Wednesday, 8 July 2015

"When I get big like you mum I'm going to buy a house and I'm going to find the warmest room in there and you can sleep there with me." That was what jayden said to me this morning when we were up. It was so cold this morning in our house and we were all trying to keep warm. But we later sorted that out as we all went out to the shops today and bought a little heater for the sitting room. Now it's the most popular spot in the front of the heater.

We have finally moved with just a few things left that we are going back and forth to get. It's been huge. Didn't expect it to be so huge nor as stressful as it was. It took a toll emotionally as well which also took me by surprise. But looking back now it all makes sense and I was a bit naive to thinking everything would or should run smoothly.

I was definitely saddened by closing a huge chapter in my life and felt very teary about saying goodby to our family home. However like a beautiful friend of mine said "a new family will live there and make new memories and thats a good thing". She's right and we are aware that it is a family with four children under eight and that made me feel much better. The comfort of knowing our family home will now become someone else's family home. It will be loved and that's the most important thing I think.

I also got comfort in the thought that I believe this is what my mum would have wanted and that where ever we go she will be with us not there in the house.

Feeling a little flat tonight as I did an interview with a television show to help raise awareness for childhood cancer, in particular the children's cancer institute that is currently raising funds for personalised medicine in Australia for children diagnosed with cancer.

I'm very much an advocate for research and had hoped the exposure would help to get them the much needed funds they require. However the interview was not easy and definitely has taken its toll on me emotionally. It's very difficult to revisit a time that you spend most of your waking hours shutting out. It's difficult to be reminded and asked about your fears. And it's just hard to allow all those wounds to reopen.

The kids were great through it all and truly are my world. They are my beautiful little rascals and I love each and everyone of them so dearly.
I never watched the footage on TV. I couldn't, but danny did and said it was fine. I just hope it raised the awareness and funds needed.

I also felt uncomfortable about the newspaper heading in the paper this morning. They referred to jayden as a "miracle boy". It might sound weird to anyone else but when I saw the heading it made me incredibly nervous and feel extremely vulnerable. I can't explain it but I feel like if I let myself feel at all comfortable or relaxed about jaydens condition then it could all go very pear shaped. Like I need to be vigilant all the time and not feel "ok" about anything. So when I read this, i was like "no! Don't say things like that! It might all go to shit now that you've printed that!"
That probably sounds crazy and completely out there but that's how I felt.
Yes I'm so grateful he is with us, oh my goodness am I so happy about that. And yes I acknowledge that it is incredible that he is with us given his odds but I'm very aware that this could change in an instant and I don't want to be thinking everything is "ok". When in fact, the reality of childhood cancer is, its "not ok", not ever.

When jaydens an old man and he's visiting me in an old peoples home or as he says "will let me sleep in his warmest room of his home" then I will be saying "miracle boy" then I will relax and stop worrying about anything other than old age stuff. I so hope and pray I see that. More than anything in the world I hope for that.

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