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