Maggie and Alice

Happy Mother's Day Shannon!

2012-03-18T07:45:00.004Z

Happy Mother's Day to Shannon who, despite doing a marvellous job with both of our girls, worries every single day that she isn't doing a good enough job.

Honestly, they - and especially Maggie - just couldn't have asked for a better mum. Without her they, and I, would be lost. I just wish it was all a bit more pleasurable for her, that it wasn't so hard.

Thank You Shannon

2012-03-06T16:37:00.004Z

I slipped on the ice a few weeks ago and severely bruised my shoulder by landing on – slamming into – the tow bar on the back of our car. As a result of that I’ve been unable to lift my arm. And as a result of that, I’ve been unable to lift Maggie. As you know, Maggie requires a lot of lifting.

Over this period Shannon has been an absolute angel. She’s been looking after Maggie every single night – putting her to bed and getting up with her in the early hours. Unfortunately, she’s been waking a lot through the night recently, anything up to three hours at a time. It’s been a nightmare.

As well as that, Shannon took time off work to help me at home. Actually, no – she was working from home. So she was at least in the other room if I needed a hand carrying Maggie and putting her to bed.

And as if all this wasn’t bad enough, Shannon also became ill last week. As did Alice and Maggie. And then, to a lesser extent, me. This past week then has been particularly bad. Maggie with her chest infection and Alice in an absolute state with some kind of viral infection, unable to sleep and howling through the night.

As I said earlier, Shannon has been amazing throughout all of this. I hate to say it – and I’m only saying it because it’s true – but if the situation had been reversed, I wouldn’t have been anywhere near as good. After the first day I would have probably shouted: “It’s only your fucking arm!”

So really, the purpose of this post is for me to say a big public thank you to Shannon for being so wonderfully selfless - and for being so caring and capable.

And for just being so wonderful. I'm very lucky to have her. So are the girls.

(Oh, and one thing all of this has brought home to us - as if we didn't know it before - is how important it is that we stay fit and healthy for Maggie's sake. Because really, we're on our own here.)

Maggie

2012-02-12T16:03:00.005Z

Here are some nice pictures of Maggie. Taken by my dad yesterday.

Maggie's bed (Shannon)

2012-02-06T22:15:00.010Z

I put Maggie down to sleep in her cot for the last time tonight - her special bed is being delivered tomorrow. And I'm really, really dreading it. There were more than a few tears tonight getting Maggie ready for bed, for this last night.

I was actually okay with the special bed until the message on our phone last week from the team delivering it - Hospital Services. My little reality-block bubble, which really is quite strong most of the time, had been seeing Maggie's bed as 'special' in vague, nice, cute terms. Just for Maggie, special. But here was the truth - it's a hospital bed. For my little girl's room.

A big, single, electric bed that stands at our waist height for easy access, with blue, padded sections we open for putting Maggie in and out, and then close when she's sleeping. Her room won't have her little, 'normal' cot in the corner any more. It will be dominated by her big hospital bed. And my reality-block bubble isn't strong enough to make out that this is okay, that this is anything but heartbreaking and wrong and a daily reminder that reality isn't what I keep pretending it is.

Welfare Reform and Disability Discourse

2012-01-30T15:37:00.006Z

I’ve been meaning to write about the government’s Welfare Reform Bill for a while now. But then I’ve been meaning to do lots of things for a while now.

To be honest, I’ve felt a little under pressure to comment on it. There’s a lot of noise out there about it and so far I’ve kept quiet. I think some people think this is a bit odd, especially given that I’m not shy about commenting on other issues that are less close to home. But it’s precisely because it’s so close to home that has made me reticent. In simple terms, it’s yet another fucking thing we have to worry about. And really, we don’t want, or need, another thing to worry about.

As far as the bill goes – specifically the changes to Disability Living Allowance – I’ve no idea whether reform is needed. But of course, if you look at anything hard enough you can always find something to tinker with. There’ll always be some mean-spirited bean counter who can make a case for reform. That shouldn’t surprise us.

What I do know for certain, however, is that many disability campaign groups are opposed to the reforms. And really, that’s good enough for me.

What I despise most about this bill, about this government, is the way they’ve managed to ramp up the hatred – and it is hatred – towards disabled people. I’m not of the opinion that the government solely creates this hatred, by the way. I think it’s there and I think it’ll always be there. There are a lot of hateful, ignorant, spiteful people out there and, in effect, they’ve just been given more of a green light to talk negatively about the disabled. And boy, are they going for it.

The government allows these attitudes to prevail, of course, because it makes it easier for them to push reforms through. That’s the grubby world of politics for you.

As we’ve all seen, negative attitudes towards the disabled are now everyday fodder for the mainstream media. In The Sun last week Rod Liddle wrote a column about the ‘fake disabled’. You can read that here. And as a follow-up, and partly as a defence of Liddle, James Dellingpole wrote this piece here.

They, and their supporters, defend those pieces on the grounds that they’re quite clearly talking about people who aren’t actually disabled. They’re not talking about genuinely disabled people. This, it seems to me, is quite disingenuous. The first thing I have to ask is: what is it that motivates both of these high profile writers to be so determinedly vitriolic about something that, in reality, accounts for very little in financial terms? I’ve seen figures bandied about that suggest that only 0.5% of disability benefit claims are fraudulent. Yes, it’s a problem. But surely not enough of a problem. Why not, instead, focus on real villains, real fraudsters?

The second thing that bothers me about this ‘debate’ is that something fundamental is being missed: the flipside. How come, whenever there’s a discussion about disability benefits, there’s never any mention of those disabled people who either don’t claim benefits at all or not everything that they’re entitled to? How come there’s never any mention of people who, while disabled and perfectly entitled to benefits, fight against the odds to work?

To get personal for a moment: my father lost his left leg, above the knee, in a motorcycle accident when he was 34-years-old. That was thirty years ago. He doesn’t claim benefits and he doesn’t even, even though he’s fully entitled to one, have a blue badge for his car. He works and he’s always worked.

Or my ex-father-in-law who was almost killed during military service forty years ago. Who, despite losing an arm and an eye, went to university and trained to become a teacher. Which he did for many, many years.

Or the group of severely disabled people I met who have formed their own group to help themselves and other disabled people live as full lives as possible, without help from other sources.

The thing is, while I know these are just personal examples, it’s not too much of a stretch to guess that there are many more disabled people out there like them. People who, like my father, probably don’t even think of themselves as disabled. By working, by getting on with their lives, they’ve continued to contribute their taxes and taken nothing from the state.

(I’m not saying, by the way, that that’s how it should be. If I’d lost a leg or an arm or an eye, I can’t imagine I’d be so willing to get out there and work. That’s just the kind of people they are.)

Like I say, what I find most depressing about this issue is that, of all the things in the world to be worried about, people are worrying about disability benefits. It’s the wrong target. And it’s the wrong target partly because we’re such a long way from talking about disabled people in a way that’s positive and inclusive. Whenever we – and it is we – talk about them as we do, we merely ensure that they remain in the margins, as outsiders for us to project all of our spite and fear and hatred and misunderstanding on to.

I’d like to suggest that we leave them alone. And find someone else to pick on.

NB: I think I should make clear(er) that I'm not suggesting that the ideal is that disabled people should get jobs and not claim benefits. Far from it. Disabled people should be perfectly entitled to benefits and not made to feel that they shouldn't be. The personal examples I used above were simply to provide an opposite view to those extreme, black and white, views espoused by Liddle and Dellingpole. And yes, I'm well aware that many disabled people claim benefits *and* work.

Further, I don't write these blog posts for a living. I write them quickly - very quickly - when I've got a few minutes to spare. So you'll have to forgive me if they're not always watertight.

Progressions and Setbacks

2012-01-18T11:11:00.003Z

It’s been a while since I wrote anything about Maggie and how she’s getting on.

Over the past few months she’s made progress in some areas and had setbacks in others. Which is to be expected, I suppose. Overall, she’s a lot happier and more contented. For the first two years of her life she seemed to always be unhappy. This, we suspect, was largely due to her terrible reflux and digestive issues. She still suffers with all of that but to a lesser degree.

Her general happiness seems to have also been affected by her growing awareness and understanding. As she now responds better to various stimuli, she’s much easier to placate. Everyone who sees her is impressed by how well she communicates and how much she understands. She’s often an absolute pleasure to be with. The only drawback is that she requires – demands – constant attention. Although she is happy for short periods stuck in front of the TV watching Waybuloo. And only Waybuloo.

Her sleeping has been erratic. For a short while she was sleeping through the night. But for the past five months she’s been waking up in the early hours, often for up to two hours, This means that Shannon and I have to take turns every night. Being awake with her in the early hours is still an awful, crushing experience. As I’ve said before, it’s during those times – when we’re tired, when there are no other distractions but Maggie – that it all comes rushing in. The sadness, the fear, the anger, the realisation that she will always be like this. It’s at those times that I often consider just giving up.

She’s made some good progress with eating. We took the rather bold step of deciding to just shove food into her mouth. I felt that the worst that could happen was that she would choke to death or fill her lungs up with food. But as it happened, she coped remarkably well. Her speech therapist assessed her while she was eating and concluded that her swallowing was sound. So there was no need for the surgical assessment that had been arranged. In terms of the actual eating, it basically consists of us pouring diluted custard into her mouth from a special cup. How well that goes depends on her mood and levels of hunger. But on the whole, it’s been a success. We never thought she’d be able to do anything like that. It gives us a little hope for her future.

Her weight continues to be an issue. A few months ago we were very pleased that she’d put weight on. However, she seems to be struggling again. There are moments when we’re changing her that we’re horrified and saddened by how thin she is; her ribs showing, her skinny rope-like legs, her scrawny arms. I think it’s time we looked into, again, her food intake. I suspect that part of the problem is that she was destined, like her sister, to be a big kid. She’s getting very tall (or, rather, long) but not very wide. Unlike a lot of kids with similar conditions, she’s very active. So she burns a lot of calories. Of course, her activeness is often due to spastic movements. Or maybe they’re not. It’s difficult to tell.

She’s been getting a hell of a lot from the various places she visits every week: nursery, school for parents (at Scope) and the Hamlet Centre. Those take up three mornings of her week. She’s very responsive while she’s there and, again, the people who see her are always impressed by her levels of understanding. Above all that is that she obviously loves going there.

I think that’s one of the things that we need to be more aware of – that everything she does shouldn’t always be centred around issues of care or development. It’s equally important that she’s just happy, that she has a nice time, that she’s treated – as far as possible – like any other little girl.

She loves – absolutely adores – rough play. Being swung around or thrown up in the air elicits squeals of delight. It’s just such a lovely thing to see and hear.

She’s enjoying, and sitting better, in her chairs. Although she still screams hysterically whenever we take her out in the car, however short the journey. So she can be taken out in her special pushchair and we don’t always have to assume that it’ll be a nightmare. Sometimes it is. The drawback to this is that Alice then has to walk. Unless we’re both taking the girls out. A simple trip to the shops is often fraught with all kinds of logistical problems. It’d be funny if it wasn’t so frustrating and difficult.

And there: Alice. She’s just something else entirely. Still the happiest girl on earth and so bright and clever and funny and lovely. No trouble at all. She deserves much more attention from us than she currently gets.

Overall, I’d say that things are a little better. It’s hard work still – very hard work – but routines and little progressions make it seem easier. Sometimes. At other times, it’s all too much. We still have moments when we just can’t believe that we have a severely disabled daughter. We look at Alice and can see how Maggie should have been. We still feel robbed and sad and lost. I imagine those feelings will never disappear – it’s just how well we cope with them.

Happy New Year!

2012-01-04T14:11:00.001Z

Maggie, from 27th December.

How EACH Makes a Difference

2011-12-19T10:17:00.003Z

I've written a guest post for Tom Albrighton's blog. It's about EACH (East Anglia's Children's Hospices) and about us. I'd be grateful if you could read and maybe, well, you know...

Thanks.

Please Help EACH This Christmas
.

My Problem With The Paralympics

2011-12-12T13:36:00.003Z

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.

Alice!

2011-11-18T18:55:00.003Z

This week it's just me and Alice at home. Shannon is in Texas visiting her new niece and nephew, Maggie is at Quidenham.

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.

Down Wymondham Way

2011-10-16T15:33:00.005+01:00

We made the most of Maggie being in Quidenham this week by taking the train to Wymondham. We had a very nice time.

Happy 2nd Birthday Maggie and Alice!

2011-10-09T00:27:00.006+01:00

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.

Happy birthday (yesterday), Paul!

2011-10-04T20:29:00.002+01:00

Oh dear, in the wish of making sure Paul had a lovely day for his birthday yesterday and last night (we actually went out - together!) I ran out of time to wish him a very happy birthday on here, the blog that would not be without him. Happy birthday, Paul!

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!

The Happy Eater

2011-09-27T11:45:00.002+01:00

Yesterday I fed Maggie a full jar of porridge. Followed by half a jar of egg custard. It doesn’t sound much but, for her, it’s an incredible amount.

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.

Happy Birthday Shannon!

2011-09-20T19:10:00.003+01:00

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!

A Breakthrough!

2011-09-12T15:19:00.005+01:00

Just a short post:

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.

New Post

2011-09-11T22:54:00.002+01:00

It's been a while. Too long. I was going to write a new post tonight but I'm too tired. In the meantime, here's a picture of Maggie and Alice:

Mission Accomplished!

2011-08-19T14:41:00.010+01:00

The results of the Night for NANSA are in!

So far, on the Justgiving page: £695

From the actual night: £348

Grand total: £1043!

So a huge thank you to everyone who donated, to everyone who turned up on the night, to all of the excellent performers who gave their time for free, and to The Birdcage for letting us use their venue and effectively hijack their Wednesday night.

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.

Thank you.

NANSA JUSTGIVING PAGE

Update on the Night for NANSA

2011-08-11T13:40:00.011+01:00

**UPDATE**

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:

http://www.justgiving.com/nightforNANSA

Thank you for your support. We hope to see you next Wednesday evening at The Birdcage in Norwich.

A NIGHT FOR NANSA:
WEDNESDAY 17 AUGUST
THE BIRDCAGE, NORWICH.

