how amazing a life is

here’s a video of my warrior and all the important people around him including his amazing brothers, daddy, auntie grandparents and cousins this is the reason that every time I look at him I knew he was given to me to make me a better person, I sing this song to caius all the time just not this version,

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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

*****Rant alert*****

I have litrally had enough of seeing people on Social media site’s moaning about the most stupid things, as there moaning here wasting there life thinking about how bad they feel with flu, or they have a headache, they should be rejoicing that there still breathing, or that there able to put one foot infront of the other, if theres one thing ive learnt about my sons condition is to be greatful i also see his frustration because his heads telling him to do something yet his limbs wont let him, thats frustration right there, not being on hold for 30 minutes to your internet provider, if you have a headache then take some bloody tablets, if you have a cold then calm down because it will be gone in a few days, what the hell is wrong with people, society is full of hypercondriacts, get a grip your living isnt that whats important i swear my head will pop off,

BE GREATFUL THAT YOUR STILL ALIVE AND KICKING BECAUSE OTHERS AINT OR CANT!!!!!

Just Wow

So this was sent to me and i had to post it because the person who sent it also knows and feels the struggle, and frustration i feel at times, but she doesnt realize if it wasnt for constant calls to her throughout my pregnancy i would of completly lost my self, i hope she knows how amazing she is

This ones for lesley and her Princess SB warrior Jessica….

The Special Mother
by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“This one gets a daughter. The Patron saint will be Cecelia”
“This one gets twins. The Patron saint will be Matthew”
“This one gets a son. The Patron saint…..give her Gerard. She’s used to profanity”

Finally He passes a name to an angel and smiles. “Give her a disabled child”.

The angel is curious. “Why this one God? She’s so happy”

“Exactly,” smiles God. “Could I give a disabled child to a mother who does not know laughter? That would be cruel!”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you”

God smiles, “No matter, I can fix that. This one is perfect – she has just enough selfishness”

The angel gasps – “Selfishness? is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally she won’t survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word’. She will never consider any ‘step’ ordinary. When her child says “Momma” for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see…ignorance, cruelty and prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side”

“And what about her Patron saint?” asks the angel, his pen poised in mid air.

God smiles “A mirror will suffice”

It takes special kind of people to raise special kind of child