I'm hopeless with photos and couldn't get a good one with Paul, Maggie and Alice from our Sunday carvery at the pub - so here's one of Paul and Maggie and a little video of Alice (with Paul in the background, so that counts!).
Hurrah for Paul!
Sunday, 19 June 2011
Happy Father's Day!
A very happy Father's Day to our lovely Paul, who is so smashing and strong that he has given all of his kids the very best of himself - intelligence, humour, creativity, curiosity, charm and, of course, good looks! And because he has taught everyone more about Maggie just from being a great dad than any medical expert or professional ever, ever could. Tom, Louie, Isaac, Maggie and Alice - they're all very lucky kids.
I'm hopeless with photos and couldn't get a good one with Paul, Maggie and Alice from our Sunday carvery at the pub - so here's one of Paul and Maggie and a little video of Alice (with Paul in the background, so that counts!).
Hurrah for Paul!
I'm hopeless with photos and couldn't get a good one with Paul, Maggie and Alice from our Sunday carvery at the pub - so here's one of Paul and Maggie and a little video of Alice (with Paul in the background, so that counts!).
Hurrah for Paul!
Saturday, 18 June 2011
Chair Despair
I mentioned in a previous post that Maggie had been fitted for a special chair and that we were just waiting for it to arrive. Knowing how utterly fucking shit the NHS can be, I made it clear to Maggie's Occupational Therapist that I was worried it would take a long time to come. Can we please ensure, I asked, that this (unlike all of the other disappointments we've had to endure) goes ahead with no problems? Of course, she replied, I'll get on to it straight away.
That was nearly two months ago. In the time since then, we - or, rather Shannon - had also spoken to her on the phone, asking whether the chair had been ordered. (I say spoken to her on the phone like that was just a case of giving her a call and having a chat - we'd already left numerous messages that she didn't respond to. Yet again we had to chase and chase.) We were assured that it was all going ahead and that yes, the chair had definitely been ordered.
Of course, you know where this is going...
Yesterday we were told that the chair hadn't been ordered at all.
Why hasn't it? I asked a woman from a different department. We don't really know, she said, but it's been ordered now. Are you saying, I asked, that it's the fault of Maggie's Occupational Therapist? A long pause. Yes, she said, yes I am.
So we've no idea when Maggie's chair will arrive. It could take months.
Now, bear in mind that this isn't just an inconvenience. This chair is something that will help Maggie's development, both physically and mentally. It will help to improve her life now and her life for the future. As things are at the moment, she has to sit in a chair that just isn't fit for purpose, that is a hindrance to her.
I don't understand how these idiots are allowed to carry on as they do. It's not just the incompetence that infuriates me - it's also the lies and the defensiveness and the buck-passing and the waffling and the way they make a show of understanding our situation by engaging in platitudes and pointless empathising... when all we want from them is to do what they promise to do. When all we want from them is the bare minimum of what their jobs are supposed to be. Yet they fail us time and time again, adding to the pressures of our already difficult lives.
Related, this piece last year from Ian Birrell (who also has a severely disabled daughter):
"Promises of action are followed by a wall of silence, and you end up having to harass and harangue people to deliver things everyone has agreed are needed. Charities tell of wheelchairs taking so long to be delivered the child has grown out of them by the time they arrive."
.
That was nearly two months ago. In the time since then, we - or, rather Shannon - had also spoken to her on the phone, asking whether the chair had been ordered. (I say spoken to her on the phone like that was just a case of giving her a call and having a chat - we'd already left numerous messages that she didn't respond to. Yet again we had to chase and chase.) We were assured that it was all going ahead and that yes, the chair had definitely been ordered.
Of course, you know where this is going...
Yesterday we were told that the chair hadn't been ordered at all.
Why hasn't it? I asked a woman from a different department. We don't really know, she said, but it's been ordered now. Are you saying, I asked, that it's the fault of Maggie's Occupational Therapist? A long pause. Yes, she said, yes I am.
So we've no idea when Maggie's chair will arrive. It could take months.
Now, bear in mind that this isn't just an inconvenience. This chair is something that will help Maggie's development, both physically and mentally. It will help to improve her life now and her life for the future. As things are at the moment, she has to sit in a chair that just isn't fit for purpose, that is a hindrance to her.
I don't understand how these idiots are allowed to carry on as they do. It's not just the incompetence that infuriates me - it's also the lies and the defensiveness and the buck-passing and the waffling and the way they make a show of understanding our situation by engaging in platitudes and pointless empathising... when all we want from them is to do what they promise to do. When all we want from them is the bare minimum of what their jobs are supposed to be. Yet they fail us time and time again, adding to the pressures of our already difficult lives.
Related, this piece last year from Ian Birrell (who also has a severely disabled daughter):
"Promises of action are followed by a wall of silence, and you end up having to harass and harangue people to deliver things everyone has agreed are needed. Charities tell of wheelchairs taking so long to be delivered the child has grown out of them by the time they arrive."
.
Tuesday, 14 June 2011
A Quid For Quidenham
Maggie has just returned home from a few days at Quidenham. She had a lovely time and they confirmed that she's sleeping better, is happier, and is making good progress with things like reaching out and interacting with people. Good stuff.
I've said it before, but they do a marvellous job there - without them our lives (and the lives of many other families) would be so much worse. The worrying and depressing thing about that, however, is that they're a charity. And as with NANSA (Norfolk and Norwich Scope Association), they have to rely on the goodwill of the public. Maybe that's one of the reasons why they work so bloody hard and provide such a fabulous service - because, unlike the NHS, they just can't afford to be complacent. Or lazy. Or incompetent. Or arrogant. Or inefficient.
So thank you, again, to Quidenham and the smashing people there.
If you fancy giving them some money, by the way (remember: it's for kids, real-live human being kids who are in the state they're in through absolutely no fault of their own) then please visit their site (below) and donate. Even if it's just a quid.
In fact, I reckon they should start up a campaign called 'A Quid For Quidenham'. Good huh?
(If you're reading this EACH, how about it? Please get in touch if you want me to flesh it out a bit - I do this kind of thing for a living you know.)
Donate your Quid For Quidenham here. Thank you.
East Anglia's Children's Hospices
.
I've said it before, but they do a marvellous job there - without them our lives (and the lives of many other families) would be so much worse. The worrying and depressing thing about that, however, is that they're a charity. And as with NANSA (Norfolk and Norwich Scope Association), they have to rely on the goodwill of the public. Maybe that's one of the reasons why they work so bloody hard and provide such a fabulous service - because, unlike the NHS, they just can't afford to be complacent. Or lazy. Or incompetent. Or arrogant. Or inefficient.
So thank you, again, to Quidenham and the smashing people there.
If you fancy giving them some money, by the way (remember: it's for kids, real-live human being kids who are in the state they're in through absolutely no fault of their own) then please visit their site (below) and donate. Even if it's just a quid.
In fact, I reckon they should start up a campaign called 'A Quid For Quidenham'. Good huh?
(If you're reading this EACH, how about it? Please get in touch if you want me to flesh it out a bit - I do this kind of thing for a living you know.)
Donate your Quid For Quidenham here. Thank you.
East Anglia's Children's Hospices
.
Monday, 30 May 2011
Throw Those Curtains Wide
Last week I was watching The Human Body, a new BBC television programme that details all of our inner workings. In one section it showed how the brain develops and makes these amazing connections even, and especially, while in the womb. The same amazing connections and developments that Maggie’s brain had made - that were then taken away from her in just a matter of minutes.
It’s something that I – we – have been thinking a lot about recently. Mostly because we have Alice providing all the evidence we need that Maggie too would have been a fantastically bright and intelligent child.
It’s odd that we often have to remind ourselves that Maggie wasn’t meant to be this way. Through no fault of her own, through no fault of ours, she had her life ruined. She wasn’t meant to be a severely disabled child.
Of course, it’s utterly heartbreaking. So much so that I don’t think I’ll ever reach a point where I’ll no longer feel sad for what she lost and for what she could have been. And sad, too, for all the sadness and difficulties she’ll have to face throughout her entire life - even long after we’re no longer around to take care of her. That alone is something I can barely bring myself to think about.
But what Maggie’s got, still, are the remnants of a really good brain. It explains why she fights so hard, why she refuses to give up.
For example, you can tell when she reaches out that she understands she should be able to do this – as you can tell it frustrates her so greatly that she can’t. And you can tell when she moves her mouth while watching us eat that she knows she too should be doing the same thing.
So within the sadness of it all there’s also the hope that she’ll continue to fight and continue to make good progress. As she has been doing.
Such as:
We recently moved her into her own room. This came about as a result of her sleeping much better than she previously did. It’s been, on the whole, a great success. Many nights she’ll sleep all the way through. And even on those nights when she doesn’t, she’s only awake for an hour or so and is relatively easy to settle. When she woke last night I was heartened by the fact that she seemed to regard my intervention as something of an intrusion. So I stood outside her door and listened as she got on with the business of getting herself to sleep. It was one of those moments where I just wanted to shout “Go Maggie!”
And obviously, as a result of the better sleep, she’s happier. As are we.
Other, related, things:
I took her to Quidenham last week for a three-day stay. In the car on the way she obviously realised that the journey was longer than the short journeys we normally make. Or maybe she recognised the scenery. Whatever it was, she became very upset. But a different kind of upset – a kind of pleading, howling upset that reached its peak when I handed her over to one of the carers. It was completely heartbreaking because I knew she understood quite clearly that I was going to leave her. I didn’t want to leave her and I almost took her back with me. But at the same time I was pleased to see that she understood what was going on. Because many of the children who go to Quidenham have no idea whether their parents are there or not.
Her favourite television programme, by a mile, is Balamory. If it’s not Balamory she’s not happy. It can be annoying but, at the same time, I love that she gets all arsey if it’s not her favourite programme. Just like any other kid would.
