and causation regarding Zaks blundered delivery. We got 'the call' on December 20th 2010...what a Christmas pressie! ....I wasn't entirely sure how I was supposed to feel at the news. No one writes any rules about these sorts of things do they. I wanted to run around the room with my jumper pulled up over my head like the footballers celebrating a goal. At the same time I wanted to cry, because for the first time it was someone standing by my side saying it's not your fault...you did all you could. So, I did both...then called everyone I knew to tell them the news.
So now, we are trying to find the right home or plot of land to build Zak the perfect house. One that will fit all his equipment in, have room for a carer, and somewhere we can make many a wonderful memory, to keep for always.
Zak now goes to School, Monday to Friday, from 9 to 12. It's a lovely little School, for children with special needs of all flavours....though I think Zak is the most disabled, and youngest....not that it is a contest, but it does make for interesting conversations when he throws something new at the staff and they are stumped by him. Mostly, they are great. They care for him well, and he certainly isn't hating it there...sometimes though I do wish I knew more of what he does there. The school is 10 miles from home, and usually all I see is a couple of lines in his home/school book telling me he has either slept or not....usually he has...and usually for most of the morning. It must be hard work!