Monday, 13 December 2010

Off The Boyle

Last week on Channel 4 Frankie Boyle made the following jokes about Katie (Jordan) Price’s eight-year-old son, who is blind, suffers from autism, gains weight easily and can barely walk:

“Jordan and Peter Andre are still fighting each other over custody of Harvey - eventually one of them will lose and will have to keep him.”

“I have a theory about the reason Jordan married a cage fighter - she needed a man strong enough to stop Harvey from fucking her.”

I think Boyle should be absolutely free to say whatever he likes, about whoever he likes, to whoever he likes. And in turn, I – and anybody else – should be free to call him a cunt.

I’ve never rated Boyle. I always thought he was merely a sanitised version of the great Jerry Sadowitz. Boyle always seemed to be far too pleased with himself about being controversial. More to the point, he’s just not that funny – any halfwit could sit on a panel show trotting out shocking lines. I could do it, no problem.

I think the main problem I have with Boyle’s joke about Harvey Price is that he played it very safe. It’s not like he picked on a random mother and her disabled child. He wouldn’t have the balls to do that. He picked on Katie Price because he knew there would be quite a few people out there who would think it only right that she was the butt of that kind of joke. Which makes him much worse – because he used a disabled child simply to score a very cheap and easy joke against a very easy target. A cursory glance through the comments on blogs etc. bear this out – many people defending the joke on the grounds simply that it’s attacking Katie Price*.

The thing is, we’ve all received those kinds of jokes as texts or have heard them or told them to friends. What we haven’t done, however, is broadcast them on a public platform. He knew full well that Katie Price would hear the joke. And what does that say about him? That he thinks it’s fine and appropriate to belittle a disabled child knowing that his mother would hear it and be greatly upset about it? When we tell those kinds of jokes we tell them quietly and with a sense of knowing that it’s all a bit distasteful. It’s not hypocrisy to tell those jokes that way – it’s just plain decency. Let’s face it, what kind of nasty, spiteful cunt would go out of his way to deliberately upset the mother of a disabled child?

I don’t know, it’s entirely possible that people have made jokes about Maggie. But I haven’t heard them. And I would hope that anyone making those jokes would at least have the basic fucking decency to make sure that I didn’t hear them.

But as I said, I think Boyle should be free to tell whatever jokes he likes. I’d be totally against censoring him or prosecuting him. I just wish that we could get a real sense of what kind of a cheap bastard he is. He isn’t breaking down barriers or pushing the boundaries. He’s not Lenny Bruce or Bill Hicks or Jerry Sadowitz. He’s just a dime a dozen gag man who believes that saying shocking things is a shortcut to being funny.

Oh, and I also found out that Boyle once said the following about Lewis Hamilton and his brother who suffers from cerebral palsy – y’know, as Maggie does.

"Lewis Hamilton (to his brother): I won a championship today, what did you do?
Brother: I drank from a fucking cup Lewis. Ok!"

* I’ve never understood why we’re all supposed to hate Katie Price. As I’ve never understood why we’re also supposed to hate the likes of Kerry Katona or Cheryl Cole or even Cher, the young girl on X-Factor. Some of the comments I see on Twitter are just ridiculous – the hatred is visceral. I wouldn’t mind so much if these same people were attacking the world’s real villains but they always seem to go for these kinds of working-class girls who, presumably, have got a bit too big for their boots or something. As with Boyle, it’s cheap, it’s nasty and it’s also quite misogynistic. I wish they’d stop it - or at least dish out some of their disdain for people who really deserve it (as a friend of mine on Twitter routinely, and rightly, does).

Thursday, 25 November 2010

MRI Results

This afternoon we had a meeting with all the professionals associated with Maggie's care. It seemed to consist mainly of (dread word) diarising and was, for that reason, a little irritating. And a little pointless.

We were also given the results of Maggie's MRI scan.

The first thing to say is that we need to have another session with Dr Bem to discuss them in detail. They were essentially read out to Shannon while I went in and out the room, trying to quieten Maggie. There was little attempt to translate the results into plain English or for them to be interpreted into something that made sense on a future prognosis level. If you see what I mean.

So there was talk of white matter and grey matter and how Maggie's white matter is very severely damaged. This is the stuff that affects movement and limbs. It is consistent with the damage that was shown at birth.