Her favourite song, also by a mile, is Elbow’s One Day Like This. No matter what mood she’s in, just playing that song will instantly lift her spirits. What’s more, she loves to hear me sing it to her (I don’t do a bad job either). If I’m holding her, she cranes her head right round just so she can see my face while I’m singing. It works when I sing it to her in the car and at night when she’s upset at going to bed. Her favourite line appears to be: “When my face is chamois creased.” So god bless Guy Garvey – if anyone knows him, tell him I owe him a few pints and a big kiss.
(Yes, the lower case ‘g’ in god was intentional.)
She likes standing in her standing frame - despite the heavy boots she has to wear to keep her feet flat, and despite the splints wrapped around her legs. She obviously appreciates being upright like that. Good. It’ll stand her in good stead if she ever gets strong enough to hold her own weight.
She was recently fitted for two new chairs – a pushchair and a, well, chair. For the first time ever, she seemed relatively comfortable and happy to be sat down. The downside was that these chairs aren’t funded by the NHS. They ruin her life, they give her appalling care, and they don’t pay for a few things that might help her, and us, cope better. In this case, however, we were ‘lucky’ because Maggie is entitled to something called Continuing Care due to the severity of her disability. So they made up the shortfall. Were she not entitled to it, we’d have had to have gone to charities. Or to god knows where.
It’s here where I’ve been thinking a lot recently about how we have to start getting serious about her future. I feel, many times, as though we’re letting her down: I’m worried that we just won’t be able to provide properly for her. It’s like we’re caught in this trap that we can’t really see a way out of. And it seems, much to our embarrassment and reluctance, that relying on charities or the fucking NHS is the only way we can go. We’re not alone, of course. There are thousands of families out there just like us – feeling sad and pathetic because they have no other recourse.
This explains, I think, why I’m starting to lose patience with people who – unlike Maggie – are in difficult positions that, really, are their own fault. And I hate feeling that way about them. The other day I was listening to a programme about drug users who were going to lose their support as part of the cuts. In the past, I’d have had every sympathy. But now, now that I’m the father of a disabled daughter whose condition is no fault of her own (and who fights so fucking hard against her condition every single day), my response was: “Don’t take drugs. There. That’s your problems sorted. Use your brain - the one that wasn’t damaged at birth, that has all the right connections working and everything in place – and fight. Fight just like my daughter does. And feel ashamed of yourself if you don’t.”
I know that’s a terrible way to think (and I don’t really think that way – not when I’m being completely rational). I don’t want to sound like that Richard Littlejohn twat. But there are times when I can’t help it. Especially when I’m thinking about Maggie.
I’ll end on a positive note: Elbow's marvellous One Day Like This (which I've written about on my music blog here). When you listen to it, think of Maggie’s smile. It makes her very happy indeed.
It’s something that I – we – have been thinking a lot about recently. Mostly because we have Alice providing all the evidence we need that Maggie too would have been a fantastically bright and intelligent child.
It’s odd that we often have to remind ourselves that Maggie wasn’t meant to be this way. Through no fault of her own, through no fault of ours, she had her life ruined. She wasn’t meant to be a severely disabled child.
Of course, it’s utterly heartbreaking. So much so that I don’t think I’ll ever reach a point where I’ll no longer feel sad for what she lost and for what she could have been. And sad, too, for all the sadness and difficulties she’ll have to face throughout her entire life - even long after we’re no longer around to take care of her. That alone is something I can barely bring myself to think about.
But what Maggie’s got, still, are the remnants of a really good brain. It explains why she fights so hard, why she refuses to give up.
For example, you can tell when she reaches out that she understands she should be able to do this – as you can tell it frustrates her so greatly that she can’t. And you can tell when she moves her mouth while watching us eat that she knows she too should be doing the same thing.
So within the sadness of it all there’s also the hope that she’ll continue to fight and continue to make good progress. As she has been doing.
Such as:
We recently moved her into her own room. This came about as a result of her sleeping much better than she previously did. It’s been, on the whole, a great success. Many nights she’ll sleep all the way through. And even on those nights when she doesn’t, she’s only awake for an hour or so and is relatively easy to settle. When she woke last night I was heartened by the fact that she seemed to regard my intervention as something of an intrusion. So I stood outside her door and listened as she got on with the business of getting herself to sleep. It was one of those moments where I just wanted to shout “Go Maggie!”
And obviously, as a result of the better sleep, she’s happier. As are we.
Other, related, things:
I took her to Quidenham last week for a three-day stay. In the car on the way she obviously realised that the journey was longer than the short journeys we normally make. Or maybe she recognised the scenery. Whatever it was, she became very upset. But a different kind of upset – a kind of pleading, howling upset that reached its peak when I handed her over to one of the carers. It was completely heartbreaking because I knew she understood quite clearly that I was going to leave her. I didn’t want to leave her and I almost took her back with me. But at the same time I was pleased to see that she understood what was going on. Because many of the children who go to Quidenham have no idea whether their parents are there or not.
Her favourite television programme, by a mile, is Balamory. If it’s not Balamory she’s not happy. It can be annoying but, at the same time, I love that she gets all arsey if it’s not her favourite programme. Just like any other kid would.
Her favourite song, also by a mile, is Elbow’s One Day Like This. No matter what mood she’s in, just playing that song will instantly lift her spirits. What’s more, she loves to hear me sing it to her (I don’t do a bad job either). If I’m holding her, she cranes her head right round just so she can see my face while I’m singing. It works when I sing it to her in the car and at night when she’s upset at going to bed. Her favourite line appears to be: “When my face is chamois creased.” So god bless Guy Garvey – if anyone knows him, tell him I owe him a few pints and a big kiss.
(Yes, the lower case ‘g’ in god was intentional.)
She likes standing in her standing frame - despite the heavy boots she has to wear to keep her feet flat, and despite the splints wrapped around her legs. She obviously appreciates being upright like that. Good. It’ll stand her in good stead if she ever gets strong enough to hold her own weight.
She was recently fitted for two new chairs – a pushchair and a, well, chair. For the first time ever, she seemed relatively comfortable and happy to be sat down. The downside was that these chairs aren’t funded by the NHS. They ruin her life, they give her appalling care, and they don’t pay for a few things that might help her, and us, cope better. In this case, however, we were ‘lucky’ because Maggie is entitled to something called Continuing Care due to the severity of her disability. So they made up the shortfall. Were she not entitled to it, we’d have had to have gone to charities. Or to god knows where.
It’s here where I’ve been thinking a lot recently about how we have to start getting serious about her future. I feel, many times, as though we’re letting her down: I’m worried that we just won’t be able to provide properly for her. It’s like we’re caught in this trap that we can’t really see a way out of. And it seems, much to our embarrassment and reluctance, that relying on charities or the fucking NHS is the only way we can go. We’re not alone, of course. There are thousands of families out there just like us – feeling sad and pathetic because they have no other recourse.
This explains, I think, why I’m starting to lose patience with people who – unlike Maggie – are in difficult positions that, really, are their own fault. And I hate feeling that way about them. The other day I was listening to a programme about drug users who were going to lose their support as part of the cuts. In the past, I’d have had every sympathy. But now, now that I’m the father of a disabled daughter whose condition is no fault of her own (and who fights so fucking hard against her condition every single day), my response was: “Don’t take drugs. There. That’s your problems sorted. Use your brain - the one that wasn’t damaged at birth, that has all the right connections working and everything in place – and fight. Fight just like my daughter does. And feel ashamed of yourself if you don’t.”
I know that’s a terrible way to think (and I don’t really think that way – not when I’m being completely rational). I don’t want to sound like that Richard Littlejohn twat. But there are times when I can’t help it. Especially when I’m thinking about Maggie.
I’ll end on a positive note: Elbow's marvellous One Day Like This (which I've written about on my music blog here). When you listen to it, think of Maggie’s smile. It makes her very happy indeed.
Monday, 16 May 2011
Saturday, 14 May 2011
At Last, Some Sleep
It’s been a while. For which, apologies.
The big news here is that Maggie has slept through – with occasional stirrings – for the past three nights. Incredible. Of course, given how it’s been for the past year and a half, we’re not counting our chickens. It could all go wrong at any time.
As a result of the sleep, she’s been happier and more responsive. In fact, during the day she’s most often in a very good mood indeed. She still demands, and gets, all the attention but even with the constant attachment, she’s been great.
Plus she’s been happier in the car. A lot happier in the car. If we sing to her she even manages to be quiet for the whole journey. That’s some progress.
Of course, it’s not all been great. But certain things have definitely improved.
More very soon. It’s late.
The big news here is that Maggie has slept through – with occasional stirrings – for the past three nights. Incredible. Of course, given how it’s been for the past year and a half, we’re not counting our chickens. It could all go wrong at any time.
As a result of the sleep, she’s been happier and more responsive. In fact, during the day she’s most often in a very good mood indeed. She still demands, and gets, all the attention but even with the constant attachment, she’s been great.
Plus she’s been happier in the car. A lot happier in the car. If we sing to her she even manages to be quiet for the whole journey. That’s some progress.
Of course, it’s not all been great. But certain things have definitely improved.
More very soon. It’s late.
Saturday, 30 April 2011
Tuesday, 19 April 2011
Friday, 8 April 2011
Sleep Debt Snatches*
There are occasions when I really think I can't do this. Those occasions are almost always in the middle of the night.
Maggie has been awake since 11.30pm. It's now almost 4am and she's still up there, still not sleeping. She's been fed, she's been changed, she's been cuddled and rocked and patted and soothed and she's still not sleeping. I wish this was atypical. But it isn't.
Over at Mama Lewis, Stacie and her husband are trying what they call The Sleep Experiment. As far as I can tell, this is essentially treating her daughter, May, as if she were just a normal little girl. That is: "Go to sleep! You don't need to be cuddled and cajoled all night!"
