And you...what would you do??

'I Begged Dad To Kill My Son'
Claire BatesSky News OnlineUpdated:09:23, Thursday April 24, 2008

James Hughes' story has re-opened the emotive issue of parents who care for severely disabled children and the pressures it puts on their families.
Here, Sky producer Claire Bates, tells her own personal story about looking after Noah - her five-year-old son who has cerebral palsy.

I can remember it so clearly.
I was sat by the fire at my parents' home in the shadow of the happy, smiling family photos on the mantelpiece.
Noah was still crying.
I uncurled myself from the tight ball I'd made on the hearth rug, looked up slowly at my Dad....and begged him to kill my son.
It would be quite simple, I said. Use a pillow.
Believe me. Whatever Heather Wardle may've done I know how she felt.
And don't you dare judge her - any of you.
Until you have reached the utter depths of genuinely believing that death would be preferable for the person you love more than anything in the world, please don't insult her memory by pretending to know.
Don't call for a public inquiry, don't ask why "the social" didn't do more, don't raise critical eyebrows and think ridiculous naive thoughts like "how could she really have loved her son?". Just let Heather Wardle be.
Of course none of us yet knows what happened to the mother-of-four and her 22-year-old disabled son James - we may never know.
But instantly, people are guessing, surmising, assuming that she could no longer cope with the burden and may have harmed James and herself.
Our son Noah Elliot Bates was born at 1908 on Boxing Day 2002.
It had been a perfect pregnancy. I adored my bump, I'd had no sickness and textbook scans. Paul and I knew we were having a boy and named him Noah .
Daddy chatted to his unborn boy every night. We dreamed he'd walk out on the Lords outfield as England cricket captain, after, that is, he'd been to Oxford where he'd got a First in English.
He'd marry a lovely girl and live in a lovely house, with lovely children and a lovely dog. Lovely.
My waters broke Christmas Day night - the day Noah was due - and 25 hours later he made his way into the world. Silently.
I asked the midwife over and over why he wasn't crying. I remember pleading to know what was happening. I hadn't even seen his tiny, damp face. He'd gone straight out of the door.
Two hours later we were reunited, of sorts. He lay in an incubator in the special care unit hooked to wires, tubes and bleeping machines.
Noah had, for some as yet unexplained reason, simply not taken his first breath.
The starvation of oxygen had caused severe damage to his brain.
Brain damaged. Mentally handicapped. Spastic. Call it whatever PC or un-PC name you will. It all means the same: I am the mother of child with cerebral palsy who will need me to feed him and change his nappy for the rest of his and my life.
It is a long story and I insult the patience, tenacity, determination, strength and love of my husband, my family and my friends to reduce our utterly impossible journey to a few lines, but Noah is now five and attending a wonderful school near our home in Salisbury, Wiltshire.
He will never walk, talk, sit unaided, raise his hands, touch anything, taste anything - or know who his Mummy is.
As well as his near total brain damage, he has epilepsy, is quadriplegic and almost certainly blind. He cannot swallow so is fed overnight by a pump through a 'button' in his stomach.
His two-year-old brother calls it his bionic belly button.
You see, it's all so normal to him - and now us - but the darkest days of total despair, coming to terms with his absolutely basic of existences and the damn hard physical and mental toll that it takes on both him, and us, are the most painful moments I will ever know.
I'm a tough old bird. I say feisty, some say bossy!

As a journalist, I interviewed prime ministers, murderers, difficult movie stars. I'd happily strike up a conversation with Bill Clinton if he walked into a room. I'd done 24-hour shifts, come through a painful divorce and yet I couldn't deal with this.
The first ten months were the most gruelling, difficult, emotional, painful, tearful and exhausting of my life.
Because the lack of oxygen had also left Noah with epilepsy, his brain was constantly 'wired'. He never slept for more than two hours in any 24, so my husband Paul and I operated a four hours on, four hours off shift system, day and night.
At five years old, he's never slept through the night.
As a baby, he never smiled - he's still never smiled - and never opened his eyes without crying. He would sleep, then scream, scream and scream for six, seven, eight hours until he fell back asleep. Then it would all start again.
It was three months into this shattering routine that I found myself at my parents' home, begging my father to put a pillow over Noah's face and end it.
Partly for me, mostly for him.
He was fitting almost every waking minute and because he was screaming in confusion from the seizures, we assumed he was screaming because he was in continual pain.
As a mother, I couldn't bear that. We often say we can't bear things - like leg waxing or Marmite. This, I couldn't bear. I physically couldn't go on. When I cried, it didn't sound like me. I was wailing.
I wanted to end his suffering. It was at that moment, I understood how a Mummy truly loves their child. But equally, I knew I couldn't do it. I knew I couldn't bear life without the child I loved so completely.
Then of course, I hated myself for not being strong enough to end his pain, and for being too selfish for wanting him around. There's not a book in the world, not a doctor, not an expert, who can explain the torment of emotion that goes with discovering you have a child with the most complex of mental and physical handicaps.
I'll never forget my Dad's face. I can't imagine how it must feel to have your child ask you to do something so, so awful. He looked haunted, probably feeling the same as me - the sheer desperation of being unable to erase the pain from the thing you love most.
If Heather Wardle did end hers and her son's lives I kind of admire her.
Don't flood Sky News Online with complaining texts unless for even just 24 hours you've been in mine or her shoes.
I couldn't end Noah's life because I wasn't strong enough to do what I genuinely, totally, 100 per cent thought was right for him. At the time, his life was completely intolerably painful, confusing and without any quality whatsoever.
He still has minimal quality of life and when he's ill with a simple cough or cold, it quickly becomes pneumonia and what little 'contentment' he has been experiencing (we never say 'happiness') is quickly cancelled out.
But you know what, I couldn't end his life because I love him so desperately and knew even when he was one minute old I couldn't spend any part of my life without him. Selfish huh?
Those precious few moments when we think he is free from pain, and maybe 'enjoying' the feel of the wind on his cheeks mean everything to us.
What people forget when they look at Noah and say how sorry they are, is that we're not. We've got a son we love and however different his life is - it is his life and a valid one.
Perhaps Heather Wardle was stronger than me. Perhaps she wasn't.
Perhaps she should've been given more help - all carers should. It is criminal how little successive governments recognise the loving commitment of mothers and fathers in these situations - and take the care that saves their administrations millions and millions, utterly for granted.
Perhaps a lot of things should've or could've been done differently in her life.
But please don't judge her.