January Stuff

Just added the pictures above. Maggie on the rug downstairs today after getting herself off to sleep (which never happens) and Alice in the bath last week. They were taken on the iPhone so the quality isn't great.

The first post of 2011. It was going to be all about Christmas and the new year and new starts and all that. But it’s 6am. I’ve been up with Maggie since 2.30am. So forgive me if I ramble a bit.

Although it’s fair to say that 2010 was the worst year of my (our) life, it also seems a little unfair to say it. Because while it’s been extremely difficult, frustrating and sad, there’s the reality of us having two little girls who we adore. And it just doesn’t feel right to pin the blame for our terrible year on Maggie. So I won’t.

That said, I really do hope that 2011 will be a better year for us. I would say that it couldn’t be worse than 2010 but, of course, it could. However, as one of my new year’s resolutions is to tolerate idiots even less than I previously did, it’s possible that everything associated with Maggie’s care and development might be better as a result. So if you’re an idiot – particularly a NHS idiot - watch out.

Which reminds me.

A few weeks before Christmas Maggie’s gastrostomy site began to leak. Not only did this mean that she wasn’t taking enough food in, it also caused her a great deal of discomfort as the hole in her stomach got very sore. As soon as it leaked I took her to the hospital where she was examined by a surgeon who said it would stop of its own accord. It didn’t. A few days later we were visited by a nurse who agreed with the surgeon’s assessment and who promised to get us some cream to soothe Maggie’s site. The (prescription only) cream didn’t come and her site grew sorer and sorer. Finally, Shannon called in another nurse who, on her own initiative, changed the device that goes into her stomach. The leaking stopped.

In the meantime, we’d requested to see the senior surgeon at the hospital to talk about Maggie’s gastrostomy tube and whether we should change the device. Basically, we wanted his expert opinion. We also asked him – twice – to consult with Dr Bem so that he was fully aware of what Maggie’s problems were. In the weeks leading up to this meeting, which we regarded as a very big deal, Shannon and I discussed all of Maggie’s feeding possibilities: a new peg, a dual peg thing that goes into different parts of her stomach, whether her being constantly hooked up would be a good thing or a bad thing, whether she should be fed all through the night. Etc.

Yes, it’s boring. It bores us too. But it’s what we worry about and it’s why it was such a big deal for us to see this senior surgeon. We needed expert guidance and advice.

So we got to the meeting, sat down and this surgeon said: What’s the problem? Have you spoken to Dr Bem? we asked. Er, no, I er… he muttered. Why not? Er, well…

He hadn’t even bothered to talk to Maggie’s consultant – despite acknowledging that he’d been asked twice to do so.

So we had to go through again what Maggie’s problems were. And then, unbelievably, he said: What do you think would be best to do? We don’t know, we replied, we were hoping you’d tell us. So he mumbled a bit more about various options and then said again: What would you like to do? Again, we said, we were hoping for your guidance. Whereupon he whipped out his pencil and drew a picture of one of the pegs. He didn’t explain how this would benefit Maggie, he just a drew a picture of it. And when we asked if that was the one he was recommending, he again asked what we’d like to do. It was then that I walked out of the room, taking Maggie with me.

(I think the reason I write these incidents down is so I can remind myself of the utter useless cunts we have to deal with. It also reminds me that, really, we have to do all of this by ourselves. There seems to no-one we can really trust or rely on.)

Christmas, however, was great. Mainly because all of my children were here. And, despite a swine flu scare on Christmas Eve (that turned out to be a chest infection), Maggie was on reasonably good form throughout. She even slept a couple of times through the night. That’s all changed now though because she’s up all night snorting and snuffling with a cold and a temperature. In fact, she’s been like this for over a week now. So again, we’re exhausted.

She’s also, disappointingly, not put on any weight. Even though, relatively speaking, she’s been keeping her feeds down. So that’s another problem we’re going to have to seriously tackle. You should see her these days: she’s skin and bone. It’s very upsetting.

We were watching a documentary about Bob Monkhouse the other night that featured a clip of him talking about his son who had cerebral palsy. He said something along the lines of how the sadness that he felt wasn’t for himself but was for his son having to suffer such a difficult, tragic life. That’s how I feel nearly all of the time. And it’s unbearable. Which is why it’s good sometimes to simply rant about the people who let us down: because it’s a way of talking about Maggie and her condition that avoids the sadness.

The problem with the sadness is that it’s so difficult to express. It just ends up sounding horribly mawkish. And needy.

That said, I’ve been having so many sad thoughts about Maggie recently that seem to come from nowhere. I haven’t spoken about this particular one (below) to Shannon yet because I know it’d upset her and because I don’t think I could get through telling it anyway.

I was lying in bed a few weeks ago and, as I was falling asleep, the following scene came into my head: a road in a holiday caravan park, me and Shannon in the foreground carrying bags and, just ahead, two little girls – around five or six years old – turning and waving at us, giggling, then running off to hide behind the bushes. Two normal little girls doing something that you’ve seen kids do a million times before.

It’s just a silly little image, a little vignette, but it’s really stuck – and it breaks my heart. I think because the scene is so trivial, so ordinary. It’s not as if I were picturing her winning gold in a race or anything. It was just Maggie, with her sister, doing something really normal. Something that we know – despite kidding ourselves that we don’t know – she’ll never be able to do.

She was fitted with special boots the other day. They’re designed to keep her feet from bending down so that if ever she gets close to walking, she’ll find it a little easier.

On another note: my previous post got a lot of attention. Which is not surprising really, given its subject matter. As you may have seen, the comments all got a bit out of hand, with some people airing their stupid opinions and hurling abuse. I haven’t really got a problem with stupid opinions and abuse - but I have got a problem when it’s happening on a site that’s associated with my daughters. So please, if you want to do that kind of thing, have a go somewhere else. And grow the fuck up.

During all of this attention I was also referred to as a ‘Special Parent’ by a well-intentioned blogger. I can’t tell you how much I hate that. The odd thing is that I’m not quite sure why I hate it. It’s probably something to do with not wanting for either us or Maggie to be labelled. Our names are enough. And we’ll be the ones who decide what we’re called. Plus, of course, I have five children, only one of whom has special needs. And then there’s that thing of wanting to resist being sucked into the world of disability. As I’ve said before, I don’t want Maggie in that world – I want Maggie in our world, with us.

Oh, and I also had a few complaints about my use of the c-word. Frankly, I’m amazed that someone can read this blog and think: There’s no need for the swearing. Fucking twats.

But the vast majority of comments we do get, from people we know and don't know, are bloody marvellous. We really appreciate all of the love and support that's out there. It makes us very happy.