We need to do something similar, I think. The problem we've had with Maggie, ever since birth, is her vomiting. We've always had to be mindful of not just putting her down to sleep. Because she throws up. So there's been a lot of cuddling and patting. Plus, of course, the sheer fact of just wanting her to go to sleep after the end of a tiring day. Why would we want to sit there in the evening listening to her cry herself to sleep for hours on end?
As it is, she does that anyway - even with our constant interventions. Every evening it's the same. She's fed from 6pm for an hour and then taken upstairs at around 7.30pm when we can be reasonably confident that her stomach has settled enough for her not to throw up. Then we spend the next hour or two trying to get her to sleep. If we're lucky, we can sit down to eat at around 8.30pm. Most of the time it's after 9pm. Then we have our dinner, watch a bit of telly (because we're too tired and fucked off to do anything else) and hope that this time she won't wake around midnight. But she always does. And then it's into those dark, depressing hours where we're cuddling and patting and feeding and soothing her. Those dark, depressing hours where I occasionally think I can't do this anymore.
Tonight, at around 3am, I woke Shannon with a start because I fell onto the bed while holding Maggie. I fell because I fell asleep on my feet. Of course, Maggie was startled and off she went with all the howling and screaming. Massive fucking sigh. I say sigh but it was more anger and sadness and exasperation.
I don't want to carry on like this anymore. Night after night after night.
* Sleep Debt Snatches is the title of a great B-side by The Fall (who never fail to cheer me up).
Maggie has been awake since 11.30pm. It's now almost 4am and she's still up there, still not sleeping. She's been fed, she's been changed, she's been cuddled and rocked and patted and soothed and she's still not sleeping. I wish this was atypical. But it isn't.
Over at Mama Lewis, Stacie and her husband are trying what they call The Sleep Experiment. As far as I can tell, this is essentially treating her daughter, May, as if she were just a normal little girl. That is: "Go to sleep! You don't need to be cuddled and cajoled all night!"
We need to do something similar, I think. The problem we've had with Maggie, ever since birth, is her vomiting. We've always had to be mindful of not just putting her down to sleep. Because she throws up. So there's been a lot of cuddling and patting. Plus, of course, the sheer fact of just wanting her to go to sleep after the end of a tiring day. Why would we want to sit there in the evening listening to her cry herself to sleep for hours on end?
As it is, she does that anyway - even with our constant interventions. Every evening it's the same. She's fed from 6pm for an hour and then taken upstairs at around 7.30pm when we can be reasonably confident that her stomach has settled enough for her not to throw up. Then we spend the next hour or two trying to get her to sleep. If we're lucky, we can sit down to eat at around 8.30pm. Most of the time it's after 9pm. Then we have our dinner, watch a bit of telly (because we're too tired and fucked off to do anything else) and hope that this time she won't wake around midnight. But she always does. And then it's into those dark, depressing hours where we're cuddling and patting and feeding and soothing her. Those dark, depressing hours where I occasionally think I can't do this anymore.
Tonight, at around 3am, I woke Shannon with a start because I fell onto the bed while holding Maggie. I fell because I fell asleep on my feet. Of course, Maggie was startled and off she went with all the howling and screaming. Massive fucking sigh. I say sigh but it was more anger and sadness and exasperation.
I don't want to carry on like this anymore. Night after night after night.
* Sleep Debt Snatches is the title of a great B-side by The Fall (who never fail to cheer me up).
Sunday, 3 April 2011
HMD!
Happy Mother's Day to Shannon, easily the best mum working in the business today. Both Maggie and Alice are very lucky to have her. So am I.
Below, some pictures of the girls taken last Sunday on my old roll film Canon Canonet (which, along with the cheap 1 hour ASDA processing, accounts for the poor quality).
Below, some pictures of the girls taken last Sunday on my old roll film Canon Canonet (which, along with the cheap 1 hour ASDA processing, accounts for the poor quality).
Saturday, 2 April 2011
Competition Time!
There's a poll taking place on something called Circle of Moms to find the 'Top 25 Most Inspiring Families'. Our blog was selected as one of the candidates. Initially I agreed for us to be included but then asked for us to be removed.
The thing is, it's not an objective poll. Anyone can vote. Which means, for example, that I could ask my 1300 Twitter followers - plus my friends who have thousands more followers - to visit the site and vote.
And what would that prove? That this blog and our family is the most 'inspiring'? No, it would simply prove that I was good at getting loads of people to click a button. Fabulous news for Circle of Moms' marketing department who could use the increase in hits to attract more advertisers.
(If they were genuinely interested in sharing inspiring blogs with their members, they'd simply create a list of those blogs, surely?)
In itself, I don't have a problem with their tactics. I work in advertising, after all. What I do have a problem with is that it has a whiff of exploitation about it. Which is to say: I'm not having my daughter used as a promotional tool for something I wasn't even aware of 24 hours ago.
In fact, I'm not having my daughter used as a promotional tool for anything.
* Addendum: Reading this back, I can see why I might appear over-sensitive about this. It's just that I get very touchy about Maggie and, if you like, her place in the world. I know that this blog itself could be seen as 'promotion' or what have you - and even here, I'm often uncomfortable, thinking that it's us expoliting her in some way. If you see what I mean.
Oh, I don't know - maybe I just need to get a grip and calm down a bit.
The thing is, it's not an objective poll. Anyone can vote. Which means, for example, that I could ask my 1300 Twitter followers - plus my friends who have thousands more followers - to visit the site and vote.
And what would that prove? That this blog and our family is the most 'inspiring'? No, it would simply prove that I was good at getting loads of people to click a button. Fabulous news for Circle of Moms' marketing department who could use the increase in hits to attract more advertisers.
(If they were genuinely interested in sharing inspiring blogs with their members, they'd simply create a list of those blogs, surely?)
In itself, I don't have a problem with their tactics. I work in advertising, after all. What I do have a problem with is that it has a whiff of exploitation about it. Which is to say: I'm not having my daughter used as a promotional tool for something I wasn't even aware of 24 hours ago.
In fact, I'm not having my daughter used as a promotional tool for anything.
* Addendum: Reading this back, I can see why I might appear over-sensitive about this. It's just that I get very touchy about Maggie and, if you like, her place in the world. I know that this blog itself could be seen as 'promotion' or what have you - and even here, I'm often uncomfortable, thinking that it's us expoliting her in some way. If you see what I mean.
Oh, I don't know - maybe I just need to get a grip and calm down a bit.
Friday, 18 March 2011
Sunday, 13 March 2011
The Days Are Just Packed
We haven’t updated this blog in a while. You may have noticed. That’s because there’s been too much to write about, rather than too little. It never stops.
Over the past few weeks Maggie has been up and down. Which is fairly normal for her. She managed a couple of nights sleeping through but on the whole it’s been the usual up all night nonsense. We have, Shannon and I, been sleeping in separate rooms. One night with Maggie, one night without. It’s the only way we can get some rest.
I’ve often thought that this scenario would be just the kind of thing, if we were that way inclined, to get social workers rushing to help us. Because it’s effectively breaking our family apart. We are, I suppose, somewhat dysfunctional in that respect. And that’s not even taking into account the lack of attention that Alice receives.
But, of course, we have nothing to do with social workers. Or, rather, they have nothing to do with us. If one of us broke down or walked out, maybe then they’d come running. But as it is, we’re coping. Or muddling through (as I often say because I don’t want to bore people with the details of how shit things are).
Some weeks ago I met someone who, although knowing our situation, asked if our muddling through was any different, really, from anyone else’s muddling through. He meant, of course, his own. I briefly explained what it was like, living like this, but I could tell he wasn’t convinced. Maybe he would have been convinced had I, as well as briefly detailing the (im)practicalities of dealing with Maggie on a day-to-day basis, included how utterly sad and fearful and angry we are all of the time. I mean, all of the time. Maybe I should have got him to imagine, just for a minute, what it must be like to be the parent of a severely disabled child and how devastating it is to know that she will always have a very tough and sad life.
I don’t know. At the time, his comment didn’t bother me too much. But it’s been festering. It’s not that I think I need to prove to him – or anyone else – how hard our lives are but more that it’s actually got me thinking about just that: how hard our lives are. And at the same time, it’s got me thinking about how well we cope. Bully for us.
So yes, we’re muddling through.
Maggie is still underweight. She still throws up a lot. She still sleeps very badly and doesn’t sleep enough. She is a constant source of worry to us. Coming up sometime in the next few weeks: an operation where she will have a new peg fitted that will go directly into her bowels. I may have mentioned this before. She’ll need to be hooked up to a feeding machine for 18 hours a day. But because it’ll hopefully prevent her from vomiting, she can be fed overnight.
There’s muddling through for you: having a tube running from a machine pumping milk directly into your bowels for eighteen hours a day because you’re so underweight and frail and because you’re unable to take food even through your stomach, let alone your mouth.
While I remember: I deleted a comment on an earlier post by someone (anonymous, of course) who asked why we keep going back to the NHS if we think it’s so rubbish. They then suggested we go private.
Here’s my first answer: fuck you.
Here’s my second answer: Why should we go private? We pay for the NHS. As we all do. Is it really so unreasonable of us to expect a good level of care for our daughter? Is it really so unreasonable of us to be angry and saddened when we don’t get a good level of care?
Here’s my third answer: we couldn’t even begin to think about going private. One of the things about having a severely disabled child (I’m amazed that I even have to state this) is that it affects our income on all sorts of levels. Stacie Lewis has spoken about the extra costs of caring for a disabled child on one of her recent blog posts so I won’t go into that here. But I will point out how it adversely affects our ability to earn. That’s an understatement. This will be the case for a long time to come.
So yes, go private. Right. Fucking idiot.
In Alice news: it’s all good. So good, in fact, that it’s difficult sometimes to know what to say about her beyond the fact that she’s an absolute delight and very happy with it. She’s not walking properly yet, which is a little disappointing, but we’re not worried. She can do it, we’re sure: she just doesn’t seem to want to.
