Thursday, 3 April 2014
Thanks to everyone who helped us out. It was greatly appreciated.
Wednesday, 9 October 2013
Monday, 26 August 2013
Saturday, 10 August 2013
I feel very sorry for her. It’s a terrible thing.
So far though she’s been absolutely brilliant. A few wobbly moments but generally hanging on – despite being in quite a bit of pain and discomfort. To be honest, I don’t think it’s quite sunk in.
As well as knowing that she can’t go out looking like that – she can’t cover her face up – there are the practicalities of handling Maggie by making sure she doesn’t grab her face. Of course, we can’t just tell Maggie not to do this as she wouldn’t understand. But even if she did understand she can’t control her movements. A quick whack from her flailing hands would be enough to undo the whole thing.
Naturally, the overall feeling is that this is just another thing to add to the pile of misery. Because it’s not enough that she has a disabled child to care for.
But I imagine she’ll do what she always does: get on with it. And be as strong and as determined as she always is. Or, rather, always appears to be.
Sunday, 5 May 2013
The top two photographs were taken by my dad, the bottom two by me.
Tuesday, 2 April 2013
To get straight to the point: our friend Ryan is doing a charity bicycle ride this week to raise money for East Anglia's Children's Hospices (EACH). As regular readers of this blog will know, EACH mean a lot to us and to many disabled and life-threatened children. We'd be very grateful then if you could sponsor Ryan. It doesn't have to be much: a fiver will do. Thank you.
Here's the link:
To waffle on a bit, below are a few words from Ryan himself about why he's doing it. I'd like to point out here that he's not a cyclist and he's doing this all on his own. So as well as being a rather wonderful and courageous thing to do, it's also quite foolhardy. Especially in this weather. So you never know - he may fall off and die or something and then get loads more donations and national publicity. Best of all, you can say: "You know that cycling bloke who was found half eaten by foxes on the side of the A1 the other day? I sponsored him." It can be your little claim to fame.
In case anyone without a sense of humour is reading: I don't really want Ryan to die. It's just a joke. Besides, I want him to live so he can do this every year. Every single year. Until he expires from old age and exhaustion.
Within his piece he says some very nice things about me and Shannon. They are, of course, all true. And below his piece is something I wrote about EACH last year (just in case you need to know a bit more about what they do and what they do for us).
I don't really enjoy the company of other cyclists. Conversations with them are usually awful. I can understand why they talk about things like speed and mileage. That's fine. I always like to hear about achievements. But as soon as the conversation turns towards anything technical or brand-related or "sustainable", I switch off.
So I don't want to talk too much about actual cycling while I've got this blog. It'd bore all of us.
I want to talk about other things. Like why I'm doing this trip.
I can't think of a family I admire more than Paul, Shannon, Maggie and Alice. Given all the difficulties that surround Maggie's disability, you'd understand if her parents were too preoccupied to think so sharply about the position they're in. Or to stay as rigorously in touch with the rest of the world as they do. Or to make so much time for other people. Yet not only do they achieve all of this, they so often make it look easy too. It obviously isn't.
Right up there, too, is their attitude towards the world of disability. We all know that it's a world of sadness. But thanks to them, we know that it's also a world of sanctimony, incompetence, indifference and laziness. It's excellent that they both get angry and react against all of these things. Because these things are genuinely fucking scandalous.
Reading this blog makes me angry, too. Angry that charities such as EACH have to exist, and angry that they get no government funding.
But I also find it heartening to understand what EACH mean to families like this one. On a daily basis, they improve the lives of countless children, and they improve the lives of all their parents too.
Whenever I've thought about that during my training for this trip, it's cheered me up. Despite the freezing conditions. And the knee pain. And the arse pain. And, to be honest, the protracted period of depression with which a lot of my training has coincided.
Please donate. If you can.
All of us will be grateful for every last penny.
How EACH helps us:
EACH (East Anglia’s Children’s Hospices) supports families and cares for children and young people with life-threatening conditions across Cambridgeshire, Essex, Norfolk and Suffolk. They provide care and support wherever the family wishes – in families’ own homes, in hospital or at one of their hospices in Ipswich, Milton and Quidenham.
They are a registered charity (no. 1069284) and need to raise around £4.8 million in public donations to deliver their services this year. This amounts to more than £13,000 a day, every day of the year.
We first heard about EACH (Quidenham) from a nurse at the hospital when Maggie was still in intensive care. I remember thinking then that I’d never be happy taking her there. I didn’t want her mixing with disabled kids because I didn’t want to accept the fact that she was disabled. It’s called wishful thinking.
The first time we took her there I was overwhelmed with sadness. By crossing that threshold it was almost as if we were surrendering her to disability. Everyone was very kind and understanding but I despised them all, including (and maybe especially) the kids. As far as I was concerned Maggie shouldn’t have been there.
Over time, those feelings passed. This was partly as a result of us slowly accepting Maggie’s condition but mainly as a result of realising how fantastic the people at EACH are. They have only ever had Maggie’s best interests at heart. Ours too. More than anyone else we have to deal with, they understand what our lives are like. Not just the day-to-day stuff, or things like the lack of sleep, but the pain and sadness that comes with having a disabled child.
On the surface, what EACH gives us is very simple: they give us a break. They take Maggie and allow us to have a few days and nights off. But more than that – much more than that – they make Maggie’s life richer. The people there aren’t just carers, they’re professionals who are dedicated to making disabled kids’ lives better. So Maggie gets physiotherapy, cognitive support, music therapy, play therapy and all kinds of good stuff that will enable her to have a better chance in life. She also gets love and care and undivided attention.
