How will I cope with a 'normal' baby?
She was born with a rare disability which her son Archie inherited. Now Emma Bowler is about to give birth to a child without the condition ...
'Everything looks normal." I was having my 20-week scan for our second baby, my partner was beside me and our two-year-old son was chattering away about "the baby on TV" 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 4ft 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. Then one day, on our way back from holiday, we found ourselves sitting in the airport lounge scribbling on Virgin notepaper the pros and cons of trying to start a family. There were more cons, but the pros were stronger: three years later, Archie was born.
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. After all, I've travelled the world, have a fantastic partner, worked in television for more than 11 years, own property, have a good social life - that doesn't sound too bad does it?
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. At the time it felt as if that was the harder option to deal with, and in the back of my mind I had been hoping the baby would be "normal". Mike gave me a hug and said it didn't matter; his conviction has always been crucial. And within weeks, as subsequent scans confirmed the diagnosis, my upset turned into protectiveness.
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. Indeed, it made things a lot easier in pregnancy and - so far, at least - has done so since. 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 on to 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.
Now, 35 weeks into my pregnancy and due to give birth any day, my normal-sized baby is rapidly taking over my body in a way that Archie didn't. I am struggling to remain mobile and have to use crutches to get around. Three weeks ago this baby was already estimated to be nearly as heavy as Archie was when he was born. The baby moves more forcefully than I remember Archie moving, as if he or she is running out of space. And that rapidly growing size means I won't be continuing to term.
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. Will people think he's my little helper, a horrible thought to me? 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.
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 as complicated and as different as the next one. 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 ยท