She has a big mouthful of teeth. And she says this a lot: hellooooo! And bye byeee! She’s very, very cute. And very beautiful.
In positive Maggie news: well, you saw the video. She seems to be brighter and more alert as each day passes. She reaches out quite well, in her haphazard way, and sometimes forgets to unclench her fist. But she reaches out and that’s a good thing. She seems, on the whole, to be happier overall. That is, when she’s not too tired or suffering with wind or reflux or vomiting. She smiles a lot and is generally more content.
That smile of hers: it’s sometimes all we need. She’s very beautiful too. And I’m still knocked out by those amazing eyelashes.
We need to take her to the dentist. As anyone who has seen her knows, she has a very pronounced upper gum. And quite a weak lower jaw (which, given that she has never sucked, swallowed or chewed, isn’t that surprising). Her teeth are starting to come through but it looks as though her top two teeth are pushing – forward, rather than down – through her gums. It’s quite odd.
She still doesn’t tolerate the car seat or the pushchair and this is made all the more intolerable, for us, because she screams and shouts a lot louder than she previously did. Real full-throated stuff. Which, in a way, is reassuring.
She babbles on occasion. Especially when Shannon holds her up so she can talk to herself through the bathroom mirror. She loves doing that.
She hates lying down on her front and, I have to confess, we really should make her do this more often. But anything for a quiet life. Sort of.
She’s a full-time job, our Maggie. More soon.
Over the past few weeks Maggie has been up and down. Which is fairly normal for her. She managed a couple of nights sleeping through but on the whole it’s been the usual up all night nonsense. We have, Shannon and I, been sleeping in separate rooms. One night with Maggie, one night without. It’s the only way we can get some rest.
I’ve often thought that this scenario would be just the kind of thing, if we were that way inclined, to get social workers rushing to help us. Because it’s effectively breaking our family apart. We are, I suppose, somewhat dysfunctional in that respect. And that’s not even taking into account the lack of attention that Alice receives.
But, of course, we have nothing to do with social workers. Or, rather, they have nothing to do with us. If one of us broke down or walked out, maybe then they’d come running. But as it is, we’re coping. Or muddling through (as I often say because I don’t want to bore people with the details of how shit things are).
Some weeks ago I met someone who, although knowing our situation, asked if our muddling through was any different, really, from anyone else’s muddling through. He meant, of course, his own. I briefly explained what it was like, living like this, but I could tell he wasn’t convinced. Maybe he would have been convinced had I, as well as briefly detailing the (im)practicalities of dealing with Maggie on a day-to-day basis, included how utterly sad and fearful and angry we are all of the time. I mean, all of the time. Maybe I should have got him to imagine, just for a minute, what it must be like to be the parent of a severely disabled child and how devastating it is to know that she will always have a very tough and sad life.
I don’t know. At the time, his comment didn’t bother me too much. But it’s been festering. It’s not that I think I need to prove to him – or anyone else – how hard our lives are but more that it’s actually got me thinking about just that: how hard our lives are. And at the same time, it’s got me thinking about how well we cope. Bully for us.
So yes, we’re muddling through.
Maggie is still underweight. She still throws up a lot. She still sleeps very badly and doesn’t sleep enough. She is a constant source of worry to us. Coming up sometime in the next few weeks: an operation where she will have a new peg fitted that will go directly into her bowels. I may have mentioned this before. She’ll need to be hooked up to a feeding machine for 18 hours a day. But because it’ll hopefully prevent her from vomiting, she can be fed overnight.
There’s muddling through for you: having a tube running from a machine pumping milk directly into your bowels for eighteen hours a day because you’re so underweight and frail and because you’re unable to take food even through your stomach, let alone your mouth.
While I remember: I deleted a comment on an earlier post by someone (anonymous, of course) who asked why we keep going back to the NHS if we think it’s so rubbish. They then suggested we go private.
Here’s my first answer: fuck you.
Here’s my second answer: Why should we go private? We pay for the NHS. As we all do. Is it really so unreasonable of us to expect a good level of care for our daughter? Is it really so unreasonable of us to be angry and saddened when we don’t get a good level of care?
Here’s my third answer: we couldn’t even begin to think about going private. One of the things about having a severely disabled child (I’m amazed that I even have to state this) is that it affects our income on all sorts of levels. Stacie Lewis has spoken about the extra costs of caring for a disabled child on one of her recent blog posts so I won’t go into that here. But I will point out how it adversely affects our ability to earn. That’s an understatement. This will be the case for a long time to come.
So yes, go private. Right. Fucking idiot.
In Alice news: it’s all good. So good, in fact, that it’s difficult sometimes to know what to say about her beyond the fact that she’s an absolute delight and very happy with it. She’s not walking properly yet, which is a little disappointing, but we’re not worried. She can do it, we’re sure: she just doesn’t seem to want to.
She has a big mouthful of teeth. And she says this a lot: hellooooo! And bye byeee! She’s very, very cute. And very beautiful.
In positive Maggie news: well, you saw the video. She seems to be brighter and more alert as each day passes. She reaches out quite well, in her haphazard way, and sometimes forgets to unclench her fist. But she reaches out and that’s a good thing. She seems, on the whole, to be happier overall. That is, when she’s not too tired or suffering with wind or reflux or vomiting. She smiles a lot and is generally more content.
That smile of hers: it’s sometimes all we need. She’s very beautiful too. And I’m still knocked out by those amazing eyelashes.
We need to take her to the dentist. As anyone who has seen her knows, she has a very pronounced upper gum. And quite a weak lower jaw (which, given that she has never sucked, swallowed or chewed, isn’t that surprising). Her teeth are starting to come through but it looks as though her top two teeth are pushing – forward, rather than down – through her gums. It’s quite odd.
She still doesn’t tolerate the car seat or the pushchair and this is made all the more intolerable, for us, because she screams and shouts a lot louder than she previously did. Real full-throated stuff. Which, in a way, is reassuring.
She babbles on occasion. Especially when Shannon holds her up so she can talk to herself through the bathroom mirror. She loves doing that.
She hates lying down on her front and, I have to confess, we really should make her do this more often. But anything for a quiet life. Sort of.
She’s a full-time job, our Maggie. More soon.
Thursday, 24 February 2011
Anniversary
It's been a year today since Maggie came home from the hospital. She'd spent the first five months of her life there.
I think that overall we - and she - have done well this past year. But perhaps not well enough. It's been very hard.
Here she is, from a few weeks ago, reading one of her favourite books. As you'll hear, she was struggling a bit with a cold. As she is right now.
I think that overall we - and she - have done well this past year. But perhaps not well enough. It's been very hard.
Here she is, from a few weeks ago, reading one of her favourite books. As you'll hear, she was struggling a bit with a cold. As she is right now.
Tuesday, 25 January 2011
Our Beloved NHS
You know how I always seem to be banging on about NHS idiots?
I took Maggie for her flu vaccine today. Before the nurse administered the jab I asked if she was aware that Maggie had cerebral palsy, to which she answered yes. I then asked a number of questions about how the jab would affect her, pointing out that she has difficulty breathing at night and how, in general, she's not very strong. She assured me that Maggie would be fine and that maybe I should give her a little bit of paracetamol.
Earlier this evening we got a call from the doctor: they'd mistakenly given her the adult vaccine. We were told to look out for a high temperature and that there was a (1 in 100) possibility of this leading to convulsions and seizures. We need to keep a good eye on her for the next 48 and 72 hours.
A possibility of convulsions and seizures in a child with cerebral palsy.
So far she seems ok. But we've spent the whole night worrying, constantly checking on her. The odd thing though is that she went to sleep straight away when I put her to bed this evening. She never does that. And she's also not stirred once. She never does that either.
As I've constantly said about the NHS: they only ever make our lives more difficult.
I took Maggie for her flu vaccine today. Before the nurse administered the jab I asked if she was aware that Maggie had cerebral palsy, to which she answered yes. I then asked a number of questions about how the jab would affect her, pointing out that she has difficulty breathing at night and how, in general, she's not very strong. She assured me that Maggie would be fine and that maybe I should give her a little bit of paracetamol.
Earlier this evening we got a call from the doctor: they'd mistakenly given her the adult vaccine. We were told to look out for a high temperature and that there was a (1 in 100) possibility of this leading to convulsions and seizures. We need to keep a good eye on her for the next 48 and 72 hours.
A possibility of convulsions and seizures in a child with cerebral palsy.
So far she seems ok. But we've spent the whole night worrying, constantly checking on her. The odd thing though is that she went to sleep straight away when I put her to bed this evening. She never does that. And she's also not stirred once. She never does that either.
As I've constantly said about the NHS: they only ever make our lives more difficult.
Sunday, 23 January 2011
Hair Raising
Yesterday Maggie held on to her hairbrush and brought it up to her head. It doesn't sound like much but it is. It really is.
Thursday, 20 January 2011
Riven Vincent
As everyone has probably seen, there's a big story at the moment about a mother who, as a result of a lack of respite help from her local authority, is considering putting her severely disabled child into care. More details can be found here: PM criticised on Mumsnet by mother of disabled child.
I wasn't going to comment on this story because I worried that it would seem that I'm only responding out of self-interest. And on a more emotional level, it's far too close to the bone. It's extremely difficult to talk about, and think about, rationally. One of the important lessons we've learned over this past year or so is that you get through all of this day by day. To now sit and think about Maggie's future being affected by government cuts would make this process much more difficult.
What I will say, however, is that I think it's utterly fucking shameful that we, as a society, can't look after disabled children, and their families, properly. Even if I wasn't personally affected, I would think that - as I'm sure any reasonable person would.
I wasn't going to comment on this story because I worried that it would seem that I'm only responding out of self-interest. And on a more emotional level, it's far too close to the bone. It's extremely difficult to talk about, and think about, rationally. One of the important lessons we've learned over this past year or so is that you get through all of this day by day. To now sit and think about Maggie's future being affected by government cuts would make this process much more difficult.
