A Mother's Heartfelt Message To A World That Wrote Her Sons Off By Amanda Cable

                                  

This is a touching story of a mother whose boys were told their 'lives won't be worth living'. Although the story is long, I encourage you to read it, because in the end, you will be glad you did. Happy reading.

                                      

There's nothing I love more than spending an evening with my twin sons. Charlie and Archie are full of chatter, curiosity and mischief in the way that only 11-year-old boys can be.

A fortnight ago, my husband, Ray, and daughter, Ruby, were away for the weekend. Charlie and Archie suggested that the three of us went out for dinner. I hesitated, looking at the ironing pile.

'Come on, Mum! It'll be fun,' they chorused in unison. Three pizzas later we walked out of the restaurant, the boys as full of high spirits as usual.

                                         

As we left, a smartly dressed woman walked in, took one look at the boys and me, and paused to give Archie a patronising pat on the head. In a pitying tone, she said to me: 'You poor thing. Your life won't be worth living in a few years time.' Her companions fell quiet, and I felt my face turn scarlet.

Charlie and Archie have cerebral palsy, a physical disability caused by a lack of oxygen to the brain at birth. Handsome, witty and bright, they rely on walking frames to get around.

For that woman, the sight of me helping my sons down the steps with their frames was proof enough of a bleak future.

                                     

But she, and those like her who judge the physically disabled in one glance, couldn't be more wrong.

A whole new generation of children with cerebral palsy - my own included - are fighting back against such ignorance.

Take seven-year-old Holly Greenhow who, three months ago, joined the long queue of hopeful, doe-eyed children waiting for auditions to become a new model for Boden's clothing range next summer.

One look at her cheeky smile, and you can see why Boden couldn't resist picking her as the face of their brand.

But Holly has cerebral palsy just like my sons, albeit a more severe form. She is unable to walk and uses a wheelchair after being starved of oxygen during a traumatic birth. She cannot talk, but has just started to communicate through a computer operated by eye movements, similar to that used by Professor Stephen Hawking.

Holly is clearly gleeful about her moment in the spotlight. And her mother must be filled with pride at her little girl's success. Because no doubt, like me, she may once have been told that her baby would amount to nothing.

Charlie and Archie were born in December 2001. I was 32, and three years earlier had given birth to their healthy sister Ruby. We had been ecstatic with our bouncing first-born.

I was allowed to see them for just a few seconds before both babies were rushed to neo-natal intensive care

But things were different with the boys: their arrival was heralded with little joy. Delivered eight weeks early, the smallest of the two, Archie, was not breathing when he was born. It took five agonising minutes before the team of doctors managed to get him breathing with the assistance of a ventilator.

I was allowed to see them for just a few seconds before both babies were rushed to neo-natal intensive care. Desperately worried, I was kept in the maternity ward to recover. Hours later, at around 5am, the unit rang down to the maternity ward with a message.

While Charlie appeared to be slowly recovering from the trauma of the birth, Archie would not survive the night. Could I come and say goodbye to my son?

I ran upstairs to the ward and found a tiny baby engaged in a desperate battle. Archie weighed just four pounds - his hand was the size of my thumb nail, his leg the length of my little finger - and his chest heaved painfully with every gasp for air.

Archie continued to cling to life, fighting off countless infections as I sat despairingly by his side for the next three weeks. Charlie, too, although healthier, was kept in for observation.

As the days passed, and Charlie went from strength to strength, we dared to believe Archie, too, was improving. Then a scan revealed a massive bleed on his tiny brain.

I was alone when I received the news. Ray, a newspaper photographer, was at work. The young doctor who was charged with giving me the results looked terrified as she told me what they thought Archie's life would be like. He would be blind, deaf, dumb and unable to recognise his mum or dad. He would never speak, eat normally or laugh. Worse still, she added, the strain would surely wreck my marriage and leave Ruby the innocent victim of a broken home.

'We can arrange for him to be taken into full-time council care straight from hospital,' she added. 'You can go home and pick up your life where you left off.'

She made it sound so easy. And that moment has never left me; faced with the prospect of nursing such a broken being for the rest of my life, it would have been so easy to snap up her offer.