Her grey matter, while less affected, is, unfortunately, somehow dependent on the quality of her white matter and how communication between the two takes place. For example: while she can clearly see, it could well be that she has little understanding of what she's seeing.

So really there has been no improvement. No magical change. She is a severely brain damaged child and will always be that way. Which is why she is now officially diagnosed with cerebral palsy.

As always, we were unable to get simple answers to simple questions. And that's because, really, there are no simple answers. Every child is different. It's what we're told all the time. While that's frustrating it does, of course, mean that there is some hope that she will be able to defy certain expectations. Or not.

We can only hope.

So far, however, her development has been poor. In terms of things like head growth and general growth. Whereas before we were pinning our hopes on helping her brain to grow through nutrition, it's likely that her brain isn't growing because that's not what her brain is wired to do.

So what we have, in essence, is what we always knew and what we always feared. Of course we were hoping that there would be improvement with her brain. Who wouldn't hope for that?

So in all, it's a very sad day. Which has yet to properly sink in.

Tuesday, 9 November 2010

A Break

Hello.

Today we took Maggie to Quidenham for a couple of days. It was, as always, really hard saying goodbye. We miss her so much when she's not here.

That said, it's been very difficult these past couple of weeks. Her sleeping has got worse. Shannon and I have barely slept. And as well as being exhausted, I've been getting terrible headaches that I've been unable to shift. On top of that, I think I might have a stomach ulcer.

Poor me.

And poor Shannon who has been feeling extremely delicate and sad and worn out. She's at her wit's end.

We so desperately need this break. For both our physical and mental health.

Maggie's problem - I think - is that she's been suffering very badly with wind. She breathes poorly and snorts and gulps all the time. So she swallows too much air. The wind doesn't just cause her pain, it causes her to vomit - which she's been doing during, and after, every feed. So despite her being on the new higher calorie feed, she's still not putting on weight. Which means she doesn't sleep properly - something that's extremely important for her development.

On and on it goes.

Tuesday, 26 October 2010

No Thanks From The Loading Bay Ranks *



A photograph of Maggie, taken on August 14th. I like it a great deal not just because she looks peaceful and beautiful but because I remember how this was one of the very few occasions where she got herself to sleep without assistance. She tossed and turned for a bit, and cried, but eventually got there. It was a significant moment and one that hasn't been repeated.

For the past week or so she's been struggling a great deal with a cold. She has trouble breathing and swallowing and her co-ordination is not what it should be. So with her airways blocked, and all that extra phlegm, she's been sleeping very badly. Lots of snorting and tossing and turning - and that's when she's actually asleep. Every night has been a trial. Shannon and I have hardly slept and we're both really feeling it. Shannon more so than me because she's done most of the night care.

At the same time, however, some things are looking good. She seems to be more alert, more with it. She's doing good things with her movements, from head control to reaching out. The physiotherapy people, and the people from Portage, are generally impressed with her. As are the lovely people at Quidenham who tell us every time that they see improvement. She seems a little happier too and maybe that's because she's getting better at coping with all the shit that goes on inside.

And yet - curses - she's still not gaining weight. So her head and brain aren't growing. We were told the other week that this may not just be due to the fact that she throws up a lot. It could also be because she sleeps very poorly. With her snorting and constant irritations she's almost always in light sleep mode, never really reaching that all-important deep sleep. Which is why, under the instructions of the impressive Dr Bem, they're looking at ways of getting her there. Nose clips? Nasal drops? A different sleeping arrangement in her bed?

I mentioned Dr Bem in a previous post: she's Maggie's new consultant. She seems to be very on the ball and very interested in Maggie's care and development. Get this: she actually does stuff and recommends stuff without us having to constantly fucking bang on about it. She's a world away from our previous consultant. So that's a real bonus. It makes us very happy knowing that Maggie has got someone who is genuinely looking out for her. A round of applause for Dr Bem.

I've just read this back and noticed that I used the phrase 'a great deal' twice. Sigh.

