Thursday, 23 October 2014

'I wish I'd aborted the son I've spent 47 years caring for' - Story of a suffering mother.

Role reversal: Roy and Gillian are reaching an age where their son should be looking after them 

The pilot had been very patient but, after an hour of the plane waiting on the Tarmac at Heathrow, with my son Stephen refusing to get up off the floor, sit in his seat and buckle up, our bags were removed from the hold and he was carried off the flight, my husband Roy and I walking, hot-cheeked and humiliated, behind. These are the words of a distressed woman whose son was born with Down's syndrome.

Our family holiday to Greece would not be going ahead, after all.
And no, Stephen was not an obstreperous toddler when this happened. He was 45 years old. This embarrassing scene happened two years ago and the episode is just one of the many challenges we have faced since Stephen, our second child, was born with Down's Syndrome.
So difficult has it been that I can honestly say I wish he hadn't been born.

I know this will shock many: this is my son, whom I've loved, nurtured and defended for nearly half a century, but if I could go back in time, I would abort him in an instant. I'm now 69 and Roy is 70, and we'll celebrate our golden wedding anniversary next month.

We were childhood sweethearts and married when I was just 19 and he was 20. I sailed through my first pregnancy with Andrew a year later, and both of us were really looking forward to a second baby to complete our family.

Will never grow up: Stephen will always need constant care

'He's a mongol, isn't he?' I gasped to my mother. It sounds shocking now but that was how we used to describe people with Down's Syndrome in those days.

She told me she was sure he wasn't, and it seemed everyone else was blind to what I saw so clearly. None of the doctors and health visitors even mentioned it, so for seven months I blundered on, trying to convince myself that my baby was 'normal'.

However, when Stephen became ill that summer and I took him to hospital, I overheard a paediatrician refer to him as a 'mongol baby'. I had been right all along.

In that instant, my world came crashing down around me.

Perhaps you'd expect me to say that, over time, I grew to accept my son's disability. That now, looking back on that day 47 years later, none of us could imagine life without him, and that I'm grateful I was never given the option to abort.That was the day normal life ended for Roy, Andrew and me.

However, you'd be wrong. Because, while I do love my son, and am fiercely protective of him, I know our lives would have been happier and far less complicated if he had never been born. I do wish I'd had an abortion. I wish it every day.

If he had not been born, I'd have probably gone on to have another baby, we would have had a normal family life and Andrew would have the comfort, rather than the responsibility, of a sibling, after we're gone.


Needed support: As a child, Stephen stayed at a specialist hospital in Ramsgate, Kent, when his mother couldn't copeStressed: Gillian believes the family would have been happier if she had aborted Stephen and gone on to have another baby 

Although Roy and I have always had a solid marriage, we were both deeply unhappy. Our unhappiness followed us everywhere, like an unspoken frosty presence in the room.

Once Stephen moved to the hospital I saw him as often as I could, while still meeting the needs of the rest of my family.

It turned out the reason Stephen had cried so much over those three days was that he had a hereditary condition, unconnected to Down's, called haemolytic anaemia, which meant his red blood cells were being killed off quicker than his bone marrow could produce them, leaving him drained and exhausted.

One day, Stephen's doctor sat us down and told us that Stephen needed an operation to remove his spleen. Without it, he said, he would 'go to sleep and never wake up'. Those were his exact words.

Looking back, I believe the doctor was guiding us towards allowing our son to pass away naturally, but we were not much more than children ourselves, in our mid-20s, and didn't understand then what he was trying to do for us.

I wish we had - it would have spared us all a great deal of pain. Instead he had the operation and spent five weeks at Great Ormond Street Hospital recovering, with me at his bedside as often as possible.
Delayed milestones: Stephen didn't walk until he was five
He didn't walk till he was five.

I didn't drive, so would take him into Canterbury on the bus to do the shopping. However, more often than not, he would refuse to get off the bus and sit in the middle of the aisle where people would have to climb over him.His weekend visits home became harder to bear as he grew older.

So we'd have to wait for the bus to turn around and go back past our house where I'd have to get Andrew to help me physically remove Stephen from the bus.

It made me very reluctant to leave the house, but even at home he would use sit-down protests as a way of refusing to go to bed, get dressed, get in the bath and even eat.

But then, when Stephen was 11, he came back to live with us full-time for 18 months.

They were the longest 18 months of our lives. I barely left the house because I couldn't take Stephen with me, nor did I dare risk leaving him home alone.

He was still incontinent, barely able to communicate, and getting bigger, which made moving him when he staged one of his sit-downs even more difficult.

Again my mental health began to suffer. So it came as a huge relief when, aged 13, a place came up for him at a boarding school for children with learning difficulties in Folkestone. Since leaving school he has lived in about five different local authority houses, visiting us every other weekend and for holidays.

He now lives in sheltered accommodation in Kent with two women who also have Down's, and where they have 24-hour support from carers.

When we go to pick him up at the weekends, we have no idea what will happen. Sometimes he refuses to come with us, sometimes he insists on being taken back to the home as soon as he's had a biscuit and a drink of water or, if we're lucky, he will be happy to stay.

He came home last Christmas Eve and we all went to a neighbour's party, which he enjoyed.

The following morning he opened his presents and then insisted I take him home immediately.

When we take Stephen shopping, or to restaurants, he stages sit-down strikes, just as he did on the aeroplane, and will refuse to move for up to three hours.


He loved the rides - his favourite was Dumbo the Flying Elephant - although poor Roy had to accompany him on every single one.Don't misunderstand me, we have had some lovely times with Stephen. Like when we took him to Disney World in Florida ten years ago.

At times like these he's brought a magical, childlike quality to our lives, but I'd trade every single one in a heartbeat for the joy of seeing him settled with a wife and children, or established in a career.

I'm sure I will mourn missing out on seeing him achieve these milestones until the day I die.

And that brings me to my other big worry. I feel pretty sure now that Stephen will outlive his father and me and I do not know how he will cope after we're gone.

He just won't have the mental capability to understand why we're not turning up to collect him any more. And, once we're gone, who will keep him safe?

When he lived in his first local authority home after leaving boarding school aged 18, we'd notice bruises on his arms when he visited at the weekends.

We were convinced he was being physically abused - he said that one of his carers had pushed him into a swimming pool - and we fought very hard to get him moved out of that home.

Only a parent of disabled children can truly understand those fears that will haunt you beyond the grave.

Of course, although we've never said it out loud, I think Andrew is very much aware he will be ultimately responsible for Stephen.

Something like that is never voiced, it's just an automatic responsibility.

And I feel terribly guilty about that.

He lives hundreds of miles away in Cornwall and is about to become a father for the first time, aged 49.

His partner is 38 and, thankfully, they were at no greater risk than anyone else of having a Down's baby.
Years ago, I was so worried about history repeating itself that Andrew, Roy and I went for genetic counselling at Guy's Hospital in London and found Stephen was just 'bad luck'.

I say 'bad luck', but that's the greatest understatement that anyone can imagine.

And so I appeal to every mother-to-be out there, facing the knowledge that they may bring a child like Stephen into this world. Read my story and do what is right for you and your family.

Source: Dailymail.

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