Two little boys

Was passing on her impairment to her son a reason to feel guilty, asks Emma Bowler

I was recently asked if I thought I had been selfish having a baby, knowing I had a 50:50 chance of passing on my disability. Whilst the disability activist in me might have argued that I have the right to have a baby, the maternal part of me now realises that the answer is not clear-cut.

I have Kniest Syndrome,  which means I’m four feet tall and don’t have the best mobility. Ultrasound scans indicated that our first baby, Archie, was going to have Kniest, but by the time he was due the initial guilt I felt had turned into protectiveness; at least I knew what I was in for, as I had the same disability.

When Archie was a few months old, I took him to my consultant and she said: “He’s just a baby like any other baby, so go away and enjoy him.” And that’s exactly what we did. OK, he was smaller than other babies, he wasn’t as boisterous as most, and it took him ages to walk solo; but to us he was normal.

I maintained that feeling of normality by not going out of my way to come into contact with children of the same age as Archie, therefore avoiding any cause to feel selfish or guilty about having passed on my disability because those situations would have involved comparing him to his peers and therefore highlighted his difference. Then I had Ben.

Ben is “Mr Normal Baby”. Not even one, he’s into everything: falling off the bed, climbing stairs, escaping into the garden – all normal things, but things Archie didn’t do. He is also, despite the two-year gap between them, almost as big as Archie. In fact, some people have mistaken them for twins, until Archie starts chatting away.

There’s no avoiding comp­aring Archie with Ben, and the difference in their size, agility and mobility is stark.

When Archie started school a few weeks ago, there was finally no avoiding comparison with his peers. My original guilt reared its head once more: I worried about how Archie would be seen by his peers and whether he would now start to realise he was different.

As with most of my worries, they are already starting to come loose at the seams. Archie’s classmates seem to have taken a shine to him; I think he brings out the maternal side of little girls whose attention he is more than happy to have! And rather than see himself as different, he seems to be thinking: “Why can’t I do what they are doing?”

He now has a playmate who is always riding on his tractor, something he was scared of using before. After seeing her on it, he realised he wanted to try it; he’s now quite happily freewheeling down slopes – so while before I was worried about him being timid, now I’m worried about him falling off!

Perhaps this is an analogy for the way things will go for him now he’s with his peers. Once again, I will put my guilt to bed. Well, for the moment at least.