In this respect, EACH has been, I’m sad to say, more of a friend to us than quite a few of our real friends. A consequence of having a disabled child is that you become isolated. Not simply because of the practicalities associated with caring for a child with a disability, but because people don’t seem to want to know you. Or they just forget you. But with EACH we get help and support and understanding, both at the hospice and here at home when they come out to give us respite or to babysit. As a result of this, Maggie has grown very fond of many of the people there. So much so that these days she even looks forward to her visits.
One of the things I like about EACH is its purity. It’s a charity that looks after disabled kids and their families. Kids and families who, through no fault of their own, lead extremely difficult lives. (I should point out here that there are families who use EACH whose lives are much more difficult, and sadder, than our own: it’s not called a hospice for no reason.) Which is why it’s almost scandalous that it’s a charity, rather than an essential service. If we’re talking about the most vulnerable people in society, the most deserving even, then I’d have thought that disabled children would be the ones most in need of care and attention. I’d think that, by the way, even if I weren’t the father of a disabled child. Yet EACH has to fight it out with all the other charities out there.
Here, again, is the link to Ryan's Justgiving page:
Sunday, 10 March 2013
As you may have seen from the previous post, Shannon’s been struggling a bit with being a mum. Or, rather, struggling with being the mum of a disabled child. Or, rather again: struggling with the guilt and worry that comes with being the mum of a disabled child.
Which, as someone pointed out, is more evidence of a what a great mum she is. Because she does genuinely worry about all that stuff and does genuinely beat herself up about it.
That she doesn’t need to beat herself up is a given. Of course she doesn’t need to beat herself up. But she does and she will.
I think part of the problem with this is that we’ve both been pretty good at putting on a brave face and getting on with it. If you only know us from this blog then you might think that all we do is moan and get upset. But that’s not true. This blog is a specific outlet for that kind of thing. In reality, in our day-to-day life, we just get on with it. For instance, when we’re asked by friends how things are, we tend to reply: “Oh, you know, the usual.”
To be honest, I think that may be part of the problem: we don’t give ourselves enough credit for how hard all of this is. We take it in our stride but are occasionally tripped up. I used to think, when people said “I couldn’t do what you do” that they could. But now I’m not so sure. Being on Twitter these past three years has opened my eyes to how some people can’t seem to cope with even the most trivial upsets. The big babies. But then, maybe I’m being unfair – maybe Twitter is as much an outlet for their moaning as this blog is for ours. And of course everyone’s entitled to their problems and everyone’s entitled to moan. I appreciate that.
But – and this is leading somewhere- I genuinely believe that not many people could do what Shannon does. It’s not just the coping and the managing and the getting things done. It’s also the dealing with this not being what she thought motherhood would be. And dealing with the sheer fact and heartbreak of having a beautiful daughter who is severely disabled. Who will always be severely disabled. This isn’t the same as having a difficult baby or troublesome kids or whatever. This is for the rest of her life.
I wanted to write something for and about Shannon on Mother’s Day. But I didn’t want it to be just the usual dippy ‘best mum in the world’ stuff. Besides, what she has to deal with often isn’t just the stuff you’d normally associate with being a mother. Shannon isn’t just a fantastic mother because she’s great at all the maternal stuff. She’s a fantastic mother because she’s a fantastic person. And yes, this might sound trite but: both of our girls should be very happy and grateful that they have her for a mother. They could have had someone else. Someone not nearly as brilliant and as wonderful as Shannon is.
Thursday, 7 March 2013
For obvious reasons, being a mum isn't how I thought it would be. Or how I thought I would be. All my life I've been good with kids - fun, patient, natural. I liked them and they liked me. It was easy, and yet being a mum isn't at all. It's really, really hard and although I do still feel natural, I don't feel like I'm fun or patient. And I move constantly in my feelings about that - from beating myself up for not being happier, more patient and more fun to resenting the circumstances that have made it so difficult to be all those things. There are so many, many times when I'm not enjoying being a mum, and that just feels wrong and awful. It isn't how I'm meant to feel.
I wasn't expecting this landslide of guilt every day - especially with Maggie but also with Alice. I don't put Maggie in her standing frame every day like we're supposed to. I don't do anywhere near enough physio with her. The same goes for her body suit, her sleep system, her splints, her communication. I think I just want to be a normal mum, and those things aren't normal. But not doing them will wreck her physically over time - and for all the guilt 'normal' mums have for their children, they don't have to deal with that.
But I do. And moving in these disabled circles, so many other mums do too. The last time we were in hospital to change Maggie's tube a severely disabled 11 year old girl was just across the way. She'd been in hospital for four of the last six months and she was dying, her brain was shutting down bit by bit. As much as I have to imagine with Maggie, I couldn't imagine that - and I felt lucky. Going to Quidenham often makes me feel lucky too. It could be so much worse - and I am so grateful that Maggie is as bright and responsive and happy as she is. That she knows we love her so, so, so much - and that she can express her love for us.
I know I'm a good mum to Maggie and to Alice, but I'd like to be better. I'd like for it to be easier but I fear it's going to get harder instead. And sometimes I'm not sure how much harder I can handle. They're such beautiful, wonderful girls, my girls, and they deserve the mum I was going to be.
