Friday, 19 October 2012

Jayden woke a little happier today but still not himself. im worried about his 
little body and whats actually going on. we are due back in hospital monday but 
im thinking i might get him checked out earlier. 

He threw up this morning and most of it was phlegm.  I wonder if we will ever 
see the day when he will actually stop vomiting. I hope for his sake we will. 
 
He had his 'gumpy' over to visit today and was so happy to see him. Gumpy of 
course was equally if not more so happy to see Jayden. He's so beautiful with 
him and so happy around him I get the feeling that's half the reason Jayden loves 
being with him so much.
He would have to sense others sad around him, including myself. Even when I'm 
smiling at him, he would know. Not a moment goes by where I don't think of his 
condition and that one day I may lose him forever, im sure he feels that sadness 
no matter how hard i try to hide it.. 
 
He fell asleep in the car again today but today I was able to move him without 
waking him. I carried him inside and laid him down in my bed and snugged next to him. 
He snuggled right into me and we laid there together, him asleep and me thinking. 
once apon a time i would have got up once i realised he was in a deep sleep and got 
about the house hold chores. now i lay there soaking up every second of being with 
my little man. i laid there watching the trees out side the window blowing and 
listening to the sound of him breathing. we are all so much in a hurry these days 
that we forget to stop and cherish every little moment. they grow up so fast but 
in Jayden's case may not at all. I'm going to make sure i don't miss a second of 
it and be by his side for all of it. 
 
It's evening time and we are all sitting together watching a bit of TV. It doesn't 
get better than this. I love having Jayden at home and I love having us all together. 
 
Jayden and Luke are having fun in their new matching pjs they were given yesterday. 
Jayden couldn't be happier- wearing the same clothes as Luke. A beautiful person 
dropped them off at the kids school yesterday and the kids were so happy. They are a
little bit big but the boys insisted on wearing them anyway, very funny.
 
I can't help but look at him in his big pyjamas and hope with all my might I see him
grow into them. I hope i get to see his hair grow back, his eyelashes, his big smile
on his face for all of the day. i hope i get to see his chest bare again, with no 
broviac hanging out and lumens to tuck into a net he has to wear around his bellie. 
i hope i get to see him run, ride a scooter, a bike, wear a school uniform. i know 
he does. everyday the kids leave for school he cries to go with them. i hope we get 
to see him do just that. 
 
Everyday we get with him i know is a blessing but I so want a lifetime and I will 
never stop wishing for that.
 

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