Performers:

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).

Happy Father's Day!

2011-06-19T20:46:00.009+01:00

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!

Chair Despair

2011-06-18T14:50:00.007+01:00

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."
.

A Quid For Quidenham

2011-06-14T14:44:00.007+01:00

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
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Throw Those Curtains Wide

2011-05-30T01:35:00.006+01:00

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.

Maggie

2011-05-16T15:11:00.006+01:00

Photos of Maggie from yesterday. Click to see them big:

At Last, Some Sleep

2011-05-14T23:37:00.002+01:00

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 Girls

2011-04-30T23:05:00.004+01:00

Maggie and Alice this afternoon.

Alice

2011-04-19T00:16:00.002+01:00

Alice this afternoon:

Sleep Debt Snatches*

2011-04-08T03:34:00.009+01:00

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).

Mother's Day

2011-04-03T20:35:00.004+01:00

From the Norwich Play Barn, a few Mother's Day pics:

HMD!

2011-04-03T00:02:00.003+01:00

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).

Competition Time!

2011-04-02T03:49:00.016+01:00

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.

Maggie

2011-03-18T18:52:00.004Z

Maggie, this evening:

The Days Are Just Packed

2011-03-13T23:59:00.002Z

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.

Anniversary

2011-02-24T22:13:00.005Z

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.

Our Beloved NHS

2011-01-25T23:01:00.010Z

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.

Hair Raising

2011-01-23T11:34:00.004Z

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.

Riven Vincent

2011-01-20T11:34:00.004Z

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.

January Stuff

2011-01-10T06:09:00.004Z

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

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

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

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

Which reminds me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Off The Boyle

2010-12-13T00:35:00.007Z

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).

MRI Results

2010-11-25T15:56:00.006Z

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.

A Break

2010-11-09T00:08:00.003Z

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.

No Thanks From The Loading Bay Ranks *

2010-10-26T22:51:00.028+01:00

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.

Photographs

2010-10-19T22:29:00.007+01:00

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.

Shannon and Maggie

2010-10-17T06:21:00.002+01:00

Baby Maggie

2010-10-15T04:37:00.006+01:00

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.

Birthday Blues and PLEASE DONATE!

2010-10-07T13:00:00.015+01:00

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.

Maggie Does Good. Alice Does Gooder.

2010-09-29T22:44:00.004+01:00

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.

Serenity Now

2010-09-24T15:40:00.005+01:00

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.

We Would Have Her Any Other Way

2010-09-21T21:24:00.005+01:00

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.

Rubbish and Sick

2010-09-13T11:09:00.009+01:00

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.

Alice at The World's End

2010-09-09T13:06:00.003+01:00

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

Maggie and the NHS

2010-09-03T17:20:00.008+01:00

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

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

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

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

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

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

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

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

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

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

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

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

Crossed wires and miscommunication are par for the course.

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

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

Maggie at the end of August

2010-08-26T00:56:00.005+01:00

This is the man who rescuscitated Maggie at birth. Who told us to prepare for the worst. Who told us that she’d be lucky to make it through the night. Who told us that we should, perhaps, think about saying our goodbyes.

Last week, nine months later: Shannon is at the hospital with Maggie, with this same man, effectively getting signed out, getting discharged, saying goodbye to the man who was supposedly the expert when it came to her care and development.

He could barely be bothered to look at her. This girl who – in defiance of the early prognosis – was sitting on Shannon’s lap, reaching out, smiling, looking for all the world like a normal baby. He could barely be bothered to look at her.

The utter cunt.

Shannon returned home very upset. It’s not that she was looking for expert advice and guidance (we’d given up on that a long time ago) but was perhaps hoping for him to turn to Maggie and say: “Wow. Look at the way she’s come on.” Or even: “What a lovely smile.” She was looking for a bit of humanity.

But nothing.

He asked after me though.” How’s Paul getting on?” Who cares? Fucking hell.

The truth is – and we’ve known it for a while – we’re on our own when it comes to Maggie. And I don’t just mean medically. It’s painful to admit but a disabled kid puts people right off. All sorts of people.

Julia, the community nurse we really like, suggested the other day that maybe Maggie would be better going to a nursery that deals exclusively with kids with special needs. Our inital reaction was that we wanted her to be with normal kids, in a normal nursery. But then Julia pointed out that it would be beneficial to Maggie to continue receiving the kind of care that has so far helped her to surpass all those early expectations.

This is a child who should have died. Who, when she didn’t die, should have been a quadriplegic with no quality of life. Imagine, for a moment, that you’re her consultant. Wouldn’t you be extremely impressed at the way she’s gone? Wouldn’t you be wanting to suggest to the parents things they could be doing to help her, to push her along this path of surprise?

(Path of surprise? Fucking hell.)

We get nothing.

For instance, Maggie’s reaching out. Literally, physically. So who’s there telling us that if you do this or do that she’ll be able to do it so much better? No-one. We make it up as we go along.

She’s done so well, so brilliantly. We sometimes forget that because, at the same time, she can be really fucking annoying. She’s awake half the night. She won’t be left for more than a minute. She’s constantly grunting and moaning and pissing us off. Yet, even with that, she’s still way ahead of where they thought she’d be. Her consultant should be over the moon about that. But he barely gives a fuck. Or, rather, gave a fuck.

My brother came to see us the other weekend. He’s a bit like me, my brother, but without the smoother edges. He was fucking brilliant with Maggie. He grabbed her, he took her out, he played with her, he threw her up and down and he didn’t – for a minute – worry about the fact that she’s disabled. He treated her like a normal baby. We haven’t seen anyone else do that.

I won’t tell him this but: Shannon and I cried while we watched him outside with her, carrying on as if all was as it should be. He was really great. I hope Maggie appreciated it.

They're eleven months soon, these girls. One-year-old next month. How time flies.

Alice

2010-08-11T00:51:00.003+01:00

We often say to people: "Alice is perfect. She's lovely and bright, an absolute joy to be with. And she doesn't give us a moment's trouble."

In response, we often hear: "Yes, XXXXX is like that too."

But it's not true. Because then they'll go on to say how XXXXX cries when he/she is left alone, or when he/she has her nappy changed, or when he/she is tired and/or hungry.

I can't stress it enough: Alice is a perfect baby. She doesn't give us a moment's trouble.

God bless her.

Because I don't believe in God, it means a lot when I say that.

One day we'll tell her how grateful we are. How happy we are to have such a perfect and beautiful daughter.

God bless Alice.

...And the optic nerve too

2010-07-19T23:04:00.005+01:00

I just wanted to add a little bit to Paul's post about the great news about Maggie's vision...and why it really is really great news.

Months ago, when Maggie was still in the hospital, the early eye examinations revealed that although the structure of her eye was fine - that she could probably technically see - the optic nerve connecting her eye to her brain was pale. This can happen in cases of prematurity, but it also occurs in cases of brain damage - and given that Maggie wasn't yet fixing or following on any objects, including us, we were kind of warned that the latter could be the case. And what would that mean? That the worst case scenario was that Maggie would 'see' things but she wouldn't understand what they were, she wouldn't remember them, she wouldn't be able to make any sense of them. So there really wouldn't be much point of seeing anyway. And it used to break my heart time and time again in the hospital to think that she was looking at me, seeing me, only to move my head out of her line of sight and she would just continue looking in the exact way. Would I have a little baby that didn't know from just looking at me that I was her mum?

Needless to say, I've been worried about those optic nerves and what they meant for a long time. At the appointment last week the consultant said that he wasn't even going to put Maggie through the eye drops and tests because he felt confident just seeing her look around the room at all the different people and all their different movements and their tester toys that she knew what she was seeing, that she was definitely taking it all in.

Of course they had to add in that her understanding could be delayed, slower, what have you but really, yet again, it's just about Maggie being so much better than they thought she would be nine months ago, five months ago, three months ago. She's a bloody superstar - who now smiles right at us.

Looking Forward: The Eyes Have It

2010-07-18T22:48:00.006+01:00

The chickens have been counted.

Maggie has been keeping her food down really well. She's hardly vomited at all. Except when she's had a cough. And even then it was a minimal amount.

She's also continuing to sleep through the night. She wakes early though: around 6am. Still, it's a vast improvement on what was happening before.

She's happier. Much happier. Which makes her more responsive and easier to deal with.

And here's a thing:

We took her to have her eyes tested last Monday. We knew she could see. But given the way she acts, combined with her squints, we worried that she couldn't see too well.

As it turns out, she can see very well indeed. Which means all sorts of good things in terms of her future development and learning.

Actually, I'm being a bit too laid back about this.

We were, of course, absolutely over the moon. Really, really happy.

It's another positive step forward. For her and for us.

And I have to say that although I always seem to be moaning about the NHS and the consultants, the doctors who examined Maggie's eyes were great. Not just because they were the bearers of good news but because they communicated well, they offered good advice and they were extremely professional and friendly throughout.

So she can see. She's keeping her food down. And she's sleeping through the night.

It just gets better and better.

More soon.

Looking Up. A Bit.

2010-07-11T23:50:00.008+01:00

Maybe it's safe to count our chickens.

For the past week, since last Sunday, Maggie has been sleeping all the way through the night. From 8pm-ish to around 6.30am.

Even better - much better: she's been keeping all of her feeds down. She's barely been sick at all. This, as you will know, is completely unheard of.

It deserves a massive hurrah!

This is what I wrote in a recent post:

"What we did, from a suggestion of one of the women at Quidenham, is increase Maggie’s omeprazole – the medication she takes to help keep her reflux in check. It turns out she was on the very lowest dose. We increased it and the consultants agreed to increase it. But they stayed strangely mute when asked whether if we’d have increased the medication earlier – months earlier – she’d have put weight on earlier.

At around the same time, however, she developed a cold and a very bad cough. Which she still has. It causes her to vomit. So we’ve yet to see whether increasing her medication will work.

If it does work, we’ll be extremely angry. Because it could have helped Maggie’s growth and development months ago."

It looks like it's worked. So we're extremely angry. And even angrier after we heard last week that Julia, a community nurse who does a great job of keeping an eye on Maggie (and us), apparently wanted to increase the medication earlier but was told not to. Presumably by Maggie's consultant. We will, of course, be getting to the bottom of this.

The downside of Maggie sleeping through the night is that she misses a feed. So we have to make it up through 'snacks' and increased dosage throughout the day. She desperately needs to put the weight on, remember?

There are, however, many upsides:

She's sleeping through the night because she's keeping her food down. More sleep equals better development. More sleep also equals a much happier and more responsive Maggie. She still cries quite a bit but she doesn't howl all the time. She isn't so distressed, so fucking miserable.

A happier Maggie means a happier us. Which means a happier Maggie. It goes round and round.

In a nutshell: the increase in medication appears to have worked. She sleeps much better and is much happier and will hopefully put on weight. (Things she could have been doing months ago. During those utterly crucial months.)

So Maggie's happier and we're happier. But before we get all hurrah about this: she's still a very clingy, noisy baby that constantly wants to be held (which is not surprising given that we had to hold her all the time when we fed her to keep her reflux in check which maybe we wouldn't have had to do had they increased her medication ages ago and... well, you see how this goes, how everything can be linked to the crappy care she's received so far).

A quick aside: her dietician (a trained NHS dietician who gets paid for being a dietician) said to us, after she'd failed to keep Maggie's vomiting and reflux and growth in check: "I'm all out of ideas."

All out of ideas. Fucking hell. I'm going to try that on one of my clients when I can't be arsed to do my fucking job properly: just ring them up and say: I'm all out of ideas. And they'll just say: Oh, okay, thanks.

Back to Maggie.

She still scissors her legs and doesn't bend her arms properly. She's still far too floppy and still has poor head control. She still hates going in the car or the pushchair. If we could crack the car and pushchair thing we'd be laughing. Well, smiling at least.

On Saturday we did something very normal: we went round to our friends Chris and Marie-Claire's house for a barbecue. It helped, of course, that they're lovely, accommodating people but it was especially good because Maggie was good. She got upset a bit and she had to be held a lot of the time but... she wasn't a complete fucking nightmare. And, crucially, we didn't think, before we went round, that it was going to be horrible. We hoped, because she'd been so much better, that it would be okay. And it was. More than okay.

I mention that because it's a step towards us getting our lives back. I mean, it's not as if we went mountain climbing or scuba diving every weekend. In fact, all we used to do was sit in the pub (oh, but it was great). But at least we left the house. A lot. With Maggie the way she is now, we feel as though we can do that more often.

And maybe, if she gets to be a really good girl, we can take her to the pub. What a fantastic hurrah that would be!

At last, from Shannon

2010-07-06T22:35:00.007+01:00

I've been more a follower of this blog than actually writing it...something I'd like to remedy, and regularly. But if you're reading this, you probably know what I'm like, so we'll see what happens.

The thing is, I've been finding it hard - overwhelming, actually - to get anything done that isn't what's immediately needed for Maggie and Alice, because that alone is so time-consuming and stressful and difficult to do. 7am-9pm, with probably a 30 minute slot when they're both either asleep or happy enough to be left alone for a little bit. We eat dinner, it's 10pm, tidy up a bit, and it's 11pm. Go to bed and fall asleep, it's 12am - with Maggie waking around 2am to be fed, back in bed for 4am. We haven't had a stretch of unbroken sleep longer than three hours in weeks and weeks, months. And it's really starting to take its toll - I didn't realise how much until Maggie slept through one night and I got six hours straight. And I felt so much better for it - more positive, less vague and teary, more capable, just more human.

Because there's so much that needs to be done that isn't getting done - writing/calling/emailling people, sorting appointments/sleep systems/equipment, sorting going back to work, sorting possible childcare, sorting the house, shopping etc etc etc. So much that I just feel paralysed and get nothing sorted, not even the stupidest, slightest thing like having bloody food in the house. What to have for dinner? I can't think what. I really can't - I just draw a blank. Paul's so much better with this than me, even though he's got even more on his plate - it must be really fucking annoying to have me flake out like this all the time. I'm really sorry to everyone that's waiting to hear from me - I've just been overwhelmed by it all.

