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A disabling fear

Annie Rey

Four years ago, the thought of a disabled child was Annie Rey's worst nightmare. Then her son was diagnosed with Down's syndrome and
she found herself in spiritual crisis.


I grew up with a powerful phobia of disability. I was deeply disturbed by images on television of people who didn't speak clearly or looked different. At sixth-form college I signed up for a hated course of judo lessons rather than risk trying community service, as I'd heard that the latter might mean contact with 'the handicapped'. Even in church, I avoided those with learning difficulties. I told myself it was because I didn't want them to feel patronized, but actually it was because I was terrified. I'm not sure why - like many phobias it was completely irrational. Unlike many phobias, it has not remained unchallenged.

Having been married and divorced in my 20s, I spent my 30s fruitlessly hoping to meet a new Mr Right. Several times I thought I'd found him. Each time I marveled at how clever God was in bringing us together, only to wonder, a few months later, what all that had been about. Eventually things came good, and Josh and I married on my 42nd birthday. I wasn't especially broody, but we thought it would be lovely to have a baby and so were delighted when I quickly became pregnant. At the 12-week scan, the hospital offered me a nuchal translucency test, which screens for Down's syndrome by measuring the translucent space in the tissue at the back of the baby's neck. I cheerfully agreed. It didn't occur to me that there might be anything wrong, having been irritatingly average my whole life. So when the sonographer said that our baby had a one-in-four chance of having Down's I was shocked beyond belief. I was leaning on a hot-air vent as she spoke and my hand was burning but I couldn't move. Josh steered me to the cafe across the road and we sat there cradling our lattes, all joy and anticipation utterly destroyed.

Even though at that stage the odds were in our favour, a large part of me 'knew' our baby would have Down's. However for some reason I still can't fathom, I didn't use this 'knowledge' to any good effect. I didn't go on retreat to commune with my creator, nor did I talk to wise old nuns about the problem of pain. I didn't even manage to read a book on the subject. Instead I spent most of my time lying on the sofa reading middlebrow novels and swigging straight from the Gaviscon bottle to assuage my 24/7 morning sickness. I also spent quite a lot of time feeling guilty - the fact that my prayer life had been patchy for years and I wasn't on a single rota at church weighed heavily on me. Although in the abstract I believed church to be a good thing, I secretly shared CS Lewis' dread of 'the bells, the crowds, the umbrellas, the notices, the bustle, the perpetual arranging and organising.' Now it felt as though I had omitted to take my spiritual folic acid and was reaping the consequences.

Featuredowns2.jpgHad we wanted a definite diagnosis we could have had amniocentesis which involves removing and analysing amniotic fluid. It carries a relatively high risk of miscarriage and it seemed crazy to endanger our child's life to satisfy our curiosity. It would have been particularly pointless since we had ruled out termination, believing that having started this new life, it was ours to nurture, and only God's to end if he chose. That bit wasn't hard -I felt fiercely protective of our baby and wanted him to live. I just didn't want to have to face the world with him. I was starting to realize how much the approval and admiration of others figured in my life.

My labour was textbook - several hours of sweating, lots of gas and air and a 7lb 2oz Paddy came wriggling into the world. But rather than marveling at his tiny fingers and rosebud lips, we looked straightaway at the gap between his first and second toes - the 'sandal gap' often associated with Down's - and saw our worst fear confirmed.

Even though I thought I was prepared, the pain was surprising. It 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. It wasn't too bad when I was with other people, but once they'd gone the world would shrink around me until I was in a terrifying black hole. I couldn't pray my way into even a temporary state of peace, because I couldn't pray at all. When I'd prayed in sadness before, I'd had an image of climbing onto Jesus' knee and being cosseted like a child. But now I felt so betrayed that I couldn't go anywhere near him.

Friends told me of parents of children with Down's who were blissfully happy, but I dismissed them as too unlike me to be of interest. I imagined them as sandal-wearers embracing adversity as an opportunity to change. In principle I agreed with the change bit -although obviously not the sandal wearing. I was keenly aware of my own shortcomings and knew in an abstract sense that challenges are good and spiritual growth desirable. But this wasn't the time for all that. I just wanted a baby - a really ordinary thing that every woman I met seemed to be able to have, almost without thinking. Was that so hard for God? The Bible verse that kept whirling around my mind was Luke 11:12 'If your son asks you for an egg, do you give him a scorpion? Of course not!' Or in my case, absolutely - bring on the scorpion.

