Food for thought.

so its been a while since I poured my heart out,

I have to say, I feel these past few months I’ve been banging my head against a wall, haven’t seen a physio in months, Cais frustration has only got worse, and more harder to bare, these are the things they don’t tell you when having a disabled child, how much it breaks your heart watching your child wanting to move forward, but his body wont let him, I’ve been emailing daily calling writing letters, crying feeling even more down, trying to get what’s right for our family, and it is heart wrenching the fact you have to fight so much to get further, when you know full well others seem to do better,

on the upside the fortication of folic acid into bread is happening now I so hopefully that takes the uk termination rate way below 80 percent, my sons neuro surgeon will be the one performing the foetal surgeries so a lot more children will be walking sooner, kind of feels like a kick in the teeth to me and the others who weren’t suitable for surgery, i  think if it wasn’t for my family and friends telling me not to give up I would of had a meltdown, in all this time amazing things have happened though cai getshis very own first boots in November, cai can sit for longer he can also stand up against something for 10 seconds and today he learnt to roll over onto his chest and try to make his way to me this is a humble time for me because with no physios around its down to me and Chris to get cai to where he needs to be. I suppose one thing I can be certain of no ones allowed to give up ..EVER!!!!!!  PICS TO FOLLOW OF HIS AMAZING PROGRESS

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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