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Our rollercoaster of love for Noah
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| That's my boy - Claire Bates with Noah, who was born with cerebral palsy. The five-year-old responds to to smell, touch and sound but suffers from epilepsy and is quadriplegic. Submitted pictures |
As far as Joe Bates is concerned, Noah is the man.
His big brother may not be able to talk or walk, but he has a "bionic" belly button - and how many big brothers have those?
"He accepts Noah totally for who he is," declared their mother, Claire. "Joe does not think there is anything wrong with Noah. He loves him - we all love him so much."
But mixed in with that love has been pain, guilt, fear and a complete sense of helplessness. Joe may not see his brother as different, but his parents live it.
"Noah was born with cerebral palsy - brain damage - and as a result of that he developed epilepsy. He is also quadriplegic, so all his movements are involuntary," explained Claire.
"We also assume Noah is blind, but we can't be sure. His eyes appear to work, but we don't think images are coming through. On top of this, he cannot chew or swallow, so has to be fed via a peg' into his stomach.
"This peg' looks like a second belly button - that's why Joe calls it bionic'."
Claire, her husband, Paul, five-year-old Noah, Joe, two, Jimmy, 18 weeks, and their dog, Jester, live in Tidworth, Wiltshire. In the 1990s Claire - Colchester born-and-bred and still proud of her roots - worked as a reporter for Essex County Newspapers. Her father, Peter Hills, was editor of the Essex County Standard.
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| 'He never stopped crying. I was crying. I was distraught. I wanted to stop his pain' - Claire Bates on the lowest ebb of her life with son Noah. |
Paul is in the Army (the 1st Royal Horse Artillery and is now second-in-command); by the time he and Claire married, they were living at the regiment's garrison in Tidworth and life was good. Very good.
Then Noah was born on Boxing Day, 2002. That day, their world turned upside-down.
"There had been no problems during my pregnancy and, like all couples, we had so many aspirations for our first child," recalled Claire.
"We talked about how he would excel at all sports and play for England at cricket and football, how he would be intelligent and have a wonderful life. Then, after he was born, after he didn't take that first breath, we realised those had been our aspirations.
"Now we just want a day where Noah is as physically comfortable as possible."
Noah responds to smell, touch and sound, but is incapable of doing anything which we take for granted. He needs 24/7 care. For life.
"In the kitchen we have a whiteboard where we record the number of unbroken nights sleep we have had since Noah was born," said Claire.
"It started off as a bit of a joke - but it makes interesting reading. In five years since Noah was born I have had just 21 nights of sleeping straight through."
But this is nothing compared to the emotional trauma. A few days ago, Claire, now a freelance journalist, shared that trauma with people around the world via Sky News and the Sky website.
The reason was Heather Wardle, found dead just before the body of her 22-year-old son, James, had been discovered hidden in a suitcase in their house in Redditch.
James had the mental age of an 18-month-old baby. Many are horrified Ms Wardle could have killed her son "simply" because the pressure of looking after him had become too much.
When Claire heard of this reaction, she was incensed. Don't you dare condemn her, she wrote, don't you dare. You have not been there. You just don't know.
"I have been there - I am there," she stressed.
"That first year was dreadful. When Noah was nine months old we still did not know the extent of his disability.
"Then, in August, he was given an MRI scan at Great Ormand Street (Children's Hospital). Paul was on his first tour in Iraq. I was on my own when I got the phone call from the hospital.
"I was told he had total brain damage. Even today, I cannot remember how I felt when I heard those words. It just didn't sink in because I never expected I would have to face such a thing."
Claire had been facing many things during those nine months.
"Until the hospital got the right cocktail of drugs to control his epilepsy, he was suffering so much - and he cried. He never stopped crying. I was crying. I was distraught. I wanted to stop his pain," she said.
At her lowest ebb, Claire asked her father to help her kill Noah. He was three months old.
guilt
"How could I say those words? How could I want to kill my son? I love my son - I have always loved my son. But I was about as low as you can feel," she revealed.
"I felt utterly broken, useless and weak - but I believed it was the right thing to do for him. I still believe that.
"Had I done it then, it would have been releasing him from utter hell."
The drugs Noah takes today help, but he has no quality of life.
"His life would be better ended," she insisted. "That is the truth. But it is not down to us to end it. It is down to us to make his life as tolerable as possible. That is the least we can do."
But she and Paul have to live with the guilt - guilt for not freeing Noah from this life and guilt for thinking about it.
"But it is fine to feel like this - we are human. This is not wrong."
After Claire's story hit the Sky website, the e-mails sent to the web address ran into thousands.
Claire was overwhelmed by the messages of support and the stories from the carers of children, siblings and parents who have felt overwhelmed and frightened, not only by NHS and social services red tape - which is, according to Claire, "appalling" - but by their own "human" thoughts.
From the messages selected for the website, Claire's words had made it OK to voice those thoughts.
At the end of it all, Claire feels she is lucky - lucky to have Paul, her parents and her boys. But it wasn't easy deciding to have more children, because it has never been determined whether or not Noah's condition is genetic. They were taking a big chance.
"It was scary making that decision to have more children - but we wanted a family, so we went for it," she said. "When Joe came along, it was wonderful."
But while Joe loves Noah, Claire and Paul know he will never be able to relate to his big brother. Joe needed a brother or a sister. Eighteen weeks ago, along came Jimmy.
"I have a great relationship with my sister, Sarah, and want Joe to have that, too," she pointed out. Even better, Paul wants a big family. At least four.
"But this life with Noah is still not easy - and there are times when I still think this isn't fair," said Claire.
"We are restricted - if we plan a day at a theme park and Noah has a fit, we can't go and his brothers will have to accept that.
"But he gives us joy. Truly."
10:06am Wednesday 30th April 2008
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