When Josh and I had fantasised about parenthood we talked about lovely holidays we'd have together, what kind of school our child might go to, whether he'd be musical, arty 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 had nebulous visions of state benefits, hospital waiting rooms and bitter, unending disappointment.

Once home from hospital we could sometimes suspend belief - I'd never had a baby before so wasn't sure exactly how he was different. Paddy took a while to learn to feed, but was a great sleeper. He smiled early but took much longer to sit up. He had no specific health problems - none of the Down's Big Four of heart, thyroid, ears and eyes. 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. In fact if Josh takes Paddy away on a trip to let me work I spend a substantial portion of my precious free time gazing at pictures of him.

At first, though, he was a Down's diagnosis with a baby attached. When strangers stopped to coo into the buggy I had to restrain myself from saying: 'Don't look - he's got Down's.' I was confounded by the emails from friends that said that we would be wonderful parents to this special child. Did these people know me at all? And the ones who spiritualised it were even worse: 'God has chosen you for this special job' they'd say. 'Well God has got it badly wrong this time,' I'd mutter as I stabbed the 'delete' key. I felt judged by friends and strangers for having a baby so late in life. I was plagued by guilt that I wasn't practising Paddy's physio- and speech therapy enough with him. I obsessively measured him against his contemporaries, coming home from playgroups in tears as yet another child learned to crawl or feed itself.

Featuredowns3.jpgTheology is not my strong suit, but before this happened, I had a stock response to bad things happening which was that clearly God didn't want poverty, pain or war, but everything in creation is free and that means that it has to be allowed to go wrong. Perhaps predictably, when I tried to apply this to my situation, it didn't wash. I had two alternatives: either God was standing on the sidelines, metaphorically wringing His hands, saying how sad it was for us but unable to do anything about it, or he was able to do something about it but chose not to. Either was unacceptable - one meant that he wasn't almighty and the other that he didn't care. I wasn't sure which was worse.

The sense of grief and failure didn't diminish for a long time and nor did my bewilderment and anger with God. But fairly quickly, two practical things helped me to view the future more positively, at least occasionally. First was the realisation that there are any number of people who were born 'perfect' but are now ill, addicted to drugs or alcohol, estranged from their families or even dead from some later developing disease. None of us knows what the future holds, and physical perfection at birth isn't a guarantee of much.

The second thing was the discovery that Down's is not a tragedy. There are so few people with Down's that we rarely 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 get married. I had had no idea that Paddy's life could be almost as conventional as my own and found this strangely comforting.

Even so, it took a couple of years of to-ing and fro-ing, several visits to a psychiatrist and a course of antidepressants before I started feeling human again. During that time - entirely thanks to Josh's (usually) gentle persistence -we prayed together each evening. At first we prayed that God would make us less miserable, then our prayers became more focused on some particular skill we hoped Paddy would achieve. But just recently I've noticed that when Paddy comes up in our prayers, it's mainly to thank God for him from the bottom of our hearts. He is not a diagnosis, but a lively, extremely amusing three year old boy. He seems to believe he can sing the soprano part of Così fan tutte. He can read a bit. He waves at embarrassed teenage lads until they wave back. He steals strangers' chips in Macdonald's. I've lost count of the number of people who've come to me with tears in their eyes and said that Paddy has just given them the best hug they've had in years.

We used to play a game when Paddy was tiny: what would you do to make him have the right number of chromosomes? We agreed that we'd sell the house, give up our savings or take on any amount of debt. We also said we'd have limbs and organs removed or commit crimes - in fact, we would do pretty much anything. Now I'm not so sure. When I think of Luke 11:12 now, I realize that God did give us an egg, not a scorpion, and that it was so dazzling that for a long time I couldn't see it. We still have bad days, and sometimes long for an easier life. However I understand from the parents of regular children that we're not alone in this. I still haven't worked out the detail of the theology but my experience is that Paddy has given us far more than he's taken away. For that I'm truly grateful to God, who really does know me better than I know myself.