What I will say, however, is that I think it's utterly fucking shameful that we, as a society, can't look after disabled children, and their families, properly. Even if I wasn't personally affected, I would think that - as I'm sure any reasonable person would.
Monday, 10 January 2011
January Stuff
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.
Monday, 13 December 2010
Off The Boyle
Last week on Channel 4 Frankie Boyle made the following jokes about Katie (Jordan) Price’s eight-year-old son, who is blind, suffers from autism, gains weight easily and can barely walk:
“Jordan and Peter Andre are still fighting each other over custody of Harvey - eventually one of them will lose and will have to keep him.”
“I have a theory about the reason Jordan married a cage fighter - she needed a man strong enough to stop Harvey from fucking her.”
I think Boyle should be absolutely free to say whatever he likes, about whoever he likes, to whoever he likes. And in turn, I – and anybody else – should be free to call him a cunt.
I’ve never rated Boyle. I always thought he was merely a sanitised version of the great Jerry Sadowitz. Boyle always seemed to be far too pleased with himself about being controversial. More to the point, he’s just not that funny – any halfwit could sit on a panel show trotting out shocking lines. I could do it, no problem.
I think the main problem I have with Boyle’s joke about Harvey Price is that he played it very safe. It’s not like he picked on a random mother and her disabled child. He wouldn’t have the balls to do that. He picked on Katie Price because he knew there would be quite a few people out there who would think it only right that she was the butt of that kind of joke. Which makes him much worse – because he used a disabled child simply to score a very cheap and easy joke against a very easy target. A cursory glance through the comments on blogs etc. bear this out – many people defending the joke on the grounds simply that it’s attacking Katie Price*.
The thing is, we’ve all received those kinds of jokes as texts or have heard them or told them to friends. What we haven’t done, however, is broadcast them on a public platform. He knew full well that Katie Price would hear the joke. And what does that say about him? That he thinks it’s fine and appropriate to belittle a disabled child knowing that his mother would hear it and be greatly upset about it? When we tell those kinds of jokes we tell them quietly and with a sense of knowing that it’s all a bit distasteful. It’s not hypocrisy to tell those jokes that way – it’s just plain decency. Let’s face it, what kind of nasty, spiteful cunt would go out of his way to deliberately upset the mother of a disabled child?
I don’t know, it’s entirely possible that people have made jokes about Maggie. But I haven’t heard them. And I would hope that anyone making those jokes would at least have the basic fucking decency to make sure that I didn’t hear them.
But as I said, I think Boyle should be free to tell whatever jokes he likes. I’d be totally against censoring him or prosecuting him. I just wish that we could get a real sense of what kind of a cheap bastard he is. He isn’t breaking down barriers or pushing the boundaries. He’s not Lenny Bruce or Bill Hicks or Jerry Sadowitz. He’s just a dime a dozen gag man who believes that saying shocking things is a shortcut to being funny.
Oh, and I also found out that Boyle once said the following about Lewis Hamilton and his brother who suffers from cerebral palsy – y’know, as Maggie does.
"Lewis Hamilton (to his brother): I won a championship today, what did you do?
Brother: I drank from a fucking cup Lewis. Ok!"
* I’ve never understood why we’re all supposed to hate Katie Price. As I’ve never understood why we’re also supposed to hate the likes of Kerry Katona or Cheryl Cole or even Cher, the young girl on X-Factor. Some of the comments I see on Twitter are just ridiculous – the hatred is visceral. I wouldn’t mind so much if these same people were attacking the world’s real villains but they always seem to go for these kinds of working-class girls who, presumably, have got a bit too big for their boots or something. As with Boyle, it’s cheap, it’s nasty and it’s also quite misogynistic. I wish they’d stop it - or at least dish out some of their disdain for people who really deserve it (as a friend of mine on Twitter routinely, and rightly, does).
“Jordan and Peter Andre are still fighting each other over custody of Harvey - eventually one of them will lose and will have to keep him.”
“I have a theory about the reason Jordan married a cage fighter - she needed a man strong enough to stop Harvey from fucking her.”
I think Boyle should be absolutely free to say whatever he likes, about whoever he likes, to whoever he likes. And in turn, I – and anybody else – should be free to call him a cunt.
I’ve never rated Boyle. I always thought he was merely a sanitised version of the great Jerry Sadowitz. Boyle always seemed to be far too pleased with himself about being controversial. More to the point, he’s just not that funny – any halfwit could sit on a panel show trotting out shocking lines. I could do it, no problem.
I think the main problem I have with Boyle’s joke about Harvey Price is that he played it very safe. It’s not like he picked on a random mother and her disabled child. He wouldn’t have the balls to do that. He picked on Katie Price because he knew there would be quite a few people out there who would think it only right that she was the butt of that kind of joke. Which makes him much worse – because he used a disabled child simply to score a very cheap and easy joke against a very easy target. A cursory glance through the comments on blogs etc. bear this out – many people defending the joke on the grounds simply that it’s attacking Katie Price*.
The thing is, we’ve all received those kinds of jokes as texts or have heard them or told them to friends. What we haven’t done, however, is broadcast them on a public platform. He knew full well that Katie Price would hear the joke. And what does that say about him? That he thinks it’s fine and appropriate to belittle a disabled child knowing that his mother would hear it and be greatly upset about it? When we tell those kinds of jokes we tell them quietly and with a sense of knowing that it’s all a bit distasteful. It’s not hypocrisy to tell those jokes that way – it’s just plain decency. Let’s face it, what kind of nasty, spiteful cunt would go out of his way to deliberately upset the mother of a disabled child?
I don’t know, it’s entirely possible that people have made jokes about Maggie. But I haven’t heard them. And I would hope that anyone making those jokes would at least have the basic fucking decency to make sure that I didn’t hear them.
But as I said, I think Boyle should be free to tell whatever jokes he likes. I’d be totally against censoring him or prosecuting him. I just wish that we could get a real sense of what kind of a cheap bastard he is. He isn’t breaking down barriers or pushing the boundaries. He’s not Lenny Bruce or Bill Hicks or Jerry Sadowitz. He’s just a dime a dozen gag man who believes that saying shocking things is a shortcut to being funny.
Oh, and I also found out that Boyle once said the following about Lewis Hamilton and his brother who suffers from cerebral palsy – y’know, as Maggie does.
"Lewis Hamilton (to his brother): I won a championship today, what did you do?
Brother: I drank from a fucking cup Lewis. Ok!"
* I’ve never understood why we’re all supposed to hate Katie Price. As I’ve never understood why we’re also supposed to hate the likes of Kerry Katona or Cheryl Cole or even Cher, the young girl on X-Factor. Some of the comments I see on Twitter are just ridiculous – the hatred is visceral. I wouldn’t mind so much if these same people were attacking the world’s real villains but they always seem to go for these kinds of working-class girls who, presumably, have got a bit too big for their boots or something. As with Boyle, it’s cheap, it’s nasty and it’s also quite misogynistic. I wish they’d stop it - or at least dish out some of their disdain for people who really deserve it (as a friend of mine on Twitter routinely, and rightly, does).
Thursday, 25 November 2010
MRI Results
This afternoon we had a meeting with all the professionals associated with Maggie's care. It seemed to consist mainly of (dread word) diarising and was, for that reason, a little irritating. And a little pointless.
We were also given the results of Maggie's MRI scan.
The first thing to say is that we need to have another session with Dr Bem to discuss them in detail. They were essentially read out to Shannon while I went in and out the room, trying to quieten Maggie. There was little attempt to translate the results into plain English or for them to be interpreted into something that made sense on a future prognosis level. If you see what I mean.
So there was talk of white matter and grey matter and how Maggie's white matter is very severely damaged. This is the stuff that affects movement and limbs. It is consistent with the damage that was shown at birth.
Her grey matter, while less affected, is, unfortunately, somehow dependent on the quality of her white matter and how communication between the two takes place. For example: while she can clearly see, it could well be that she has little understanding of what she's seeing.
So really there has been no improvement. No magical change. She is a severely brain damaged child and will always be that way. Which is why she is now officially diagnosed with cerebral palsy.
As always, we were unable to get simple answers to simple questions. And that's because, really, there are no simple answers. Every child is different. It's what we're told all the time. While that's frustrating it does, of course, mean that there is some hope that she will be able to defy certain expectations. Or not.
We can only hope.
So far, however, her development has been poor. In terms of things like head growth and general growth. Whereas before we were pinning our hopes on helping her brain to grow through nutrition, it's likely that her brain isn't growing because that's not what her brain is wired to do.
So what we have, in essence, is what we always knew and what we always feared. Of course we were hoping that there would be improvement with her brain. Who wouldn't hope for that?
So in all, it's a very sad day. Which has yet to properly sink in.
We were also given the results of Maggie's MRI scan.
The first thing to say is that we need to have another session with Dr Bem to discuss them in detail. They were essentially read out to Shannon while I went in and out the room, trying to quieten Maggie. There was little attempt to translate the results into plain English or for them to be interpreted into something that made sense on a future prognosis level. If you see what I mean.
So there was talk of white matter and grey matter and how Maggie's white matter is very severely damaged. This is the stuff that affects movement and limbs. It is consistent with the damage that was shown at birth.
Her grey matter, while less affected, is, unfortunately, somehow dependent on the quality of her white matter and how communication between the two takes place. For example: while she can clearly see, it could well be that she has little understanding of what she's seeing.
So really there has been no improvement. No magical change. She is a severely brain damaged child and will always be that way. Which is why she is now officially diagnosed with cerebral palsy.
As always, we were unable to get simple answers to simple questions. And that's because, really, there are no simple answers. Every child is different. It's what we're told all the time. While that's frustrating it does, of course, mean that there is some hope that she will be able to defy certain expectations. Or not.
We can only hope.
So far, however, her development has been poor. In terms of things like head growth and general growth. Whereas before we were pinning our hopes on helping her brain to grow through nutrition, it's likely that her brain isn't growing because that's not what her brain is wired to do.