Maggie's now on a new feed which contains significantly more calories than her previous feed. It comes ready-made in bottles so there isn't all the pissing about with powder. That's a good thing. The bad thing is that what we've had so far has been vanilla flavoured. It turns my stomach. Especially because, of course, Maggie throws a lot of it back up. So we've been covered in it. My crotch almost always smells of vanilla. We can change it though (the feed, not my crotch) to either strawberry or banana. Fucking hell. What about chocolate or coffee? Or what about, instead, they stop messing about with flavours and just make it neutral - it's not McDonalds.

It's late and Shannon's gone to bed and I'm tapping this out because I always feel a bit guilty when I don't update this blog. Forgive me if I ramble a bit.

We had a great birthday party thing for the girls. Here's a picture of the badges we had made in celebration. Good huh? The idea was that every guest would be given a badge. But we forgot until most of the guests had left. So if you want one - even if you weren't at the party - do let us know.



Loads of people turned up which was, of course, a relief. It made us very happy that so many people did. And everyone brought the girls fabulous gifts.

(By the way, if you're one of those people and you're waiting for your gilt-edged, handwritten thank you card, I can assure you that you will get one. That's because Shannon is very good at things like that. If it were me, you'd get nothing. What do you want, medals?)

But it really did make us very happy. It was a significant milestone and it was lovely to have so many people sharing it with us. I can't wait until next year's - we're going to book a room in a pub. With strippers and everything.

During the party, Alice got lost in the crowd, handed round to whoever fancied holding her. She was, as always, as good as gold. As was Maggie. In fact, she was beautifully behaved. I imagine that most people left wondering why we're always on here moaning about how difficult she is. They were utterly delightful, both of them.

But wait. Let's not get carried away with good news. I've got my obligatory twatting about at the hospital story to tell.

You recall that every time we have anything to do with the hospital there's always a problem? That they always somehow manage to make things more difficult for us rather than easier for us? So naturally, every time we go up there we're always hoping that just this once things will go smoothly.

I took Maggie up for a barium swallow x-ray thing whereby they fill her with some kind of chalky liquid substance (which I suppose is the barium bit) and then x-ray her to see if there are incidences of reflux. So, they said, have you brought her bottle with you so that she can take the barium as she's normally fed? No, I said, because she's not fed with a bottle, she's fed through a tube - as must be mentioned within her extensive notes. There's no mention of that, they said. Typical, I said, bloody typical. (I didn't say 'bloody' of course because the big babies at the hospital have a complete zero tolerance policy on any type of swearing, however mild. Me, I've always thought that instead of having an absolute zero tolerance policy on swearing they should get some common sense and deal with each situation as it occurs. Perhaps they could occasionally ask themselves if there's a reason why this obviously frustrated person at his wits' end is getting agitated? Perhaps they should act like proper fucking grown ups and stop being so precious and silly and demanding of special treatment and attention simply because they work in a hospital.) I'm detecting a negative tone, said the radiology fella. Well, I said, let me explain to you how every time we come to this place there's always - always - a problem. That's not my fault, he said, it's down to the consultant or the consultant's secretary who didn't mention in the notes that blah, blah, blah and so it's not our fault and maybe you should take it up with them. Why should I take it up with anybody? I said. Why is that something I have to worry about? I said.

And on it went for a bit with them getting very defensive and pointing the finger at everyone in the hospital but themselves. It was like they were asking me to understand just how incompetent and how bad basic communication is up there. I hate how they always expect us to be sympathetic to the problems they have: someone's been off, she only works Mondays, we're short-staffed, the printer broke, the computers went down, the cleaner tipped her bucket over. It's pathetic.

Let's be clear: it wasn't so much that on this occasion it was such a massive problem. It was that it was a problem at all. It was that, yet again, we were made to think that we just can't trust the hospital to do anything right. It's very depressing and very frustrating.

But Dr Bem. She's NHS. And she's great. So there's hope yet.

* Thinking of titles for blog posts is always a bit of a chore. So from now on mine will be taken from lyrics by The Fall. That should put a few people off.

Tuesday, 19 October 2010

Photographs

I was going to write about how fabulous the girls' birthday party was and how lovely it was that so many people turned up.

I was also going to write about the fabulous Dr Bem, who looks as though she's going to be Maggie's new champion.

But I'm too tired.

Click the picture below to see a small selection of recent photographs. More soon.

