Thursday, 2 August 2012

I can't sleep yet I'm incredibly tired. My mind just keeps racing, thinking about the weeks that have been and the weeks yet to come. Scared. Really scared for jayden. Watching him today so happy and playing with his toys. Laughing, eating, enjoying life. Worried about the weeks ahead of him.

He had us all up at 2am but i didn't care. Sleep doesn't matter when i get to see my little man so happy. Nothing else matters even at 4am when I'm out the front in the freezing cold watching my two boys playing on the battery operated car they have, theres no place id rather be. Watching them Driving up and down the footpath with luke steering and jayden giggling in the seat next to him. Im tired but i don't care. I don't want this moment to end. I don't want my little man to be sick ever again. But I know that he will.
It pains me to know end that soon he will be so very Ill again and there will be no laughing or playing. Only suffering and fighting for his life.

Wow this sucks so bad. Im tired because of lack of sleep, of this whole journey.

We had to go to PMH today as Jayden was booked in for a ultrasound on his neck. They needed to check that his veins were ok to put the new Broviac in on Monday. I held him as the woman put the jell on his neck and scanned. Before this I only ever knew an ultrasound as a device for scanning your unborn child. I sat there thinking about the day I found out that Jayden was indeed a true living baby inside me. Previously I had several miscarriages and they were all blighted ovums so no heart beat. But on that day I found out this baby was there. He was alive, a heart beat and I was truly blessed with the gift of his being. I still can't believe that now only two years later I am witnessing my beautiful gift of a boy fighting for his life. How can that be?

I sorted through his clothes today hunting for some that will fit As he has gotten so chubby from the
steroids that he is too big for a lot of them. Amongst them i found some of his baby clothes.. Each piece reminded me of a moment, a memory of how he was when he was well and none of us knew what was growing inside his head. I packed some of them up to give away but others I couldn't bring myself to let go of.

He's laying next to me now, sleeping, what I should be doing. I wish sleep came easy for me. I wish I could just close my eyes and find peace from my thoughts.
But I can't.

- Posted using BlogPress from my iPhone


  1. Thinking of u all Leisel :-)) your posts are just so heart wrenching and always get me thinking of my kids especially my almost 2 year old son, i admire you so much and although we have never met I truly feel I know you and Jayden through this blog- I pray for your family daily and wish you all the best lots of love Sam x

  2. Sending you huge hugs from Michigan! I'm so happy you all got home alright and the kids are back with their friends, toys and animals! Jayden will get through the next three rounds fabulously. There may be scary moments....don't lose your hope! We are all pulling for him back here in the states and will be following the next chapter of your journey.
    Lilli's mum,