It's been a really hard month, six weeks. Maggie's been ill nearly constantly - starting with vomiting old blood that could have been gastroenteritis or esophagitis from her reflux. She had that twice and as soon as it passed she got a cough - sounds minor enough except that for Maggie a cough triggers more vomiting, which we didn't really think possible. Then she got a stomach bug - more vomiting and a week and a half of diarrhea that required rehydration treatment because it was combined with the vomiting. I've spent hours and hours at the hospital with her, each time leaving with not much more than a hopeful shrug that things would get better.

She's been losing weight when we so desperately need her to gain it - it makes me feel so helpless and frightened to see half of her food pour out of her mouth, and nose, knowing that it's stopping her from gaining weight, stopping her from getting the nutrition her brain urgently needs. And, unsurprisingly, she's been so unhappy, constantly tired and upset - which puts a stop to her physiotherapy, speech therapy etc. It's very wearing, an unhappy Maggie - it's also been really hot, which doesn't help. She was sleeping in just her nappy and I found it really upsetting to see her like this - she's so thin and stretched, with thin and stretched arms and legs. And it was rotten, rotten luck that she was at her worst this past week when Louie and Isaac were down. Luckily Alice was there to save the day as much as she could and salvage their opinion of their little sisters - completely smitten by Isaac and Louie and smiles all round.

But maybe, maybe, Maggie's finally on the mend. She slept through until 5am a few nights back, which we thought was an indicator of her getting ill again because that's the only reason she's slept that long before. But then she did it again - and woke up really happy and smiley. And she wasn't sick at all - it just stopped. Of course, a big part of me worries that this means there's something else going wrong that we just don't know about yet - how can it just stop? After so long of being so sick with so many feeds? She slept until 7.30am yesterday morning, and again today. One of our carers said that it could be just complete exhaustion from being so ill for so long...I hope it's more than that. I hope Maggie's finally turning a corner, getting on top of all the dreadful things her little body keeps getting thrown at it. She deserves a bit of peace and happiness, my poor little girl.

* Photographs of our week with Louie and Isaac. You'll note that in these photos Alice is wearing the greatest T-shirts in the world. The fact that they make her look like a boy is beside the point. They're the greatest T-shirts in the world because they have Spider-Man on them. You should have a T-shirt as good...

And isn't it lovely to finally have a post from Shannon? Give her a big hurrah and hugs!

Maggie and Alice and Shannon

2010-06-29T12:42:00.003+01:00

A few pictures of Alice eating her first ever Farley's Rusk. It's the start of the slippery slope to obesity.

And a couple of pictures of Maggie and Shannon, taken at the beautiful Rosary Road cemetery here in Norwich. More of which can be seen here: Cemetery Pics.

Click the pic to see the pics:

At Last, A New Post

2010-06-25T00:52:00.004+01:00

One of the consequences of having babies at a later age is that you get tired quicker. And things start to ache more.

One of the consequences of having a disabled baby at a later age is that your rotator cuff really fucks up. So much so that you can’t even type, let alone haul babies around.

Hence, in part, the recent silence.

It’s still fucked, by the way, my rotator cuff. I’m seeing an osteopath and everything. Spending my own money too. Which tells you a bit about how much it hurts and how much I want to avoid going through the fucking NHS. If I left it with them I’d probably end up having my arm amputated. In 2019, when they finally got round to seeing me.

Anyway.

There’s been loads happening here. Probably far too much for me to remember. Which is why I’m going to do this post in chunks, rather than attempt to construct the usual easy-to-read narrative that I know you all love and appreciate. Plus, it’ll allow me to give my rotator cuff appropriate rests.

Rotator cuff. It’s like something you’d expect robots to have.

First things first is that we’ve recently had visitors, as you’ll see from the photographs in the previous post. Shannon’s mum and dad (Grammy and Grandpa) followed by our friends Kali and Marlisa.

It was great having them here. We like having visitors. It makes things a little easier for us and it reminds us that there’s a world outside of all the crap we have to deal with. And it’s good to have people – people we like, people we’re close to – telling us that we’re doing a good job. It’s particularly good to see the way they react to Maggie, especially when they first see her: No, she’s not this desperately damaged kid.

Except that she is, of course. But we’re going to try to mend her a little bit.

One of the things that Marlisa said, that Shannon mentioned to me after she’d left, is that this blog, for all the good things about it, doesn’t get across the amount of love there is in this house. Especially the love there is towards Maggie.

And there is a great deal of love, for both girls. We adore them.

But the thing is, Maggie can be a massive pain in the arse. And she’s been more of a pain in the arse these past few weeks than she normally is. On account of her incessant vomiting.

She had big problems coughing up brown bile – or what the consultant called ‘coffee granules’. Twat. It was blood. Probably a dose of gastroenteritis. Or it could have been the wear and tear on her stomach from all the reflux.

So there she was coughing up brown stuff and vomiting up her milk during every single feed. Very worrying. Because one thing that she needs to get sorted is putting weight on. She’s far too small.

These first two years, as with all babies, are crucial. If she stays small, her brain stays small. She desperately needs to pile the weight on so that her tiny brain develops better. This is, I stress, absolutely vital. We’ve got just over a year to get on top of it.

And given all that, you’d imagine that Maggie’s highly-paid, highly-intelligent consultants would be on top of it, doing everything they can to give her the start in life that she both needs and deserves.

But of course they’re not. What we got – in a nutshell – was the usual fucking about. The usual half-hearted stabs at solving the problems. The usual guesswork instead of expert opinion. The usual acting when we demanded they act, rather than acting off their own back. The usual childish defensiveness when questioned. The usual haplessness and gormlessness that we’ve come to expect from them and the NHS.

So rather than these highly-paid, Friday afternoon golf players doing anything for Maggie, we had to rely, again, on the good sense and attentiveness of the lovely people at Quidenham. Who suggest things, who ask questions, who obviously have Maggie’s best interests at heart. If I was the kind of lunatic who believed in God, I’d thank God for them.

She’s there, Maggie, coughing up brown stuff and is barely looked at by the consultant. He told us to bring her back on Friday afternoon. But on Friday morning we got a call from one of his minions telling us that he’s cancelled the appointment and can we bring her in on Monday instead? Is this because he thinks it’s right for Maggie or because it’s convenient for him? I asked.

At no point did she, or anyone else, actually ask how Maggie was. She could have drowned in her own blood for all they knew.

Dramatic? Honestly, you should try living with the endless frustration of having to rely on these people. They’re not a help, they’re a hindrance. Yet we have to keep deferring to them because… well, because we need the reassurance that we’re doing the right thing for Maggie.

What we did, from a suggestion of one of the women at Quidenham, is increase Maggie’s omeprazole – the medication she takes to help keep her reflux in check. It turns out she was on the very lowest dose. We increased it and the consultants agreed to increase it. But they stayed strangely mute when asked whether if we’d have increased the medication earlier – months earlier – she’d have put weight on earlier.

At around the same time, however, she developed a cold and a very bad cough. Which she still has. It causes her to vomit. So we’ve yet to see whether increasing her medication will work.

If it does work, we’ll be extremely angry. Because it could have helped Maggie’s growth and development months ago.

Here’s some good news:

As each day passes she gets brighter and a little happier. She smiles, she fixes and follows and she responds to all the appropriate stimuli. She’s not there yet though. She still puts on her thousand yard stare and she’s still boss-eyed.

But we think she can see quite well. She might have a problem with focusing on distant objects but overall she manages to catch most things. We were in the back of a taxi last week and we noticed, for the first time, her eyes properly darting to catch everything that flashed past. And in the pitch dark, when we’re sitting feeding her in the middle of the night, she can quite clearly see what we can.

She is, in many ways, an absolute delight. She’s very cute and she’s got the best smile. And she’s started to laugh too, when I bite her feet, albeit in a bit of an odd way. She loves music and she loves being jiggled around and played with. And she really loves me and Shannon. A bit too much perhaps. She is, if nothing else, a very clingy baby: only me and Shannon will do. Which is a pain. Shut up Maggie! Just lie there for a bit! Leave us alone!

She’s still very noisy. She still doesn’t sleep too well. She still hates the pushchair and she still hates the car seat. So going out is always a joy.

Physically she’s making progress in some areas and not doing so well in others. She still scissors her legs. She still points her feet down when she tries to stand – they need to be flat. She’s still a bit too floppy. And yet she’s also a bit too stiff in her arms and thighs. She still twists her head to one side and needs to be encouraged to look the other way.

But she’s showing all the signs of wanting to crawl – and crawl properly - which is more than her sister is.

On top of all that: we’re struggling to cope with it all.

We don’t get enough support. We don’t get enough advice. We don’t get enough of a break. It’s just relentless. Everything about our lives is to do with Maggie and her needs. It can get extremely wearing.

And we’re struggling with the sadness of it all. It isn’t fair and we haven’t, despite what we tell ourselves, come to terms with that. We know it isn’t fair because Alice is so perfect in every way and there’s no reason to suppose that Maggie wouldn’t have been just the same. This could have been really easy and happy.

Shannon is struggling because it’s never-ending. All day long and all night long it’s about the girls, about Maggie. She’s all-consuming. Me, at least I get a bit of a break from it through work. Shannon doesn’t get that break.

(Shannon, by the way, is the best person to talk about this. I don’t want to put words in her mouth.)

Me, I’m struggling with worrying a bit about my age. What it means for me and what it means for Maggie. In the dark, as I’m sat there with a screaming, vomiting Maggie I do despair that this is how it’s going to be for the rest of my life. Obviously she’s not going to be a baby but she’s always going to need care, will always be demanding.

When she turns 18 I’ll be 60. Fucking hell.

So, effectively, the rest of my decent adult years will be spent caring for a disabled daughter. I’d love to be able to say that I’m okay about that. But I’m not. Not really. I’d like to have a life too. One that goes beyond me pissing about on Twitter because I think it’s the closest thing I’ve got to a normal life. In one hand Maggie, in the other hand my iPhone.

Another thing about that is that when I get older I’ll be less able to cope with Maggie. Maybe she’ll have to be looked after by support groups or helpers or people within the disabled ‘community’.

Over my dead body.

Recently I seem to have seen more disabled people than I have in my entire life. This is partly due to the fact that I’m currently writing a website for a disabled self-advocacy group. A group run by people with learning difficulties for people with learning difficulties. So I’ve had to immerse myself in their world: reading case studies, sorting through photographs, meeting them.

On paper, it all sounds great. Disabled people empowering themselves and trying to live as normal lives as possible. Good for them. But as I’ve said before, I find it all very strange and very sad. Because try as they might, they don’t exist in our world. They exist in their own twilight world.

I attended a meeting earlier this week and there were loads of them there. They were, of course, all nice enough and coping well and seemingly quite happy. But all I kept thinking as I looked at them was which one of them Maggie would be closest too when she got older. So then I began to despise them a bit.

I was chatting to this bloke in a wheelchair who couldn’t move his arms and legs properly and who was obviously a bit backwards, as they used to say. I just became overwhelmed with how sad it was that he wasn’t really a part of our world. Sad about everything that he was missing out on. Because it’s great in our world. It’s great to be able-bodied and intelligent, and to be able to communicate properly and not be patronised by well-meaning clowns. Nor pitied by self-pitying cunts like me.

Fucking disabled people. I’m sick of seeing them and I’m sick of having to think about them.

Maggie stays in our world, with us.

I was singing ‘Daisy Daisy’ to her the other day, as ‘Maggie Maggie’, and I couldn’t get past the part about it not being a stylish carriage. Because it made me think of her future life and how she’ll never quite live like a normal little girl or a normal young woman. That she’ll most likely never have a boyfriend or go out dancing or get married or have children.

It’s a bastard, it really is.

Happy Father's Day!

2010-06-20T05:37:00.002+01:00

It's been a really difficult time and there's loads and loads we need to catch up on here but first things first - and I can't think of anything more firster than wishing my Paul a very happy Father's Day. He is, quite simply, the best there is - now five times over. Maggie and Alice, and Tom and Louie and Isaac, are very lucky kids to have such an amazing, loving dad.

Hurrah for Paul!!

Grammy and Grandpa, Kali and Marlisa

2010-06-05T15:51:00.002+01:00

There's so much going on at the moment. Maggie's been ill. I'm currently swamped with work. Shannon's swamped with babies.

As you may know, we had lovely visits recently from Shannon's parents. Followed closely by visits from our friends Kali and Marlisa.

Here are pictures of those visits. Words later.

Click to see the gallery:

Quidenham

2010-05-30T23:16:00.002+01:00

We dropped Maggie off for a few days' stay at Quidenham this afternoon.

We really miss her.

All The Way From the USA

2010-05-21T14:00:00.006+01:00

We've got Shannon's parents with us at the moment. It's really lovely having them here. They're marvellous with the girls and I think it's obvious that the girls really love them. Some solid bonding stuff going on!

That sort of explains the lack of posts recently. It's been very busy.

Hopefully Shannon will write something soon. Particularly about Alice's first trip on the train. To the seaside. Which I missed. And really regret missing.

What a fucking idiot I am.

But never mind eh?

In a nutshell: we're still having all the usual crying/puschair/car seat/feeding/vomiting problems. But overall - more than overall - I'd say that Maggie is making fantastic progress. Every day she's a little more alert and bright.

But, as always, we have to stay on the ground a bit about that. She's still not showing any signs of being able to feed properly. And that, right there, is all the indication we need that there's something not right going on in her brain.

Like we didn't know.

Alice. Well, Alice is thriving and developing in the most beautiful way. And she's still as good as gold.

We've got some lovely, proper photos to post - but in the meantime here's a selection of pictures taken with the crappy iPhone camera:

First Love

2010-05-14T11:11:00.006+01:00

In lieu of a new post about Maggie and Alice, why not have a look at my new music blog? I write it because I haven't got enough on my plate. And because it's also a real distraction.

Click the box:

Downs. No Ups.

2010-05-10T14:35:00.004+01:00

It's been a very tough week this past week. The progress we seemed to have made turned out not to be progress at all: she's now as bad in her pushchair and the car as she always was. And her sleep is back to being very erratic too.