So what we have, in essence, is what we always knew and what we always feared. Of course we were hoping that there would be improvement with her brain. Who wouldn't hope for that?
So in all, it's a very sad day. Which has yet to properly sink in.
Tuesday, 9 November 2010
A Break
Hello.
Today we took Maggie to Quidenham for a couple of days. It was, as always, really hard saying goodbye. We miss her so much when she's not here.
That said, it's been very difficult these past couple of weeks. Her sleeping has got worse. Shannon and I have barely slept. And as well as being exhausted, I've been getting terrible headaches that I've been unable to shift. On top of that, I think I might have a stomach ulcer.
Poor me.
And poor Shannon who has been feeling extremely delicate and sad and worn out. She's at her wit's end.
We so desperately need this break. For both our physical and mental health.
Maggie's problem - I think - is that she's been suffering very badly with wind. She breathes poorly and snorts and gulps all the time. So she swallows too much air. The wind doesn't just cause her pain, it causes her to vomit - which she's been doing during, and after, every feed. So despite her being on the new higher calorie feed, she's still not putting on weight. Which means she doesn't sleep properly - something that's extremely important for her development.
On and on it goes.
Today we took Maggie to Quidenham for a couple of days. It was, as always, really hard saying goodbye. We miss her so much when she's not here.
That said, it's been very difficult these past couple of weeks. Her sleeping has got worse. Shannon and I have barely slept. And as well as being exhausted, I've been getting terrible headaches that I've been unable to shift. On top of that, I think I might have a stomach ulcer.
Poor me.
And poor Shannon who has been feeling extremely delicate and sad and worn out. She's at her wit's end.
We so desperately need this break. For both our physical and mental health.
Maggie's problem - I think - is that she's been suffering very badly with wind. She breathes poorly and snorts and gulps all the time. So she swallows too much air. The wind doesn't just cause her pain, it causes her to vomit - which she's been doing during, and after, every feed. So despite her being on the new higher calorie feed, she's still not putting on weight. Which means she doesn't sleep properly - something that's extremely important for her development.
On and on it goes.
Tuesday, 26 October 2010
No Thanks From The Loading Bay Ranks *
A photograph of Maggie, taken on August 14th. I like it a great deal not just because she looks peaceful and beautiful but because I remember how this was one of the very few occasions where she got herself to sleep without assistance. She tossed and turned for a bit, and cried, but eventually got there. It was a significant moment and one that hasn't been repeated.
For the past week or so she's been struggling a great deal with a cold. She has trouble breathing and swallowing and her co-ordination is not what it should be. So with her airways blocked, and all that extra phlegm, she's been sleeping very badly. Lots of snorting and tossing and turning - and that's when she's actually asleep. Every night has been a trial. Shannon and I have hardly slept and we're both really feeling it. Shannon more so than me because she's done most of the night care.
At the same time, however, some things are looking good. She seems to be more alert, more with it. She's doing good things with her movements, from head control to reaching out. The physiotherapy people, and the people from Portage, are generally impressed with her. As are the lovely people at Quidenham who tell us every time that they see improvement. She seems a little happier too and maybe that's because she's getting better at coping with all the shit that goes on inside.
And yet - curses - she's still not gaining weight. So her head and brain aren't growing. We were told the other week that this may not just be due to the fact that she throws up a lot. It could also be because she sleeps very poorly. With her snorting and constant irritations she's almost always in light sleep mode, never really reaching that all-important deep sleep. Which is why, under the instructions of the impressive Dr Bem, they're looking at ways of getting her there. Nose clips? Nasal drops? A different sleeping arrangement in her bed?
I mentioned Dr Bem in a previous post: she's Maggie's new consultant. She seems to be very on the ball and very interested in Maggie's care and development. Get this: she actually does stuff and recommends stuff without us having to constantly fucking bang on about it. She's a world away from our previous consultant. So that's a real bonus. It makes us very happy knowing that Maggie has got someone who is genuinely looking out for her. A round of applause for Dr Bem.
I've just read this back and noticed that I used the phrase 'a great deal' twice. Sigh.
Maggie's now on a new feed which contains significantly more calories than her previous feed. It comes ready-made in bottles so there isn't all the pissing about with powder. That's a good thing. The bad thing is that what we've had so far has been vanilla flavoured. It turns my stomach. Especially because, of course, Maggie throws a lot of it back up. So we've been covered in it. My crotch almost always smells of vanilla. We can change it though (the feed, not my crotch) to either strawberry or banana. Fucking hell. What about chocolate or coffee? Or what about, instead, they stop messing about with flavours and just make it neutral - it's not McDonalds.
It's late and Shannon's gone to bed and I'm tapping this out because I always feel a bit guilty when I don't update this blog. Forgive me if I ramble a bit.
We had a great birthday party thing for the girls. Here's a picture of the badges we had made in celebration. Good huh? The idea was that every guest would be given a badge. But we forgot until most of the guests had left. So if you want one - even if you weren't at the party - do let us know.
Loads of people turned up which was, of course, a relief. It made us very happy that so many people did. And everyone brought the girls fabulous gifts.
(By the way, if you're one of those people and you're waiting for your gilt-edged, handwritten thank you card, I can assure you that you will get one. That's because Shannon is very good at things like that. If it were me, you'd get nothing. What do you want, medals?)
But it really did make us very happy. It was a significant milestone and it was lovely to have so many people sharing it with us. I can't wait until next year's - we're going to book a room in a pub. With strippers and everything.
During the party, Alice got lost in the crowd, handed round to whoever fancied holding her. She was, as always, as good as gold. As was Maggie. In fact, she was beautifully behaved. I imagine that most people left wondering why we're always on here moaning about how difficult she is. They were utterly delightful, both of them.
But wait. Let's not get carried away with good news. I've got my obligatory twatting about at the hospital story to tell.
You recall that every time we have anything to do with the hospital there's always a problem? That they always somehow manage to make things more difficult for us rather than easier for us? So naturally, every time we go up there we're always hoping that just this once things will go smoothly.
I took Maggie up for a barium swallow x-ray thing whereby they fill her with some kind of chalky liquid substance (which I suppose is the barium bit) and then x-ray her to see if there are incidences of reflux. So, they said, have you brought her bottle with you so that she can take the barium as she's normally fed? No, I said, because she's not fed with a bottle, she's fed through a tube - as must be mentioned within her extensive notes. There's no mention of that, they said. Typical, I said, bloody typical. (I didn't say 'bloody' of course because the big babies at the hospital have a complete zero tolerance policy on any type of swearing, however mild. Me, I've always thought that instead of having an absolute zero tolerance policy on swearing they should get some common sense and deal with each situation as it occurs. Perhaps they could occasionally ask themselves if there's a reason why this obviously frustrated person at his wits' end is getting agitated? Perhaps they should act like proper fucking grown ups and stop being so precious and silly and demanding of special treatment and attention simply because they work in a hospital.) I'm detecting a negative tone, said the radiology fella. Well, I said, let me explain to you how every time we come to this place there's always - always - a problem. That's not my fault, he said, it's down to the consultant or the consultant's secretary who didn't mention in the notes that blah, blah, blah and so it's not our fault and maybe you should take it up with them. Why should I take it up with anybody? I said. Why is that something I have to worry about? I said.
And on it went for a bit with them getting very defensive and pointing the finger at everyone in the hospital but themselves. It was like they were asking me to understand just how incompetent and how bad basic communication is up there. I hate how they always expect us to be sympathetic to the problems they have: someone's been off, she only works Mondays, we're short-staffed, the printer broke, the computers went down, the cleaner tipped her bucket over. It's pathetic.
Let's be clear: it wasn't so much that on this occasion it was such a massive problem. It was that it was a problem at all. It was that, yet again, we were made to think that we just can't trust the hospital to do anything right. It's very depressing and very frustrating.
But Dr Bem. She's NHS. And she's great. So there's hope yet.
* Thinking of titles for blog posts is always a bit of a chore. So from now on mine will be taken from lyrics by The Fall. That should put a few people off.
Tuesday, 19 October 2010
Photographs
I was going to write about how fabulous the girls' birthday party was and how lovely it was that so many people turned up.
I was also going to write about the fabulous Dr Bem, who looks as though she's going to be Maggie's new champion.
But I'm too tired.
Click the picture below to see a small selection of recent photographs. More soon.
Addendum: Look at the second to last photograph in the gallery, the one of Alice in the swing. It staggers me sometimes how utterly beautiful she is.
I was also going to write about the fabulous Dr Bem, who looks as though she's going to be Maggie's new champion.
But I'm too tired.
Click the picture below to see a small selection of recent photographs. More soon.
Addendum: Look at the second to last photograph in the gallery, the one of Alice in the swing. It staggers me sometimes how utterly beautiful she is.
Sunday, 17 October 2010
Friday, 15 October 2010
Baby Maggie
I know we're long, long overdue in posting photos of the girls, especially now that they're the ripe old age of one - and I need to learn from Paul how to do this properly so he doesn't have to be the one responsible for it all the time. But one of my favourite pictures of Maggie is clumsily attached below (hopefully).
It's 4.45am, I've just finished feeding Maggie but was contemplating staying up for another hour to feed her a little bit again because she has to go up to the hospital at 9.45am to have dye pumped into her to test the level of her reflux and can't eat anything for 4 hours beforehand. And it hit me - like it often does after a period of time when Maggie's been particularly demanding and upset and sleepless like she's been this past week - she's just a baby.
It's hit me hard this time - because she's just had her first birthday (and was such a super girl for it), because she's going to Quidenham tomorrow and I feel desperate for the break. She's just a baby - who hasn't had a day in her first year when she hasn't vomited, hasn't had a night where she's slept through contentedly. Her little arms and legs move constantly even though she doesn't want them to - she's always frustrated by things her mind wants to do but her body won't let her. She's spent nearly half her life in hospital, lots of times on her own. Her first week of being one and she's had two hospital appointments, a physiotherapy appointment and a milestone development session and is spending three days at a hospice. And she's still so little, only 16 pounds.