Sunday, 17 February 2013
Tuesday, 5 February 2013
At this stage it's mainly about Yellow Submarine - the film, the book and the CD. At night she insists on having the music piped into her bedroom and during the day it's either demanding to watch the film or read the book. More than that, there are constant conversations about them: who sang which song, where Ringo lives, re-enacting scenes from the film etc. Our car is now the Silver Submarine.
It's all very sweet and I love how she's aware that there's something magical about The Beatles. It all fits with the way she is: bright and imaginative and full of wonder.
Anyway, here she is singing The Beatles. As audition tapes go, it shows real promise for a three-year-old. But if she really wants to make it, I think she's going to have to at least wipe her face, control the coughing and maybe think about getting a different backdrop.
Tuesday, 29 January 2013
Maggie's just been rushed to the hospital because the feeding tube that goes deep into her gut came out. The hole that's left in her stomach heals fairly quickly so they have to shove the thing back in as soon as they can. Actually, that makes it sound more straightforward than it is...
The last time the tube came out they couldn't fit one because they didn't have one. Despite the fact that they should have had one. Why didn't they have one? No-one knew. Just one of those things. You know, the usual hospital bullshit.
Shannon rang this evening to check whether they've got one this time (which they should have because they promised us, what with lessons being learned etc.) and they had no idea. No-one was answering the phone down at the department where they keep all their tubes or wherever it is. But she's gone up there anyway.
The reason I'm writing this, really, isn't because this is out of the ordinary. On the contrary, it's because it's all so commonplace. To the extent that we've just sort of accepted that Maggie has so much shit that she has to deal with. And I think this is why I haven't updated this blog in a while: because it's all so much a part of her everyday life that it hardly seems worth mentioning. Or worth moaning about. It's just the way it is.
But occasionally it gets to me a bit. So I write something like this. And although nothing changes, it makes me feel a little better.
Update: Maggie returned home last night with a makeshift tube that only allows for daytime feeds - rather than it being the combined tube that allows for overnight feeding. As I mentioned, they're supposed to have the proper tube at the hospital - especially because they promised, after last time, that they would have. We've just been called by one of the surgeons from the hospital: they've had to order a tube and don't know when it'll be delivered. Hopefully by Friday. When I pointed out to him that they were supposed to have one on site, he replied: "Ah, yes, er, well...".
As I said earlier: the usual hospital bullshit.
Tuesday, 15 January 2013
I just had a row with one of the blokes who works in the office at Maggie and Alice’s nursery. As I pulled in this morning I noticed that the bays where the staff park had all been cleared of snow. The parking bays for parents – and particularly the two disabled bays – hadn’t been cleared of snow. I remarked to one of the receptionists - as I struggled past carrying Maggie, pulling her (very heavy) chair, keeping an eye on Alice and propping open the doors with my feet – that I thought this a little odd. Yes, it is a bit, she replied.
After dropping off the girls at their class, I returned to reception to ask whether I could expect the disabled bay to be clear when I returned to pick them up. The receptionist started to say yes but a voice from the back of the room shouted: “We don’t have to legally do it you know!” This made me angry: “Oh, you don’t have to legally do it? Fine. I’ll just slip and drop Maggie shall I?” I then stormed off.
As I got a few steps out my anger made me turn back. The bloke who’d shouted had the same idea and we met at the door. He started ranting about how he didn’t have to legally clear the snow from the disabled bay or from any bay for that matter all we have to do is clear the road and I’ve been out here for four hours this morning clearing all this and whah, whah fucking whah. To the latter point I suggested he take it up with his employer. To the other point I responded that legally people don’t have to do lots of things – but they do. It’s what makes us nice, decent human beings.
And, of course, he didn’t have to legally clear the staff parking bays either. But he did. If all the parking bays had been left covered with snow I wouldn’t have said anything.
Most days – twice a day – me or Shannon struggle through those nursery double doors carrying Maggie and pulling her chair and keeping an eye on Alice. We haven’t ever – not once – asked for assistance. Even though we’re running the risk of dropping Maggie or doing ourselves an injury. And every day the people in reception watch us doing this. Today it would have been good to have had a little assistance. Or, rather, to have had a little consideration.
But really it was the “we don’t have to legally do it” that boiled my blood. Two things: it’s a very mean-spirited view of the world and, worse, the implicit suggestion there is that I was asking the fucking earth. Who do we think we are with our pain in the arse disabled kid and unreasonable demands?
NB: The girls’ nursery, by the way, is fabulous. The staff there are great and Laura – the young woman who looks after Maggie – is marvellous.
Wednesday, 26 December 2012
Thursday, 25 October 2012
Both Maggie and Alice love the Dear Zoo book. As did all of my kids. You probably know it but if not: it’s a lift-the-flap book that features a different animal on every page. It’s very simple and very charming.
Yesterday I was in Sainsbury’s and was impressed by their range of rather wonderful Dear Zoo kids’ clothes. But when I picked up one of the tops I saw a large label that boldly declared it was for boys. All of the other clothes had the same label.
According to Sainsbury’s then, Dear Zoo is no longer something for all children, something gender neutral – but something that’s only for boys. Zoo animals are now only a boy thing.
This annoyed me not because it was so singularly outrageous but because it was so depressingly familiar. Everywhere you turn these days girls are encouraged to like things that are... well, utterly soppy and dippy. Things like fairies, princesses, cupcakes, celebrities, flowers, pink dresses and babies. Of course, this kind of gender division has always been with us but over the past few years it’s become much worse. It’s almost as if they – marketing twats, toy manufacturers, clothes makers – are determined to turn girls into fucking idiots.
