So, a happy post....

                                                                                 

So much going on at the minute.....
   It's the Summer holiday's and we've done all sorts of lovely things. Cerebral Palsy and seizures won't hold this boy down!!
Ash has discovered a new found love of horses. It's wonderful to be able to give her something that is JUST for her. All too much of what we do revolves around Zak and his needs, so this is huge!
It stems from our annual holiday at Ribby Hall near Blackpool. There's an equestrian centre on-site, so she was riding every day! and loved it!! She's now all kitted out with jodhpurs and riding boots, and she's enrolled in the local riding School.... One very proud Mummy here!

 

Look at that smile!!

 

So, we have been on holiday, to Blackpool. We planned on doing a few of Zaks favourite things while we were there, and yes, we did manage to do them, but thanks to the addition of Topirimate (yet another drug to try and win the war on Epilepsy), Zak spent the majority of his time fast asleep, and missed it all!. He missed the Zoo, the sealife centre, the beach, the bike ride....the lot!

So, what could we do, but go to the zoo again! As the top pic shows, he managed, just, to stay awake throughout.

It was a great day, lots of fun.... even being chased by a monkey keeon on getting its little hands on Zaks medicine in his bag, didn't stop the fun.

 

 

While all this fun is being had, we have also, finally, enlisted the help of a carer.

Zak is 5 now. He's not getting any lighter, and his care needs just get more and more. I've always hated the idea of getting a carer in. It's alien to me to have someone else in my house, doing my job!

So, tentatively, we have taken the step to go for it. And we welcome S to the family.

As you can tell from the picture, she has LOTS of fun things to do, and plenty of enthusiasm!

I'm slowly getting used to the idea, although I still find it hard to step back and just let them get on with things..... but I'll get there!

I think it will be much easier when we get the house extended.... and on that matter, things are moving forward.

Now that Zaks case is settled, we finally have the means to give wee man all the things he needs to have as full a home life as possible. We are converting the garage into a downstairs bedroom/bathroom.... extending the front of the house to make space for a sensory/therapy room and larger entrance for wider access.... we're widening the doors, and most exciting of all, he is getting his very own hydrotherapy pool!! (another thing ticked off his bucket list!)

All of this is going to make such a massive difference to all our lives! Zak can have the therapies he needs, light, music, water... our carer will have room to do everything she wants without us breathing down her neck, and we can have time off! which will be lovely!

The work is due to start mid October, so watch this space for updates and pics!

 

 

Poem....every morning, by me, Mags Hall.

                                                                                

Every morning starts the same

I hold my breath until I see yours

The world stops till the moment I know

That the darkness has not stolen you

Then in a heartbeat I know all’s well

And the morning sunshine streaks across the room

Bringing life to a new day

For just a second I look at you and everything’s forgotten

As you stretch and yawn, opening your eyes from your slumber

You look like any other five year old

This moment is like heaven has allowed a glimpse of what should have been

And, a flurry of dreams go as quickly as they first appear

For inside your body, a battle is being fought

A familiar foe,

one who is so strong that defeat is inevitable

It takes every ounce of your strength to keep it at bay

And there are times it would be so easy to give in

But your enemy does not belong here!

There was no invitation!

And the strength you gain from the love of those around you

Is all you need to hold it back!

So you fight!

And each new day is a blessing

Another win in the battle that is your life

We celebrate and ensure your days are filled

With happiness and memories we can hold in our hearts for an eternity

You show us that the things that are important are of no monetary  value

But of love, devotion, hope, hard work and rewards of the heart

As the day nears its end we reflect on new memories made

We smile and hold you close

Loving this moment, but knowing all the time your enemy is ever present

As the the lights are dimmed, and stories read

I hold your hand as you drift off with your dreams

But every night starts the same

With a prayer that we get to fight another day

 

 

                                                                       

uninvited thoughts...

                                                 Totally and utterly in love with this picture...

But it brings with it a wave of emotion, good and not so good. The thoughts that sometimes get into my head, without invitation, and so hard to get back out, really do, sometimes, hit the hardest.
   I've had quite a few of these uninvited thoughts of late. I'm sure anyone with a child like Zak will understand immediately what I mean when I say that, for the most part, these thoughts stay burried in a deep, dark corner of our minds. But just sometimes they do a clog dance, trying so hard to be noticed, and we do all we can to ignore them and keep going. But of course, sometimes they win, and we have to address them.
   One such thought, is that.... from day one of wanting to have our beautiful second child, the reasons for that decision were that we never wanted Ash to be an only child. We wanted her to have someone to grow up with, to play with, to confide in, to have that one person in her life who knows all about her, the good bits as well as the bad bits....like I did. I have 2 sisters and a brother, all of whom I love dearly, and can't imagine life without one or all of them nearby or at the end of the phone if I need them.
   So, despite all our dreams coming true in Zak, there is going to be a time when she once again will be on her own. But even before that, she has been duped out of her 'normal' too. She can't play with Zak in the way she should have. I cought a glimpse of her smiling at two young children in McDonalds the other day. They were fighting, not doing as they were told, and the little one in the highchair was in fits of laughter....and it broke my heart. I can't give her that....
I remind myself that it's all about perspective. That although so many things are different, he can offer excellent listening skills. He is the worlds best at keeping secrets! He never pinches her toys, or scribbles on her homework. He never invades her space or blames the marker pen on the wall on her... and so I hide the wiping of that little tear. I suck air back into my lungs, despite the feeling that every bit of emotion is suffocating me, and I remind myself of the obligatory "there's always someone worse off thatn you" phrase..... and I order our big mac.....
And that, ladies and gentlemen, is something us special needs parents do, regularly.
It can be the simplest of things that kick you, full throttle, in the stomach.... a new baby crying, the 8 week old smiling into the eyes of his loving Mother, the conversation in Asda about the sleepless nights that come with a newborn, the kid next door riding his bike without the stabilisers, the Birthday cake he can't eat, the toddler taking his first wobbly steps, and the laughter of children playing....
   ....When I feel those emotions start to errupt, I try to surpress them with thoughts of the family I met in hospital... the child dying of the same horrible disease that her brother had. That the brother was yet to show signs of, yet he had to watch as his sister mapped out his destiny....all the while their devoted, beautiful Mum, stood by singing Happy Birthday to her daughter, while she wore a head scarf from the chemo effects after he mastectomy.... and it's then you realise how 'lucky' we are, that he is still here to hold in our arms and to kiss goodnight.