Every family lives in a bubble in the early days, and we are no exception. For more than two years Isobel has held us in thrall, to both her charms and of course her still-evolving disability.Once those dreadful seizures were brought under control - touch wood that they never return - Isobel's changing needs became our normality, with PACE sessions increasing and new demands for orthotics, aids and equipment, such as arm splints, insoles and seating facilities, emerging.
In that time we have almost forgotten that we have never used a socket protector, baby walker or child safety gate (I had to Google this term to remind myself what it was called). The three-way trike we bought for Isobel sits unopened in its packaging in the attic, collecting dust. We struggled to find toys that would advance her learning and motor skills - even after two years, her fascination with textured cloth books remains undimmed - until Miles ingeniously found Stickle Bricks on eBay.
I am still changing Isobel's nappy, and beginning to wonder if I should switch to pull-ups. But I daren't think about toilet-training; it's more a matter of practicality now she's almost reached the maximum age for velcro nappies, given that her poo is as hard as ever.
Due to the diversions in Isobel's development - none of which are paths that we've trod before, obviously - with baby Benedict, I get the sense that I am starting all over again. He certainly feels like a textbook baby, at least insofar as his behavior and its echoes of the weekly BabyCentre development newsletters that I get in my in-box goes. I can already see now how easy it is for parents to fool themselves into thinking their children will never acquire a disability.
I can't see myself becoming one of them not just yet. At five weeks old Benedict is still a newborn, and I am mindful of the outcome of his six-week check-up. It is only natural. For me to want both of my children to be disabled would be warped, although I understand where parents of more than one Deaf child are coming from when they speak of their relief that they won't have to treat their children differently.
With a new baby, it is extraordinary how your perception of the older child changes. As Isobel's mother I'd been so involved with her, giving up freelance journalism so to attend her numerous appointments as well as PACE sessions so that by the time I gave birth, I regarded myself as a full-time insider, easily irritated by people who showed no sense of inclusion towards her. That bubble - Isobel's world - seemed to have been reinforced with extra gelatin.Of course, I missed her badly during the two days I was in hospital. Upon being carried into the room by my sister-in-law, though, to my surprise I found myself noticing Isobel's disability much more than I used to. It wasn't that Benedict was showing no signs of impairment - not as far as I could tell anyway. Rather, time had generated a little distance between me and Isobel, so that for the first time - momentarily at least - I was seeing her through the eyes of an outsider.
Not that it compelled me to reject her - far from it. I could not possibly do that to my own daughter. But it gave me an important glimpse of how infrequent visitors might regard her, so that while not a perspective I wanted to encourage, at least it enabled me to see how it might look from both sides.
But as soon as the bubble popped, those huge greenish pools for eyes, the sweeping eyelashes - and of course that little beguiling smile that she'd give people she hadn't seen for a while - had me floored once again. Isobel was still knock-'em-dead beautiful, skin still like peaches-and-cream, still as full of life as ever. In contrast to tiny Benedict - all jerky reflex action and darting hello-world eyes - she was suddenly a grown-up with incredible legs. This was one big sister who could teach her brother a thing or two about disability.