Boys, on the other hand, are encouraged to like cool things: robots, monsters, music, space stuff, cars, planes and sport (even though sport, of course, isn’t cool). Not only that, they also get to enjoy things that should be, by any definition, gender neutral. Buses, for instance. Or tractors.
Take a look at the photographs at the bottom. The Next train cushion and the bus light shade are marketed specifically to boys. Why?
I tweeted someone at Sainsbury’s today and asked why they were marketing those Dear Zoo clothes exclusively to boys. Here’s his response:
“The Dear Zoo range was originally introduced for both boys and girls back in 2011 but the girls’ range unfortunately experienced a distinct lack of demand, hence this year’s collection being focused on boys. It doesn’t mean that girls can’t wear Dear Zoo stuff. I hope your little one isn’t put off.”
How did they know that girls weren’t buying the clothes? Because, of course, they had some specifically for boys and some specifically for girls. Why they didn’t just sell them as children’s clothes is beyond me.
Actually, it isn’t beyond me. It’s because marketing twats love to know who/what their demographic is. They love to know this so they can target stuff better. As they see it, they’re not in the business of worrying about what’s culturally or morally suspect – they’re in the business of making money. Which is normally ok, when it comes to adults – because we can, and should, trust them to be a bit more savvy. With kids you have to be more careful.
My response to the Sainsbury bloke’s hope that my “little one isn’t put off” was: “She’s three-years-old. Just starting to read. She sees ‘BOYS’ on a label, she’s put off.”
The thing is, at that age kids are starting to learn about rules and regulations and boundaries. And every parent who doesn’t want a horrible little bastard running around tries hard to get them to understand them. So it’s hardly surprising that when girls see BOYS written on things they regard it as somewhat instructional, somewhat authoritative. And when they constantly see TV ads and programmes that feature little girls dressing up as princesses and swooning over celebrities, they regard that as just the way of the world.
(That makes sense, right? I was going to do a lot more research into this whole issue but a) I just don’t have the time and b) who needs research? I know I’m right.)
The bottom line is: I hate, with a passion, those aspects of our society that demean, belittle and devalue girls. That says that only certain things are for them: that only soppy, stupid things are for them. Worse: that some things definitely aren’t for them. And we wonder why girls aren’t doing science at school.
Without turning into one of those nauseating “Oh, women are so much better than men” men, I’d say this is all the more tragic and depressing because girls, in general, are brighter than boys. (If this were a proper essay or something I’d link to some kind of citation - but as it’s just my blog I’ll go with anecdotal/personal evidence.) Girls, in general, are brighter than boys. It evens out as they get older but when they’re very young, girls make boys seem like halfwits. And what do we do with this? We encourage them to be idiots. Maybe it’s some big patriarchal conspiracy to stop them getting ahead...
(Actually, I have a little theory about why this has got worse in recent years: the increased role of fathers. Or, rather, those fathers who are obsessed with having daughters. It’s like they want to live up to that “dads and their little girls” cliché. You know what I mean. The kind of bloke who treats his daughter like a little princess, who constantly tells her she’s his little princess, who treats her completely differently to the way he would his son. I’m not saying this is the only reason, obviously. Just partly. Maybe. I don’t know. If you're reading this and you're one of those fathers - I don't mean you, obviously.)
I’m not suggesting that there’s no place for fairies and princesses and all that nonsense. Just that it doesn’t have to be all about that. Don’t we have a collective responsibility to say to girls that anything and everything is for them too? Don’t we have a responsibility not to force them into stereotypes? And particularly not to force them into stuff that’s only... well, utterly soppy and dippy? Don’t we want our girls to grow up thinking that they can be anything they want to be, that they’re just as good as boys? That they can be smart and clever and interesting?
Of course we do. We’re not the fucking Taliban.
Monday, 15 October 2012
Last week Shannon took Maggie to the hospital for a physical assessment. During the course of this she was informed that Maggie doesn’t have spastic cerebral palsy. She has athetoid cerebral palsy.
Here’s the definition.
The thing is, we always knew she had athetoid cerebral palsy. It’s just that we didn’t realise it existed. Maybe because no-one told us. Not even Maggie’s consultant who, you might think, would know about these things.
As you’ll see from the definition, Maggie will always struggle to eat. In fact, she may never eat. And she’ll never likely talk. Or walk. Or sit unaided.
What can I say about that except that it’s something we always knew and/or suspected? And that it’s fucking horrible.
The other side to this is that, according to the specialist Shannon saw, people with athetoid cerebral palsy are less likely to be mentally damaged. The other side to that is that, as well as the brain damage that caused her cerebral palsy, Maggie also suffered secondary brain damage that is likely to affect her mentally. So she loses on all counts.
However. From that brief assessment – and from what we know about Maggie – they could see that she’s bright and alert and very intelligent. So it’s possible that she’s mentally very slow. Or maybe not so badly damaged. Which is potentially good news.
However. The big problem with that is that she’ll grow ever more frustrated from basically being an intelligent person trapped inside a useless body. She’ll be well aware of her condition and have to deal with the anger, sadness and bitterness that comes with that.