She's very demanding and very difficult to manage. She's also very noisy and nothing seems to please or placate her. We can't go out with her and she doesn't sleep when we stay in. So there's hardly a break from her, hardly a break from it.

Unsurprisingly, Shannon and I have been quite down recently. I know that it often appears that we're coping very well and making the best of it, but I think we're reaching the end of that. It's just getting to be too much.

It really is quite miserable.

Ups. And Downs.

2010-05-03T11:35:00.021+01:00

It's been, relatively speaking, a fairly good week for Maggie. But perhaps not so great for us. Very stressful and tiring. And sad, too.

The week started badly with Maggie picking up a dose of RSV at Quidenham. Never heard of it? Neither had I. But here it is: RSV.

We'd noticed that she was a bit snuffly in the morning so decided to take her up to the Children's Assessment Unit (at the hospital) that evening. We rang in the afternoon to tell them we'd be there at 5.30pm to fit with her tight feeding schedule. We arrived just after 5.30pm. We left over three hours later, with both Maggie and Alice tired, hungry and very unhappy. Almost three hours of standing around while being told that a doctor would see us soon.

When he finally arrived he took a swab, gave us some nose drops and told us to keep an eye on her. The bloke next door could have told us that. And he'd have been a bit quicker about it too.

The good part of this week is that we've been getting out and about more. Nowhere special, just trips out in the car and with the pushchair. We went to the city on Tuesday and, for the first time ever, Maggie didn't get hysterical. In fact, she seemed quite happy and even fell asleep in the pushchair. I know that may sound like something minor but, really, it's massively significant. We were really happy.

(We were also happy that day because I picked up a copy of the new Fall album which, I can guarantee, is better than anything you've heard this past year. These past two years.)

Mind you, we've been out a few more times this week and those trips weren't as successful. But still better than they used to be. I think we should go out somewhere every day, even if it's only to the supermarket - so that she gets used to the car and the pushchair. So that she gets used to normal life.

We had another, similar, triumph when, during the course of being fed, Maggie fell asleep in her chair. Again, it sounds like a minor thing, but it's equally significant. She normally manages ten minutes in that chair before howling and arching. It just proves that it is possible for her to relax a bit and behave a little more like a normal baby. We just need to persevere.

Other good news is that she was visited on Wednesday by a woman from the Sensory Support Unit. It became apparent quite quickly that her expectations were that Maggie would be in a bit of a state, sight-wise. She was pleasantly surprised then that she seems to be able to see reasonably well and is fixing and following. She's not brilliant, and she still has a fair way to go, but it's progress. Good progress.

Overall I'd say she's more responsive and alert than she used to be. We're getting more social smiles and it's obvious that she's aware of, and engages with, her environment. Of course, this all seems fabulous until we glance at Alice and see how far ahead she is. But still, it is progress - and it shows us that progress is possible.

The not so good parts of the week have been our continued battle with her sleep. It's all getting a bit much. We sit there for two hours every evening, feeding her and coaxing her to sleep. Throughout the whole of this time she screams and cries. She does the same thing when she wakes in the middle of the night. Written down, it doesn't sound so bad. But it really is extremely frustrating and tiring. On top of that, she doesn't sleep much in the day. Not only is that not good for her and her development, it also means that we get absolutely no break. And when I say we, I really mean Shannon - because at least I've got work as an escape.

Our lives are all Maggie, Maggie, Maggie. Which would be fine if she was just a little easier and, more importantly, if we didn't have Alice. Poor Alice, who is just so perfect and well-behaved and lovely and who gets so much less attention than she deserves.

* PS If you're interested, I was profiled on the highly-respected Normblog site last week where I talked about, among other things, this blog. More here.

Click the picture below for a gallery of recent pics:

A Break

2010-04-26T00:07:00.002+01:00

They had a last-minute cancellation at Quidenham on Friday. So we took Maggie there that evening. We're picking her up tomorrow (Monday) morning.

We haven't done anything too wonderful in her absence. Shannon had her hair cut on Saturday. Alice and I met her later in town and we all pottered about. We watched a bit of crap telly last night, got a little drunk and awoke at a more leisurely time this morning.

This afternoon, however, we took Alice swimming for the first time. And, as predicted, she loved it.

It's possible that we don't mention enough how wonderful - and wonderfully easy - Alice is. It's not just that she's in bed by 7.30pm and awake at around 8.30 the following morning. It's that when she's awake she's the most easygoing baby. She's very bright, very happy and an absolute joy to be with.

If we just had Alice we'd be the envy of parents everywhere. Our lives would be incredibly easy.

But the strange thing - and actually, maybe it's not that strange - is that we really miss Maggie. Even though she's a massive pain in the arse, and even though almost everything about her is difficult, we really wouldn't want to be without her.

Future Growth

2010-04-22T22:18:00.005+01:00

Maggie's physiotherapist reckons she's doing brilliantly. And not just brilliantly for someone of her condition. This news cheered us up no end.

Her dietician, however, informed us that she's not put on weight. That she may even have lost a bit. This news didn't cheer us at all.

But that's the thing with Maggie: one minute it's this, the next it's that.

Overall, she's making good progress. She's making more eye contact, she's fixing and following, she's giving us the odd social smile, she's reacting to different stimuli and she's obviously very keen on us. I'd say she was like a three-month old baby. Or a two-month old. Not great, but it at least demonstrates that progress is possible.

And talking of progress, I've been thinking a lot about her future recently, about her life as an adult. As I was driving home today there was some fella who runs a day centre for disabled people talking about the kind of things he has to deal with. And when he spoke about the adults who go there, and what they get up to, it struck me that they exist in this kind of twilight world of disability. I mean, how often do you come across disabled people on an average day? Hardly ever, I'd wager. Yet they're out there somewhere, scurrying about in the skirting boards.

At Quidenham the other week they asked Shannon if we'd like to come with them on a big trip to Colchester Zoo. A special tour, after hours, when everyone else has left. Er, no thanks. We'll take Maggie to the zoo in the same way as everyone else goes to the zoo.

At the moment she's got us to love her. To be her friends. Who will she have when she's older? Well-meaning carers? Other disabled people? Social services?

I don't want her in that world. It's a rotten, sad and rather pathetic world. I want her in our world.

Pictures from this past week - taken on my iPhone, so the quality's not great:

Disappointed

2010-04-18T13:48:00.003+01:00

We'd been looking forward to it for ages: Maggie at Quidenham for a couple of nights. Shannon and I were going to go out for the first time together since the girls were born while Tom babysat Alice. The following day we were going to go swimming and nip into town. Just a tiny period of normality, a nice - and much-needed - break.

They rang this afternoon, a couple of hours before we were about to go, and cancelled.

Shannon very upset. Me too.

Bollocks.

Five Go Mad in Norwich

2010-04-11T23:55:00.009+01:00

The girls were six months old a few days ago, on April 9th. Six months. I can't decide whether it seems longer than that or shorter than that.

This past week they were joined by their older sister and brother, Louie and Isaac. It was, as ever, a joy having them here: they make me happy by just being around. You really can't beat having a house full of kids.

Alice took to them both immediately, and to Isaac in particular. He has a real knack for making her laugh. And as she's now starting to laugh properly, it's pretty wonderful seeing her so full of joy.

The weather while they were here was great. Except on the Wednesday when it suddenly became very cold, grey and miserable: the day we decided to go to Cromer. It was quite a significant trip for us because it was the first time we'd taken Maggie on such a long journey that didn't have some connection to her care. Of course, she howled and screamed all the way. And all the way back.

To be honest, her aversion to the pushchair and the car seat is beginning to drive us a bit mad, especially now that the weather's better. We're practically housebound. Well, we're not, of course, but it feels like it sometimes. It's such a shame that we can't just go out as a family and have a nice time.

We're also still persevering with getting her bedtime/sleeping routine sorted. It's been very difficult and very trying and tiring. We're exhausted. But if we crack this - if we can get her to better get herself to sleep - our lives will be so much easier.

By the way, if you live thousands of miles away you should have taken it as a given that I understand you can't just nip over to see us. I'm referring, of course, to my 'plea' in the last post for people to come and visit: "Make a bit of fucking effort" etc. My attempt there was to boldly state that if you're thinking of coming to see us, please do - especially if you live here in Norwich. Just come and see us. Don't worry about whether you might be intruding or whether we're up to our eyeballs in shit. Just come and visit. We'd love to see you.

****

Aside: Last week I went to see the comedian Richard Herring with my friend Andy. He was fantastic - Richard Herring, that is. You may recall that he's the fella who raises loads of money for Scope, the charity for people with cerebral palsy. He's a very good man. Anyway, he also does a podcast where, for donations, he'll mention your name. So as a result of Andy forcing a tenner on him at the gig, he mentioned our names in last week's podcast. And now - now that I've been called a cunt by Richard Herring - I think I can die happy. You can hear him doing it here: at around 4:30.

Pictures below from this past week. The last four taken on my iPhone*, hence the crappier quality. Click to see the gallery.

* I mention the iPhone by name because, a) I'm a bit of a wanker, and b) because it's new and I love it very, very much. It is now an integral part of me. We are as one.

Spring Bulletin

2010-04-01T00:47:00.011+01:00

At last, a new post. Unfortunately, it's written by me again. So all you Shannon fans out there will have to wait a little longer.

Because it's been a while, there are many, many things I could write about. Every day there seems to be some new event or incident or turning point or thing I can moan about. Luckily, I've got a terrible memory - so this shouldn't take too long.

First of all, I should mention our consultation with Maggie's consultant, Dr Roy: it was nicely positive. Luckily, Maggie was in a very good mood throughout her examination so it was quite easy for him to get a measure of how she is physically. The downside to that is that he didn't really get a measure of how she is behaviourally. I'm sure he must have been thinking what a good little baby she is.

On the whole, I'd say that things are positive. This doesn't mean that she's making fantastic progress or defying expectations. It means that she's not deteriorated and that she seems to have the potential to be a little better than we first thought she would be. Possibly.

Her legs are good. Her arms are less good, but not absolutely terrible. She's putting on weight at a fairly decent, though modest, rate. Her small head is continuing to grow.

Aside: did you know that your head size is determined by how big your brain grows? It's obvious really, isn't it? It's why it's so important to us - and to her - that her head gets bigger.

He had a look at her eyes and noticed her obvious squints. She fixes and follows but it's not consistent and it's not particularly strong. So we took her to see the opthamologist who said:

It's good that she has squints in both eyes. This means that they're both 'working', so to speak. She fixes and follows but it's not consi... You get the idea. So yes, she can see. But we don't know what she can see, how well she can see or whether she can even make sense of what she's seeing. It's a right old game all this, I tell you.

At the moment - over these past three nights - we're trying to get Maggie into a sleeping routine. We're doing what works with other babies and what worked with Alice: we put her down and if she cries we leave her. For a few minutes. Then go in and comfort her. And then leave her. And then go in and comfort her. Etc. It normally works a treat.

We don't know if this will work with her. Babies with Maggie's condition have different needs. What we've got to determine is whether getting her to sleep is something that can be tackled through the part of Maggie that is basically a normal baby. We won't know until it succeeds or fails.

At the moment, it's failing. She's mostly awake - and screaming and crying and twisting and turning and getting tangled up and pressing her head against the cot bumper - between her feed at 8pm and her feed at 12am. During the latter feed she gets a dose of melatonin which enables her to get to sleep until any time between 6am and 8am. So yes, that's something.

I think she needs to learn how to get herself to sleep so that she's a bit happier. Her default position is one of distress. She's almost always crying.

I mentioned Quidenham before didn't I? It's a 'hospice' for kids like Maggie. They're great there and they do a fabulous job. What we particularly like is how much they like Maggie.

They had a cancellation the other weekend and rang to ask if we'd like to have Maggie stay there. Of course we did. With reservations. On the Thursday night Shannon and Alice stayed there too, in the family room (so Shannon could settle Maggie in and I could get on with some work). On the Friday and Saturday nights (and day times) we left her on her own.

It was good for her and it was good for us to have a break. We were able to do normal stuff like eat dinner, watch a film and make a trip into the city. Alice went to bed at 7.30pm - me and Shannon were free until the following morning. Hurrah! The sad bit - the really sad bit - was that we got a taste for how nice it could all have been had this terrible thing not happened.

What was sadder though was that when we went to pick Maggie up on the Sunday morning it was immediately apparent how different she is to Alice. And how she isn't like a normal baby. When she's here with us, all the time, it's easy to get used to her and how she is.

We've had visitors these past few weeks too. First of all, Shannon's brother Jim, sister-in-law Kirsten, niece Gretchen and nephew Sammy came to see us. It was lovely to have them here. Alice was a little shell shocked at seeing new faces (i.e. she screamed) but she seemed to like them all - particularly Gretchen, who was smashing with her. (Absolutely lovely kids, by the way, Gretchen and Sammy. If you know them, you'll already know that.)

They were followed very closely by my mother and her husband Brian. And it was lovely to have them here too. The girls received specially monogrammed teddy bears each, which they seem to like very much indeed.

I think we should have more visitors. It makes life seem a little more normal. So if you're reading this and thinking to yourself: "Hey, maybe I should make a bit of fucking effort and go and see Paul and Shannon and the girls," then why not make a bit of fucking effort and come and see us? Really, it's not hard and it wouldn't kill you - especially if you like us (which I suppose you must, if you're reading this).

Oh, and it was exactly a year ago today - on April Fool's Day - that we discovered we were having twins.

Recent photos. Click the pic to see the gallery:

Interim

2010-03-23T12:19:00.002Z

It's been a while.

We've been very busy. And we've been entertaining a few lovely visitors recently. If entertaining is the right word. Which I'm sure it isn't.

Anyway, we've got new pictures and loads of stuff to rattle on about. But not now. We've got the lovely Gina from Quidenham here looking after Maggie all afternoon. So me, Shannon and Alice are going to make a rare trip into the city to enjoy the sunshine. And to do mundane things like go to the bank and pick up sundries.

Love to all.

Happy Mother's Day Shannon!

2010-03-14T23:57:00.012Z

Happy first Mother's Day to Shannon!