Addendum: Look at the second to last photograph in the gallery, the one of Alice in the swing. It staggers me sometimes how utterly beautiful she is.

Friday, 15 October 2010

Baby Maggie

I know we're long, long overdue in posting photos of the girls, especially now that they're the ripe old age of one - and I need to learn from Paul how to do this properly so he doesn't have to be the one responsible for it all the time. But one of my favourite pictures of Maggie is clumsily attached below (hopefully).

It's 4.45am, I've just finished feeding Maggie but was contemplating staying up for another hour to feed her a little bit again because she has to go up to the hospital at 9.45am to have dye pumped into her to test the level of her reflux and can't eat anything for 4 hours beforehand. And it hit me - like it often does after a period of time when Maggie's been particularly demanding and upset and sleepless like she's been this past week - she's just a baby.

It's hit me hard this time - because she's just had her first birthday (and was such a super girl for it), because she's going to Quidenham tomorrow and I feel desperate for the break. She's just a baby - who hasn't had a day in her first year when she hasn't vomited, hasn't had a night where she's slept through contentedly. Her little arms and legs move constantly even though she doesn't want them to - she's always frustrated by things her mind wants to do but her body won't let her. She's spent nearly half her life in hospital, lots of times on her own. Her first week of being one and she's had two hospital appointments, a physiotherapy appointment and a milestone development session and is spending three days at a hospice. And she's still so little, only 16 pounds.

Despite all this, she's got a lovely grin that gets everyone every time. Crinkles her whole face and that little high dimple comes out. And the smiles are coming more often, for more people, just because.

We keep getting told that we're doing an amazing job. I think Maggie is too.


Thursday, 7 October 2010

Birthday Blues and PLEASE DONATE!

The girls will be a year old this Saturday. A year. We can't work out whether it seems longer than that or shorter than that. It depends what mood we're in.

So it's their first birthday and, of course, this in itself is a big deal. But the thing about Maggie celebrating her birthday is that she very nearly wasn't here at all. If you recall, in those first couple of days we were told that she would die. And then when she didn't die, we were told that her quality of life would be so appalling that perhaps it would be better if she didn't make it.

So Maggie celebrating her birthday is a very big deal indeed. Right?

Remember also that up until that last hour of labour (when Maggie stopped breathing, starving herself of oxygen to the brain) everything was absolutely fine. Shannon had a very good pregnancy, the girls (we didn't know they were girls then) were very healthy. It was just that moment in labour that cruelly robbed Maggie of a good and proper life.

Of course, I say 'moment in Labour' as if it were just one of those things. It wasn't one of those things. As you may know, women carrying twins are supposed to be in the 'high risk' category. Which means they should be monitored and cared for more closely. That didn't happen with us. What we got was a midwife who, while pleasant enough, clearly wasn't that bright or competent. On top of that, she kept nipping out to see to her 'other woman'. For a lot of the time then, when Shannon was hooked up to the monitors, we were alone. Initially, this didn't concern us too much because the labour seemed to be going fine. When it started to look as though all wasn't well, however, this midwife proved to be next to useless. There just wasn't enough urgency or focus. At one point she even joked to Shannon something about not being able to find Maggie's head when she clumsily shoved her hand up in order to attach a probe.

The details of all of this are a bit painful to recall, to be honest. Doctors came in, they pissed about a bit more. Scanning machines were casually wheeled in, they pissed about a bit more. They tried to find Maggie's heartbeat and when it plainly wasn't there, they finally banged the emergency button.

As I stood there like an idiot, a team of doctors rushed Shannon out.

If there's one thing guaranteed to make me cry, it's recalling Shannon's bewildered, hopeful face as she was wheeled out, as she mouthed to me that everything would be okay.

Within minutes I knew that everything wasn't okay. I was left in the labour room alone for a couple of hours. I called Tom who came straight up and we waited together for news.

At one point, our midwife rushed in with a bundle: Alice. She passed me my daughter as if she were hoping that I wouldn't ask about the other one. But I did ask. Her face fell, words were muttered and pretty soon we were alone again.

Shannon had an emergency caesarean. She was knocked out cold and basically ripped open. They pulled Maggie out and desperately tried to revive her. They somehow brought her back to life and she was rushed off for emergency treatment.

