I'm away with my family, joined by other families on a weekend camp. Not in tents but cabins on Rottnest Island. I should be asleep, we've had a big day but I'm not.
Sleep is definitely a key factor in trying to cope with all this and when I don't get it, it makes it even harder. I've been tossing and turning for ages now and decided to write my thoughts down in the hope of getting back to sleep at some point.
We are away on a camp with Camp Quality, which is an organisation that brings families together of children with cancer on Camps such as this one and other social events. We haven't met as many people as I had hoped but we have had a wonderful time as a family. Missing the home comforts a bit but loving the time spent with my family without worry of daily chores and stuff. Not that I worry too much about them these days anyway.
My sister came with us for the first night as Danny had to work but he joined us this morning and she returned home.
Since We've been here we have met a few new people. Parents of children whom have been in remission for quite sometime. Different cancers, mainly leukaemia. Through loads of research they have now been able to get great results with leukaemia and these families are evident of that. I have to say it made me sad. Happy for them and their beautiful children as they all seem to have found a place now where they can breathe easier but really sad about Jayden's prognosis. One mother told me that the trial her child went on had a 93% success rate. I sat there thinking, shit, we are at the other end of that statistic. 10%. I know how damn nice it would be if we were given a 90% chance rather than a 10% chance and i hope with all my might every second of everyday that Jayden is in that 10%.
So now I'm laying here wishing And hoping one day I will be on another of these camps, ten years on with Jayden. I can t help but be doubtful. That when statistics are thrown at you like that it sometimes feels hopeless. No matter how many councillors I see they can't change those numbers. They can help me to cope with them but they can't change them.
I always said there is no such thing as a good cancer when your talking about your child in that same sentence. They are all crap. And they are. But as I lay here now I wish my son had of got one with the odds these parents were given for their children, a 90% chance. I wish I could have been going through this mess with the confidence that he had good odds rather than crap ones. I'm not sure how different I would feel, maybe just as crap but I'd hope 'better' would be a word I could use to describe it.
I'm listening to everyone sleeping, we are all in the same room, the kids in bunks and Jayden in bed with me. He has struggled a bit this weekend as he wasn't able to have a decent nap during the days and they have been full off things to do. So a few cranky moments, typical of a two year old but always worrying for me.
I'm constantly watching him like a hawk for any signs and when he's tired and miserable I'm worried he's got something else going on. His cold is still around but it doesn't seem to stop him but as he lay in bed tonight with me I thought he looked really unwell. It's no doubt because he's exhausted but I will never stop thinking the worst. Comes with this horrific journey.
I'm not sure what I was expecting from this weekend and thats not to say it hasn't been great because it has. thank goodness for this organisation that runs these camps and the volunteers that help to keep it running. truly beautiful people. but I guess I had hoped to meet someone with a similar situation. Maybe they are here and I just haven't met them yet and maybe what I'm looking for may not be in that person but rather someone I've met already. I don't know.
I do know I'm constantly searching for some respite from this nightmare. Whether it be a medical article with good news on Jayden's cancer, or a chat with someone who can help me breathe. A councillor, a friend, anything. Is that me trying to get back to the head space I was in before this nightmare? Probably. Still wishing we were the family we once were? No doubt.
I don't think I'll ever stop wishing we were that family. Never stop wishing we weren't living this nightmare. Always wishing i could breathe again as before. But also knowing there is no way out, or going back. and instead now desperately seeking ways to cope. Ways to manage this life without turning into a complete basket case and damaging my children's lives In The process. Trying constantly to reflect on my days and making them better where I can so that my kids can live as normal life as possible.
Challenged daily to find ways to keep picking myself up when I'm knocked down. Sometimes finding it all too damn hard and collapsing in a heap and sometimes just scrapping through. But always searching to find ways to make it easier, more manageable but often left wondering if that's even possible.
One things for certain and one thing never changes and that's this nightmare. It's always there. We live under a constant shadow of uncertainty about our sons future and all we can do is find ways to cope with that. We can't change it and thats really hard to face. to have no control of it, change it and make it better for our precious little man. Always trying to focus on making his life and my other two kids as beautiful as it possibly can no matter how long. No one can truly know how hard that is without walking these shoes.
This weekend I'm amongst many parents who have walked these shoes and continue to do so. All of us hidden amongst the crowds, no one ever really knowing what each of us go through daily. But we live all the same. Get about our lives the same as others. the only difference is the feeling we have inside. i cant speak for others but for myself its pain of the uncertainty, its pain of the prospect of losing your child. his every smile, laugh, tear, cuddle warms my heart but also tears it in two with the thought of not seeing that smile, hearing that laugh, wiping that tear away or feeling that warm cuddle again.
That's what keeps me awake at night and that's what Im desperately trying to find ways to cope with. Because that's what's so damn hard to live with.