This is a brief post as it's late and I'm knackered. But I wanted to get these pictures up. We'll write something tomorrow. Something about the following:

Quidenham.
See earlier post. This is on Shannon's to-do list.

Helen.
You may have seen Helen's many comments during the course of this blog. We'd met her before - a couple of years ago at our friends Rob and Sally's 40th birthday do - but last week was the first time we'd really met her. The great thing about it was that, because we've been communicating so much - and because she's been so fantastic, so supportive and so helpful - we felt as though she was already an old friend. It was just great having her here. Not only is she a superb source of wisdom and information, she's also extremely nice - and a very good laugh.

She's been a massive help to us. And we really appreciate it. So please, doff your cap in her general direction!

And a big mention to Rob too, who brought Helen with him, all the way from Nottingham. It's always a pleasure to see him. I was genuinely sad to see them go. But don't tell Rob that - I'll never hear the last of it.

Mother's Day.
Today was Shannon's first Mother's Day and, of course, it was rather bittersweet. I'll let Shannon write about it, as it's her day. But I'll just say that hopefully next year we'll be in a position where we can go out and do something. That is, go out to the pub.

Pictures below are from the above. The last four are from today, Mother's Day.

But aah, look at that picture below - two lovely girls watched over by two wonderful gentlemen.

A big hurrah for Shannon!

Click the pic to see the gallery:

Woods etc.*

2010-03-08T00:14:00.009Z

It's been a funny week. Hectic and tough. Shannon and the girls at Quidenham for a couple of days. Us being visited by all manner of community health types. Me working.

In brief:

Shannon and the girls had a lovely time at Quidenham. It was much better than expected. I'll get Shannon to write more about this soon.

Maggie was weighed on Friday and is now just over 12 pounds. So she's put on weight at a fairly nice rate. Alice weighs 18 pounds.

We've stopped her 4am-ish feed. Friday night and last night she slept from around 1am to 8.30am. Which is great. But not as great as her sister - 7.30pm to 8.30am. What an angel.

She's about to go into her own room and in her own cot. Maggie, that is. So fingers crossed.

Yesterday and today she was a little calmer. A little. But we're not counting our chickens. She's still doing the screaming thing and being a right pain in the neck. So we're not in Norman Rockwell territory yet.

We went for a walk today that, while traumatic, wasn't as traumatic as previous walks. Maggie screamed and got herself into a state. But not as much as she has done before. And she even slept for a bit. So I think we'll persevere with this pushchair tough love thing.

She adores music. It's an instant calmative and yet she also seems to pay attention to it. Her favourite at the moment is Baby Love.

More soon.

* Title courtesy of Alice Oswald who, as well as having a great first name, is probably the best poet currently writing in English. Most of her poems are 'about' nature and all that nonsense but it's really in the way she writes: the rhythm, the musicality, her use of words. Like Ted Hughes but better. Do yourself a favour and buy here: Woods etc.

Click the pics to see them big.

Quidenham

2010-03-02T00:10:00.000Z

Tom and I took Shannon and the girls for their overnight stay at Quidenham this afternoon. Or maybe two nights, depending on how it goes. Quidenham is a children’s hospice that provides care, support and relief for parents with disabled kids. More information here:

Quidenham.

The great thing about it is that they take care of Maggie the whole time Shannon’s there. If that’s what she wants. Of course, it’s not a complete break because Alice also needs looking after.

Me, I’m staying here in order to get on top of my work and all the admin and related bullshit that is now a major feature of our lives. I may even tidy the house up a bit.

Maggie officially came home last Wednesday, with next to no fanfare. Mainly because she’d already been home so often. It has been, for the most part, really hard. This is due largely to the fact that she’s constantly crying or grizzling. Wind? Reflux? Cerebral irritations? It could be all of those things. Or it could be that she just needs to calm down a bit and settle into her new(ish) environment.

The very nice woman at Scope told us that with Maggie it’ll probably be a case of doing things, and expecting things, in very tiny steps. So when we finally get her into her own bed and her own room we should definitely try to get her into a good routine. But do it at a much slower pace.

Her miserableness has an impact that goes beyond merely upsetting (and annoying) us. While she’s like this it’s very difficult to get her to engage with things like physio and speech therapy, and even normal play. Which, of course, isn’t great for her development.

It’s interesting though, the fact that she’s now starting to annoy us a bit. I think it’s healthy. Initially, we felt guilty about this but we’re starting to get over it. Well, I am anyway. I think it’s perfectly fine to admit that she can be a real pain in the arse. As I expect she will be for years to come.

But the other side to that is that I find I’m getting more and more upset for her. I mean, feeling so desperately sad and sorry for her. In the early days I cried a lot. And then I stopped crying and got angry. And bitter. I’m still those things but I’m now back to the crying as well. Which, I suppose, is understandable - it is all very overwhelming. Not just with Maggie but with Alice too; and also with Louie and Isaac (who I don’t pay nearly enough attention to). On top of that there’s my work. I’m trying to build something here, something that will go beyond a few nice jobs and bringing in a bit of money. But I can’t seem to find the time or manage my priorities properly. So I end up panicking and worrying and sometimes doing the wrong things. At the same time, I try to present myself to clients (and prospective clients) as a proper, focused, grown up businessman who has no problems at home. And on top of all that there’s the constant worry about money and the realisation that, while money can make anything in life more bearable, in Maggie’s case it could be critical.

She keeps popping into my head, does Maggie. She keeps making me cry.

See, I think this is one of the things that’s sometimes forgotten: that it’s so sad for Maggie that she’s the way she is. I don’t want her to be like that. I want her to be a normal little girl who will grow up into a normal, healthy, young woman. I want her to have boyfriends and go out dancing and drinking and generally behave like a normal girl. Basically, I want her to have a much better chance than she currently has of being happy.

What’s contributing to my sadness is that we’re slowly entering the world of disability. I find it very strange and difficult and can’t understand why these people aren’t just destroyed by how horrible it is. Not just the disabled people themselves but the carers, the admin people and the charity workers.

When we went to Quidenham this afternoon there was this kid wandering around. He was about fourteen or fifteen and he was obviously very mentally ill in some way. He was stomping around, shouting and making strange noises and laughing occasionally at nothing in particular. He was there, in the room, surrounded by people - but he was really inside his own head. The nurses were, as they should be, quite matter of fact about him, letting him get on with it. They obviously treat him extremely well and do everything they can for him. I can imagine that if I were to ask more about him the story would be how happy he is - and all that shit.

But seeing him killed me. I could barely keep from crying. Because all I saw in him was Maggie. It was a sharp kick of reality that reminded me that she will definitely be severely disabled. That she will definitely turn out to be one of those kids.

As much as I try, I can’t see anything to be happy about with that. I can’t see anything ‘normal’ about it.

And I left Shannon there, as a first-time mum, in an environment that, while lovely and accommodating, just shouts out that there’s something not right. That she’s there because it all went wrong. That she’s there because her beautiful little girl is not as she should be. I forget sometimes that Shannon is a first-time mum and how awful this all must be for her. I forget simply because there’s so much other shit to deal with.

I’m now the father of five kids. Here’s what I love about my kids: they are all lovely, well-behaved, good-hearted, bright and have never given me any trouble. They didn’t have tantrums, they didn’t get expelled from school, they weren’t fussy eaters, they didn’t have any special needs. They were – and still are – great kids. They made it easy, being a parent. They made it so that when I heard other parents moaning on about their kids not doing this or doing that, I felt pleased and a little smug. I could never understand when I heard parents banging on about how hard it is being a parent.

What I expected, twins notwithstanding, is that being a parent would continue to be easy. That it would be something I would be totally relaxed about. I always knew that Shannon would be a fabulous mother. So I was pretty confident that it was going to be a breeze. That we would be really happy doing it.

And it’s the exact opposite. That’s a real shame. Because I could have guaranteed that Maggie and Alice would, just like their older brothers and sister, turn out to be lovely, happy kids that are a credit to their parents as well.

Video below, from the other day:

Message to Maggie

2010-02-28T23:39:00.000Z

The constant crying: it's driving us mad.

Maggie's homecoming

2010-02-23T23:30:00.004Z

Maggie's coming home tomorrow (Wednesday), for good - one day ahead of schedule only really it's well over 100 days behind. And, to be honest, because she's been home more often than in the hospital for the past three weeks it all feels a bit anti-climactic. Not at all like the nerve-wracking, overwhelming day when we brought Alice home - because she'd never been home before and Maggie has, loads. So now, as if there wasn't enough to make me feel sad about Maggie, I feel sad for her about this too. That her official 'home' day is pretty much just like any other of the past month.

Maybe I won't tell her - I could always get Paul to photoshop in some banners and balloons and rewrite this little chapter of her little history.

I feel a bit sad for us too, that after four and a half months this isn't a bigger deal, a more dramatic moment. At the discharge meeting on Monday our consultant kept saying what a big step this was - which pretty much shows how out of the picture he is because he wasn't aware at all of the amount of time we were spending with Maggie at home. We've been doing the big step for weeks.

Then again, four and a half months ago this day was never going to happen, and it has. That is a big deal - and a big triumph for our little Maggie. Well done, lovely girl - and welcome home!

At Home With Maggie

2010-02-19T17:33:00.011Z

She's hardly ever happy, Maggie. Or, rather, she is only when she's being played with - when she's being made to be happy. Apart from that, she never stops howling.

We're hoping that it's something she grows out of. That she's just hypersensitive to things like wind or being unable to get to sleep. That is, we're hoping that she's just a bit of a moaner. A lot of a moaner.

We should call her Malice. Malice and Alice.

On the plus side, we can see that since being home she's that little bit more alert and lively. And we've had a few moments of triumph: such as her tolerating - though not necessarily liking - water on her lips. She's also been taking in and swallowing spoonfuls of Infacol, which is quite treacly and tasty. Also, she can obviously see, although perhaps not too well. She fixes and follows, but it's erratic and tends to be only with certain objects.

She also looks much better. She doesn't look so much like an obviously sickly baby.

On the down side, we can tell that her limbs are stiffening. So we need to step up the physiotherapy. Which may, of course, achieve nothing. But you never know. She hates being in the pushchair and the car seat which, as you can imagine, is a real pisser. When other babies get themselves into a state, a quick trip out can be just the thing to soothe them. She does, however, like the sling - because she likes the closeness. A solution to the pushchair problem may be to swaddle her so she feels enveloped.

I think it's time that we, tentatively, start to treat her a little more like a normal baby. Her cot will be here next week so she can start going to bed properly. And maybe start being ignored a little more. For her sake and for our sanity. And, you know, to help get her in to a routine. It worked a treat with Alice - bed around 8pm, up at 8am.

By the way: Hurrah for Alice. Who is, I would contend, the best baby in the world: bright, loving, happy, quiet and very, very sweet. She reminds me very much of Louie, who was also the best baby in the world.

So it's very hard at the moment. We take it in turns to stay downstairs with Maggie so that one of us can get some sleep. No point us both being awake all night. It's been moderately successful. She has melatonin to help her get off to sleep because it's often the case that she's most upset between around 10pm and 1am. From there she gets from around three to four hours sleep. Which would be tolerable if we didn't have to wake to feed her a couple of hours later - and then stay awake for an hour while she's fed. All the while hoping that she doesn't wake or isn't sick.

She needs to put weight on so they're going to consider upping her feed. Hopefully during the day. So that we can get to a stage where she doesn't have to be fed so often during the night. That'd be nice.

I wrote the above a few hours ago. It turned out that she was a little better this evening, a little more settled and responsive to us trying to soothe her. So much so that we managed to watch two and a half episodes of Curb Your Enthusiasm while she was awake.

But then there was two hours of trying to get her to sleep. She's still awake now. I don't know how she does it.

I'm quite busy with work at the moment so the bulk of the care is down to Shannon. She is, I have to say, doing a fantastic job. I don't tell her that often enough. Partly because it seems faintly patronising and trite when I do say it. It's extremely hard for her and I sometimes forget that this is her first time as a mum. And it wasn't supposed to be like this. Really, if you were watching her in a film you'd be crying your eyes out.

But she is doing a wonderful job with both of the girls. They're in the very best hands. As am I.

Nights and Nightmares

2010-02-14T12:41:00.011Z

Yesterday (Saturday) was a good indication, I think, of what it's going to be like having Maggie home: very, very difficult.

All day long, and all through the night, she was, when awake, in distress. Constantly crying and howling and often looking as though she was battling with herself. Or, rather, with her limbs. It's really heartbreaking to watch, not knowing why she's looking so sad and terrified as she stiffens her body, windmills her arms and clutches at the air.

What we need to determine is whether her distress is due to reflux, wind, tiredness, cerebral irritations or something else related to her condition. Or whether this is just what her condition is. I know I keep saying it but... I'm annoyed about the fact that we seem to be in the hands of people who, despite their medical qualifications, do little more than make guesses. Guesses, I might add, that are somewhat less informed than our own.

If it's reflux, fix it. If it's wind, fix it. If it's her eyes, let's get them properly examined. If it's something going in her brain, let's monitor it and attempt to work out whether there are things we can do to calm her. I've noticed, for instance, that she really hates being lifted up and down in a playful manner (something that all my other kids, including Alice, loved). Why? Is it because her head's spinning? Does she have a headache? Is she hypersensitive to certain movements? Is it something to do with her eyes?

One of the main problems with everyone we deal with is that they're reactive rather than (dread word) proactive. As time goes on, and as we have more dealings with them, we're realising that we're going to have to keep making a fuss - loudly - to get things done. There's no point waiting for them to do anything on Maggie's behalf.

Oh, and I realise that I'm often complaining about these people. But so what? Maggie's going to need a lot of care so it's vital that we nail now how it should be and on what terms. I don't care if we upset people or if they don't like us. That's not the point. The point is acting upon the realisation that, in the world of child disability, it's he who shouts the loudest who gets things done. I don't want to be in a position years from now feeling guilty about the fact that we didn't do more or that we sat back and just hoped for the best.

And let's not forget that we're very angry. Angry that they don't do enough now. And angry that those fuckers are probably responsible for Maggie's condition in the first place. Something that we haven't really gone in to detail about on this blog because a) it's extremely painful to think about and b) it's something we need to get on top of properly before we seriously push our legal case.