All I wanted was to see Shannon. I'd been told by this point how bad things were and I was working out how best to let her know.

I've always had this attitude - and I always used to say it to Shannon - that whatever happens in life, it'll be all right in the end. You know: what's the worst that could happen? Shannon repeated this to me, obviously hoping that I'd tell her that yes, everything would be all right. But I couldn't do it. I tried to tell her, gently, to prepare for things not being all right. I mean, I was half expecting us to be told that Maggie was dead.

For the next few hours, Shannon kept telling me not to worry, that everything would be all right. She kept saying things like: "Come on, you always say it'll be all right - and it will be. I know it will." That, too, when I think back to it, breaks my heart. Shannon trying to be hopeful and optimistic and repeating back to me all the casual, stupid things I say - like how very bad things only seem to happen to other people.

A few hours later we were told that Maggie's condition meant that she would be unlikely to make it through the night.

We fell apart.

We were told that Alice was fine, but with a few problems, and that we could go and see her. We were also told that we could go and see Maggie who was in the intensive care unit hooked up to every machine going. We decided, after much agonising, that we would go and see Alice and not see Maggie. Bear in mind we were told that she only had a few hours to live. We thought that perhaps it'd be best not to see her in the state she was in - so that we wouldn't always have terrible memories of her.

So we went to see Alice and it was devastatingly sad. As we left her, we passed the room where Maggie was. We could see where she was in the far corner of the room. At that moment we knew we had to see her.

So we saw Maggie and it was as heartbreaking and as soul destroying as you can imagine it was.

That night we cried so much that I couldn't believe it was possible to cry that much. We just didn't know what to do. We talked about how you go about arranging a funeral for a baby. And then we realised that our girls didn't even have names.

We'd always liked the name Alice. So we decided that, as she was going to live, she could have that. We struggled with a name for Maggie because what we were doing was naming a dead baby.

The next morning we were visited by Maggie's consultant who said that, against expectations, she'd had made it through the night. But now we were faced with the prospect of her having a quality of life that would be so low that she'd be better off dead. Both Shannon and I agreed that we would go for that option, if that option presented itself, to relieve her suffering.

Things start to get a bit blurry now.

The following day, I think, we were told that again, defying expectations, Maggie was looking a little better. It turned out that she was a fighter.

It was around this point that we gave her the name Maggie. It was on our list, that name, but right at the bottom. We'd already rejected it. But for some reason it seemed to fit. Maggie seemed like a name that you would give to a fighter. So of course there's Thatcher; but it wasn't just that. There was Maggie Bell, the gravelly-voiced, hard-living Scottish singer who my dad loved when I was a kid. And, of course, Rod Stewart's Maggie May.

It seemed to fit perfectly. And it seemed, in a daft way, that if we gave her the name Maggie she might somehow live up to it.

The days that followed were just really bleak and upsetting and nightmarish - in the sense that it all seemed utterly unreal. We cried all the time. I mean, all the time. We saw Alice lots, of course, and we also saw Maggie who was still fighting. But a lot of the time we were alone in our shabby hospital room.

I say 'our' hospital room. I shouldn't have been there. But they let me stay - y'know, as a favour.

So the days turned to a week and...

You know, in all the time we were there nobody from the hospital - and I mean nobody - took a single moment to say to Shannon: "Are you okay?" Nobody there thought to themselves to just ask this frightened, devastated new mum how she was. Nobody at all. The midwife who was there during her labour - we never saw her again. Not a peep. Nobody offered counselling or advice or anything at all. Like I say, not even a "Are you okay?"

Of course, with it being the girls' birthday we're going to be looking back to that time. And thinking about this past year. We've documented a lot of it on this blog. But even there I think we've failed to get across just how terrifying and lonely and sad it's been. And still is.

You read this blog and you'll get a sense of real frustration and anger. That's because it's mostly been me writing it. I can do anger quite easily - and I've had a lot to be angry about.

But like I say, I think I've failed to get across just how much this has hurt us. We put a brave face on it, as everyone does, but I think I've gone a little too far with it. I come across as angry and bitter and determined and capable and strong. But I'm nowhere near as strong as I try to make out.

