Worlds apart

There's a line from Buffy which a friend and I use from time to time - "Our lives are different than other people's". Granted; we're usually talking new and intriguing variations on dealing with poo or unforeseen complications from an overabundance of helpful professionals, rather than giant snake demons, multiple apocalypses and the ability to slay without breaking fingernails. But it's still shorthand for the fact that we're living in a world most of the people living in this world have no idea even exists.

Every so often, my world bursts in on someone else's, and their comfortable assumptions about life are blown apart. They realise, for example, that my child was just like theirs until there was an accident at birth; that not all disability is testable for in utero. Or they discover that the national health service does not in fact provide constant in-home nursing care for every child with a disability. Or that some children won't get better, no matter how marvellous medical advances might be. Hopefully we don't just blow a cosy world apart but also help open eyes to the beauty our world contains.

Sometimes though, it's the other way around - and it's my world which gets cracked. A conversation with someone fairly closely involved in Little Fish's daily life. Who, on discussion, proved not to know the difference between a catheter and a gastrostomy tube (for anyone reading who is similarly unaware, the catheter is for urine, it goes up the same tube most of us wee out of and drains the bladder. The gastrostomy is a little silicone tube which joins the stomach to the skin and lets us pour liquids directly into it). It's not simply that this person spends time with LF nearly every day, it's that I had forgotten these things are not part of most people's lives.

And the other night a friend rang here. And my first thought was that they were ringing to let me know another child had died - one of the five children I can think of right now who are critically ill in hospital or just about hanging on at home, although no one really quite knows how. And they weren't, they weren't phoning about anything serious at all. And I realised that probably, it wouldn't be most people's first thought whenever the phone rang.

I'm not sitting here waiting for a child to die. It's just that having children die is a part of this world I live in - and, thankfully, it probably isn't a part of everyone's world. I certainly hope it isn't anyway.



I had a daughter, and my daughter died. And if I harp on about it, well, know that she's nearly always on my mind. Not always in a world-shatteringly awful abyss of loss kind of a way, sometimes in a lighthearted oh, she'd have loved today kind of a way, and sometimes in a half-guilty, we'd never have been able to do that with her kind of a way. And before she died, I didn't understand the enormity of that loss. I've known other children who've died. I've known other, older, much-loved relatives who have died. But the utter jar, the time fracture when a parent loses a child; that, I hadn't known.

Time passes, as it has a tendency to do. Life moves on; it's tied to time that way. But death, death interrupts both life and time. And death causes time to eddy oddly about life - a phrase, a request, a something; and suddenly that deathlossgriefPAIN is back as urgent and demanding and piercing as it was when it happened, and as piercing as it was before it happened but when the realisation of its inevitability first hit.

And that probably doesn't make much sense. But I think I needed to say it. And having said it, I can step aside from it and bring myself back to the land of the living, where the poo from small incontinent children is still being added to by the piles of poo from smaller undertrained kittens; 4 loads of washing today and two bags of cushions and stuffed toys thrown out and one most precious knitted doll waiting for a Biotex bath in the hope she'll recover. Ground pepper under the furniture does indeed stop kittens pooing under the furniture, but, as the saying nearly goes, you can lead a kitten to litter, but you can't make it sh*t. This house stinks.

Tia