Chicken pox

It's the little things that you don't think about that are the ones that hit .This week my star went down with chicken pox but in true star fashion he got covered in them and very sore he wanted cuddles but it hurt him to be touched when he saw the spots on his arm he screams and try ed to get me to wipe them off at night he cry ed out in pain every time he rolled over no matter how much i try ed to calm him and explain he just didn't understand that's when it's hard that's the days when i see the sad nest in his eyes the looks of pain and help me mummy these are the hardest days the days when i feel i cant do anything to help my poor star these are the days when i feel like a hopeless mother , i know chicken pox is a normal childhood illness we all get but why does my poor star have to suffer so much i know in time the illness will pass and so will the spots but the scars will always be there along with others in my heart

Happy 1st birthday to the fantasic SWAN UK , thanks for all the support and friends you have brought to me , your all fantastic x

What a lonely world it could be

I feel so lucky to have found the amazing SWAN UK group and my lovely SWAN SISTERS  they are there for me come rain or shine there is always someone there to offer support , to moan with , to laugh with and to celebrate even the smallest things with .
Without SWAN i know my life could be a very lonely place knowing there is someone who understands really brigthens my day .

SWAN sisters

OK so at present I'm full of smiles not because things in life are great not because we've had answers that's all still not changed its because of a very special group of ladies these ladies i like to call my SWAN sisters i suggested a group of us got together and did a sponsored weight loss to try and help raise money for the fab SWAN UK we spent the evening all chatting over facebook and our smiles just got bigger and bigger i love being part of this swan family it doesn't matter if i want to cry ,shout , giggle and laugh or sit in the corner rocking back and forth theres always someone there to hold my hand don't get me wrong these new found friends don't replace my other friends how can they we've been through to much together , my new found friends understand in a different way to others as they live the same life as me so today i want to send extra big hugs to my friends i call my SWAN sisters thanks for picking me up on a low day

A lovely day out

On Sunday we decided to pack the 5 kids into the car and make the most of the last day of the Easter break my Daddy Star wanted to go to a little coastal village called Beer so off we went it was a beautiful day the kids and daddy star went climbing around by the rock pool whilst me and Tommy sat and watched the beautiful view on the very stony beach we sat and cuddled and took lots of photos of the views today Tommy wasn't bothered he couldn't join the others in there fun he was very content on cuddling up with mummy and pointing out the boats and taking photos today was lovely no crying in frustration at the fact his legs would not carry him across the stones to the rest of the family today was what id call a perfect day our life Ive wrote this blog as part of the define normal challenge  http://www.justbringthechocolate.com/define-normal/

Back to normale

We've had a great Easter Tommy loved having all his brothers and sisters home he only had one crash out day during the whole time which was good , he enjoying following them round the woods to find his eggs during a family egg hunt and seeing the animals on the farm its was smiles the whole break for all of us but then yesterday the kids went back to school it was as if he was saving it because yesterday the coughing started today his chest is bubbling and hes so weak he cant sit up so back to normal we are again but its not going to get me down as Ive such lovely memories from our Easter break we spent a lovely 2 weeks as a family which was needed by all sometime out as a family with lovely memories shared

Alovely day on the farm

Yesterday after a busy week in the garden we decided to take the kids to the  farm Tommy enjoyed himself and smiled from ear to ear signing each animal whilst making the animals noises pigs are def his favourite whilst he thought the ducks were just there for him to chase just like he does with ours from home was so nice to see him enjoying himself

Why is everything a fight ?

Feeling very cheesed off tonight as i write this blog we went to look around a special school today which was lovely whilst we were there we saw the schools on site physio who was lovely within 5 minutes of watching Tommy she said he would get lost at mainstream school (my worse fear where school is concerned is confirmed) she also commented that he should have support on his ankles due to his hyper mobility and muscle weakness another of my bad feelings confirmed we were told in Sept 2011 he ankles were strong enough to manage without support boots now we've always felt this was not right and now today we are told are feelings were right so why is it I'm now going to have to start fighting for more support yet again i was told the reason why today and that's because all people see is a happy little boy who is now able to walk so is now shoved to the end of the pile she said its not till people have spent more than hour with him and watched him closely they realise things really arnt right argggggghhhhhh i just feel like I'm banging my head against a wall and that my son is not as important to others I'm so tired of fighting whens it going to end

Another hit of things arnt the same

Today Ive been left feeling sad Tommy spent a good 30 minutes sobbing at the back door whilst he watched his brothers and sisters play in the garden it was heart breaking to hear and see the sadness in his cry and in his eyes brought pain to my heart i wish i had a extra pair of hands so i could have carried on cooking the dinner whilst my extra hands could have taken him out to play sadly Tommy is to unsteady on his feet to be outside without support its just another stab in the heart that Tommy is unlike other children of his age

our normal life

So you ask me how a normal day begins for us well Ive had to think long and hard about this as I'm so set in our morning pattern i could do it in my self it all begins at 6pm when 2 of my stars wake up this is normally followed by my Tommy wakening up calling for me so i go up and carry him down we then sit on the sofa for a ten minute cuddle and i massage him feet ankles and legs as he waves them about at me indicating they are causing his problems what we don't know as he can not tell us yet every morning i hope or the answer then when hes settled its time for breakfast and for morning meds heart meds , thyroid meds and now his new meds for the dribble after breakfast its time to get dressed and time to fit Tommy's hearing aid depending on the sort of the we have ahead and also what type of day Tommy is having it could be a my muscles are weak snuggle on the sofa day or it could be a full of mischief get in to everything day or a my eyes are bad  (nystagmus) so I'm going to have major sensory issues to us taking each day as it comes is normal for us we never no from one day to the next or even hour to hour how Tommy will react or what his needs maybe , also fitting in all his many appointments is a step away from ordinary life they same as his changing bag is far from normal instead of the normal nappies etc we have it full of meds hearing aid battery's blood testing kits , hospital phone numbers extra dummy's and his snuggle blanket in case of a sensory flip out for us its normal life we don't see or think of it as different  but when we think of a normal 2 and a half year old and there daily needs we see a big difference but this is our normal life one we've fallen into with out realising or thinking its second nature  to be giving Tommy his heart meds 3 times a day every meal the bottles put on the table almost like the salt and pepper pots  its just part of our life OUR NORMAL  TO US LIFE

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