Wednesday, 29 September 2010

Maggie Does Good. Alice Does Gooder.

Maggie was at Quidenham for a few days from Sunday. So on Monday and Tuesday I was home alone with Alice doing the househusband thing. Shannon, unfortunately, was at work.

Honestly, if it was just Alice I'd look after her full-time. She's so easy and so good. You can take her anywhere with absolutely no fuss. She eats everything you give her. She sleeps when it's time to sleep. And in between times she's just happy and delightful. It's a real pleasure being with her.

But it's not just Alice. Which is why Shannon and I share the childcare. A full week with both would be pretty much impossible.

So we picked Maggie up this morning and I think it's the first time we've collected her that we weren't a little shocked at how ill or small or different she looked. We collected her today and she looked like a happy, contented baby. And she was like that for the rest of the day too. That might have been because she slept through the night the previous night.

She's keeping her food down and she's sleeping pretty well. And she seems a little happier. So things have improved slightly.

That's three sentences I've started with 'So'. I don't like it.

We bought Alice one of those push along trolley things with bricks in the other day. I've got this mission: to get her walking before her 1st birthday (which is NEXT SATURDAY 9TH OCTOBER). I think this is the way forward simply because she's not really crawling. But she does like being on her feet. So I'm going to hook her on to that trolley and give her a big push. Wheee! she'll go, wheee!

Four sentences starting with 'So'.

Of course, it's my birthday (on SUNDAY 3rd OCTOBER) before the girls' birthday. But I've been walking for around 42 years now. No wonder I'm knackered.

Friday, 24 September 2010

Serenity Now

I've been a bit ranty on here recently. More so than usual perhaps. But as I always say: if I didn't live in a world of twats I'd be much more, ooh, serene.

Anyway. Because the recent photographs are on the Mac at work, and I'm currently on the PC at home, I drew this picture of Maggie and Alice. I think it captures them very well indeed. You'll note that they too look very serene. Good for them.

Tuesday, 21 September 2010

We Would Have Her Any Other Way

There’s one big advantage to having a disabled child: you automatically become a good person. In other people’s eyes I mean. Of course, it’s not actually true. You’re as good or as bad as you always were.

But in all honesty, it’s quite nice that people think of you like that. Why wouldn’t it be? The trouble comes, I suppose, when you start to believe it.

Where am I going with this?

It’s a kind of roundabout introduction to me wanting to rant a bit about some fucking hippy idiot writing in The Independent who said she wouldn’t want her profoundly disabled child “any other way.”

It’s here.

I say hippy because what she’s got going on there is something that all hippies have going on: a smug serenity that comes from the unshakeable notion that they are very good people.

I reckon the story this woman tells herself is this: "I’ve got this disabled child but rather than whinge and moan about it I’ll accept her and the situation for what it is and… no, wait, I’ll do more than accept it. I’ll revel in it. Bask in it. Everybody, gather round: see my light, feel my warmth. Look how much I love my daughter. Not just in the way that EVERY OTHER FUCKING PARENT LOVES THEIR KIDS but in a way that just defies convention. I love her as she is. Not how I wish she was. As she is. And you know what? That makes me a better person than all those parents of disabled kids out there who would want their disabled children to be different. Or ‘normal’, whatever ‘normal’ is. Why can’t they all be as gracious and as serene and as accepting and as giving and as loving as me? Because ultimately, this is what it’s all about, my attitude to my daughter: it’s all about me. Look at me. LOOK. AT. ME."

I’ve said it before and I’ll say it again: I want my daughter to be normal. And I’m not going to apologise for saying normal. This is what I mean by normal: being able to eat through your mouth, being able to walk, being able to talk, being able to reach out for things and pick things up. I’d love my daughter to be able to do normal stuff like that. So yes, I do want her to be another way. I want her to be normal.

Not wanting your daughter – another human being – to be something other than profoundly disabled doesn’t make you a good person. It makes you selfish and stupid.

What’s particularly monstrous is the way this woman wears the whole disability thing as a badge of pride. Unlike the rest of us, you see, she’s not so blinkered and small-minded to regard disabled people as disadvantaged. And unlike me – because she’s on another fucking plane – she doesn’t weep for the possibilities her daughter had and all the good things she’s missing out on. Her daughter will never read or appreciate music. But what of it? She’s relaxed and content and perfect. Her daughter will never dance or have children. So what? Look how she smiles, happy in her own little world.

And when she says “I’ve been let in on a little secret: profoundly disabled people are awesome” I could happily punch her in the face. What a cretinous thing to say.

Also, look at the way she engages in the standard hippy trick of invoking children: they don’t notice disability apparently. Because they’re too busy mooning around in fields of grass and making buttercup thingies and having wisdom that comes from the innocence that cynical old twats like us have lost. Maybe she should have been a witness in the recent case where that old fella with mental problems was hounded to death by the neighbourhood kids. Yes, because when they were picking on him and taunting him and making his life an utter fucking misery they were doing it without the knowledge that he was disabled. Right.

So her daughter is ‘happy’. So fucking what? For many people and their families having a disability isn’t a blessing that helps them to build character or become a better person or become a cheerleader for the disabled ‘community’. For many people a disability is effectively a life sentence of hardship, misery, pain, frustration and sadness. And why wouldn’t it be? It’s fucking horrible. What kind of monster would want anyone to be like that?

Oh, and of course she’s written a book. Order it now: it’ll help you to open your closed, unenlightened minds about disabled people.

Monday, 13 September 2010

Rubbish and Sick


It was the first night that Shannon and I had spent apart since the girls were both home. We're like Paul and Linda McCartney. She was going to London for the night with our friend Robynne to say goodbye after being with us for the week. Just a few minutes before they left, Maggie threw up very violently. Within seconds she went from being fairly bright and happy to looking like a zombie.

