Saturday, 13 October 2012

Sunday thinking

I just woke from a nightmare that Jayden fell in a body of water that was so murky i couldn't find him. Awful. How our minds work to interpret things at night in dreams.
My little mans lying next to me now snoring along with danny and Luke. We picked the kids up from Danny's parents yesterday and its so nice to have them all home again under the same roof.

Yesterday morning when we woke and the kids weren't there it was very quiet. Jayden woke up really unwell, shaking and lots of phlegm in the back of his throat. He was looking weak and seriously ill. He did a huge vomit and it was full of phlegm. We were really worried. We both knew it was something to do with his lungs. If we were to decide at thAt moment about the third round then it was a no brainer-no way were we going to do it he's telling us he can't do anymore and that should be enough for us.
And it should. But I'm still so scared I'm making a wrong decision. I think in some ways it's that life long conditioning that doctors are right and are the specialist, but are they always? I know if we had of left it up to them they would have done a lot of things different and we are so grateful we decided to do otherwise but with this decision I'm just still hesitant. My gut says no and that's cause I know we don't have the ability to watch our son tortured again and Jayden most definitely would say no if he had a voice. I just want to feel absolutely certain and never look back with regret. Although I think no matter what we decide we will have a certain amount of regret. Deep down I know my decision and danny knows his. It's just doing it and living with it that is the most difficult part.

I could never have imagined in my wildest dreams that my life would involve such a huge decision. And the other day I wondered why I was feeling so ill and had a headache that lasted two days and is still lingering around today. The enormity of this decision and this entire situation is beyond words.

Fortunately as the day progressed yesterday Jayden slowly felt better. He still wanted me to carry him a lot of the time but he seemed happier especially when we arrived at Nannas to pick up Layla and Luke.

It's morning now and I'm sitting out the front of my house. Jayden woke up much more happier today and certainly seemed better in himself than yesterday. No doubt it helped that his brother was laying next to him when he woke. He has spent the entire morning following him around and not letting him out of his sight for a second. And to Luke's credit he's been marvellous with him. For all the times Luke plays up and his behaviour at times can be shocking there is no doubt he loves his little brother and cares for him deeply. He was so happy to see him when we picked them up from their Nannas yesterday and it was beautiful to see him fuss over him like an old man.

It's a cloudy day today but not too cold. The wind is blowing and my head feels like a heavy weight on my shoulders. Essentially it is of course but right now I can really feel it. It hasn't stopped thumping for days. The stress in unbelievable.

This morning we were visited by a beautiful couple we met on ward 5a in the beginning of this nightmare. they were entering their own nightmare at the same time with their beautiful child. they too have had to make the same difficult decisions we are making now. Its always truly comforting to be amongst people who understand this dreadful scenario and are managing the best they can. It was inspiring to say the least to talk to them and know such bravery and love for their child. I believe they will be people we have in ours lives forever. During this whole journey the advice of doctors has been important but the advice from parents walking our same shoes be it in person or via messages has been invaluable and of which I value and listen to most. They 'get it' and that's worth more than any medical degree to me right now.

It's afternoon now and we are on our way to a wildlife park. From now on in I want to spend every moment of Jayden's life discovering things, seeing new things and experiencing everything we can possibly allow him to experience. We may not know how much longer he will be with us but we do know we are going to try to make it the best time possible.

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