Two years ago, the thought of having a disabled child was my worst nightmare. Ever since my teens, I have had a powerful, irrational phobia about disability. Despite being a keen Girl Guide, I always opted to visit the elderly rather than people with disabilities. At sixth-form college I signed up for a hated course of judo lessons rather than community service, as I feared that might mean having contact with "handicapped" people. I have no idea why I was so frightened: I was an extremely shy child and maybe it was simply a fear of something different that got out of hand. Little did I know that one day I'd find myself unable to run away.
After I'd gone through my 30s in a way that would have made Bridget Jones proud, I met Josh. He was 40 and I was 41. We got married on my 42nd birthday and, despite having known each other for less than a year, started trying for a baby on our honeymoon. I only half-expected something to happen, but within four months I was pregnant. At the 12-week scan, the hospital offered me a nuchal fold test, which screens for Down's syndrome by measuring the translucent space in the tissue at the back of your baby's neck. I cheerfully agreed, on the basis that things like that put your mind at rest.
It sounds naive, but it just didn't occur to me that there might be anything wrong. I thought getting pregnant was the hard bit. After the scan, however, the sonographer announced that our baby had a one-in-four chance of having Down's. I was leaning on a hot-air vent as she spoke and my hand was burning, but I couldn't move. I had to get out of the room, but the door seemed to have vanished. Josh steered me to the restaurant across the road and we sat there in silence while I wondered how much other bad news had been digested in this jolly place.
After an appalling few days, we rallied and reasoned that the test meant that our baby had a three-in-four chance of not having Down's. It would be fine, I told myself. It had to be.
The only way to find out for sure was by amniocentesis, which involves removing amniotic fluid from the womb. The test can cause miscarriage, however, and now I was pregnant it seemed crazy to risk things to satisfy our curiosity. What made it even more pointless was that we had ruled out termination, believing that having started this new life, it was our responsibility to nurture it. Even so, I knew that Down's babies were more likely to miscarry and in my lowest moments half-hoped this would happen if ours was affected.
During the pregnancy I lurched from optimism to despair: optimism that the child, who at 20 weeks we discovered to be a boy, wouldn't have Down's, and despair that he would. There was no scenario in which he had Down's and all was well. From time to time, I read about parents of children with Down's who were blissfully happy. But they were all sandal-wearing types who loved humanity and crowed about having had their beliefs challenged. I didn't want my beliefs challenged. Anyway, what could those parents say? That they were sorry their child had ever been born?
When we'd fantasised about parenthood we talked about lovely holidays we'd have together, what kind of progressive school our child might go to, whether he'd be musical or sporty, what he'd do for a living and whether we'd be around long enough to meet our grandchildren. We didn't know what having a child with Down's would entail, but I had nebulous visions of benefits, hospital appointments and bitter, unending disappointment.
My labour was textbook - several hours of pushing and lots of gas and air before 7lb 2oz Paddy came wriggling into the world. Before I had even had a good look at him, I asked the midwife if he had Down's. She said she couldn't tell, but Josh and I looked at the gap between his first and second toes - the "sandal gap" often associated with Down's - and knew. The paediatrician agreed and after a blood test it was confirmed that our first and possibly only child had Down's syndrome.
I thought I would die. The pain was so intense that it was only by hurting myself that I could block it out. I would sit in the hospital pinching myself, trying to wake up from this nightmare. I'd dutifully cuddle Paddy but search his face constantly, looking for a clue. Other mothers say that they feel their newborn infants are strangers, but mine was worse. He was a Down's diagnosis with a baby attached. Later, when strangers stopped to coo into the buggy I had to restrain myself from saying: "Don't look - he's got Down's." I loathed the emails that came saying that we would be wonderful parents to this "special" child. How did they know?
To begin with we could sometimes suspend belief: I'd never had a baby before, so had no point of reference. Paddy took a while to learn to feed, but was a great sleeper. He smiled early but sat up late. He had no specific health problems - none of the Down's Big, Bad Four of heart, thyroid, ears and eyes - but was a bit too passive. The big surprise was that he was beautiful. I had been terrified of having a child I didn't want to look at. But Paddy has a wide smile, crinkly blue eyes and corn-coloured hair: he is adorable.
Yet I couldn't - or wouldn't - let go of my grief and sense of failure. I hadn't especially wanted Paddy to go to Oxbridge and become a brain surgeon, but I did want him to have fun at school, make friends, choose hobbies, have a job he enjoyed, live in his own home and fall in love. When you have a child with Down's, every one of those ambitions seems destroyed the moment you get the diagnosis.
Two things helped build the future up again. First came the recognition that there are any number of people who were born "perfect" but are now living in squalor, addicted to drugs or alcohol, estranged from their families and probably heading for early death. None of us knows what the future holds, and being physically sound to begin with isn't the only thing that matters. Then came the discovery that having Down's is not a tragedy. It's just that there are so few people with Down's that we don't know anything about it, never see it and are frightened of it. Paddy sees a speech therapist every week, and the first time I met her, she said that with the right intervention she expected every child in her therapy groups to be able to drive, work and hold down relationships. I had never realised that such things were possible.
Even so, it took a year, several visits to a psychiatrist and a course of antidepressants to realise all this. I felt judged by strangers for having a baby at 43. I was plagued by guilt that I wasn't practising Paddy's physio and speech therapy enough with him. When he cried I screamed back that I didn't even want him - surely the least he could do was behave? I told my husband that I wanted Paddy adopted and that we'd have to go and live in New Zealand so that no one would know and condemn us. He agreed as he endlessly stroked my hair and told me all would be well.
And gradually it was. Paddy is now two and we adore him. We used to play a game when he was tiny: what would you give up to make him have the right number of chromosomes? We agreed we'd sell the house: that was a no-brainer. But we also said we'd have limbs and organs removed, commit crimes - do anything to make him right. Now I'm not so sure.
The great thing about being too frightened to have aspirations for your child is that they can't disappoint you. Rather than lamenting that Paddy is late with some things, I rejoice that he's ahead on others and marvel at how diligently and intently he learns. He is not a diagnosis. He is a person who loves sausages and hates Rice Krispies. He dances to the stereo and drives us mad changing it between CD and tape all the time. His first word was "dog", and he now says it to get back into my good books when he's been naughty. He likes licking train windows, for some reason best known to himself. He waves at embarrassed teenage lads on buses until they wave back. He likes to sing Row, Row, Row Your Boat and do the actions. He invents games and gets Josh and me to join in.
So far I haven't been able to get pregnant again, and now that I'm 45 I have to admit it's not looking likely. Knowing the fear I had of disability, and how close I came to having amniocentesis, it makes my blood run cold to think that if I had had the test and miscarried, we might now be childless. More importantly, we would not have Paddy. And I truly believe that if my precious boy did not exist, our world, and probably the world at large, would be a poorer place.
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