One nurse told me later that many mothers do just that if they discover that their premature baby has had a brain haemorrhage, which indicates possible cerebral palsy. A few weeks before I gave birth, one mother had simply walked out of the ward's double doors, never to be seen again. A hospital cleaner stayed behind after each shift to give the abandoned baby hugs.

The doctor waited for my reply as I stared at the scan. There was a huge shadow over my son's brain, a dark mass looming over him - and all of us.

When my resolve wobbled, or my courage failed, I just had to look at my two gutsy boys for inspiration

I thought of the Archie we had imagined while I was pregnant - the football player, the keen swimmer, the school sports captain. I thought of the child we might have instead - a boy in a wheelchair, watching forlornly from the touchline as other children played.

Without a word, I walked out of the hospital and away from my baby as swiftly as I could. I took the train home, tears streaming silently down my face.

The nurses must have believed that, like other mothers before me, I had simply deserted him. Far from it. However tiny he was, I couldn't bear for my boy to see me so broken, so upset.

I gave myself a night. And the next morning I returned to the hospital, dressed smartly with full make-up, ready for the moment when I could hold Archie in my arms. My husband was equally insistent that we would be the ones who cared for Archie, no matter what it entailed.

On Christmas Day 2001, four weeks after their traumatic birth, we brought Charlie and Archie home for the first time. Unlike after Ruby's arrival, there were no cards of congratulation to greet them. We quickly realised that when a birth goes wrong, many so-called friends turn away for good. We turned inwards, relying only on each other and those closest to us. We were determined to do the right thing by our son.

Confounding all the medical expectations, Archie soon began to astonish us. I hung a mobile over his cot, and at six weeks old, I watched his eyes intently following the revolving figures. Could a child pronounced so severely brain-damaged really show such early promise?

More was to come. At eight months, Archie reached out to his twin brother and said, in a sweet baby voice: 'Arlie.' Although he couldn't crawl or roll, soon entire sentences began to tumble from his mouth. At last, sunlight seemed to be breaking through the all-pervasive gloom.

Then, when the boys were 15 months old, we received another blow. Charlie, doctors had noticed, hadn't been kicking his legs as he should. A scan of his brain revealed that, although his symptoms were milder than Archie's, he too had cerebral palsy.

They walked with painful stiff legs on the touchlines as other boys played football

I received this news alone. My husband was in Iraq, covering the Gulf War as a photographer. He wasn't even able to speak on the phone. It was, perhaps, the lowest I have ever been. So desolate was I that I couldn't even bear to ring my family to give them the news. How do you tell friends and relatives that two lives, not one, have been effectively ruined?

But my salvation came from the two little souls who doctors were telling me were lost. Charlie and Archie seemed to sense that their Mummy needed help. All of a sudden, they developed into two of the most robust little babies I had ever seen - cerebral palsy or not.

Painful leg spasms were met with smiles, not tears. Therapists turned up to the house only to be mimicked mercilessly by my boys when they turned their backs.

Not only this, but by age four, they'd learned to read - as well as being able to taunt their big sister with all the skill of two finely-honed verbal assassins. When my resolve wobbled, or my courage failed, I just had to look at my two gutsy boys for inspiration. But however wonderfully their characters were emerging, huge physical challenges lay ahead.

They learned to sit up when other babies were crawling. They stood when other toddlers were running. They walked with painful stiff legs on the touchlines as other boys played football.

I still believed, however, that they could cope with a mainstream education, that they would be welcomed into a 'normal' school. How naïve I was.

When I went to visit the nearest primary school - a single-storey building just at the end of our road in Blackheath, South-East London - the headmistress showed me around with what can only be described as spectacular rudeness, before telling me that I was 'deluded' in thinking my sons would cope with mainstream school.

The next school, a high-achieving primary near our home, was only fractionally more welcoming. The headmistress told me the boys could have just one year at the school before they'd have to move on.

'I can't alter my classroom layout just because two children can't walk properly.'

The third headmistress didn't even bother to show me around her school. Instead, I was greeted by a ten-year-old pupil who had been tasked with giving me a tour and answering my questions.