The specialist at the hospital also suggested that Maggie could eventually go into mainstream education, with one-to-one care and support. This pleases us because it fits with everything that Maggie is. We took her to a special school the other week and could tell that she wouldn’t fit in there. She didn’t seem anywhere near as mentally damaged as some of the kids (who were also a lot older). The woman showing us round told us much the same thing, after just casually observing her for a few minutes.
And that’s the thing with Maggie. She likes people and noise and toys and books and lights and activity. Just like any other kid. She responds to all those things just like any other kid. But just a lot slower. Mentally I mean.
She’s currently having speech and language therapy sessions every week and progress has been good. Not with her speech or reaching out and grasping but with her communication and understanding. It’s clear that she doesn’t miss much. And as it’s likely that she’ll never be able to speak or reach, she’ll have to communicate some other way: with her eyes. So that’s what we’re working on. Her therapist tells us they’re making good progress with eye recognition technology and that it’s not beyond possibility that Maggie would be able to use this in the future to help her communicate.
More generally, she’s been quite sick these past few days. Throwing up a lot and being miserable. It could just be a bug that’ll pass soon. Or maybe it’s something else. The upshot is that she’s still not putting on weight and still not sleeping well. Previous to this she was sort of sleeping through the night. I say sleeping through but she woke at around 4am every morning. And that was it. We had to get up with her. At 4am. Every morning.
Alice has had a very bad cough these past few weeks and has also been up all night, howling away. It’s been great fun. However, she’s now on antibiotics so hopefully she’ll be ok soon.
In all, I’d say that life’s not too great at the moment. Me and Shannon have our problems that we – I – need to sort out. The fact that we get no breaks, that we have constant demands on our time and attention, that we get no sleep, that we’re always sad and angry doesn’t help. Plus the fact that there hasn’t been much work on recently and that we’re both here in the house, not getting stuff done, never having the time to get stuff done. That we’re worried and lonely and isolated and falling apart and heading towards poverty – just as all the research shows that happens to families with disabled children. We’re a fucking cliché.
Tuesday, 9 October 2012
Maggie's at nursery* this morning - which she loves - so we'll be opening presents later this afternoon. We bought Alice a bike which we fully expect to be something of a challenge due to her contrary nature and her reluctance to do anything that has the slightest hint of risk or injury. I might just strap her to it and push it down the hill. Maggie has got a load of stuff for her dolls. I don't normally approve of dolls for girls but they seem to bring out the best in her: she really engages with them.
Happy Birthday you wonderful, lovely girls!
* Update: Maggie won't be at nursery this morning because she's ill. And tired, after being up all night. Sigh.
Click the pictures to see them big:
Wednesday, 19 September 2012
Thursday, 30 August 2012
That said, I find that nine months later I stand behind most of what I said - or, rather, felt. I don't expect people to agree with my view, by the way. I suppose all I was hoping for was an understanding of why I - personally - might feel that way. And thankfully, most people, after reading the post - maybe after putting themselves in my shoes - did see why I might feel that way, even if they disagreed with me. Which was great.
I mention all of this because tonight on Twitter one of my followers tweeted a link to that old post to make his own points, to give some kind of credence to his own problems with the Paralympics. Actually, what he said was: "I don't like the paralympics. At all. In complete agreement with @paulsaxton. Makes me uncomfortable."
As a result of that, there were quite a few replies from people who were a bit outraged by the 'uncomfortable' bit. Of course, they didn't actually read the blog post. And why should they? They were just replying to what looked like a provocative and rather stupid tweet.
I have no idea, by the way, why that person who co-opted me in their tweet is uncomfortable with the Paralympics. But whatever the reason, I'm quite fucked off that he dragged me into it. If he's uncomfortable with the Paralympics, why doesn't he write his own post? So yes, I'm annoyed that he's made me look like some insensitive, contrary dick who's just mouthing off about the Paralympics for no reason.
As time has passed, I'm a little more open to the idea that the Paralympics will be a force for good. It's been great to see so many people enthused by it. I hope our Paralympians do well - I'm as impressed with their personal achievements and stories as anyone. Good for them. And I hope it goes some way towards changing attitudes.
That said, let's not forget that in the run up to these games - during a time when the media was full of great stories about the Paralympics - that hate crimes towards the disabled greatly increased. (More here.)
So we'll see.
Thursday, 19 July 2012
I forgot that, and so I wasn't prepared for last night. For Maggie to wake up at 11pm in pain from the surgery, from the new, bigger tube pushed through her stomach and into her intestines. They said at the hospital they'd 'just' stretched the tract that was already there with a bigger tube and pushed it a bit further down so it shouldn't really bother her. They didn't say she might develop a nasty cold that kept her up coughinga and distressed the whole night. They didn't say that she might vomit, and it might have blood in it from the trauma of the operation. And when we rang the hospital at 2am to report what was happening, they didn't ask if the vomit had any milk in it - which should have been the first thing they asked because if it did, it would have meant that the tube had moved and we should immediately come back up to the hospital.
We know all this now because one of our community outreach nurses went up to the hospital to see us and was surprised, and angry, that we'd been discharged the previous day. Because she knows what it says on paper and what actually happens for many, many of the disabled children under her care. She told me the blood in the vomit could have been expected and that we shouldn't be too worried about it. And about being aware of the milk in her vomit while she was being fed into her intestines. And that it isn't 'just' a matter of pushing a tube a bit further down - it was a tube 50% bigger than what her stomach and body were used to and it was bound to cause pain and discomfort in the early days. And she told me what I'd forgotten - that Maggie has always struggled with changes to her feeding and this was a big change that would take time to adjust to, and would be a difficult thing to adjust to. Most importantly, she told me what to do about it tonight and she's coming to see us tomorrow morning to tell us, from her experience, how we can best manage things over the next week.
