Saturday, June 1, 2013

when the perfect baby you adore suddenly becomes a stranger

You would think it’s something that you — not to mention the midwives — would notice immediately. But it was two months before I was given the news that changed everything.
I was feeding my baby Xavier on New Year’s Eve in 2008 when the consultant rang. Terror pulsed through my veins as he told me: ‘Your son has Down syndrome.’
I’m not proud of my reaction that day, but I felt utter devastation. I panicked it would render him — and me — an outcast.
Less than a year before, I’d been a carefree party girl with a career as a novelist and living in London. Then came a very sobering unplanned pregnancy, discovered only days after splitting up with my boyfriend-of-sorts. And now another unexpected, far more terrifying mountain lay ahead of me.
Four-and-a-half years on, I can honestly say my initial fears were unwarranted. In fact, I think Xavier’s diagnosis made me confront my sudden motherhood head on.
I’m not saying I wouldn’t have been a good mother without it, but I was certainly jolted into action. It was as if I’d been given an electric shock that sent me headlong into parenthood in a way I’d never imagined.
I had always wanted children and taken for granted that it would happen one day. I’d also thought I would be married beforehand because I’d been brought up to believe in a secure family home. My parents had always been close until my dad died when I was 32.
At that point it looked like my future was mapped out along the same lines. I was living in Singapore with my partner of ten years and marriage was on the cards.
But we split after becoming distant — the pressure of living so far from home eventually took its toll — and I returned to London alone in 2006, aged 33, with a broken heart. I moved in with a friend and threw myself into partying and dating.
Within a year I was pregnant. To say it was a surprise would be an understatement.
Not only was I technically single — I’d been seeing someone for a couple of months, but he had stopped calling just before the blue lines appeared on the pregnancy test — but I’d also thought I was infertile.
An ovary had been removed when I was 15 because of a cyst. A gynaecologist who diagnosed a problem with the remaining ovary said it was unlikely I’d have children. I was on the Pill, but this meant I didn’t take it as regularly as before.
The father said he didn’t want to be involved. He was adamant — indeed, he has never wavered from this decision despite being invited to change his mind. So I was on my own from the outset.
I wasn’t ideal mother material; my idea of supermarket shopping was buying a case of wine and a tub of olives. I vowed I’d change for the sake of my child.
Despite the shock, it never occurred to me I wouldn’t go ahead with the pregnancy. I believed from the start my baby was meant to be and my friends and family all supported this.
Apart from morning sickness, the pregnancy passed smoothly. Tests were all fine, I ate healthily, did yoga and stayed home a lot, watching Dallas box sets.
On the whole, I was happy. I was apprehensive, but deep down I couldn’t wait to meet my baby.
At my 20-week scan, I discovered I was having a boy. The sonographer was certain because my son had his legs over his head and his ‘dangly bits’ on display. Show off; he was his mother’s son already.
It was then I left London to return home to North Devon to have my baby; despite the fact I was nearly 35, I needed my mummy!
My baby grew, I grew, even my feet grew (distressing as I did own some rather nice shoes). And I threw myself into nesting, cleaning cupboards and making a John Lewis baby list.
I went to an antenatal class where they scared me by talking about labour, so I didn’t go back. I picked a name and The Bump became Xavier Thomas Bleasdale.
In November 2008, I was taken by surprise when I went into labour. My waters didn’t break like they do on the telly; I just awoke with pains in the middle of the night.
When I woke Mum, she wailed: ‘We’re not ready; John Lewis haven’t delivered!’ But my baby was waiting for no one.
After fewer than ten hours of labour, Xavier was born. He was laid straight on my chest and when I looked at him, it was love at first sight.
The next few days were a lovely blur. Everyone congratulated me on having such a beautiful baby with his dark hair and almond eyes. He looked like my younger brother, Thom, 34.
I learned to breastfeed, I changed my first nappy, I bathed him. We were surrounded by cards, flowers, teddy bears and love.
We soon settled into a routine, taking long walks in the countryside or to the beach. It was idyllic.
We were a unit — not a conventional one, admittedly, but we were lucky to have each other. Everything seemed to be progressing normally.
Then, the week before Christmas I took Xavier to the clinic to be weighed and one of the health visitors was concerned he looked a bit jaundiced.
I took him to the GP, who recommended Xavier had tests. It was then discovered that he had an abnormal thyroid and liver function.
We traipsed to North Devon Hospital near Barnstaple on Boxing Day, but I had no idea what to expect. That’s when the consultant fired the first warning shot: ‘We need to test him for Down syndrome.’
The world stopped still. I couldn’t make sense of it; surely we would’ve known about that by now? I later learned abnormal thyroid and liver function can be a Down syndrome indicator.
The next few days were horrendous. My GP didn’t think that he could have Down syndrome. The health visitors were also surprised. And a midwife told me that there was no way Xavier could have Down syndrome because he breastfed, and babies with Down syndrome couldn’t do that.
Even the consultant seemed to backtrack from his initial warning: ‘Normally I’m 70 to 80 per cent sure but in Xavier’s case, I’m 50/50.’ I clutched at that hope tightly.
Five days later, all hope evaporated as I was told the tests had come back positive. I cried tears that never seemed to end.