Despite all this, she's got a lovely grin that gets everyone every time. Crinkles her whole face and that little high dimple comes out. And the smiles are coming more often, for more people, just because.
We keep getting told that we're doing an amazing job. I think Maggie is too.
It's 4.45am, I've just finished feeding Maggie but was contemplating staying up for another hour to feed her a little bit again because she has to go up to the hospital at 9.45am to have dye pumped into her to test the level of her reflux and can't eat anything for 4 hours beforehand. And it hit me - like it often does after a period of time when Maggie's been particularly demanding and upset and sleepless like she's been this past week - she's just a baby.
It's hit me hard this time - because she's just had her first birthday (and was such a super girl for it), because she's going to Quidenham tomorrow and I feel desperate for the break. She's just a baby - who hasn't had a day in her first year when she hasn't vomited, hasn't had a night where she's slept through contentedly. Her little arms and legs move constantly even though she doesn't want them to - she's always frustrated by things her mind wants to do but her body won't let her. She's spent nearly half her life in hospital, lots of times on her own. Her first week of being one and she's had two hospital appointments, a physiotherapy appointment and a milestone development session and is spending three days at a hospice. And she's still so little, only 16 pounds.
Despite all this, she's got a lovely grin that gets everyone every time. Crinkles her whole face and that little high dimple comes out. And the smiles are coming more often, for more people, just because.
We keep getting told that we're doing an amazing job. I think Maggie is too.
Thursday, 7 October 2010
Birthday Blues and PLEASE DONATE!
The girls will be a year old this Saturday. A year. We can't work out whether it seems longer than that or shorter than that. It depends what mood we're in.
So it's their first birthday and, of course, this in itself is a big deal. But the thing about Maggie celebrating her birthday is that she very nearly wasn't here at all. If you recall, in those first couple of days we were told that she would die. And then when she didn't die, we were told that her quality of life would be so appalling that perhaps it would be better if she didn't make it.
So Maggie celebrating her birthday is a very big deal indeed. Right?
Remember also that up until that last hour of labour (when Maggie stopped breathing, starving herself of oxygen to the brain) everything was absolutely fine. Shannon had a very good pregnancy, the girls (we didn't know they were girls then) were very healthy. It was just that moment in labour that cruelly robbed Maggie of a good and proper life.
Of course, I say 'moment in Labour' as if it were just one of those things. It wasn't one of those things. As you may know, women carrying twins are supposed to be in the 'high risk' category. Which means they should be monitored and cared for more closely. That didn't happen with us. What we got was a midwife who, while pleasant enough, clearly wasn't that bright or competent. On top of that, she kept nipping out to see to her 'other woman'. For a lot of the time then, when Shannon was hooked up to the monitors, we were alone. Initially, this didn't concern us too much because the labour seemed to be going fine. When it started to look as though all wasn't well, however, this midwife proved to be next to useless. There just wasn't enough urgency or focus. At one point she even joked to Shannon something about not being able to find Maggie's head when she clumsily shoved her hand up in order to attach a probe.
The details of all of this are a bit painful to recall, to be honest. Doctors came in, they pissed about a bit more. Scanning machines were casually wheeled in, they pissed about a bit more. They tried to find Maggie's heartbeat and when it plainly wasn't there, they finally banged the emergency button.
As I stood there like an idiot, a team of doctors rushed Shannon out.
If there's one thing guaranteed to make me cry, it's recalling Shannon's bewildered, hopeful face as she was wheeled out, as she mouthed to me that everything would be okay.
Within minutes I knew that everything wasn't okay. I was left in the labour room alone for a couple of hours. I called Tom who came straight up and we waited together for news.
At one point, our midwife rushed in with a bundle: Alice. She passed me my daughter as if she were hoping that I wouldn't ask about the other one. But I did ask. Her face fell, words were muttered and pretty soon we were alone again.
Shannon had an emergency caesarean. She was knocked out cold and basically ripped open. They pulled Maggie out and desperately tried to revive her. They somehow brought her back to life and she was rushed off for emergency treatment.
All I wanted was to see Shannon. I'd been told by this point how bad things were and I was working out how best to let her know.
I've always had this attitude - and I always used to say it to Shannon - that whatever happens in life, it'll be all right in the end. You know: what's the worst that could happen? Shannon repeated this to me, obviously hoping that I'd tell her that yes, everything would be all right. But I couldn't do it. I tried to tell her, gently, to prepare for things not being all right. I mean, I was half expecting us to be told that Maggie was dead.
For the next few hours, Shannon kept telling me not to worry, that everything would be all right. She kept saying things like: "Come on, you always say it'll be all right - and it will be. I know it will." That, too, when I think back to it, breaks my heart. Shannon trying to be hopeful and optimistic and repeating back to me all the casual, stupid things I say - like how very bad things only seem to happen to other people.
A few hours later we were told that Maggie's condition meant that she would be unlikely to make it through the night.
We fell apart.
We were told that Alice was fine, but with a few problems, and that we could go and see her. We were also told that we could go and see Maggie who was in the intensive care unit hooked up to every machine going. We decided, after much agonising, that we would go and see Alice and not see Maggie. Bear in mind we were told that she only had a few hours to live. We thought that perhaps it'd be best not to see her in the state she was in - so that we wouldn't always have terrible memories of her.
So we went to see Alice and it was devastatingly sad. As we left her, we passed the room where Maggie was. We could see where she was in the far corner of the room. At that moment we knew we had to see her.
So we saw Maggie and it was as heartbreaking and as soul destroying as you can imagine it was.
That night we cried so much that I couldn't believe it was possible to cry that much. We just didn't know what to do. We talked about how you go about arranging a funeral for a baby. And then we realised that our girls didn't even have names.
We'd always liked the name Alice. So we decided that, as she was going to live, she could have that. We struggled with a name for Maggie because what we were doing was naming a dead baby.
The next morning we were visited by Maggie's consultant who said that, against expectations, she'd had made it through the night. But now we were faced with the prospect of her having a quality of life that would be so low that she'd be better off dead. Both Shannon and I agreed that we would go for that option, if that option presented itself, to relieve her suffering.
Things start to get a bit blurry now.
The following day, I think, we were told that again, defying expectations, Maggie was looking a little better. It turned out that she was a fighter.
It was around this point that we gave her the name Maggie. It was on our list, that name, but right at the bottom. We'd already rejected it. But for some reason it seemed to fit. Maggie seemed like a name that you would give to a fighter. So of course there's Thatcher; but it wasn't just that. There was Maggie Bell, the gravelly-voiced, hard-living Scottish singer who my dad loved when I was a kid. And, of course, Rod Stewart's Maggie May.
It seemed to fit perfectly. And it seemed, in a daft way, that if we gave her the name Maggie she might somehow live up to it.
The days that followed were just really bleak and upsetting and nightmarish - in the sense that it all seemed utterly unreal. We cried all the time. I mean, all the time. We saw Alice lots, of course, and we also saw Maggie who was still fighting. But a lot of the time we were alone in our shabby hospital room.
I say 'our' hospital room. I shouldn't have been there. But they let me stay - y'know, as a favour.
So the days turned to a week and...
You know, in all the time we were there nobody from the hospital - and I mean nobody - took a single moment to say to Shannon: "Are you okay?" Nobody there thought to themselves to just ask this frightened, devastated new mum how she was. Nobody at all. The midwife who was there during her labour - we never saw her again. Not a peep. Nobody offered counselling or advice or anything at all. Like I say, not even a "Are you okay?"
Of course, with it being the girls' birthday we're going to be looking back to that time. And thinking about this past year. We've documented a lot of it on this blog. But even there I think we've failed to get across just how terrifying and lonely and sad it's been. And still is.
You read this blog and you'll get a sense of real frustration and anger. That's because it's mostly been me writing it. I can do anger quite easily - and I've had a lot to be angry about.
But like I say, I think I've failed to get across just how much this has hurt us. We put a brave face on it, as everyone does, but I think I've gone a little too far with it. I come across as angry and bitter and determined and capable and strong. But I'm nowhere near as strong as I try to make out.
So for instance:
I've got this stupid double life on Twitter which Shannon finds a little difficult to understand. But it's this: when I'm trying to get Maggie to sleep or feed her while she's howling in my face, my iPhone, and Twitter, opens up a world that's outside of all that. I can literally hold it in one hand and have Maggie on the other. So I can be a little more like me. And one thing I love about Twitter is that it allows me to be a little more human. I can't read books any more, I can't write any more, I can't do the stuff that helps to keep me sane. Twitter, as daft as it sounds, allows me a bit of that.
One of the reasons I mentioned appearing to be strong and capable is that I've been wondering if this accounts for the way certain people have behaved towards us. In all seriousness, I've got friends who haven't been in touch with me - I mean, not at all - since I told them on the first day what happened with Maggie. I find that incredibly sad and it hurts me much more than I've so far let on. We've got work colleagues who say nothing at all to us about the girls. I mean nothing. I'm not saying that they don't say enough or that they don't say things in the right way - I mean they say nothing.
So what is it? Why, over this past year, have some people chosen to have nothing to do with us? Is it because, as I say, we come across as too capable? Do we - I - seem a bit intimidating?
I realise that this probably isn't doing me any favours. I'm just trying to be honest. I'm trying to get across - for once - how lonely and sad we feel most of the time. Believe me, despite how it comes across here, I'm not shouting and ranting and getting annoyed all the time. Most of the time I just feel sad and lost. As Shannon feels sad and lost. And one of the reasons we feel like that is that we've come to realise that we're on our own.
Don't get me wrong though - many, many people have been fabulous. I love my friends who I drink with and have a laugh with and those I chat to on Twitter or wherever. They don't always ask after the girls, but that's not the point - they're there for me.