That afternoon, after Shannon had gone, she got worse. Vomiting all the time. Diarrhoea. And extremely upset. She was like this all through the night. All through the fucking night. I was constantly changing her covers and pyjamas. I've never seen anything like it. And on the one night that Shannon wasn't here. I didn't sleep a wink.

Oh, all right - one wink. For about an hour.

By the following morning she'd developed a very high temperature. Still vomiting and still loads of diarrhoea. But she was also very dopey and sleepy. So the rest of the day was just getting her up, giving her water and paracetomol, catching the vomit, cleaning the diarrhoea and getting her back to sleep.

Unbelievably, not long after Shannon came home she started to get better. Today she's much better. Still sick occasionally and still very runny below. But she's cheered up no end. Which is good, because it's my day off today with the girls. On Mondays and Tuesdays I'm a house husband.

And no, before you say it: Maggie wasn't sick because she was missing her mum and couldn't stand the thought of being alone with me. Alice had had the same thing earlier in the week but, Alice being Alice, she basically shrugged it off. We assume it was a stomach bug. I could have taken her up to the hospital but really, these days I'd sooner trust her to the weird bloke next door.


Some time ago we asked the council whether we could have another wheelie bin. I received a call this morning from some bloke asking why we needed another bin. I explained that not only are there three adults living here, there are two young babies. So that means loads of nappies and all sorts of other crap. On top of all that - and what accounts for our extra usage - is all the feeding equipment, syringes and bottles and shit that Maggie has to have. Plus all the massive stacks of boxes they come in. It really is a lot. His answer: for him to come round one day and assess our situation by examining how we recycle, what we recycle and how we go about disposing of rubbish etc. All that for an extra bin. Not even a big bin - just one of those silly slim bins they have down in the Golden Triangle. So basically the council would sooner spend all that time, money and effort sending someone round to do an assessment, write a report and all that bollocks just for the sake of a slim bin. I asked the bloke if he personally felt that that was a sensible thing to do. I'm just following orders, is essentially what he said. Because that's what they all say. It's just policy.

(In all seriousness, if you've ever wondered how the Nazis took off, just look at people like that. Not evil, not insane... just very compliant.)

I told him no thanks. On top of all the nonsense that goes on with Maggie all day - including the various visits from medical people etc. - what we don't need is some idiot coming round to lecture us on how to dispose of our rubbish better.

I, of course, blame Rupert Read.

Thursday, 9 September 2010

Alice at The World's End

Here's a picture of Alice on the swing at a pub (click to see it big). Isn't she gorgeous?

Friday, 3 September 2010

Maggie and the NHS

Maggie's taken a few steps back recently. She's been throwing up, for these past couple of weeks, with every feed. Projectile vomiting and constant churning as she's feeding. It makes her very upset, very loud and very unsettled. Our nights have been nightmares.

Plus - a big plus - it means that she doesn't put on weight. Which is so important for her and her development.

It occurred to us the other day that if Maggie were a normal baby we'd just ring the GP and get her seen to. But because we have open access to the hospital's Children's Assessment Unit - where doctors reside - Shannon took her there instead. She took Alice too. Shannon with twin babies, one of whom was in an obvious state.

They kept them up there - the vast majority of the time just waiting around - for almost seven hours. Seven hours! That's practically a full working day.

Bear in mind that it wasn't them just sitting there. Shannon had to feed them both and entertain them and, most importantly, fiddle about with Maggie's feed machine etc. With Maggie constantly howling.

I complained about this via Twitter and the fella who looks after the hospital's Twitter account said he'd look into it. He came back with the suggestion that the reason they kept them there so long was that Maggie was under observation. Not so, I said. He then came back and said he'd spoken to the sister and that she'd said that as Maggie had had a temperature they wanted to wait until it went down. I pointed out that Maggie didn't have a temperature. He then told me that she did. I insisted that she didn't and suggested that he might have got his facts wrong. He countered this by saying that the senior nurse told him that that was the case and that it certainly sounded like Maggie. I suggested he ask again.

So, basically, he was insisting that the length of time they were there could be explained by the fact that they were observing her.

The next morning I received an apology from the Twitter fella. It turns out that I was quite right after all - Maggie didn't have a temperature. It was 'crossed wires'. But still, there was no explanation of why they were kept waiting for so long. I suspect it's because there was absolutely no fucking good reason why they were kept waiting for so long.

I mention all of this as a way of providing insight into what it's like sometimes. It's not just us sat at home with a disabled kid. She's really difficult and requires constant attention. Everything about our lives is to do with, and affected by, Maggie.

So occasionally we seek outside help. And almost every time we do that our lives become a little bit harder, instead of easier.

Except for Quidenham. Who are so great and helpful and lovely. God bless them.

That hospital experience, by the way, isn't an isolated one. It happens every time we go up there. They get us in, they have a quick look, they fuck off for hours and then - when we've demanded, time and time again, that someone sees her because we've been there for hours - someone turns up, sheepishly apologises and mutters something about observing her.

Crossed wires and miscommunication are par for the course.

This isn't really a complaint about shit NHS service. This isn't really a complaint about incompetence. This is a complaint that comes from wanting what's best - and what's right - for Maggie. She hasn't got a broken leg or a fever or something that can easily be patched up. She's got something that will affect her for the rest of her life. That has ruined her life. The only chance we've got of making it bearable for her is trying to get on top of things in these first two years.

So you can perhaps appreciate why we get so upset and angry about the fact that some of the people we have to rely on let her down so often.