So if you think I'm hard on nurses and midwives now, ask me about what happened on the day the girls were born. Irresponsible, incompetent, lazy, complacent, useless cunts.

Anyway.

There are many problems with Maggie being constantly distressed: it's really unpleasant for her, it's really unpleasant for us, she's never in the mood for essential physio or speech and language therapy, she's constantly tired, we're constantly tired, and her sister - who is an absolute angel - gets starved of attention. Poor Alice.

The twins thing, as we always knew, was going to be difficult. But with Maggie like this, it could be nigh on impossible. Yesterday was a portent of that.

Home Sweet Home

2010-02-11T00:36:00.001Z

It's happened before, but obviously not enough. For why else would it seem so significant that when I gazed at a sleeping Maggie at 4am this morning I thought, "Aw, lovely, lovely baby" instead of "Poor little girl"?

She's home nights. It's hard work. But it's fantastic she's here. And although it's still early days, it seems to have done her - and us - the world of good.

But by God, it's tiring. I tell you, I'm too old for this.

Maggie's Nighttime Adventures

2010-02-06T16:47:00.014Z

It was Maggie's first night at home on Friday night. I'd love to be able to say that it went well. But it didn't go well.

We knew there'd be problems when we picked her up from the hospital at 2pm and were told that she'd been asleep since around 8am. It's another one of those things that we thought was well understood: that she needs, as far as possible, to be kept awake during the day. So that she can get back to a proper nighttime sleeping routine.

The problem with her being home was that she didn't sleep. More than that: she was very distressed, constantly crying. She was up from around 2am and finally got to sleep at 8am. Shannon did the first half, with me on from 5.30am. And in between that, there was Alice's feeds.

Maggie was permanently upset. Crying all the time. In obvious pain, for whatever reason.

We took the girls out for a proper walk yesterday afternoon, for the first time ever. To have a stroll through the lovely cemetery that backs on to us and to visit their brother at work at his garage. Both of them together in their nice double pushchair. Maggie screamed and cried the whole time. It wasn't very nice.

The thing is, we always we knew it'd be hard with twins. The suspicion, however - based on the fact that Alice is such a good baby - is that, really, it would have been okay. Maybe. As it is, it's a bit of a fucking nightmare.

Before they were born we'd planned to have the girls sleeping together in a nice cot bed. I don't think this is going to work now. We tried them together, with Alice at the bottom and Maggie in her own little sleeping bag thing. But she got so upset that there was the danger that she would also wake her sister up.

I think the following should happen: Alice goes into her own room while Maggie stays with us in our room. Okay, it's not the way we wanted it to be but we have to get practical about this. And get organised.

Because Maggie doesn't feed orally, it's so much harder. She's fed on a strict four hour rota. Each one involves pissing about with tubes, syringes, Gaviscon and the pump (that bleeps very loudly - just the thing to wake Alice up). We can't sleep while she feeds because she often vomits. Each feed takes an hour. So once it's finished, it's not too long before we're having to get the next feed organised. In the middle of the night, in the dark, it's even more difficult. In between all that, of course, we also have to feed, and be mindful of, Alice.

Yes, you'd be right in thinking that it sounds like a right pain in the arse.

Yesterday Shannon spent the night at the hospital with Maggie. The same thing happened - she was up all night, distressed. A consultant who Shannon had never seen before suggested that what was going on was 'cerebral irritations' - rather than reflux. But he, of course, is just another voice in a very long list of voices.

Me, I'm getting sick and tired of all the vagaries. I think it's about time we stopped pissing about at the hospital - relying on the hospital - and took charge of a few things ourselves. It's now the case (though, in truth, it's been the case for a while), that Maggie being at the hospital is detrimental to her progress and well-being. She needs to be home, whether it'll be a nightmare or not.

Too many times we have conversations with consultants, doctors and nurses that go like this:

Us: Do you think Maggie's distress is caused by reflux?
Them: Hmm, yes, that could be the reason.
Us: Or do you think it's cerebral irritations?
Them: Hmm, yes, that could be the reason.

We'd be just as well asking the fucking cleaner.

Now, it may be the case that it's impossible to tell what's going on when Maggie gets upset. But if it's impossible for doctors and consultants to tell, it may as well be impossible for us to tell. That is, we should now be taking charge of Maggie's care and making our own 'diagnoses'. The big advantage of that, of course, is that we actually spend time with Maggie rather than observing her for a few minutes here and there a couple of times a week. We're far better informed about her condition than they are.

To be honest, the seeming lack of expertise at the hospital really pisses me off. It just seems that they're all in the general field of "ill baby" care. There doesn't appear to be anyone who specialises in the kinds of problems that Maggie has. I know her condition is rare but I don't think it's so rare that no-one specialises in it. I think we need to be getting out there and talking to other people. Other parents, for instance. Or the people at Scope. Or social workers. (Thanks, Helen, for your advice on this.)

You know, it'd be really nice, just once, to hear someone say something along these lines:

"This is what's wrong with Maggie. This is how we're going to try to fix it."

The plan today was that we'd take her back to the hospital tonight and one of us spend the night with her. But we decided, instead, to keep her home. I'm going to stay with her all night in the living room - me on a mattress, Maggie in her carrycot - while Shannon and Alice stay in our room. And we'll swap tomorrow night. We'll keep doing this until we get more on top of getting a decent sleeping pattern for her. It may not happen, of course. But we have to try.

As far as I'm concerned she may as well come home now. There's no advantage to her being at the hospital. Yes, it's going to be really fucking hard. But at least it'll be really fucking hard in the comfort of our own home. And without a load of ineffectual - though sometimes well-meaning - twats getting in the way.

Welcome home Maggie!

Mary's Visit, Photos and Maggie Home (For A Bit)

2010-01-31T22:43:00.004Z

Given that Shannon is her sister, it’s probably more appropriate that she write about the time she spent with Mary this week. For my part, I just want to say how nice it was to have her here and what a help she was. It was great having her around, she was great with the girls and she really lifted Shannon’s spirits. Well worth the three week trip to get here I’d say.

It’s just a shame that while she was here I was both ill and a little bit stressed with my stupid work stuff. So I wasn’t on top form. In fact, it’s entirely possible that I was occasionally a bit of a knob. Ah well. I’ve got a disabled daughter – I can behave how I like.

The big news last week, of course, was that Maggie had her gastrostomy operation on Wednesday morning. We were there at 8am, cheering her on as she was wheeled down to the theatre. Although we were told that it would take an hour, or an hour and a half, it took nearly two and a half hours. Not too long to cause us to panic completely, but enough for us to become a little worried.

As it turned out, the operation was a success – although success seems like the wrong word. Particularly because the tube, peg and valve she has poking out of her stomach seem positively Frankensteinian. In fact, it was very upsetting when we saw it for the first time. We had to constantly remind ourselves that this act of butchery was for the greater good. Let’s hope so.

Since she’s had the operation she’s been more distressed. Up until Wednesday she was just about getting on top of going through the night without too much trouble. Now she’s all over the place. Possible causes of her distress are the valve thing itself irritating her, the after-effects of the anaesthesia, more reflux (a possible side effect of a gastrostomy) and general pain. She’s also having problems keeping her food down and vomits with almost every feed - so it’s likely that they’ll look at quantities and timings tomorrow. On top of all that, of course, is her overall condition.

Oh, and the fact that her bum, for some reason, is now red raw. In my experience there’s usually one reason for that: the nappy isn’t changed often enough.

Actually, one of the small bonuses of Mary being here is that she saw first hand how casually-minded some of the nurses can be about Maggie’s care. (Not to cast aspersions on nurses or anything. In fact, I wouldn’t fucking dream of it.)

Maggie had her third home visit today. This would have been better, I’m sure, had she not been afflicted by any/all of the above. But she was and so she was occasionally quite distressed. However, she was also occasionally in good spirits. During those times it was great to get a better feel for her and for us to be more relaxed about the way we handle her.

For me, being at home makes a massive difference. I don’t like the hospital – duh – but I especially don’t like the restrictions it places on my interactions with Maggie. Maybe it’s just me, but it always brings out a degree of self-consciousness.

So today Maggie responded very well, as usual, to vigorous horseplay. She liked having her feet bitten, as well as the palms of her hands. This alongside the rough and tumble of having her arms and legs pulled this way and that way. Personally I think it might be a good idea to incorporate mouth stuff in this general play so that it becomes, for her, another area of fun.

We also dabbed water on to her lips in order to encourage her sucking and to get her lipsmackinthirstquenchinacetastinmotivating.... It was moderately successful. I think we could be a little more daring in this area, perhaps introducing a number of different tastes and textures. The worry is that she’ll choke, although it does seem unlikely.

But hey, what do I know?

All in all, I’d say she had a generally good day today. When she was in good spirits, that is. And when she wasn’t vomiting.

Below are some pictures of the past week. There’s Mary, Shannon’s sister; our friends Tara and Louise who visited us at the hospital yesterday; and Alice’s most favourite person in the world: Samuel Beckett. She stares and stares at that picture of him and often chuckles away at whatever conversation it is that they’re having. Good old Sam, always good for a laugh.

Talking of dead great writers – or, rather, great dead writers – it was sad to hear of JD Salinger’s passing this week. His short story, For Esmé, With Love and Squalor, is one of the best things I’ve ever read. If you haven’t read it, I’d highly recommend that you do.

Click the pic to see the pics:

Maggie Home (Briefly)

2010-01-24T21:44:00.014Z

I was going to write a very long post about Maggie coming home yesterday. I was also going to write about the visits we've had from Mary (Shannon's sister) and Daniel (Swedish Daniel, as we call him, because he's from Sweden). But I'm not very well today. A combination of shitting and puking topped off with what may well turn out to be the flu.

But I'll go and see my doctor tomorrow. Because if you're at death's door, he's just the man to help pull you through.

Courtesy of Eric Morecambe, that one.

So we've had a busy weekend. Daniel arrived on Friday, left on Sunday afternoon and spent most of his time in the same spot on the settee. We did feel a bit bad about that - that we weren't more entertaining - but the sheer pleasure of our company more than made up for it, I'm sure. Mary arrived on Saturday afternoon, all the way from Texas, and she's been great - particularly today when my self-pitying whining prevented me from being too involved with the day's activities.

So yes, it's been great having them here. As well as being a help, it's just good to have nice people around the house. At the same time, it's a bit of a sad reminder that we're not a little closer to our families. It's funny, but it's an assumption that almost everyone to do with Maggie's care has made: "Oh, but you'll have family to help you out won't you?" Er, no - because we didn't plan on having a disabled child you see. We thought it'd be okay, just me and Shannon.

Best laid plans and all that.

Maggie's first visit home was, we believe, something of a success. She was a little tired and a little grumpy but, when awake (and not upset), seemed very alert and very happy to be here. We fed her here, with the pump, and that went well too. The whole visit was as good as we could have expected. The most important thing about it, of course, is that it made us feel a little more confident about getting her home permanently.

It was wonderful having her home. And it was particularly good to see her reacting to her new surroundings. As I've mentioned before, she responds really well to music and it was good to be able to whack it up a bit and have a proper dance.

There are, below, pictures and a short film from the day. Again, the quality of the film has been downgraded from the original. But it still gets across quite well how Maggie was yesterday.

And no, that isn't a trick of perspective - she really does have giant-sized hands.

I have to say though that this film (and the last film) paints a pretty positive picture of Maggie. She looks happy, alert and responsive. But that's not how she is all the time. Far from it. But the thing is, I'm not going to be filming her when she's distressed and I certainly wouldn't upload that type of thing here.

I mention this because although I'd like everyone to see how great she can be, I don't want to paint a completely false picture.

Talking of pictures, you'll see that we still have our Christmas tree up. I'd like to be able to say that that's because we've been so busy with all that's gone on that we just haven't had the time to take it down. But the truth is, we do this every year. It's nice to have it in the room, the glow of the lights providing a little cheer through the darker months. Last year - or the year before - we didn't take it down until the end of March.

Season's Greetings to you all!

Visits

2010-01-22T00:27:00.005Z

I'm really, really looking forward to my sister, Mary, coming over - just a few days away now and hopefully Maggie will be home for the afternoon to welcome her. It'd be nice for her first time with the girls, her new nieces to add to our lovely niece Gretchie (and nephew Sammy!), to be outside of the confines of the hospital. Our old host brother, 'Swedish Daniel', is coming over for the weekend too - another pair of hands to put to good use in the caring of our girls.

These visits couldn't come at a better time, especially after the sobering visit from our community health nurse this morning. She's nice, very sympathetic, championing our corner and getting things under way...but the reality of the gastrostomy is slowly becoming just that. I was looking at Maggie's perfect little baby tummy last night, getting sad and upset about what's going to happen to it - what has to happen to it to take care of something as simple, natural and important as eating. Sometimes I find it hard to take it all in, to really believe that this is going to be my life, and my life as a mother. I was rather late in coming to it but I always knew I wanted to be a mother, and I was pretty sure I'd be a really good one. I hope I still will be in the end, but it's not the kind I wanted to be, not the kind I imagined - and the sheer, complete, helpless unfairness of it all has really been getting to me this week. Getting to me...the truth is it makes me want to scream, cry my eyes out and just give up.

Luckily, the feeling usually passes quite quickly - when I see Alice, when I can comfort Maggie, when I get a hug from Paul. But talking today about all of the things we'll need - boxes and boxes to be delivered every month with the disposable tubes (6 a day, every day) and accessories, food, medication - and the struggle we'll face when it comes to finding quality childcare for Maggie, and returning to the hospital to replace the button, and trying to juggle physiotherapy, speech and language therapy, the respite and care services of the local children's hospice, the home respite services through the hospital, the health visitor, specialist health visitor and community health nurses while still doing all the normal things with Alice and trying not to notice that the health care professionals keep talking about Maggie's gastrostomy in terms of years rather than months...well, I've had a right pity party day.

So, the arrival of family and friends is just what I need to pick me up, re-energise me and get me focused on my lovely little girls instead of myself!

