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Coping with a 'normal' baby

Emma Bowler, from London, UK, was born with a rare disability which her son Archie inherited. She has recently had a second son Ben, who does not have the condition. Writing before Ben’s birth, Emma explored the prospect of a family with two non-disabled and two disabled members.

"Everything looks normal.” I was having my 20-week scan for our second baby when the sonographer said the words that every prospective parent wants to hear. But for me, they were the words that set my mind racing. How on earth was I going to cope with a ‘normal’ baby?

I was born with a rare disability called Kniest Syndrome. I’m short – only four feet tall – and my joints aren’t very flexible so I also have mobility issues. I can’t walk very far, stairs are difficult and I use a mobility scooter when out and about. I spent much of my life saying I didn’t want children as a cover-up for the fact that I was too scared to ask anyone whether it was physically possible. I was also conscious that Mike, my partner, was worried that pregnancy might have an irreversible effect on my mobility. And we knew that I had a 50:50 chance of passing on my disability to our baby.

Aspirations

When I was pregnant with Archie, people would ask if I wanted a boy or a girl. When I replied that I didn’t mind, they would finish off my sentence for me with the words “... as long as it’s healthy”. I remember wondering if they would consider my child ‘healthy’ if he or she had my disability. In my eyes, being unhealthy is not the same as being disabled, and saying that we didn’t want a baby with the same disability as me would have been like saying I should never have been born, which is ridiculous.

But I was a bag of nerves when Mike and I went for the 20-week scan for my first pregnancy. When the sonographer turned to me and said that some of the bone lengths were shorter than normal – a sign of Kniest – I burst into tears.

Kinship with son

Now Archie is two, and an articulate, affable toddler who enchants everyone around him. Having him has made me realise that the question of whether or not he would have my disability was even more complicated than I had first thought. There was something very compatible about the fact that I was small, carrying a small baby, and Archie and I have a kinship that I hope will help me give him a positive outlook for his future. Archie’s disability and smaller size has also brought a whole gamut of advantages. He has put on weight more slowly than a non-disabled child, giving me the time gradually to build up the muscles to lift and carry him. Because of his disability some of his motor milestones have been delayed: I still don’t have to chase after him, even at the age of two, as he’s not walking solo yet. For Archie, physical exertion requires more effort than for most babies, and he needs his rest. His sleep patterns have been a godsend envied by every parent I know.

Mike and I had always known we didn’t want an only child, and I didn’t hesitate to get pregnant again. The only question was: would the coin flip onto the other side this time around?

Again they measured the bone lengths at 20 weeks, but this time they came out as normal. Each subsequent scan produced the same diagnosis, and it became increasingly clear that our second baby was going to be ‘normal’. But while everyone else was breathing a sigh of relief, Mike and I were wondering how I would cope with a ‘normal’-sized baby.

Questions to grapple with

For the past few months I’ve been grappling with so many questions, such as how will I cope with lifting and carrying a normal-sized baby? At some point my new baby will discover the joys of running off which, given that my athletic skills are about as far removed as you can get from the Darren Campbells of this world, could present additional problems. I wonder how we will look to strangers; my child will probably be as tall as me by the age of six or seven. And will a non-disabled child be more embarrassed by a disabled parent than a disabled one?

The practical issues are easier to solve. My weight-lifting ability will probably increase as the baby grows, and hopefully by the time he or she becomes too heavy for me to carry, they will be walking. It is the psychological and emotional aspects that are harder to predict. How, for instance, will sibling dynamics work? Will Archie draw attention away from his new brother or sister because he is different, or will Archie get sidelined as his younger sibling outgrows him? I wonder, too, whether Archie will resent the fact that many things – such as playing sport, getting out and about, finding a partner – will be easier for a child who doesn’t have Kniest. And I wonder whether any guilt I have about such things will lead me to favour Archie.

Family dynamics

It is impossible to know all the answers to these questions, or even to know whether the questions themselves will ever arise other than in my mind. But at least Mike and I have gone into this with our eyes wide open, and that can only help. What I’ve realised is that it is easy to be wrong. I always thought having a ‘normal’ baby was the utopia; now I’m having a ‘normal’ baby, the considerations are much more complicated. Our children will be different from each other, just as all siblings are. Some of these differences will be due to the fact that one has a disability and the other doesn’t; others will be because they have different personalities, foibles and traits.

All families have complicated dynamics, and ours will be just as complicated and as different as the next family. Sure we will probably be an unusual sight when we go out – two non-disabled and two disabled members. But being distinctive is not always a bad thing. Archie and I already attract attention wherever we go, partly because Archie travels in a seat Mike attached to the back of my mobility scooter. A lot of people recognise us, and say hello to us. We’re like D-list celebrities where we live in west London. As one friend recently put it, our world is a bit like being in one big Cheers bar. Our non-disabled offspring is about to join the party ...

Guardian Unlimited © Guardian Newspaper Limited 2006. Edited version reproduced by permission of Guardian Newspapers.

 

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