defeating the odds

so I havnt posted on here for a while, there always one thing that always sticks in my head, those words “he will never walk” that one sentence stayed with me through my whole pregnancy, he will never feed himself, that was another not to mention, he will have no quality of life, well again the wonder kid defied the odds, as he has always done, because he’s now able to stand on me for 10 seconds, hes in standing frame and getting power through his legs making them stronger by the day, and as for his quality of life, he’s got a smile on his face always, nothing fazes this kid he is trying to speak again he was and then stopped to focus on other skills,  but he’s getting there for any mom’s that are just getting there diagnosis please remember, they give you worst case sinario because they cover there own ass, but they don’t understand the pressure they put on family’s that just find out there baby isn’t the same as others, so here is my little rainbow boy flipping the doctors off

 

we’re SB strong here

When it becomes a special need, you have to fight the world!!!!!

So i want to address this matter because if i dont i may lose my head, we are waiting to be moved, because the house we live in isnt suitable for our family, nor will it give Caius the independence he needs, he will be in a standing frame shortly and then a K walker after hes mastered the standing frame, and as it stands when he is able to use the walker, he will only have the living room to walk around in, we have been refused a house even though they are fully aware of his conditon they have point blank refused just saying we dont meet criteria!!! (Wtf)! I dont even think they have gone over cais notes, or any information they requested, i have noticed in all things i have to try and get for cai, we have to fight the world to get accepted

That one think i fear for my kids, cai more so is to be and feel accepted, but at the moment the way the goverment deal with disabled familys, they dont really give us much faith to believe in them, im now spending my days hunting info, calling to request letters from anyone who has cared for cai,  physios, consultants, GPs, charity help, surely in a better world, they wouldnt continue to constantly put stress onto families who deal with what they have to on a daily basis, Its heavy on the heart and seriously not good for the soul.

 

 

Xxxxxx

For all the parents who walk in my shoes!!!

💙💛

This isn’t the baby I dreamed of
This isn’t the life I had planned
I think you have made a mistake here
I really just don’t understand
I don’t think I’m up to the job spec
A baby like this needs much more
Than a woman whose mind is a ship wreck
And a heart that is breaking and sore
But I’ll take him and give it my best shot
And hope that the love finds its way
I can’t promise the earth but I know that
I will give him my best every day
I could never have known he was gifted
With a magic unlike any other
That my soul would be mended and lifted
That he’d create such a grateful mother
I did not even see when it happened
When my heart stopped to grieve and to yearn
For a life that was never meant for me
Just one of the lessons I’d learn
Along with a new-found acceptance
That difference is hard but it’s great
That the love always comes in its own time
But for some there is just a short wait
That the things other mums take for granted
As their babies advance and grow old
Will forever be things I will cheer for
As I watch them carefully unfold
That the well-timed kind words of a mother
Who’s a stranger but walks the same path
Could give comfort as much as another
As they give hope, let me cry, help me laugh.
That I’d have days when I felt really lonely
And times when I’d sit down and cry
Moments I’d looked back on our journey
Asking how, asking when, asking why
But I’d also have days when I’d realise
That it’s fine to be apart from the rest
That a life I may never have chosen
Is now one in which I feel blessed
I would learn that I’m more than a mother
I’m a guard, advocate and a voice
And I’m not sure that I’d change life today
If I were suddenly given the choice
No, it wasn’t the baby I’d dreamed of
It wasn’t the life I had planned
But its made my life richer and brighter
And it’s now that I understand
Our babies don’t come to a parent
Who is special and chosen and tough
They come to a parent who is stubborn
and loving and will never give up
One who will fight for their children
Till they fall to their knees on the floor
But will get back again the very next day
When they realise they need to do more
One who will love so intensely
That words will just fail to explain
One who is glad of the journey
One who evolves through the pain
A parent who knows that its natural
To feel so very lost at the start
And one who will help and guide others
As they learn their new journey by heart.

Author unknown

The man who ill never forget!!!!

So i started this blog to help myself to heal, i also started it to help with other familys going through what we are or in there first stages, my life hasnt just been affected by Spina bifida, it was also affected by loosing my parents, at 35 i became an orphan, its crazy you always think your genna have your parents with you forever, even though you know that there genna die eventually, nothing prepares you for it, my dad was the funniest man i will ever know, i vould row with him then he would call me 25 minutes later saying the most stupid things, i couldnt stay mad at him for long, see dad had a heart attack a huge one it blew out three chambers in his heart, he spent the month after that in hospital, were me and my sisters went daily to see him, only to watch him clinging to life, he was a moaner, but i loved him for it, i always think that if i hadnt of gone to