Saturday, 29 December 2012


So much for every second counting, I spent this morning yelling at my middle child and therefore certainly not making every second count today. I truly struggle with my eldest boy and am not sure what to do with him some days. for a long time we have really tried hard to make his life so that he does not feel so left out. But that has been very difficult to do at times and now I'm at a loss.
I think we just have to all accept that things are different for us all and we all have to make some adjustments. It's just hard. Hard for everyone and I don't believe there's an easy solution. I just wish sometimes that I could feel as if I'm getting it 'right' with him but most days I I don't feel like that at all.
I put him to bed early with Jayden tonight and I'm so glad I did. They haven't had a bath together for ages and they had a ball. The laughter coming from the bathroom between them was priceless. Just beautiful. Best sound ever, truly could listen to that for the rest of my life.
They both fell asleep after we finished reading books almost immediately. Very tired little men. My daughter went to bed shortly after and for the first time in I truly don't know how long, danny and I were left on our own to watch tv. He is usually in bed early because of his job but not tonight. It was nice to spend some quiet time together.
We watched the documentary by William j Saunders that was done on Jayden's treatment when we were in Chicago. I only just managed to find it today! Its beautiful and made both Danny and I cry. We were reminded of the beautiful people we met in chicago and the wonderful guys we spent a few days with that made this film. Really amazing people. We miss them all.
It's only a 3 minute documentary and its just so well done. I hope everyone I know watches it so they know why we travelled all the way to the states and of course to see how good this director is. Its Truly beautiful.
It reminded us of the night we sat in our apartment in chicago where the interview was filmed, what we were feeling during it and how we felt after it. How difficult that time was emotionally but also how lucky we were to meet so many beautiful people.
I posted it to the Help Jayden Stone Facebook page but it also can be found at the following link:
At least I hope that's correct.
The director is truly amazing and tonight we also watched clips from his other movies and they all look wonderful. The next time danny and I get a moment together to watch something we will be sitting down to watch one of them.
I'm in bed now with my little man squished next to me. He's got a beautiful head of hair now and I love touching it. Unfortunately his hair won't grow where he was radiated so he still has a big bald patch at the back. But , he still looks beautiful.

My beautiful sister came to visit today again, she was here on Boxing Day too and Jayden just can't get enough of her. She's such a warm, kindhearted person with so much love to give. We are all always so happy to see her and her gorgeous kids. So this afternoon was really nice.
Well its late now and I should be sleeping but instead I'm laying thinking. The documentary we watched today stirred up a lot of emotion in me and its difficult to sleep. It pushes the reality of Jayden's tumour back into my thoughts and just makes me incredibly sad. He looked so beautiful in the pictures and so innocent. Watching him reminded me of how much i know he loved spending that time with all of us every second of everyday in chicago. We all did. Kids weren't at school, danny couldn't go to work so we were all in it together. Really important. Really special. It also reminded me of how very difficult, scary and incredibly emotional that time was for him as well. He was amazing through it all though and his determination to just 'get on with it' was and still is amazing.
I love him so very much and so does Danny, I don't think anyone realises how hard it is for danny too as he doesn't blog or talk about it much to anyone. he holds it inside and locks it away. I wish sometimes that I could do that, have a key and a place I can lock my fears away. Only open it when absolutely necessary, but otherwise keep them hidden.
I think if I did I would use it to lock my sadness, anxiety and heartache too.
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1 comment:

  1. Beautiful picture of your sleeping angel xx Stay strong and well Jayden. You are a amazing, brave Mumma Leisl, try and keep hold of the light and laughter xxx