By the way, it's this same experience that the local authorities and NHS are completely ignoring in their budget-cutting exercises as they try to justify suggestions that a newly trained nurse could do the job of these community outreach, complex needs nurses. They can't. And losing their experience and advice and care would be a real blow to us and, I imagine, to the other families with disabled children that rely on them.
So, I feel stupid and I'm angry with myself for letting Maggie down. She's slowly feeling better, trying to give us little smiles, bless her. She'll get there, because she always does. But it would have been nice for her to have better help along the way.
Monday, 16 July 2012
Also, I’ve been spending the little spare time I have teaching myself to play the piano. It’s going very slowly but I’m loving it. I’m doing it partly as an escape and partly, I have to say, because it’s something Maggie will never be able to do. Unlike her, I have no fucking excuse not to do something I’ve always wanted to do.
I thought I’d write this post, however, in advance of Maggie going into hospital on Wednesday for the operation we’d previously mentioned. As you may recall: it’s so she can be fed through a tube directly into her bowel or intestines or wherever. The idea is that she won’t be able to throw her food up and will therefore put on weight. The other idea is that she’ll be plugged in throughout the night so will need to take a little less feed during the day. That is, it’ll free her up a bit. It’s a dual peg thing that enables her to be fed through her stomach, as she is now, and also through her intestines. Lovely.
She goes in to hospital on Wednesday and could be in for two nights. But hopefully just the one. Shannon will be with her the entire time.
In the past few weeks – or months – Maggie has been up and down. The worst thing, by far, on a day-to-day basis is her continued lack of sleep through the night. We’re still up with her at all hours and we’re still knackered and depressed about that. It’s like having to live with a difficult new-born baby – something we’ve done for almost three years now. We’re slowly introducing her to the sleep system which will hopefully improve things but needs to be done for her physical development. She needs to be able to sleep on her back: something she’s never been able to do due to the constant vomiting. Her newest thing is to wake at 4am and stay awake. Really, night after night of desperately trying to get her back to sleep while the sun’s coming up and the bastard birds are banging on is one of the least fun things we do. It’s then that I’m, in particular, at my lowest – when all the bitterness and sadness and hate comes flooding in.
She also takes at least two hours to get to sleep in the evening.
Outside of the sleeping issues, she’s made some good improvements. She’s a much happier kid during the day. Much more communicative and responsive and delightful to be around. She loves nursery, playgroup and the School For Parents at Scope.
She’s still taking certain amounts of food orally and was coping really well with it. Not enough to sustain her – not nearly enough – but enough to give us some hope for a better future. However, recently she’s pulled back a bit. She was really enjoying eating custard (and almost exclusively custard) but now takes just a few mouthfuls before signalling she’s had enough. The worry with the operation is that she’ll end up permanently full and be even less inclined to take food orally.
One of the biggest problems we had with her –as you may recall – was her refusal to travel in the car. She’s mostly got over that now and will happily sit there for some time. So that’s a nice victory. She’s also much better in her pushchair. In both cases, however, she has to be constantly on the move.
I’d say that overall, things are better with Maggie. But overall with us as a family – I’m not so sure. The lack of sleep is completely depressing and demoralising and is making us both ill. I don’t know how much longer we can carry on with the way she is. It affects everything.
We’ve also come to the stage where we’re just crushed by the sadness of knowing how she should have been. I think this is largely to do with Alice being the way she is – bright and lovely and stepping out into becoming a proper little kid. We’ve both said many times how it hits us when we see Alice running off to play with some kid in the park – you know, that she should have been doing that with her sister.
As for the two of them together – they’re very sweet. Maggie idolises Alice and anything she does will make her laugh and smile. For Alice’s part, she’s obviously got a real affection for Maggie and is starting, I think, to realise that there’s something different about her.
There’s probably loads more I could write about, that I’ve either forgotten or can’t be arsed to recall. So this’ll have to do. I’ll write more later in the week, after her operation.
Sunday, 17 June 2012
If he would have let me, I would have gone with the Seinfeld 'World's Greatest Dad' T-shirt - because he most definitely is!
Wednesday, 16 May 2012
Sunday, 6 May 2012
I passed out briefly, maybe for a second. I couldn't see properly, I couldn't walk and I couldn't speak. My tongue and the right side of my mouth, along with the fingers on my right hand, were numb.
As I was lying on the floor while Shannon was dialling 999, I just wanted to crawl off to a corner somewhere or hide in a box. The paramedic arrived very quickly. By this time I was quite distressed. Still on the floor, I kept shifting away from him, not wanting to look him in the face. An odd thing: I couldn't, or wouldn't, look at anything straight on. It felt wrong to do that.
I staggered out to the paramedic's car, all the while wanting to fall. He whisked me up to A&E.
On the whole, they were great at A&E. Their main worry was that I was having some kind of stroke. So they did all the tests, such as pulling my arms, getting me to raise them, counting etc. They hooked me up to the ECG but my heart was okay. They took my blood pressure which was, perhaps not surprisingly, very high. Then they took me for a brain scan to look for obvious signs of a stroke.
In the meantime, Shannon had got one of the women from Quidenham to babysit and had joined me at the hospital. I still couldn't speak properly, was unsteady on my feet and had loads of blind spots.
