Tuesday, 29 January 2013

More of The Same

Maggie's just been rushed to the hospital because the feeding tube that goes deep into her gut came out. The hole that's left in her stomach heals fairly quickly so they have to shove the thing back in as soon as they can. Actually, that makes it sound more straightforward than it is...

The last time the tube came out they couldn't fit one because they didn't have one. Despite the fact that they should have had one. Why didn't they have one? No-one knew. Just one of those things. You know, the usual hospital bullshit.

Shannon rang this evening to check whether they've got one this time (which they should have because they promised us, what with lessons being learned etc.) and they had no idea. No-one was answering the phone down at the department where they keep all their tubes or wherever it is. But she's gone up there anyway.

The reason I'm writing this, really, isn't because this is out of the ordinary. On the contrary, it's because it's all so commonplace. To the extent that we've just sort of accepted that Maggie has so much shit that she has to deal with. And I think this is why I haven't updated this blog in a while: because it's all so much a part of her everyday life that it hardly seems worth mentioning. Or worth moaning about. It's just the way it is.

But occasionally it gets to me a bit. So I write something like this. And although nothing changes, it makes me feel a little better.

Update: Maggie returned home last night with a makeshift tube that only allows for daytime feeds - rather than it being the combined tube that allows for overnight feeding. As I mentioned, they're supposed to have the proper tube at the hospital - especially because they promised, after last time, that they would have. We've just been called by one of the surgeons from the hospital: they've had to order a tube and don't know when it'll be delivered. Hopefully by Friday. When I pointed out to him that they were supposed to have one on site, he replied: "Ah, yes, er, well...".

As I said earlier: the usual hospital bullshit.

Tuesday, 15 January 2013

We Don't Have To Legally Do It!

I just had a row with one of the blokes who works in the office at Maggie and Alice’s nursery. As I pulled in this morning I noticed that the bays where the staff park had all been cleared of snow. The parking bays for parents – and particularly the two disabled bays – hadn’t been cleared of snow. I remarked to one of the receptionists - as I struggled past carrying Maggie, pulling her (very heavy) chair, keeping an eye on Alice and propping open the doors with my feet – that I thought this a little odd. Yes, it is a bit, she replied.

After dropping off the girls at their class, I returned to reception to ask whether I could expect the disabled bay to be clear when I returned to pick them up. The receptionist started to say yes but a voice from the back of the room shouted: “We don’t have to legally do it you know!” This made me angry: “Oh, you don’t have to legally do it? Fine. I’ll just slip and drop Maggie shall I?” I then stormed off.

As I got a few steps out my anger made me turn back. The bloke who’d shouted had the same idea and we met at the door. He started ranting about how he didn’t have to legally clear the snow from the disabled bay or from any bay for that matter all we have to do is clear the road and I’ve been out here for four hours this morning clearing all this and whah, whah fucking whah. To the latter point I suggested he take it up with his employer. To the other point I responded that legally people don’t have to do lots of things – but they do. It’s what makes us nice, decent human beings.

And, of course, he didn’t have to legally clear the staff parking bays either. But he did. If all the parking bays had been left covered with snow I wouldn’t have said anything.

Most days – twice a day – me or Shannon struggle through those nursery double doors carrying Maggie and pulling her chair and keeping an eye on Alice. We haven’t ever – not once – asked for assistance. Even though we’re running the risk of dropping Maggie or doing ourselves an injury. And every day the people in reception watch us doing this. Today it would have been good to have had a little assistance. Or, rather, to have had a little consideration.

But really it was the “we don’t have to legally do it” that boiled my blood. Two things: it’s a very mean-spirited view of the world and, worse, the implicit suggestion there is that I was asking the fucking earth. Who do we think we are with our pain in the arse disabled kid and unreasonable demands?

NB: The girls’ nursery, by the way, is fabulous. The staff there are great and Laura – the young woman who looks after Maggie – is marvellous.