Another big step

Well I'm feeling very proud of myself today last night we took a very big step and put Tommy into his own big boy bed we decided he wakes up between 2 and 8 times every night calling for me and at present we can not find a cause well after having 3 weeks of no less than 5 times each night i said it can't do any harm so the bed was made up and at bed time up he went it took about hour for him to drop off he got out of bed 3 times and called me from the bedroom door but each time i went up and said back to bed and with help from mummy back in bed he got , throughout the night he only waked 3 times much better one time was because he was confused as to where he was so took 45 Min's to calm him back down the other 2 times i went in kissed him and laid him back down so that's another big step for Tommy and a even bigger step for mummy as now it really feels like my little man is growing up , go go Tommy

Time to LISTEN

OK for a while now I've been feeling really low and doubting myself as a mum i know friends don't understand what emotion's you go through having a swan child and no matter how hard you try you can not switch off certain feelings it's easy for people to sit and tell you what you should and shouldn't do and say and when your head's in a mess after 2 yrs plus of no sleep no time to self worry confusing info overload etc etc there is going to come a time without you realising that you've lost the old you recently I've been feeling quite hurt by some friends and the manor in which they've spoken to me they've made me feel so small it's not worth me being here , for the past year my minds all over on the outside people think I'm happy and fine but on the inside i spend days walking around in a daze and even spend time crying to myself over something someone may have said but because i wont let my mask slip in front of certain people they just think I'm OK and if i wonder off my normal path for a while and spend time doing different thing's that I've turnt my back on who i am this is not the case at school i spent years on my own in the playground school was a sad place for someone with no confidence and who was quite and shy i went through bulling everyday and through out my adult life with different people i was to scared to stand up to but not now i now have to stand strong and be proud of who i am and what i can achieve the most important people in my life are my children and my hubby followed by my mum. I know at times people may feel let down by me and the things i do but I'm sorry I'm only human and I'm not wonder woman the poem below springs to mind at present maybe instead of people getting all funny maybe try to talk to me ask how i really feel but then STOP and LISTEN to what I'm saying DON'T but in and tell me your point of view just LISTEN being a swan parent without the answers we spend are life being spoke down to and there does come a time when we get fed up with those who know more or better than us and maybe not on purpose or sometimes without realising we might snap or turn are back but maybe that's the time to stop and think hey are they really OK because more than likely they will say yes but deep deep inside the answer maybe no i know in life everyone has there only problems and maybe i have not stopped and helped or listened to people that might have needed me and for that I'm sorry. So now thanks to the support of some fab people I'm ready to pick my self back up from the low I'm feeling i will try and ignore those that talk down to me and think they know better I'm proud of who i am as a doctor told me last week I'm doing a fab job through some very hard times and i am only human i will keep fighting for my son i will do my best to make this hard process easy for my other 4 stars i will do my best to carry my hubby as he still grieves for the loss of his mum whist trying to find time to do the things that help me carry on and make me feel good about my self and if by any of what I've said it's offended anyone maybe read it again in till you realise all i needed was someone to LISTEN to me not answer me and tell me there point's of view i know peoples points of view but for us swan mums the biggest thing we need is someone to LISTEN

Walk a mile in my shoes
see what i see
feel what i feel
hear what i hear
then and only then can you judge
why i do the things i do

A long week

A good week gone bad last weekend was fab on sat 11th Feb i held a charity valentines ball it really was a fantastic night enjoyed by everyone we raised £800 for the children's ward which was great lots of dancing and laughs were had by all. Sadly the highs of such a fab weekend did not last long as when Monday arrived poor Tommy awoke feeling week right on the half term holidays so Tuesday's planned family day out to monkey world with family and friends did not happen for me and Tommy yet again i stood and wave my other 4 children off to enjoy another fun day out with out me and Tommy watching them all go out with friends and knowing they were all having fun with others whilst i couldn't be there is one of the hardest things i have to deal with my family are my life but Tommy's needed me more so i snuggled in front of the telly with my baby boy for the day by now Tommy had lost the strength to sit or stand unaided when weds came he could hardly open his eyes so down to the hospital we go Tommy is now dehydrated and has a ng tube put down his nose it turns out he has rotas virus and sadly he couldn't keep anything in his tummy as the eve comes its time for daddy to take over and stay at the hospital whilst i go home to my 4 stars we jump into the normal routine daddy does the nights at the hospital whilst i do the days and then my wonderful mum helps at home with the 4 stars , Tommy looks so frightened as i leave him at the hospital his eyes tell me everything and i cry my self to sleep that night thinking of them eyes well day by day we carry on like this in till Fri night when the infections cleared and we can bring a very weak Tommy home still unable to weight bear or sit unaided but manging to smile we bring him home where his eldest brother awaits him with lots and lots of cuddles wow what a long week its been and a rubbish half term for all 5 of my stars as we had so much planned as a family i always feel so bad for my 4 older stars when ever Tommy goes into hospital as they miss out on so much

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