During all of this time - right from the start - I guessed that I was suffering from exhaustion and/or some extreme type of migraine. I've never had a migraine before but am aware of people who have: the vision thing, feeling like you're very drunk etc. And when I spoke to the doctors and outlined the stresses of our life - two-and-a-half years of no sleep, of looking after Maggie, the constant worry about everything - it all seemed to fit.
Exhaustion. I needed to rest. I wanted to go home, to sleep.
They insisted, however, that I stay overnight. I tried to reason with them and explained that as I needed to sleep, the hospital was the worst place I could be: all that noise in the night, the early starts etc. They agreed that that's what it was like but still insisted I stay overnight in case my symptoms reoccured.
After the usual pissing about of being transferred to the ward I was eventually allowed to get my head down at 2am. I must have fallen asleep at 2.30. I was woken again at 3.30 by a doctor loudly talking to the patient next to me - a series of pointless questions that could have easily been asked in the morning. Then the bed on the other side had a new patient, his girlfriend loudly talking and carrying on. And all the while the nurses talking loudly at their booth at the end of the ward. As they always do - flatly refusing to turn down their day voices, having no thought for the sleeping patients.
I eventually started to sleep at 4.45 but was woken five minutes later by a nurse telling me that he wanted to take my blood pressure. Why? I asked. Er... he replied, because we have to. No, I said, I'm going to sleep - just let me sleep. Well, he said, we're transferring you to another ward in half an hour anyway.
At this point I got up and told him that was it, that I was going home. While I was getting dressed a senior nurse arrived and asked what I was doing. I'm here because I'm exhausted, I replied, I need to rest - that's what will make me better. If I want my symptoms to reoccur, then I'm in no better place for that to happen. I need to sleep so I'm going home.
By the time I was ready to leave the ward, there was pandemonium. Nurses and doctors everywhere, all trying to convince me to get back into bed. I hadn't intended it to be some dramatic thing, I just wanted to walk out. Really, it was as if I'd just set fire to the place. I explained again that I needed to rest, that the hospital was the worst place for me. When they realised I was serious they eventually said I could go if I discharged myself. Fine, I said. But we need to sort the paperwork first and... How long will that take? I asked. They didn't know, so again I said I was going. And so I walked out - after I insisted a nurse remove the catheter thing from my arm. Again, there was pandemonium. It was all very bizarre.
As I was walking down the corridor I was approached by three burly security guards who insisted I went back to the ward. No, I said, and carried on walking. They became, much to my amusement, very aggressive - threatening to drag me back by force. When they could see that that wasn't going to happen, they threatened me with the police who, I was told, would drag me out of my bed at home and bring me back to the hospital. I kept walking. In the meantime, the doctor they were speaking to on the walkie-talkie advised them to let me continue. They carried on being aggressive until I stopped to point out that this was a hospital not a prison - and who did they think they were? I exited with them shouting stuff behind me. Lovely people.
As I said, the people in A&E were great. I can't fault them. The people elsewhere were fucking idiots. Anyone with a cursory knowledge of my life would know that I needed, more than anything else, rest. But they weren't interested in giving me that. They weren't interested in making me feel better - they were just interested in their system. I wasn't there with a broken leg moaning that I couldn't sleep. I was there through lack of sleep. That was my condition. But they did everything they could to make me get less sleep, to make sure I felt worse, felt more stressed and more likely to collapse again.
So I came home, crawled into bed and slept. And slept most of yesterday.
I still feel rubbish - tired, shaky and dizzy. But with Shannon being great - as usual - I have been allowed to rest. She'll be furious that I've taken time out to write this. And write it badly too.
Ah well, I'm ill.
Sunday, 22 April 2012
Tonight, out of the blue, they started. We were all sitting around the table having dinner - and Maggie doing so well with her Sunday dinner baby food - when Alice spoke directly to Maggie across the table: "Talk, Maggie...Maggie, talk."
It completely shocked me, despite the wonderings. I started to cry and Paul covered for me, telling Alice that Maggie would talk soon, when she was ready, and that was the end of it. I thought maybe the food would come first, or even the sitting or walking because we're always carrying Maggie and often insisting, much to Alice's frustration and annoyance, that Alice walk. But to be sitting there, having a lovely dinner around the table, chatting loads between ourselves and for Alice to simply just want Maggie to join in. That's a reality kick killer, that one, and it's sticking with me this evening.
Wednesday, 11 April 2012
There are a number of consequences of Maggie being sick. The first, and most obvious, is that she doesn’t sleep. For the past month or so she’s been waking throughout the entire night. Usually at around 11pm for an hour or so and then from around 3am for anything up to three hours. And she’s been waking because she’s been sick. So she’s knackered and we’re knackered. As I’ve said a few times before: it’s the dead of night stuff that really drags us down. Not just the lack of sleep but the dwelling on Maggie’s condition, on our lives, reflecting on the past and worrying about the future. It’s just awful, and very depressing.
The second thing is that, yet again, Maggie is losing weight. This means, of course, that she isn’t developing anywhere near as well as she could be – both physically and mentally. As we’ve said before, and as every parent knows, these early years are the crucial years and Maggie is getting nothing from them.
Thirdly, Maggie is much less happy and responsive. Today, for instance, she’s been lethargic and upset and (for want of a better description) not all there.
