At a low point - who knows

Some how I've fallen into a really low point and feel quite let down and hurt by a few people i thought might just understand what I'm feeling (maybe it's me taking things to heart). Maybe it's the lack of sleep the past week , maybe it's star's steps backwards , maybe it's just a build up from the past 2 and 1/2 yrs that I've fought against and never let worry me , maybe it's the MRI results , maybe its seeing the sadness in his eyes when hes weak , maybe it's the not knowing what the future holds , who knows who really knows if i don't then I'm sure no one else can , i mean who knows what me and my star fight against day after day all they see is his smiling face no-one hears his crys at night or the sadness behind his eyes when he's to weak to play , no sees the fear on his face when he wakes at night and cant focus to see his mummy.
No-one knows they see a happy family full of smiles , the smiles are a mask so no one can see the tears in our eye's and the pain in our heart ,that we feel when he cant say whats wrong but the pains there in his face.
So although I'm at this low point who really knows as i fight not to let my smile mask drop

A step backwards

So as you all now my little star has been doing so well the past few months but in the last week hes slipped back down hill it began with his nystagmus being worst followed by his balance he went from being able to walk 8/9 steps before fallen he could only manage 4/5 then it went to the moaning and crying in his sleep and being unable to roll himself over in his cot to Fri when he could walk at all he spent the whole day flopped on the sofa watch telly and wouldn't even eat a biscuit for everyone who knows my star hes a complete biscuit bin and never refuses them he had a restless night Fri and it took a few hours before his legs could carry him but today (sat) he had much more energy we went out for a lovely family walk where Tommy sat in his wheelchair and had a smile on his face the whole time.
Sadly the way Tommy has been the past few days is very common for us as its happened many times before its just sad to see him take a step back but also good to know that with a lot of rest and TLC no matter how long hes down he will get back up again  

Every night i look at you

Every night before i go to bed i stand and watch over my little star so thought id share some of the things that go through my mind when I'm watching him sleep

Every night i look at you and feel proud that your a part of me ,
i wonder what your dreams might be ,
as  i watch you sleep soundly all cosy in your cot,
at times i shed a tear or three
and hope that the pain will leave you be
you look so peaceful lying there
as if your cares have past us by
But in the silence of the night
Your little voice will cry at sweet
for what you can not tell us yet
But the touch of my hand will calm you back
Back to the land of your sweet dreams
Where run and play freely you laugh and sing
and know all needles and tests will let you be
Every night i stand and look at you ,
and hope some day a call will come

to make your dreams come true

Fundrasing

For those that know me your know that since having Tommy I've started doing lots of fundraiser for our children's ward in the past I've had comments made like don't know why your doing that what do you want to do that for where do you find the time , well i thought id explain why i like to fundraiser as you all know Tommy has spent a lot time on the children's ward through illness so for the 1st yr the children's ward become like a second home to us so i feel what better way to say thank you for all the care and kindness they've shown us also i find when I'm doing the fundraiser its kind of a escape from all Tommy's problems and all the every day difficulties we go through each day also its something i enjoy doing and very like I've achieved lots since beginning my venture with fundraiser so watch out for lots more fundraiser fun this yr begin with our valentines ball on 11th Feb