Wednesday, 16 May 2012

He’s Going To Die Anyway…..

It's a harsh title for a blog I know - but that's what this post boils down to - and it's possibly what made you click on a link to read it.

It's a post written direct from the heart, because I see kids with special needs and disabilities as beautiful, incredible and very precious. I know God sees them in the same way.

I have some questions: 
Who can Judge the quality of life of a child? 
Who has the right to say which child deserves to live and which should be allowed to die? 
And - just what is quality of life? 
Because a child cannot do a combination of things other children can do - does that mean they don’t have a quality of life?
In my mind - no one has the right to judge, especially when that assumption is based on what is perceived to be a ‘normal’ life.  And yet… people do judge on all these matters.
When I was nursing I came up against this a lot, but having been out of that world for some time I have been shocked recently by the attitude of some doctors to my friend’s young disabled child.
This little one has many medical problems and disabilities that I won’t go into, as I don’t want people to be able to identify mum and child. 
This child has a great quality of life! Having also been diagnosed as having severe learning difficulties on top of everything else, it has become clear that this particular diagnosis was totally wrong. But mum found it difficult to have that diagnosis removed so they could get appropriate schooling, sadly this diagnosis is sometimes still believed at the hospital, even though it is so obviously wrong!
This is a child, who on spotting mum was upset, communicated the fact that he had written a song. The words were “Trust Trust Jesus”, repeated. Amazing words - done in an age appropriate way, showing faith and concern.
This little boy is loving, has friends (and misses them when in hospital), is VERY cheeky, has a wonderful sense of humour, can communicate and can understand the world around him. This child is greatly loved by all who have the pleasure of meeting him.
And yet…. The doctors around him question his quality of life, and then question how far they should intervene because of this. One doctor said it would all end in tears and that the last couple of good years have been ‘a fluke’.  On another medical team, the attitude seems slightly different with suggestions of what they can do to alleviate the problems he is currently experiencing, but at the same time questioning the quality of life he has as a result of this particular problem. 
My friend is looking at ways to show that her child has a great quality of life - possibly with a diary with photos and comments from friends, but why should she have to do this?
She know’s that her child’s life is going to be short, and obviously that is a source of great sadness. But she and all her friends want to see the doctors fight to make that short life the best ever, not back away because they question that quality of life.
Let me make it clear that the doctors are doing nothing wrong! But… It would be good if they could occasionally see beyond the patient and the medical conditions -  and see the child.
I’ll balance my comments by saying that there are times when you know it is time to allow a child to ‘slip away’. As a nurse I have sat and held many children who have been in extreme pain, knowing the only level of pain killers that would work would kill them. I have held them and prayed over them, and then asked God to intervene. But even then, with a child in extreme pain, who could not speak, and had little awareness of the world around them - it was not my role to judge. I would often ask consultants to treat a child with dignity and respect in the way they chose to medically intervene, and also question eeking out the child’s life for another 2 pain filled weeks, just because they could. So yes - there are times when you have to weigh life and pain, but always alongside the parent’s wishes. 

For my friend’s child though - this is not the case. He has a great life, and he has the right to have appropriate medical intervention, based on who he is…. a wonderful human being.  It should’t be dependent on the assumptions of that child’s quality of life. 

Tuesday, 15 May 2012

Facebook Rage!

I don’t often say anything of any note on Facebook - I’m often quite bland! But every so often I put something on that causes some reaction. Usually this is because people either vehemently disagree, or don’t think I should air my views on Facebook.
The subjects of my last two statuses, I thought, were not that bad, but…. apparently they were! 
I dared to speak out about the contrast between young musician of the year (Lots of hard work and talent with a small prize of £2000 and very little news coverage) and Britain’s Got Talent (Yes - there's some hard work and talent, but a lot of hype and news coverage, with a ridiculously high half a million pounds prize.)
People who know me well know I hate talent shows on TV, but I also realise many people do like them. I was reminded a while ago by my friend (and mother of one of my God daughters) That there is very little on the TV that you can watch as a family, and this is one of those things you can watch. Sad I know, but that’s the subject of a different blog!
So - I’m NOT getting at those who watch and enjoy it, and I'm NOT getting at the show.
What I hate is the culture that is rising up around it - the get famous quick/get rich quick without the hard work and training culture, where hard work and caring is not celebrated.
I see this culture getting into many of our churches (Not all - I’m not making a sweeping statement here). I am finding many young people who want to be worship leaders (A worthy role - but we don’t need THAT many!) but I’m not finding many who want to be kids leaders. I also see camps for kids with learning difficulties closing because it is almost impossible to find volunteers - and my heart breaks. It is so sad that we find it so hard to find new young leaders to take these roles as seriously being a worship leader.

A speaker at the HTB leadership conference summed it up well today: "We have a generation that won't do hard work in obscurity - we want all the glory - the microphone"
The other comment I made on Facebook was “Thank goodness the football season is over!” Football has been and still is used in amazing ways - the roots of many football clubs are Christian, and I see friends working hard to improve the lives of kids using football (Check these guys out: Africa Soccer Developments).
Again - it is what football has become that I dislike, not the game itself. The football heroes our kids follow are often not the sort of people you would want as a hero. The day after I put my status on facebook, three separate football ‘heroes’ were in trouble for saying or doing something hurtful and unkind. I want our kids to have better heroes than that - people who can model a life full of character. 
In short - I want kindness and goodness to be fashionable, not fame and not being rich. I want our kids to be full of God’s Character - not the sort of ‘character’ portrayed in our fame hungry society, where notoriety is an acceptable form of ‘fame’.
Yesterday I heard the story of a 7 year old, whose friend died of cancer last year. On his 7th birthday, he said he didn’t want any presents, but wanted people to give money to the local hospice. He raised £80. Now that’s a hero - this is something that needs celebrating!
Let’s hear it for the unsung heroes, the ones who never get a mention but carry on serving regardless. Not just those in our churches, but those who serve our communities tirelessly. These guys are the REAL celebrities!

So - I'm sorry if you are one of the people I irritated on Facebook - I hope this goes a little way to explain my comments (Which have now been removed!!)