Monday, 19 December 2011
Monday, 12 December 2011
I can’t wait for Maggie to reach the age where she’s taking part in the Paralympics, shooting baskets or swimming or hurtling down the track on some super bouncy legs or whizzing round the volleyball court in her cool, streamlined wheelchair while the crowd cheers her on not only for her athletic prowess but for the glowing, inspirational face of positivity she wears every single day of her life because, hey, being disabled is no barrier, you’ve just got to have a dream and believe in yourself and be one hundred and seventy-nine per cent sure that you’re no different, not really, from everyone else out there because, at the end of the day, it’s about fighting and winning and loving life and taking on challenges and...
I have a problem with the Paralympics. Or, rather, a problem with all the crap we have to hear about it every day. I’m sick and tired of seeing muscular, fit young men and women with missing legs telling us that disability is just, y’know, one of those things they have to deal with. As they zoom about in their funky wheelchairs, oozing BBC-approved positivity.
I have a problem with the Paralympics because it seems to me to paint quite a false picture of what disability – real disability – is like for so many people. Disability, for them, isn’t about positivity and treating life as some kind of Hollywood script where a belief in one’s self is all that’s needed to win the day. Disability for them is a life of sadness and pain and loneliness and poverty. And given what’s happening with the cuts, it’s about to get even worse.
I have a problem with the way the Paralympics seems to say to those disabled people who aren’t athletes – who have absolutely no hope or even desire to be athletes – that they’re somehow letting the side down. I know Maggie will never be able to do the things I described above but it should be enough that her achievements will be small. To reference Frankie Boyle’s joke about Lewis Hamilton’s brother: if she ever managed to drink from a cup, that’d be something truly amazing. But will she have to feel guilty and sad about the fact that that will be a relatively small achievement compared to, say, running the 1oo metres?
One of my biggest problems with the Paralympics is that it claims disability, and notions of disability, for itself. By which I mean: there’s a world of difference between someone who has lost their leg below the knee and someone who is blind and deaf with quadriplegic cerebral palsy. Yes, the Paralympics raises awareness of something called disability; but it’s not the same disability that many people have to live, and suffer, with.
I think, at heart, it’s about me being suspicious of the value of the Paralympics. Because when they talk about raising awareness of disability and how it gets disabled people in from the shadows, I think there’s a danger that severely disabled people – the ones you never see, the ones who really suffer – are going to be left in an even darker place. Because not only will they not fit in with ‘normal’ society and people, they won’t even fit in with these healthy, positive people who are rapidly becoming the new and public face of disability.
I don’t know if I’m right about this, by the way. I could be totally wrong. Maybe those media-friendly disabled people with muscular torsos and glowing, happy faces are right: maybe they are going some way towards creating a society where disabled people will fit in as much as everyone else. Maybe all disabled people will be welcomed in with open arms – even those who don’t quite fit the picture.
As I say, it’s the picture of disability the Paralympics paints that bothers me. I wouldn’t mind so much if this was balanced a bit in the media with portrayals of how awful and terrifying and lonely real disability can be. I worry that we’re collectively buying into an accepted definition of disability that essentially states that it’s something that’s not that far removed from being able-bodied. Which could lead to a general feeling of ‘what’s the big deal about being disabled?’ And at a time when disabled people are also being attacked in the media for being benefit scroungers or malingerers, I think we’re in danger of creating just another false narrative about disability, however well-intentioned it may be.
By the way, I’d be grateful for your thoughts on this because, as you've probably noticed, I’m struggling a bit with what to think - and how to express it.
Friday, 18 November 2011
I can't tell you just how lovely it is being with Alice like this. She's the easiest, sweetest and happiest little kid. We're just hanging out together and having a great time. If it were just her (and this is in no way a dig at Maggie, who I miss terribly), I'd beg to be a full-time househusband.
Sunday, 16 October 2011
Sunday, 9 October 2011
Maggie and Alice are two-years-old today. Amazing. I know everyone says it about their kids but really: where does the time go?