Finally, I discovered the perfect place for Charlie and Archie - ironically, a place I would probably never have considered sending them to if everything had been 'normal'. A primary school with a high intake of immigrant children, it had poor academic results but a caring ethos.

A friend invited us to the christening of her baby. When we rang to accept, she said we could only come if we left our sons at home. I have never spoken to her again

There, the boys both thrived, but I had learned the most painful lesson of all - that children who aren't perfect are simply not always welcome.

Not just by strangers. Take the friend who invited us to the christening of her baby. When we rang to accept, she said we could only come if we left our sons at home. I have never spoken to her again.

We joined a variety of children's clubs to make friends, but one mother handed party invitations to every single child in the music class save for mine, saying she was 'sure I'd understand'.

Charlie and Archie have taught me themselves how to react to these situations. If people point at Archie, whose walking is more severely affected by his condition, he says 'hello' and starts a conversation. He tells them happily about cerebral palsy, and how all it means is that his legs don't work - his mind is just fine.

In the Seventies and early Eighties, children with cerebral palsy were unceremoniously dumped into special schools, no matter what their academic ability. There were few prospects and even fewer aspirations.

Today, thankfully, children with cerebral palsy have more hope. More than this, they are becoming accomplished individuals. Two years ago, a 12-year-old boy with cerebral palsy made a speech at his parents' anniversary party. It began thus: 'One thing I can't stand..  let me re-phrase that. One thing is, I CAN'T stand.'

That boy was Jack Carroll, and the hilarious video of his first ever stand-up routine became YouTube gold, taking him to the finals of this year's Britain’s Got Talent, where he reduced a nation to tears (of mirth, not pity).

Jack's charm is that he holds not an ounce of self-pity despite his condition. Courageous, certainly. But more importantly, he has embraced his condition as part of who he is.

As well as Jack and Boden model Holly Greenhow, Isabella Neville, the daughter of the former Manchester United footballer Phil, is also a beacon of hope for children with cerebral palsy. Told she would never walk, the nine-year-old now plays sport, swims and dreams of one day representing her country in the Paralympics.

And what of my own bright-eyed boys? They started mainstream secondary school recently and, although they tease me by claiming they want to play football for Chelsea or beat Usain Bolt at the sprint, they could certainly make brilliant barristers or doctors.

Every few years, the boys have major operations on their legs to try to improve their mobility, but never complain about the pain or discomfort. They'll never get better, but they are equally aware that, unlike those with degenerative conditions such as muscular dystrophy or multiple sclerosis, they won't get worse.

In simple terms, the fact that they have cerebral palsy has changed all of us for the better. Ray and I no longer fret about inconsequential things, about material goods or keeping up with the neighbours.

Ruby, now 15, is her brothers' biggest ally. A kind and popular girl, she is surrounded by a coterie of teenage friends who adore the boys as much as she does.

Meanwhile, Charlie and Archie continue, without a shred of self-pity, to live their lives to the full.

Archie presented a film about his life last year which showed the reality of life with a disability.

It was shown on BBC2 and was recently nominated for a BAFTA. Charlie, ever the family joker, claims that cerebral palsy helps him jump queues at Disneyland (in fact, we are yet to go) and earns him more presents than his friends at Christmas.

It is not all laughs, of course. The boys' best friend Tom - another little lad with cerebral palsy, who they got to know at school - died aged ten after a tragic hospital blunder. Acutely aware of this, my sons tell me every day when I leave them at school that they love me.

When I look at them, I see spirit and resilience - not disability. They go to school to fight a different daily battle from all the other children. Each afternoon, they return victorious and happy.

I’ve realised over the years that the strongest love and pride shines not in the eyes of mums cheering their healthy sons on the side of the rugby pitch, but in the eyes of mothers I see cuddling and willing their little ones on, each time we go to the children's hospital.

So let me return to the woman who walked into that restaurant last month and declared that my life soon wouldn't be worth living.

On behalf of Jack Carroll, Holly Greenhow, Charlie, Archie and thousands more children with cerebral palsy, I would say it will be a life enriched in myriad ways she could never imagine.