Homeward Bound

We were told yesterday that Maggie's gastrostomy operation will take place next Wednesday morning. Which is both good and bad: good that they're getting on with it, bad that they're getting on with it.

I was only thinking this morning that it would have been difficult with twins anyway. I think we've forgotten that. Then again, Alice is a dream. Maybe Maggie would have been a dream too. Maybe it would have all been really easy and lovely and manageable. Maybe we would have been really happy.

The worst part of all this is thinking about what might have been. I think I've said that before. I still - we still - have those moments where we look at Alice and become overwhelmed by the sadness of Maggie not being there with her.

Of course, it's not just a case of getting her home and having her literally being with her sister. Whatever it's like, it just won't be the way it should have been.

I think there's a tendency for us to think about how bad and sad this is for us. Which is fine. You can't blame us for that. But I think we occasionally forget how bad this will be for Maggie. We don't know yet exactly what her disabilities will be, except that they'll be serious. Who'd want to go through life like that? I wouldn't. Poor Maggie.

And what was it about Gok Wan's programme about disabled women this evening that annoyed me? I didn't watch it. I couldn't face it. Maybe I suspected that it would be full of platitudinous crap about how even though they're disabled they're just like 'normal' women with the same ridiculous hang ups about beauty and self-image and blah, blah.

I think it's because I'm still resistant to the idea that there could be anything 'normal' or 'positive' about being disabled.

But we'll see.

We're currently still trying to re-set Maggie's body clock. I say we but I really mean Shannon. She's up at the hospital now, no doubt trying to keep her awake and keep her calm while she is awake so she sleeps through the night. Or at least through a good portion of the night.

The idea is that she'll be a bit easier to manage when she does come home. To be honest, because I'm the way that I am (not thinking about anything until it actually happens) I've been a fair bit less involved in this. It's going to be tough, we know it's going to be tough, so let's just deal with it at the time. Which is probably a daft way of approaching it. I don't know.

So she'll be coming home properly soon with her button gastrostomy and feeding pump and tubes and medicines and Gaviscon and all sorts of crap. In the meantime, they reckon we can get her home on day release type visits. Presumably to get her acclimatised to her new environment (and to how fucking cold this house is).

Below, the girls together - for the first time ever - in the double buggy today. We went as far as the hospital canteen. Which is the furthest Maggie has ever been.