And when I looked at Xavier, I thought he had become a stranger. I will never forgive myself for that.
There were moments when I studied him, trying to see the Down syndrome that had apparently always been there. But I couldn’t spot it; the ‘tell-tale’ almond eyes were so like my brother’s that it just looked like a  family resemblance.
The consultant later explained that this is why the diagnosis had come so late. Apart from the slanted eyes, Xavier didn’t have many of the physical pointers they looked for — such as a small nose and mouth, low birth weight, weak muscle tone and just one crease on the palm of the hand. It wasn’t just me who couldn’t see it.
Most children are diagnosed with Down syndrome immediately after birth, but although Xavier’s late diagnosis was unusual, it’s not unheard of: when I spoke to the Down Syndrome Association, they told me of one child who wasn’t diagnosed until the age of two.
I hadn’t been offered an amniocentesis because an initial blood test came back as low risk for Down syndrome. Had I discovered then what was likely to happen, in all honesty, I would have been highly likely to terminate.
I was a single mother, after all, and knew very little about the syndrome. Admitting that makes me feel physically sick because now I cannot imagine a life without Xavier.
Over the next few days there was a deluge of self-appointed experts. Each one armed with yet another new fact about my son, delivered with an encouraging smile, of course.
‘He’ll get special shoes.’
‘He’ll learn sign language.’
‘There’s a little girl with Down syndrome at the village school. She eats paint but that’s OK.’
On and on it went, and with each sentence I felt more defeated.
The internet proved even worse: we could look forward to all sorts of health problems, a long list of things he wouldn’t be able to do, and a fairly early death. I fell into a black hole. This was the blackest, deepest hole ever. I didn’t know how to climb out.
I was grieving for my child; I was angry, shattered, lost and helpless.
Meanwhile, Xavier was blissfully unaware. He slept, he ate, he smiled, and he even laughed.
Five days later, I told my midwife I couldn’t do it. She said simply: ‘You could always have Xavier adopted.’
Suddenly, I was jolted into remembering who I was, who my son was.
The visceral panic at the thought of losing him outweighed the anxiety of the previous few days. ‘I can’t cope with a day of not knowing where my son is!’ I gasped.
‘Then you can do it,’ she said and I knew then that I could. That evening as I fed Xavier, I looked into his eyes, and he looked into mine. ‘I do know you,’ I thought.
He was still the baby I’d carried for nine months, given birth to and nurtured. He hadn’t changed.
There and then I decided no matter what anyone said to me, I wouldn’t let them dictate his future. I would learn to trust my instincts rather than the scare stories. Most of all I would trust and be led by my son.
Already he’d taught me a lot about himself. He had breastfed well, he’d slept well and he had giggled a lot. Also he had already turned over from his tummy to his back, which was early for a baby to be doing that.
When Xavier was three months old, I braved the internet again and found Brainwave, a charity that works with children, whatever their condition or disability, to help them reach their full potential. They focus on what children can do, not what they can’t.
I took Xavier to the Bridgwater branch of the charity in Somerset when he was six months and it was like being wrapped in a cashmere blanket of reassurance.
To this day, they are one of my main sources of support.
They gave us a special programme of physical and cognitive therapy, which helped Xavier develop well.
He sat up at seven months, crawled at nine months and was walking at two years old — and didn’t need special shoes, by the way. By three, he was swimming without any armbands.
It’s hard and exhausting at times; a continual battle against outmoded preconceptions.
When strangers say things like: ‘They’re very loving, aren’t they?’ or ‘They’re special aren’t they?’ I want to scream at them: ‘Who are they?’ My son is not a ‘they’, no one is.
But I am very determined. Of course, I know Xavier will face extra hurdles, but we will tackle them together. I’m also certain he will have talents and it’s my job to nurture those.
Xavier is now four-and-a -half. He is a fantastically gorgeous little boy, who runs everywhere, enjoys swimming, loves Thomas The Tank Engine, is potty trained but refuses to dress himself if he can get someone else to do it.
He attends a mainstream pre-school in North Devon, where he’s popular with the ladies, and has a ‘treat them mean, keep them keen’ mentality. By this I mean he ignores them, so he has a string of four-year-old girls waiting on him hand and foot.
Although there is nothing Xavier can’t do, there are developmental differences: he is a late talker and does have slightly lower muscle tone. He also takes thyroid medication daily, although none of this stops him from living life like most children his age.
Every day, I learn more about him and myself. He inspires and educates me. He gave me the confidence to write my latest book, Happily Ever After, about my pregnancy and our first year together.
More importantly, he has shown me how to love and how to trust.
A year-and-a-half ago I met Iain, a local carpenter and the brother of a friend while out for birthday drinks. Instead of pushing him away like previous dates, I let him into our lives.
We married in February and he and Xavier have a wonderful relationship. Being able to give Xavier the family he deserves has been amazing.
I realise I have no real idea of what the future holds for Xavier. Only that I’ll never allow him to be written off, dehumanised, or labelled.
No, he is Xavier: a fun, unique, creative, difficult, sometimes rather stubborn little boy who makes my heart smile. I feel truly lucky that  I was somehow chosen to be  his mummy.
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