I was going to write about this past year but, truthfully, I haven't had the time. So instead I'm going to repeat part of what I wrote last year (below). It does us good, occasionally, to remember the terrible time we went through and how grateful we are that Maggie is with us.
I will say though that things have improved quite a bit recently. As mentioned in the last few posts, Maggie has been a lot happier and more settled. She's not been throwing up, she's been sleeping better and she's starting to put on weight. And she's still doing well with eating through her mouth (despite the cold she currently has).
As for Alice: she's just the most amazing little kid. Bright, funny, clever and as happy as the day is long. She's an absolute joy to be with and doesn't give us a single moment's trouble.
The nice thing about this year is that the girls' brothers and sister (Tom, Louie and Isaac) are here to celebrate their birthday with them. I'm so very glad about that.
As with last year, I've had some badges made which we'll be passing out to friends and family (if they want them, of course). Maybe this is a thing I could do every year. As you can see, they've really grown:
Oh, and despite me making the badges and writing this post, I have to say that all of the birthday preparations (including present selection and buying) have been done by Shannon. I had very little to do with any of it. And I just want to say how proud I am of her - not just for sorting their birthday but for being an utterly wonderful mother. The girls are very lucky to have her. So am I.
From October 2010:
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 just 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, 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 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 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 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 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 perhaps it'd be best not to see her in the state she was in - so 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 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 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 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, there was 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 a lot, of course, and we also saw Maggie who was still fighting. But for 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 - 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.
Tuesday, 4 October 2011
Make sure and drop a line on here to wish him a happy birthday and a happy year, even if you're later than me!
Tuesday, 27 September 2011
She managed this partly because I decided not to plug her in for her lunch time feed. So she was hungry – something that, due to her strict feeding regime, she’s never really been.
As I said in the previous post, this is still early days. As things stand, the food she eats through her mouth won’t provide her with the amount of calories she desperately needs. So we can’t stop the tube-feeding just yet, if ever. She also needs water and liquids, something she’s not yet capable of swallowing successfully.
The thing is, the stupid feeding machine and the constant plugging in to her stomach is the only artificial intervention she has. She doesn’t need to be attached to monitors or oxygen or anything like that. So her being liberated from it will be a very big deal indeed.
The food through her mouth also seems to be making her happier. Her reflux seems to be significantly reduced so she’s a lot more comfortable. Which means she’s sleeping better at night.
It’s one of the things that’s always bothered us: that the first two years of her life were ruined by her digestive problems: the constant vomiting, the reflux, the all-round misery of being in pain and the lack of sleep that came out of that*. It severely impeded not only her general happiness and well-being, but also her crucial developments. We’ll never get those all-important first years back.
But still, we’re over the moon that things are starting to improve.
* Two colons within a single sentence. Awesome, as they say.
Tuesday, 20 September 2011
Big and happy birthday wishes to Shannon (pictured, above) who is, by some considerable distance, the best mum in the known universe. And beyond.
Not that I'd want to define her as just a mum, of course. She's got loads of great things going for her. Loads!
Monday, 12 September 2011
Some weeks ago I decided to take the bold step of forcing Maggie to eat through her mouth. As you'll know, she's never eaten through her mouth and has always been tube fed. The thought of her doing that for the rest of her life is one of the main things that saddens me about her condition.
Feeding Maggie through her mouth is a very perilous task, not least because she vomits so often and is so orally averse. Over the past eighteen months we've got used to the fact that she was essentially nil by mouth.
But as I say, a few weeks ago I decided to basically start shoving food in. It was, taking into account everything that's gone before, a huge success. Yes, she threw up and gagged occasionally but on the whole the food went down okay. It seemed to me that one of the main problems was that she was psychologically opposed to it all. For instance, every time I approached her mouth with a finger full of food she grimaced and then pulled all sorts of faces while trying to force the food down. But I was hoping it was just a matter of perseverance - something she'd get used to.