Maggie

2010-01-21T15:11:00.002Z

I've always been a bit sentimental, especially when it comes to music. And because I was in the mood for listening to something sad and sweet this afternoon, I made it worse by remembering this old Foster and Allen song from a record my mam and dad had when I was a kid.

Homeward Bound

2010-01-19T14:05:00.011Z

We were told yesterday that Maggie's gastrostomy operation will take place next Wednesday morning. Which is both good and bad: good that they're getting on with it, bad that they're getting on with it.

I was only thinking this morning that it would have been difficult with twins anyway. I think we've forgotten that. Then again, Alice is a dream. Maybe Maggie would have been a dream too. Maybe it would have all been really easy and lovely and manageable. Maybe we would have been really happy.

The worst part of all this is thinking about what might have been. I think I've said that before. I still - we still - have those moments where we look at Alice and become overwhelmed by the sadness of Maggie not being there with her.

Of course, it's not just a case of getting her home and having her literally being with her sister. Whatever it's like, it just won't be the way it should have been.

I think there's a tendency for us to think about how bad and sad this is for us. Which is fine. You can't blame us for that. But I think we occasionally forget how bad this will be for Maggie. We don't know yet exactly what her disabilities will be, except that they'll be serious. Who'd want to go through life like that? I wouldn't. Poor Maggie.

And what was it about Gok Wan's programme about disabled women this evening that annoyed me? I didn't watch it. I couldn't face it. Maybe I suspected that it would be full of platitudinous crap about how even though they're disabled they're just like 'normal' women with the same ridiculous hang ups about beauty and self-image and blah, blah.

I think it's because I'm still resistant to the idea that there could be anything 'normal' or 'positive' about being disabled.

But we'll see.

We're currently still trying to re-set Maggie's body clock. I say we but I really mean Shannon. She's up at the hospital now, no doubt trying to keep her awake and keep her calm while she is awake so she sleeps through the night. Or at least through a good portion of the night.

The idea is that she'll be a bit easier to manage when she does come home. To be honest, because I'm the way that I am (not thinking about anything until it actually happens) I've been a fair bit less involved in this. It's going to be tough, we know it's going to be tough, so let's just deal with it at the time. Which is probably a daft way of approaching it. I don't know.

So she'll be coming home properly soon with her button gastrostomy and feeding pump and tubes and medicines and Gaviscon and all sorts of crap. In the meantime, they reckon we can get her home on day release type visits. Presumably to get her acclimatised to her new environment (and to how fucking cold this house is).

Below, the girls together - for the first time ever - in the double buggy today. We went as far as the hospital canteen. Which is the furthest Maggie has ever been.

Friday Film Day

2010-01-15T22:09:00.012Z

I decided to have a bit of time away from work today so accompanied Shannon and Alice, first of all, to McDonalds for breakfast. The Double Sausage/Egg McMuffin thing is about the only thing of theirs I like. And then into the city where it was far colder and more miserable than we thought it would be: post-Christmas bleurgh and a general air of lethargy. It was like the footage of the high street you see on the teatime news when they’re banging on about the recession.

But we bought socks, blank CDs, a bargain priced Laurel and Hardy encyclopaedia, various baby requisite-t-t-t-s and a selection of the day’s finest newspapers and mags: The Sun, The Telegraph and The Spectator (because I’m getting more right-wing as I get older). Plus a couple of copies of the local newspaper, the EDP, because my article about Twitter and LinkedIn was in the Business section.

My second article no less. With my picture and everything.

Then up to the hospital to see little Maggie.

She was in really good spirits all day. She was awake on and off but during those times she was bright, alert and very happy. We’ve recently been taking her into the kids’ playroom and blasting music at her while dancing around. The standard stuff you’d do with any baby, for sure; but for Maggie this is new. It’s a real change from the somewhat stultifying atmosphere of the ward where they’re obsessed with dimming the lights and creating an artificial dusk any time after 2pm. So in the kids’ playroom it’s all bouncy and loud and bright. The only drawback is that the CD/radio player seems to be permanently set to Radio Norwich. This afternoon we had to put up with old shit like M People’s Search For The Hero.

If you haven’t heard Radio Norwich, it’s here. And yes, it really is the world of Alan Partridge brought to life.

But anyway, Maggie loves the music and it’s obvious that this will play a big part in her ongoing stimulation. But not M People. Something else beginning with M. Er... Max Romeo. Babies love a bit of reggae.

Tom turned up later in the afternoon, still nursing a killer hangover, but alive enough to be able to keep an eye on Alice while we went with the ophthalmologist to have Maggie’s eyes checked.

As far as he can tell, her eyes are physically fine. However, the nerve leading from her eyes to her brain is somewhat pale. This could be a problem. He’s seen it before in babies who are premature and it often turns out okay. But of course Maggie isn’t just premature – she has a whole host of other, far more serious, issues to contend with. So it’s possible she’s got problems with her eyes. Or it’s possible she may not. As usual, it’s a matter of waiting. As the ophthalmologist said, we are by far the best people to recognise if Maggie’s having problems with her vision. Sadly, we’d already noticed that she wasn’t really focusing and following, which is why we asked for the tests in the first place. But still, it could all just be a matter of time.

Or it could just be related to the fact that there's always a degree of retardation when it comes to any baby that spends a significant amount of time in the hospital.

Talking of which. There's a baby in the same ward as Maggie who was visited by quite a few people today: family and medical types. I lost count of the times the parents brought up the fact that their boy has been in the hospital for six weeks and that this six weeks has been like a lifetime for them. A lifetime? I wanted to shout, you should try three fucking months you amateurs!

Well, you know how competitive parents can be when it comes to their kids.

It was, on the whole, a good day today, as you’ll see from the film below. Before you watch it though I have to point out that Maggie can move on her own. She was just having a bit of a pullabout session at the time.

Oh, and for some reason the quality of the film is much lower when posted on this blog than it really is. So I'll try and put it somewhere else a bit later.

Shannon’s staying with Maggie at the hospital tonight. Let’s hope they have a good one.

Click the pic to see the pics. Click the film to see the film.

And yes, I know that, strictly speaking, Max Romeo would be filed under 'R' not 'M'.

The Big Meeting

2010-01-13T18:07:00.009Z

We had our big meeting at the hospital today. It was a bit like this:

As you may know, we’d been nervously looking forward to this meeting for a while. It was our chance to get everyone together and, as people sometimes still say, get them on the same page.

Singing from the same hymn sheet. Drinking from the same glass. Pissing into the same trough.

As it happened, this happened: we decided that they should go ahead and give Maggie a gastrostomy. There were some grumblings about this, from the lead surgeon and the consultant pediatric dietician, but as they were both relative latecomers to Maggie’s condition they didn’t have the whole picture. So the meeting largely consisted of a lot of back and forthing and weighing up the pros and cons.

The frustrating thing about the meeting was that no-one seemed prepared to lead it. Or to make a firm decision. Perhaps because they were all there representing their own fields of expertise – physiotherapy, speech and language therapy, dietician, health visitor, surgeon etc.

The gastrostomy could make things easier. It might not help with her reflux but it could well help with her sucking and swallowing. It’s possible – and likely – that having a tube shoved down her throat and strapped to the side of her face has contributed to a general pattern of oral aversion. Once freed from this intrusive paraphernalia she may well begin to feel more positively about anything to do with her mouth, throat and face.

The problem with the surgeon and the dietician was that they tended to want to grapple everything from a solely medical viewpoint. So this meant that they had to be made aware of – and become sympathetic to – issues outside of pure medical treatment. So, for instance, accepting that for Shannon and I it’s simply not very nice to see Maggie with a tube strapped to her face all the time. It doesn’t look nice, it doesn’t feel nice. And as much as I’d love to be able to say that it wouldn’t bother me what other people would think when they see Maggie, it would. Really, I don’t want her, and us, to be objects of curiosity when we’re out and about. Especially not now, when she’s so young – because now is probably the only time that she’ll look relatively normal. We’ve got a lifetime ahead of us to be gawped at by idiots.

The other main issue discussed was Maggie’s reflux. There was, some time ago, talk of her having an operation to tighten up her lower valve thingy. When it was first mentioned it seemed that the operation was very simple and straightforward – that while they were in there sorting out her gastrostomy they could just tighten up her valve. Apparently, it’s not that simple. Not at all. And there are a number of side effects – not the least of which would be the inability to burp and vomit.

So the problem here, again, was weighing up the pros and cons. In the end it was decided not to go for this treatment and see if we can continue treating it medically. Or see if it subsides as she gets older. But while they are in there, sorting out her gastrostomy, they’ll have a look to see if there are any obvious reasons why her reflux is so bad.

The other issue raised during this meeting was the ongoing problems with consistency of care. The basic stuff. Such as not lying Maggie on her back or remembering to do her speech and language therapy. What we got here was mild defensiveness and excuses but an overall commitment to get things sorted. Which is important because, despite the fact that she’s having the gastrostomy, she’ll be in the hospital for at least another couple of months.

But on that note there were also noises made about us taking her home every now and then. To get us, and her, used to it. And to hopefully help get her body clock re-set so that she can sleep nights. Before we do get her home, however, they’re going to look at her feeds to see if she can go four hours. Again, it’s about getting the balance right: bigger feeds in the past have often led to more reflux and vomiting.

The worst thing about today was being reminded of how bad Maggie’s condition is. We should be under no illusions really. But occasionally we forget/hope. At one point the physiotherapist was talking about the stiffness in her arms and the lack of tone elsewhere. It was very strange – and very, very upsetting - because it just made it all so real: our daughter is very seriously disabled.

Shannon’s at the hospital with Maggie at the moment. But I’ll get her to write more – and more about the meeting – soon.

On another, related, note: Alice was babysat for the first time today. By our friend Emma, who did a sterling job of looking after her for a couple of hours while we were at the meeting. She was a good girl too. Alice, that is. So yes, if you’re reading this and wondering whether you should offer to join our babysitters' roster – please do.

Click the pics to see new pics. There’s a lovely one there of Alice auditioning for the part of the dwarf in the remake of Don’t Look Now.

2010-01-10T17:45:00.001Z

Two lovely pictures of two lovely girls:

Chewing The Fat

2010-01-07T23:06:00.008Z

Some people, when dealing with tragedy, lose loads of weight. This hasn't happened to me. The opposite has happened to me. My already large appetite simply grew larger.

I reckon it's an evolutionary thing. When threatened with a crisis, my job is to eat more in order to keep the species going (that, and having loads of kids). So whether it's global warming, nuclear destruction or a zombie attack, you can all count on me to ensure that us humans are here to stay.

And you can also count on Alice. Because she's an eater too. As you can see.

There's been plenty going on here recently. Which is why we haven't updated in a while. Not just because we haven't had the time but also because there's quite a lot to say. And even that will have to wait for another post because... well, Shannon knows the ins and outs of it more than I do. But Shannon's in bed now, getting some well-deserved rest.

In a nutshell it's this: we're having a big planning meeting next Wednesday at the hospital. This will include consultants, surgeons, doctors, speech therapists, nurses and anyone else who'll be involved in Maggie's future care. We - they - need to get on top of everything and stop pissing about. One of the key things is to decide whether Maggie's going to have a gastrostomy. Or whether she'll continue being tube fed. And whether they'll tighten up her Lower Esophageal Sphincter valve. Or whether they'll decide her reflux can be eased with Gaviscon. Y'know, little things like that.

And this, hopefully - at the least - will result in her getting home soon. Because she really needs to be at home.

In other news, Alice is thriving, piling on the pounds and enjoying the snow. She's also in the early stages of laughing and gurgling (so by the time you get here Mary she should be in hysterics). She is, as they used to say, a real smasher.

But of course, Alice's smashingness is rather bittersweet. We were sitting with her on the sofa this evening, making her laugh and just enjoying being parents, when it hit us that we should have another little girl there, doing the same thing.

It's been three months now and it still gets us. The trick, we've discovered, is to simply bottle it all up and pretend that everything's okay. How else will we manage?

Click the pic to see the latest pics:

New Year Bits

2010-01-03T22:38:00.006Z

Louie and Isaac came to stay for a few days over the new year period. This meant that we were able to have another, more normal, Christmas with presents, dinner and family. It was lovely. And it was lovely having them here.

My intention was to get a load of family photographs with all of us together. But I hadn't really thought it through. Because it so happened that during the times of our visits Maggie was quite distressed. It just didn't seem right.

Both Louie and Isaac took to Alice instantly. And she to them. One of the nicest things was that she seemed to recognise that Isaac is a kid. She was fascinated with him.

But he was initially a little upset at seeing Maggie. I don't think he expected her to look so ill, what with the tube and everything. Not to mention the business of her being in hospital. It must have all seemed a little odd and a bit frightening. To be honest, I could have done a better job of preparing him for it.

But he became much more chirpy later on and it was really sweet to see the concern he had for his sister.

Out With The Old

2010-01-01T00:25:00.005Z

One of the advantages of having kids is that you don't have to force yourself into having a fun-packed night out on New Year's Eve. You can stay in without worrying about whether you're just an old stick in the mud.

So we stayed in tonight with Louie and Isaac, drinking and eating. Tom was out somewhere smoking cigars.

I was going to say that I hope 2010 is a better year for us than 2009. But up until the problems we had in October, Shannon and I had a great year last year. And even with what happened to Maggie, it wasn't all bad after October. It just wasn't what we expected. Or wanted.

A Happy New Year to you all.

Alice The Goon

2009-12-27T22:49:00.006Z

I'd forgotten, until reading the latest collection of the original EC Segar Popeye strips from the 1930s, that there was a character called Alice the Goon. She started out as quite a hideous and frightening zombie-like figure - a henchwoman for the evil Sea Hag - but later became quite loveable and motherly.

So that's what we call Alice now: Alice The Goon.

We don't really.

And did you know, fact fans, that Spike Milligan named The Goons after Alice The Goon?

Anyway, below is a picture of Alice I took this evening. I didn't mean to pose her next to the Popeye book - it was just there. But look at the fantastic cultural paraphernalia she's surrounded herself with: Eric Carle's The Very Hungry Caterpillar, Popeye, The Amazing Spider-Man and The Guardian Guide.

