It’s a strange fact that we all have so many dreams and aspersions in life,

we travel our journey not really giving much thought to anything outside our own World.

We feel that our little problems are the greatest problems out there and I can’t believe for one second that we are wrong, truth is it’s important to us the issues we face are ours and ours alone. Every now and then you have that moment where your thoughts are put in prospective but other than that you simply take the days as they come. I have for many years had a bucket list. A list of things I want to achieve. Things like ride a jets ski, a parachute jump, make cheese, even milk a cow, why not? We all know my biggest dream is to climb Everest! 

One of my bucket list entries was to sit and comfort an ill child. I never really thought out side of that I just wanted to do something that was just nice, something rewarding. 

I remember clearly the moment I ticked that off my list was one of the hardest moments of my life. As I sat in Noah’s Ark children hospital talking to a young 2 year dude who has a very rare type of cancer I had wished this moment could be a million miles from reality. There are very few people in the world with diencephalic syndrome in fact the young man in front of me is only 1 of 2 people in the country who has it. 

I sat next to the babies cot and was chatting away as he was struggling to stay awake, I could see he was fighting sleep so I gently started to smooth what hair he has left and he was fighting with his own eye lids, I could feel the emotion building up inside the feeling of seeing this young innocent child suffering was just unjustifiable.

But when I wrote this into my bucket list being sat here at that time with my 2 year old nephew was not what I had in mind…!

For me this was a tough experience and one I will never forget. I love children and I hate to think of them anything other that happy and healthy and yet there I was on a ward where that dream is far from real. I looked around and seen the other ill children cradled by their parents and I questioned how any of this was fair. 

This rare cancer that My little hero suffers with has caused a tumour on the optical nerve. He had an operation to remove some of the golf ball sized tumour but they could not take it all without making him completely blind.

The tumour has grown back bigger and just as aggressive.
He has had intense chemotherapy to try and reduce it, but that has not worked. And there is only one option left.

In just a two days he will be going back into hospital where another operation will need to be performed only this time complete darkness is looming. 10 hours the operation will take, the doctor will perform from start to finish and hopefully at the end the tumour will be gone but unfortunately so will the optical nerve. 

I keep telling myself that he is young and he will cope and adapt. He will cope and he will adapt but he shouldn’t have to. If I could sacrifice my sight for his I would, if I had to give my life so he could be well I would but I am helpless and powerless and that is pain beyond everything that I am suffering with my own illness.
I don’t know how my sister and brother in law do this every day it is tough and I can’t help but respect their strength. But the journey is about to take a new direction but I have no doubt that they will find a way.

The short time I was at the hospital them many months ago was hard but I was in the room for 3 hours that’s all 3 very short hours. I did not have to give him any meds or take temperature or clean nappies and I found it emotional these parents live in this world this bubble this on going routine day in day out……

Not just my sister and her husband but all the parents who have ill or disabled children. 
So please take a few moments to give a thought not only to the ill children of this world but also to the parents and grandparents, to the families that live with the on going worry and most of all……Don’t take things for granted because everything can change in a heart beat.

But for me this is for my little hero xxx

And for my family who I know don’t deserve any of this or anything else that is currently going on.

Love you all so muchxxxx