Saturday, 4 May 2013

I woke this morning at 5:00 and couldn't get myself back to sleep. i laid there thinking about Jayden, and worrying about LPs. I recently read an article that got me thinking "why doesn't Jayden get an LP every time he has an MRI?" I emailed Nick a few days ago and asked him but he's away at the moment so I've had no reply. So I laid there worrying about that and every other thing concerning Jayden. I then started thinking about his birthday coming up and worried about that. I want it to be perfect and him to be happy and comfortable and I'm worried he may not. I want him to be surrounded by those that have been his familiar faces since this journey began and for him to know he is loved so much. This birthday means so much to us all. And all i want is for him to be happy and have good memories of that day. his last birthday was spent in hospital and i hope he doesn't remember that one. So this one is really very special and i so want him to be happy. I laid there also wishing and hoping that i get to see him have so many more birthdays.

When the kids finally woke I was feeling pretty exhausted and wished I had shut my brain off so I could have got more sleep. They were so happy though and I soon forgot how tired I was. Jayden still doesn't seem himself though and even Layla said "he doesn't seem to smile as much at the moment mum". He doesn't. He seems to be in deep thought a lot and I can't help but think something's changed. Im Always worrying.

First up today was a movie with Camp Quality. The same organisation that we went to Rottnest with had organised a free screening of the movie "Croods", for family's touched by childhood cancer. We got there a little late as entertainment had been organised before and so we missed that.

There was a huge line to go into the cinema and it took me a few seconds to realise everyone standing in it was a family with a child who's had cancer. Not a good feeling. Not a good feeling to know so many children have suffered and have an uncertain future and I know this is only a small percentage of how many families there are out there.

A beautiful girl, bald, nasal tube turned to see us and I smiled. She smiled back with the beautifulest smile I've seen. This world is so damn unfair. These kids are so beautiful and so innocent and it makes no damn sense that they have to go through this. I felt very overwhelmed with emotion standing amongst so many families travelling roads similar to ours and frustrated at the same time. Frustrated that most people don't even know these families exist and that there are SO many of them. I felt like getting a video recorder out and filming the faces of these people and broadcasting to the world that this is not a rare disease. They are all, like us, normal people and on the outside watching this line you would never know any different but on the inside we have lived an continue to do so, a nightmare.

The film was good but was too scary for Jayden so I had to leave with him before it finished. That was fine and we waited outside in the foyer for Danny, Layla and Luke to come out. We headed home shortly after and Jayden was asleep in the back of the car by the time we got back. I put him in his bed and danny joined him while I went back to the other two. Jayden wasn't asleep for long and when he woke he was very unhappy. He continued to be that way for most of the afternoon and it really got me worrying. He's just not himself and I wish I knew why. I wish I could be comfortable thinking or knowing it was just something simple, but I'm not. Nothing is simple anymore and the slightest change is terrifying. I so wish there was a simple test like taking a urine sample that we could do everyday just to ease my mind for that day. It Wouldn't stop me worrying about the future, need a magic wand for that but it would relax me for that day.

We are all in bed now. Everyone's asleep but me. Another day has nearly finished and another day to be grateful to have spent with all my kids. And another evening to wish, hope and pray for many more days to come.

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