Talking of always being there for us:
The people at Quidenham have never let us down. Without them I think we might have gone under a while ago. They're not just lovely and friendly and caring - they're extremely professional and have a real understanding of Maggie and of us. We leave Maggie there for a few days and we know she's in the very best hands. Believe me, that's really special.
The sad thing is that they're a charity. They have to struggle like every other charity. They provide essential care and support for people who, through no fault of their own, have ended up on the shit side of life. And yet they have to go cap in hand, fighting for donations. That seems wrong to me. Even if I didn't have a disabled child, it'd still seem wrong to me.
So they need donations. And as it's the girls' birthday, I'd be very grateful if everyone who reads this could nip over to their website and give them a few quid.
Thank you.
EACH Hospitals - Donation Page
Oh, and apologies for all the self-pitying crap above. It's a tough time at the moment, as I'm sure you'll understand.
So it's their first birthday and, of course, this in itself is a big deal. But the thing about Maggie celebrating her birthday is that she very nearly wasn't here at all. If you recall, in those first couple of days we were told that she would die. And then when she didn't die, we were told that her quality of life would be so appalling that perhaps it would be better if she didn't make it.
So Maggie celebrating her birthday is a very big deal indeed. Right?
Remember also that up until that last hour of labour (when Maggie stopped breathing, starving herself of oxygen to the brain) everything was absolutely fine. Shannon had a very good pregnancy, the girls (we didn't know they were girls then) were very healthy. It was just that moment in labour that cruelly robbed Maggie of a good and proper life.
Of course, I say 'moment in Labour' as if it were just one of those things. It wasn't one of those things. As you may know, women carrying twins are supposed to be in the 'high risk' category. Which means they should be monitored and cared for more closely. That didn't happen with us. What we got was a midwife who, while pleasant enough, clearly wasn't that bright or competent. On top of that, she kept nipping out to see to her 'other woman'. For a lot of the time then, when Shannon was hooked up to the monitors, we were alone. Initially, this didn't concern us too much because the labour seemed to be going fine. When it started to look as though all wasn't well, however, this midwife proved to be next to useless. There just wasn't enough urgency or focus. At one point she even joked to Shannon something about not being able to find Maggie's head when she clumsily shoved her hand up in order to attach a probe.
The details of all of this are a bit painful to recall, to be honest. Doctors came in, they pissed about a bit more. Scanning machines were casually wheeled in, they pissed about a bit more. They tried to find Maggie's heartbeat and when it plainly wasn't there, they finally banged the emergency button.
As I stood there like an idiot, a team of doctors rushed Shannon out.
If there's one thing guaranteed to make me cry, it's recalling Shannon's bewildered, hopeful face as she was wheeled out, as she mouthed to me that everything would be okay.
Within minutes I knew that everything wasn't okay. I was left in the labour room alone for a couple of hours. I called Tom who came straight up and we waited together for news.
At one point, our midwife rushed in with a bundle: Alice. She passed me my daughter as if she were hoping that I wouldn't ask about the other one. But I did ask. Her face fell, words were muttered and pretty soon we were alone again.
Shannon had an emergency caesarean. She was knocked out cold and basically ripped open. They pulled Maggie out and desperately tried to revive her. They somehow brought her back to life and she was rushed off for emergency treatment.
All I wanted was to see Shannon. I'd been told by this point how bad things were and I was working out how best to let her know.
I've always had this attitude - and I always used to say it to Shannon - that whatever happens in life, it'll be all right in the end. You know: what's the worst that could happen? Shannon repeated this to me, obviously hoping that I'd tell her that yes, everything would be all right. But I couldn't do it. I tried to tell her, gently, to prepare for things not being all right. I mean, I was half expecting us to be told that Maggie was dead.
For the next few hours, Shannon kept telling me not to worry, that everything would be all right. She kept saying things like: "Come on, you always say it'll be all right - and it will be. I know it will." That, too, when I think back to it, breaks my heart. Shannon trying to be hopeful and optimistic and repeating back to me all the casual, stupid things I say - like how very bad things only seem to happen to other people.
A few hours later we were told that Maggie's condition meant that she would be unlikely to make it through the night.
We fell apart.
We were told that Alice was fine, but with a few problems, and that we could go and see her. We were also told that we could go and see Maggie who was in the intensive care unit hooked up to every machine going. We decided, after much agonising, that we would go and see Alice and not see Maggie. Bear in mind we were told that she only had a few hours to live. We thought that perhaps it'd be best not to see her in the state she was in - so that we wouldn't always have terrible memories of her.
So we went to see Alice and it was devastatingly sad. As we left her, we passed the room where Maggie was. We could see where she was in the far corner of the room. At that moment we knew we had to see her.
So we saw Maggie and it was as heartbreaking and as soul destroying as you can imagine it was.
That night we cried so much that I couldn't believe it was possible to cry that much. We just didn't know what to do. We talked about how you go about arranging a funeral for a baby. And then we realised that our girls didn't even have names.
We'd always liked the name Alice. So we decided that, as she was going to live, she could have that. We struggled with a name for Maggie because what we were doing was naming a dead baby.
The next morning we were visited by Maggie's consultant who said that, against expectations, she'd had made it through the night. But now we were faced with the prospect of her having a quality of life that would be so low that she'd be better off dead. Both Shannon and I agreed that we would go for that option, if that option presented itself, to relieve her suffering.
Things start to get a bit blurry now.
The following day, I think, we were told that again, defying expectations, Maggie was looking a little better. It turned out that she was a fighter.
It was around this point that we gave her the name Maggie. It was on our list, that name, but right at the bottom. We'd already rejected it. But for some reason it seemed to fit. Maggie seemed like a name that you would give to a fighter. So of course there's Thatcher; but it wasn't just that. There was Maggie Bell, the gravelly-voiced, hard-living Scottish singer who my dad loved when I was a kid. And, of course, Rod Stewart's Maggie May.
It seemed to fit perfectly. And it seemed, in a daft way, that if we gave her the name Maggie she might somehow live up to it.
The days that followed were just really bleak and upsetting and nightmarish - in the sense that it all seemed utterly unreal. We cried all the time. I mean, all the time. We saw Alice lots, of course, and we also saw Maggie who was still fighting. But a lot of the time we were alone in our shabby hospital room.
I say 'our' hospital room. I shouldn't have been there. But they let me stay - y'know, as a favour.
So the days turned to a week and...
You know, in all the time we were there nobody from the hospital - and I mean nobody - took a single moment to say to Shannon: "Are you okay?" Nobody there thought to themselves to just ask this frightened, devastated new mum how she was. Nobody at all. The midwife who was there during her labour - we never saw her again. Not a peep. Nobody offered counselling or advice or anything at all. Like I say, not even a "Are you okay?"
Of course, with it being the girls' birthday we're going to be looking back to that time. And thinking about this past year. We've documented a lot of it on this blog. But even there I think we've failed to get across just how terrifying and lonely and sad it's been. And still is.
You read this blog and you'll get a sense of real frustration and anger. That's because it's mostly been me writing it. I can do anger quite easily - and I've had a lot to be angry about.
But like I say, I think I've failed to get across just how much this has hurt us. We put a brave face on it, as everyone does, but I think I've gone a little too far with it. I come across as angry and bitter and determined and capable and strong. But I'm nowhere near as strong as I try to make out.
So for instance:
I've got this stupid double life on Twitter which Shannon finds a little difficult to understand. But it's this: when I'm trying to get Maggie to sleep or feed her while she's howling in my face, my iPhone, and Twitter, opens up a world that's outside of all that. I can literally hold it in one hand and have Maggie on the other. So I can be a little more like me. And one thing I love about Twitter is that it allows me to be a little more human. I can't read books any more, I can't write any more, I can't do the stuff that helps to keep me sane. Twitter, as daft as it sounds, allows me a bit of that.
One of the reasons I mentioned appearing to be strong and capable is that I've been wondering if this accounts for the way certain people have behaved towards us. In all seriousness, I've got friends who haven't been in touch with me - I mean, not at all - since I told them on the first day what happened with Maggie. I find that incredibly sad and it hurts me much more than I've so far let on. We've got work colleagues who say nothing at all to us about the girls. I mean nothing. I'm not saying that they don't say enough or that they don't say things in the right way - I mean they say nothing.
So what is it? Why, over this past year, have some people chosen to have nothing to do with us? Is it because, as I say, we come across as too capable? Do we - I - seem a bit intimidating?
I realise that this probably isn't doing me any favours. I'm just trying to be honest. I'm trying to get across - for once - how lonely and sad we feel most of the time. Believe me, despite how it comes across here, I'm not shouting and ranting and getting annoyed all the time. Most of the time I just feel sad and lost. As Shannon feels sad and lost. And one of the reasons we feel like that is that we've come to realise that we're on our own.
Don't get me wrong though - many, many people have been fabulous. I love my friends who I drink with and have a laugh with and those I chat to on Twitter or wherever. They don't always ask after the girls, but that's not the point - they're there for me.
Talking of always being there for us:
The people at Quidenham have never let us down. Without them I think we might have gone under a while ago. They're not just lovely and friendly and caring - they're extremely professional and have a real understanding of Maggie and of us. We leave Maggie there for a few days and we know she's in the very best hands. Believe me, that's really special.
The sad thing is that they're a charity. They have to struggle like every other charity. They provide essential care and support for people who, through no fault of their own, have ended up on the shit side of life. And yet they have to go cap in hand, fighting for donations. That seems wrong to me. Even if I didn't have a disabled child, it'd still seem wrong to me.
So they need donations. And as it's the girls' birthday, I'd be very grateful if everyone who reads this could nip over to their website and give them a few quid.
Thank you.
EACH Hospitals - Donation Page
Oh, and apologies for all the self-pitying crap above. It's a tough time at the moment, as I'm sure you'll understand.
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.
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.
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
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.
RUBBISH
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.
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.
RUBBISH
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.
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