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!