Three weeks ago Shannon called ‘our’ dietician to discuss our worries about Maggie’s vomiting and her development. She didn’t get back to us – despite repeated calls. When she did call, yesterday, it was the usual array of excuses and explanations: that she “emailed the consultant who didn’t email back who then emailed the nurse who hasn’t yet replied and now the consultant’s going on holiday and I only work three days a week and I’ll be on holiday next week and...” So we have no idea when we’re going to be able to talk to these professionals. It’s just more shit and frustration and the suspicion that these people just aren’t good enough, just don’t do enough. And it’s not as if we’re constantly pestering them – we learned long ago that, if you can, it’s better to do things yourself. But on those rare occasions when we do need help or advice, they let us down. I think the thing that gets me most about this is that when they do offer the excuses, it’s not with any sense of it being unusual. You know, as if people not answering emails is par for the course – pfft, you know how it is.
On top of all this, I’m getting a bit tired of putting a brave face on everything. I said to Shannon the other night, after another vomiting episode with Maggie, that I hate my life. I shouldn’t have said it. Not because it isn’t true, but because it’s such a stupid, whiney, self-pitying thing to say. Especially to someone who has to share that same life. And I shouldn’t have said it because I suspect that Shannon hates her life too. That’s just what we need: both of us walking around muttering and moaning all the time.
The thing is, I don’t hate my life. Not really. I just hate certain aspects of it. And I think the same is true for Shannon. It’s just really hard sometimes.
That said, I reckon we don’t do enough of recognising how hard it is. When people ask us how things are, we tend to play it down, to shrug and say: “Oh, it’s ok”. Even when it isn’t. For me, it’s simply because I know that nobody likes a moaner. It’s why I don’t moan on Twitter, for instance. Instead I write blog posts like this and give people the opportunity to either click the link or avoid it. I completely understand if people do the latter: you’ve got to be in the mood to listen to someone whining on and on about his disabled kid and his shit life and the fucking NHS and...
Ah well, it makes me feel a bit better, writing this blog. Even if I’m not quite sure what I’m saying.
Just be grateful that I don’t write posts in the middle of the night while I’m up with Maggie.
Tuesday, 3 April 2012
And no, I've no idea why it was shot in portrait mode. Tch.
Sunday, 1 April 2012
I wasn't happy. Paul wasn't happy. In fact, we both cried in the stairwell, overcome by the news. I felt very sorry for myself, for us. How were we going to do this? I wanted to stay at home as long as we could afford me to - how could I handle two babies at once on my own? The sentimental walks I'd been imagining with me and my little baby swaddled to my chest - wasn't going to happen with two, was it? Ditto the breastfeeding, so I felt. Why could nothing ever be simple for us? Why did it always have to be so hard?
I cried a lot over the next few days, sad and helpless in not wanting twins. I'd been so happy in that first month of knowing I was pregnant, and now this.
But then, not long after and quite suddenly, having twins seemed absolutely perfect. We had talked about having two children - we weren't getting any younger and hey presto! here were two at once. I'd been worried that the whole experience would be been-there-done-that for Paul, who already had three children, and here you go, twins. A new one on him too. It felt unique, special, to have twins. We were delighted and we joked about telling him & her/him & him/her & her that we cried when we found out about them. Ha ha ha.
I loved being pregnant. My constant bloody worrying and whirring in my head just went. I felt calmer, happier, all zen-ish and stuff. I loved the idea of twins, though it still scared me witless sometimes. No sickness, no real swelling or discomfort, positive scan after positive scan. I delighted in people's surprise when I said I was having twins. Ha ha ha.
And then it all went wrong - what was meant to be the happiest day of my life was the absolute worst. Two little, early girls and one so desperately hurt that we might only have one left. My twins that stopped being the twins they were meant to be the day they were born. My girls who will never really be twins now, whose lives will be as different from one another's as it's probably possible to be.
Except that you should see the way that Maggie looks at Alice, how she watches her in awe constantly. How her little face lights up when Alice pays her the slightest bit of attention, puts a hat on her head, holds her hand for a minute. Maggie wouldn't be doing as well as she is if she didn't have her Alice to watch and see how it should all be done. And Alice wouldn't be the lovely, sweet, happy, self-sufficient little wonder that she is without her Maggie.
Wednesday, 28 March 2012
You know what got me in Richard Herring's piece? Where he said about having the balls to do something difficult the best you can. Because every week at Scope's/NANSA's School for Parents I see Maggie and three other little kids struggle to hold their heads steady, to reach out and grab the toy they want, to learn how to balance themselves - but they try, and try and try and try. They try so hard to do the things that were supposed to come naturally - and it's heartbreaking and heartwarming and really, really upsetting and amazing.
Tuesday, 27 March 2012
First off, here's a link to an excellent blog post that takes a look at some of the hateful fuckers who comment on the Daily Mail's website. Yes, I know it's the Daily Mail and that the people who read it are... well, what are they? They're just normal people. And that's what bothers me so much: the suspicion that quite a few normal, otherwise perfectly pleasant, people might hold similar views.
A LITTLE RESPECT
On the flipside, here's a lovely piece by the comedian Richard Herring (who's 'not yet disabled') about his experience with kids like Maggie.
DISABILITY IS AN ISSUE THAT CONFUSES AND EMBARRASSES
Sunday, 18 March 2012
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.
Tuesday, 6 March 2012
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.
Sunday, 12 February 2012
Monday, 6 February 2012
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.
Monday, 30 January 2012
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.
Wednesday, 18 January 2012
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.