Anyway, she's been very ill these past couple of weeks with a chest and throat infection. So the feeding was put on hold. This afternoon, however, I decided to give it another go.
This time, I have to say, was simply amazing. Not only did the food go down nicely, but she also welcomed it - even going so far as to smile as it approached her mouth. I can't tell you how happy this has made me. I'm determined that she's going to get on top of this.
Of course, it's early days - small steps and all that bollocks. It may be the case that she's not so good next time or that she goes off it completely. After all, one of the most consistent things about Maggie is her inconsistency.
But still, this is - for her and for us - a momentous breakthrough.
Sunday, 11 September 2011
Friday, 19 August 2011
The results of the Night for NANSA are in!
From the actual night: £348
Grand total: £1043!
The biggest thanks, however, should go to Tim Andrews and Imogen Thorndyke who set all of it up and made sure the night went so swimmingly. Also to NANSA who had their people walking around shaking their tins. Needless to say, they're over the moon.
It was, genuinely, a really great night. To be honest, I was dreading it a bit. Well, y'know - performance poets, comedians and birds with acoustic guitars. Brrr. But I was very pleasantly surprised at how good the acts all were. Every single one of them.
(Particular mention should go to Imogen's sister Georgi Thorndyke who made her first public performance, at the age of just 14. And to Andy Palmer, who was both funny and charming and who, apparently, went down particularly well with quite a few of the women. Oh, and to my mate Andy Larkin who did a great job of compering the event and getting people to dig deep.)
By the way, that £343 raised on the night - from ticket sales, tin rattling and raffle tickets - is an incredible amount, especially given that it was a relatively small event. It just demonstrates how generous everybody was.
If you didn't make it on the night - or haven't yet donated - you still can by clicking here. I shouldn't have to say it again but I will: NANSA makes a huge difference to some of the most vulnerable people's lives. And that huge difference is all down to people like you making just a small donation.
Thursday, 11 August 2011
Please see below for the list of performers and start time.
And don't forget that even if you're not coming along to the event, you can still donate to help a fantastic organisation. Thank you. NANSA Justgiving.
Next Wednesday evening (August 17th) we'll be hosting a Night for NANSA at The Birdcage pub in Norwich. There are a number of cracking acts performing - including musicians and comedians - with all proceeds going to NANSA. It's not a ticketed event but costs just £3 on the door.
The evening will also be compered by my friend Andy Larkin. (If you know Andy, you'll know that that's reason enough to come along).
If you don't know what NANSA is, I'll repeat this from my previous post: NANSA (Norfolk & Norwich Scope Association) is essentially the branch of Scope in Norwich. They do fabulous work for people with all kinds of disabilities. Maggie is currently attending their School For Parents programme and is getting a hell of a lot from it - her life, and the lives of many people with disabilities, would be so much the poorer without their help.
I know there are a lot of charity requests these days but I can't stress enough what an utterly fabulous organisation NANSA is - it helps many of the most vulnerable and neglected people in the city and beyond.
Click here for more information about NANSA.
As well as the ticket proceeds, we'll also be passing collection buckets around on the night. So make sure you bring plenty of cash!
In the meantime - or if you can't make it - we'd be very grateful if you could donate via the Justgiving page at:
Thank you for your support. We hope to see you next Wednesday evening at The Birdcage in Norwich.
WEDNESDAY 17 AUGUST
THE BIRDCAGE, NORWICH.
Georgi Thorndyke - Singer
Russell Turner - Poet
Andy Bennett - Comedian
John Simpson - Comedian/Poet
Andy Palmer - Comedian
Entry at 7.30pm for an 8.15/8.30pm start.
We'll also be tweeting about the event on Twitter (from @paulsaxton and @Timster_37).
Sunday, 19 June 2011
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
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
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
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.
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
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
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
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
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
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
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
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
Thursday, 20 January 2011
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
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.