So for instance:

I've got this stupid double life on Twitter which Shannon finds a little difficult to understand. But it's this: when I'm trying to get Maggie to sleep or feed her while she's howling in my face, my iPhone, and Twitter, opens up a world that's outside of all that. I can literally hold it in one hand and have Maggie on the other. So I can be a little more like me. And one thing I love about Twitter is that it allows me to be a little more human. I can't read books any more, I can't write any more, I can't do the stuff that helps to keep me sane. Twitter, as daft as it sounds, allows me a bit of that.

One of the reasons I mentioned appearing to be strong and capable is that I've been wondering if this accounts for the way certain people have behaved towards us. In all seriousness, I've got friends who haven't been in touch with me - I mean, not at all - since I told them on the first day what happened with Maggie. I find that incredibly sad and it hurts me much more than I've so far let on. We've got work colleagues who say nothing at all to us about the girls. I mean nothing. I'm not saying that they don't say enough or that they don't say things in the right way - I mean they say nothing.

So what is it? Why, over this past year, have some people chosen to have nothing to do with us? Is it because, as I say, we come across as too capable? Do we - I - seem a bit intimidating?

I realise that this probably isn't doing me any favours. I'm just trying to be honest. I'm trying to get across - for once - how lonely and sad we feel most of the time. Believe me, despite how it comes across here, I'm not shouting and ranting and getting annoyed all the time. Most of the time I just feel sad and lost. As Shannon feels sad and lost. And one of the reasons we feel like that is that we've come to realise that we're on our own.

Don't get me wrong though - many, many people have been fabulous. I love my friends who I drink with and have a laugh with and those I chat to on Twitter or wherever. They don't always ask after the girls, but that's not the point - they're there for me.

Talking of always being there for us:

The people at Quidenham have never let us down. Without them I think we might have gone under a while ago. They're not just lovely and friendly and caring - they're extremely professional and have a real understanding of Maggie and of us. We leave Maggie there for a few days and we know she's in the very best hands. Believe me, that's really special.

The sad thing is that they're a charity. They have to struggle like every other charity. They provide essential care and support for people who, through no fault of their own, have ended up on the shit side of life. And yet they have to go cap in hand, fighting for donations. That seems wrong to me. Even if I didn't have a disabled child, it'd still seem wrong to me.

So they need donations. And as it's the girls' birthday, I'd be very grateful if everyone who reads this could nip over to their website and give them a few quid.

Thank you.

EACH Hospitals - Donation Page

Oh, and apologies for all the self-pitying crap above. It's a tough time at the moment, as I'm sure you'll understand.

Wednesday, 29 September 2010

Maggie Does Good. Alice Does Gooder.

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

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

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

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

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

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

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

Four sentences starting with 'So'.

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

Friday, 24 September 2010

Serenity Now

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

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

Tuesday, 21 September 2010

We Would Have Her Any Other Way

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

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

Where am I going with this?

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

It’s here.

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

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

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

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

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

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

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

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

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

Monday, 13 September 2010

Rubbish and Sick

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.

Thursday, 9 September 2010

Alice at The World's End

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

Friday, 3 September 2010

Maggie and the NHS

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

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

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

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

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

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

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

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

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

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

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

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

Crossed wires and miscommunication are par for the course.

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

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

Thursday, 26 August 2010

Maggie at the end of August

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.

Wednesday, 11 August 2010

Alice

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.

Monday, 19 July 2010

...And the optic nerve too

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.

Sunday, 18 July 2010

Looking Forward: The Eyes Have It

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.

Sunday, 11 July 2010

Looking Up. A Bit.

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!

Tuesday, 6 July 2010

At last, from Shannon

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!

Tuesday, 29 June 2010

Maggie and Alice and Shannon

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:

Friday, 25 June 2010

At Last, A New Post

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.

Sunday, 20 June 2010

Happy Father's Day!

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!!

Saturday, 5 June 2010

Grammy and Grandpa, Kali and Marlisa

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:

Sunday, 30 May 2010

Quidenham

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

We really miss her.

Friday, 21 May 2010

All The Way From the USA

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:

Friday, 14 May 2010

First Love

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:

Monday, 10 May 2010

Downs. No Ups.

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.