Oh, and she adores that caterpillar.

Boxing Day

2009-12-26T23:11:00.009Z

The holiday day after Christmas and as you can see in the pics, the girls are still in a festive mood, thanks to the matching outfits from their Uncle Jim and Aunt Kirsten and cousins Gretchie and Sammy.

When we got to the hospital today it was obvious the peace and quiet of yesterday was the exception rather than the rule - three more little children on Maggie's bay and it was sad and upsetting to hear their crying, see their distress. When we were on NICU the majority of the little babies were actually fine, just too small and needing to catch up with their due date before going home -their tears were easily stopped with food or changing their nappies, job done. They had no idea where they were, or that they shouldn't be there. I keep walking around the ward with Maggie to stimulate her with the bright lights and new environment and at times it's heartbreaking to see glimpses of the other children - a mother helping a girl of eight or so out of her wheelchair and into her bed, a teenage girl lying in her bed alone after her family left on Christmas, a baby boy that we met in NICU who has a twin at home too. It's just not right, children being ill.

Of course, the wanker consultant guy who had us booted out of NICU also had to point out that given Maggie's condition we would often be in the hospital so it would be good to meet the nurses on the children's ward and get to know them. Cheers.

But, you know, I think it's been good for Maggie, the move. And the change of reflux treatment too, it's made a world of difference and is something I owe the wanker consultant for suggesting - the nurses on the children's ward keep telling me about her little vomits during her feeds, that she arched her back a few times and I point out that not even a week ago she was crying through each one, arching her back the entire time, gripping her little blanket in pain. And now, by and large, it's fine, she even sleeps through some of them.

And apart from the first night, she hasn't had sedation since she got there - cuddles rather than drugs and it seems to be doing the trick. She still has unsettled periods at night and is sleeping too much during the day so her body clock is all out of whack but the plan is to work on it, not just to let her continue as she is.

Alice is still just smashing - always bright-eyed, smiling, cooing, mesmerised by nearly everything and so alert. She's a real daddy's girl too - she's constantly watching Paul and what he's up to. And last night she slept from 10pm until 4am - result!

Our First Xmas

2009-12-25T21:25:00.008Z

Xmas Day at the hospital. Not as miserable as we thought it would be. Not great, just not wrist-slashingly depressing. And this was due, for the most part, to Maggie being alert and sweet and lovely. It made it all seem a little better.

One of the oddest things about spending the day at the hospital was that we were hungry by early afternoon. I mean, who gets hungry on Xmas Day? So I nipped downstairs to the canteen and got a small takeaway box of turkey, stuffing and roast potatoes. Not much - just enough to keep us going until our proper Xmas dinner later in the evening.

So we spent the day at the hospital with our girls, opening presents and trying to make the best of it. As you’ll see from the photographs, they had some nice things between them. The majority of them courtesy of Auntie Mary and Uncle Bob, all the way from Texas.

A big thank you, by the way, to those of you who got gifts and cards for the girls.

In the evening, we left Maggie for the rest of our Xmas Day at home. Of course, it was dark by then and tinged with the sadness of her not being there. But with all that, I was greatly looking forward to our Xmas dinner. Not just because I like a good roast but because having turkey with all the trimmings was our attempt to have at least a bit of Xmas Day that was normal.

So you can imagine how upset I was when we discovered that our crappy frozen turkey thing couldn’t be cooked from frozen – that it had to be defrosted for 24 hours. Honestly, I almost cried. Just another little thing that didn’t go right.

But salvation of sorts came in the form of a crappy frozen gammon roast thing. And Shannon did an excellent job of putting together a very nice alternative Xmas dinner. Which we ate around 9pm while watching Celebrity Mr & Mrs and necking Buck’s Fizz.

All in all, not a great Xmas. But it’ll be different next year.

See the Xmas Day gallery by clicking the pic (now fixed):

Not Even A Mouse

2009-12-25T00:48:00.005Z

We’ve not been looking forward to Xmas this year. But we decided to make the best of it. Which is why we went out yesterday to buy gifts, fetch a tree and get some food. And it was all going quite nicely until the hospital called (see below).

I keep having dreams about Maggie as an older girl. She’s always sort of okay, although with something not quite right. Last night she was a relatively normal teenager. And the underlining story was that she’d defied all expectations to become as she was. Good for her.

I felt very low this morning. Not just down in the dumps but also quite angry and helpless. Shannon had earlier told me that when she was in the process of re-locating Maggie out of NICU, the doctor who had ordered the move – who she’d only the day before poured her heart out to – walked into the room. And ignored her.

What a horrible cunt.

I think I’ve had enough of expecting things from other people. I think this is why I felt so low this morning: because it’s Xmas and we’ve had this terrible thing happen to us and, to be honest, I just wanted someone to come along and make it all better. Or to just look after us for a bit.

Pathetic, right? But then I always tend to get a bit maudlin this time of year.

When we first walked into the ward where Maggie is now, the sadness was overwhelming. Because there she was, all alone in a room full of empty beds. All alone at Xmas with no other children to keep her company. It was so sad that it made me think that it would make for a truly heartbreaking Xmas story for kids: about the little girl that Santa forgot. Something like that. I may write it one day. But I’ll make it funny.

Things picked up a lot when Maggie’s nurse introduced herself. She seemed to be very competent and friendly and, best of all, sympathetic to our needs. I liked that she sat with Shannon and wrote a plan for Maggie that included all the things that have to be done: the physiotherapy, the speech therapy, the feeding etc. We were then visited by the girl who’ll be doing Maggie’s play exercises with her. She was a bit soppy but very nice and obviously very keen to do what’s right for Maggie.

So by the middle of the afternoon I started to get a sense that perhaps things might start improving. And as a result of that I cheered up a bit.

Of course, it was sad to leave Maggie alone like that. But we’d decided that we deserved to have some kind of Xmas eve. Besides, we still had a tree to decorate and presents to wrap. And a quick drink with the lovely Ben and Julia who came with gifts for the girls.

The plan tomorrow is that we go to the hospital first thing to open presents as a family. Then back home to have our crappy Xmas dinner (we’ve gone frozen this year because we couldn’t be arsed). And then to the hospital again to see out the day with Maggie.

Maybe next year will be better.

Happy Xmas and best wishes to you all.

Click the picture of Alice to see today's pics:

Maggie's move

2009-12-24T01:08:00.012Z

Despite the assurances of three consultants over the past three weeks (including the head of the neonatal unit) that Maggie wouldn't be moved to the children's ward until a) our consultant, Dr Roy, returned in the new year and could hand her over to the pediatric consultant properly, b) we were ready and happy and it wouldn't be rushed at all and c) well, maybe not at all if her surgery was done in the near future and there would be no reason for such upheaval...we received a phone call yesterday at 12pm telling us that this week's consultant had decided that Maggie would be moved between 3-5pm that day.

The reason for such contradictory haste? A bed had come available in the children's ward (which often happens). And there's an expected (not definite) staff shortage over the Christmas holidays. And there's an expected (not definite) influx of intensive care babies (which would have an impact on Room 3 in perhaps a week or two's time). And Maggie's needs are moving beyond what the neonatal nurses can provide (needs which, given her current distress and agitation and sedation amount to feeding her, changing her and cuddling her).

I felt completely blindsided and really, really upset - three fucking days before Christmas, which is already going to be hard enough, and they have to do this to us? We had our sad little plan of going up on Christmas morning with Alice and all going into one of the rooms to have our first little family Christmas together on our own. Sofas, chairs, tea making facilities, even a telly - we could almost pretend it was home. And we could do the same when Isaac and Louie come down. On the children's ward? Huddle round her cotbed and try to find a spare chair to squeeze into your allocated little space because there are no additional rooms.

But beyond this was the sudden change - I know where I'm at in the neonatal unit. Seventy five days there and I'm pretty much autonomous when I go up there to look after Maggie. I know the nurses that look after her, a handful of whom look after her every time they're working and I have come to trust them and I trust their care of her. And now the idea was that I meet 50 more shift nurses, who don't specialise in babies but children up to the age of 16, who don't know Maggie and her likes and dislikes and quirks. I won't have the same easy access to (contradictory) consultants who pretty much come when you call. I won't have as much space and leeway when it comes to accommodating Alice. And I never imagined leaving in this way - booted out after 75 days not to go home happy but to go downstairs to another ward, scared and frustrated.

So we kicked off - first to the staff nurse who told us the news, then to the neonatal nurse manager and then to this week's consultant. A meeting was called right away and after an emotional, desperate, two-hour conversation - with us pointing out the contradictions in this consultant's handling of our care compared to his colleagues, challenging their reasons for the move and the need for it to be so sudden - they agreed that although their preference was to move Maggie that day, they would do everything they could to keep her on the neonatal over the holiday period.

I felt so much better to have that reprieve, to know that although it would no doubt happen and quickly when it did, at least we could go ahead with our Christmas plan and I could have a little more time to get used to the idea of the move and have some more time to meet the children's ward staff and learn their practices.

Then the neonatal unit rang today at 4pm to say that due to critical staff shortages (two nurses calling in sick for the next three day period) Maggie would have to be moved before the 7.30pm shift handover, nothing else could be done for it.

And so she's moved - fucking rollercoaster again. I went downstairs ahead of her to get her cot ready with all of her things so they'd be there for her but I couldn't face actually going with her out of the unit and down the corridors, seeing her wheeled about the hospital. I went for a cry and a cup of tea while they did their handover and went back to her new place and tried to settle in with her.

The saving grace of all this today has been Maggie herself - a change in her reflux treatment yesterday had made a real change in her today. Her physiotherapist noticed it, the staff nurse noticed it - both saying she was like another baby. A relaxed, alert one that barely cried during her feeds, seemed to enjoy the physiotherapy and had a really, really lovely day and start to the evening. It eased my upset a lot to see her so...well, normal. I left her just before 11pm and she was sound asleep after another successful, pretty much stress-free feed.

Only I've just rung now to see how she's been and the nurse told me in a rather off-hand manner that she'd been unsettled since midnight and had to have sedation, only it hadn't really worked that well and I could hear her crying in the background.

Can I mention the rollercoaster again?

Think Pink

2009-12-21T22:31:00.003Z

Alice, today, in her first dress. Knitted for her by our friend Maria:

Manning up and updates

2009-12-20T21:52:00.019Z

I'm sorry that I've gotten behind on the blog in the past few weeks - I was feeling overwhelmed by it all for awhile there. Each day starting and ending with a phone call where I learn that Maggie's been very distressed and needed sedation and in between are the emotional hours with her, laughing at her smiles when she's bicycle kicking, hoping a little crying doesn't turn into a lot, discussing tube feeding and surgery and physio and changing wards, feeling guilty at not spending enough fun, individual time with Alice, feeling guilty at leaving Maggie, staying up late with Alice, getting up early to be with Maggie... it all got a bit much and got on top of me.

But I'm manning up and getting back on top of it now - ready with an update on our girls.

Alice's health visitor is coming to see us tomorrow - a routine appointment we've missed a number of times due to being up at the hospital. I think it's mainly to see exactly how much weight she's put on - with Maggie now coming in at nine and a half pounds I'm thinking Alice will tip the scales at around eleven. Big girl! She also had her first jabs a few weeks ago - we both cried, me slightly longer than Alice - and we discovered that her 'sticky outy' is a bit too sticky outy and is actually a herniated belly button which she would have had from birth - nothing to worry about though and it'll probably resolve itself in time. Now that I know it's actually a thing it seems bigger and more worrying than before!

But she's blossoming, our Alice - smiling loads, cooing, getting chubby legs and arms to match her cheeks, sleeping right now in her big girl cot bed for the first time (so if this is all a bit disjointed, that's why - me popping upstairs to check on her!) and, so the nurses tell us, looking more and more like her dad, who she is completely smitten with. I'm trying to find a balance of doing 'normal' mum and baby things with her - a little trip into town before going to the hospital, etc.

Poor Maggie's been having a tough time of it - because of her distress she's needed a sedative every day for the past two or more weeks and sometimes it's stretched into her days as well as her nights. Her latest EEG revealed much of the same thing as before - that there is abnormal brain activity going on but no out-and-out seizures were noted during the time, even when she was crying during the monitoring. But it probably wouldn't pick up cerebral irritation, which they still believe she's suffering from. She's also suffering from reflux and following an X-ray at the end of last week, we now know that her reflux is coming all the way back up to her upper esophagus, which is quite bad.

The biggest issue right now is her feeding - as she's getting bigger, she's getting better at pulling out her tube. On average she's having it out 4 or 5 times a day, which means the nurses putting it back down 4 or 5 times and that upsets her, understandably, each time. It also makes it more difficult for us to take Maggie home, as each time she pulls the tube out we'd have to bring her back to hospital before the next feed to put it back in.

So the talk is about Maggie having a gastrostomy, where she would be fed directly into her stomach. Obviously our hope was that she would be feeding from a bottle by now but although she's slowly improving with her suck reflex, the speech and language therapist thinks that it would most likely be a matter of months before she could be feeding orally (if she can do it at all). And continuing with the tube feeding for that amount of time isn't really recommended.

It's really, really sad and scary to think about but it doesn't mean we're giving up on getting to oral feeding. If anything, the hope is that the gastrostomy might help Maggie get there more quickly because she'll no longer have this tube down the back of her throat every time she swallows - and because her reflux has measured so badly, they'll also tighten the top of her stomach while they're doing the gastrostomy, which should really help her. And hopefully it will help the doctors be able to pinpoint more definitely when she's suffering from cerebral irritation. It also means that we should be able to take Maggie home sooner, as this method of feeding is much more stable than the tube.

And home's where we're really longing for her to be - to play with her, dance with her, have her all to ourselves. And to be a little freaked out, no doubt. She's been more stable with her oxygen levels and we've been allowed to take her around the ward for little trips in a pushchair, and also just carrying her so she can get stimulation from new environments. The next step is a trip off the ward with a nurse accompanying us and if that goes well we'll be able to do it on our own. Slow progress but progress all the same.

And then Alice can give Maggie a tour, as she knows the sights and sounds like the back of her hand now.