I keep watching this because it cheers me up. Alice dancing on stage at Chapelfield Park last Sunday. That's her with the blue long-sleeve top, who cries at the end when she notices me filming her:
Wednesday, 16 May 2012
Sunday, 6 May 2012
Me In Hospital
On Friday evening I collapsed and was rushed to hospital.
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.
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
"Talk, Maggie...Maggie, talk."
As Alice gets older, I've been wondering when the questions about Maggie would start, when she would just stop thinking it normal that Maggie doesn't sit up like her, walk like her, eat like her, talk like her. Or like anyone else, for that matter.
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.
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
Hard Times
Things have been quite tough here. Maggie has been sick almost constantly. Shannon took her to the hospital the other day and they reckoned it’s probably her reflux and the associated digestive nonsense that comes with her condition. So we’ve increased her medication and slowed down, and decreased, her milk intake. I say ‘milk’ but I of course mean the synthetic gloop that’s supposed to help her put on weight.
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.
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
Swing Girls
Here's a nice video that Shannon took of the girls on the swings last week. Although Maggie's unable to support herself, look how nicely she's lifting her head and looking up. And look how happy she is.
And no, I've no idea why it was shot in portrait mode. Tch.
And no, I've no idea why it was shot in portrait mode. Tch.
Sunday, 1 April 2012
April Fool's
It was three years ago today we found out that I was pregnant with twins. Yes, on April Fool's Day. Bleeding early in the pregnancy - just eight weeks along - and I was referred up to the hospital, a bit nervous, a bit alarmed. The doctor didn't help with his frown of concentration, when he peformed a vaginal ultrasound after the usual one. I was starting to get properly worried when he told us that we were having twins.
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.
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
They Try and Try and Try
Shannon commented on the previous blog post. Rather than just let it sit there, I thought I'd bring it up here:
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.
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
Two Sides
Two sides of humanity, that is.
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
.
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 Shannon!
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
Thank You Shannon
I slipped on the ice a few weeks ago and severely bruised my shoulder by landing on – slamming into – the tow bar on the back of our car. As a result of that I’ve been unable to lift my arm. And as a result of that, I’ve been unable to lift Maggie. As you know, Maggie requires a lot of lifting.
Over this period Shannon has been an absolute angel. She’s been looking after Maggie every single night – putting her to bed and getting up with her in the early hours. Unfortunately, she’s been waking a lot through the night recently, anything up to three hours at a time. It’s been a nightmare.
As well as that, Shannon took time off work to help me at home. Actually, no – she was working from home. So she was at least in the other room if I needed a hand carrying Maggie and putting her to bed.
And as if all this wasn’t bad enough, Shannon also became ill last week. As did Alice and Maggie. And then, to a lesser extent, me. This past week then has been particularly bad. Maggie with her chest infection and Alice in an absolute state with some kind of viral infection, unable to sleep and howling through the night.
As I said earlier, Shannon has been amazing throughout all of this. I hate to say it – and I’m only saying it because it’s true – but if the situation had been reversed, I wouldn’t have been anywhere near as good. After the first day I would have probably shouted: “It’s only your fucking arm!”
So really, the purpose of this post is for me to say a big public thank you to Shannon for being so wonderfully selfless - and for being so caring and capable.
Over this period Shannon has been an absolute angel. She’s been looking after Maggie every single night – putting her to bed and getting up with her in the early hours. Unfortunately, she’s been waking a lot through the night recently, anything up to three hours at a time. It’s been a nightmare.
As well as that, Shannon took time off work to help me at home. Actually, no – she was working from home. So she was at least in the other room if I needed a hand carrying Maggie and putting her to bed.
And as if all this wasn’t bad enough, Shannon also became ill last week. As did Alice and Maggie. And then, to a lesser extent, me. This past week then has been particularly bad. Maggie with her chest infection and Alice in an absolute state with some kind of viral infection, unable to sleep and howling through the night.
As I said earlier, Shannon has been amazing throughout all of this. I hate to say it – and I’m only saying it because it’s true – but if the situation had been reversed, I wouldn’t have been anywhere near as good. After the first day I would have probably shouted: “It’s only your fucking arm!”
So really, the purpose of this post is for me to say a big public thank you to Shannon for being so wonderfully selfless - and for being so caring and capable.
And for just being so wonderful. I'm very lucky to have her. So are the girls.
(Oh, and one thing all of this has brought home to us - as if we didn't know it before - is how important it is that we stay fit and healthy for Maggie's sake. Because really, we're on our own here.)
Sunday, 12 February 2012
Monday, 6 February 2012
Maggie's bed (Shannon)
I put Maggie down to sleep in her cot for the last time tonight - her special bed is being delivered tomorrow. And I'm really, really dreading it. There were more than a few tears tonight getting Maggie ready for bed, for this last night.
I was actually okay with the special bed until the message on our phone last week from the team delivering it - Hospital Services. My little reality-block bubble, which really is quite strong most of the time, had been seeing Maggie's bed as 'special' in vague, nice, cute terms. Just for Maggie, special. But here was the truth - it's a hospital bed. For my little girl's room.
A big, single, electric bed that stands at our waist height for easy access, with blue, padded sections we open for putting Maggie in and out, and then close when she's sleeping. Her room won't have her little, 'normal' cot in the corner any more. It will be dominated by her big hospital bed. And my reality-block bubble isn't strong enough to make out that this is okay, that this is anything but heartbreaking and wrong and a daily reminder that reality isn't what I keep pretending it is.
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
Welfare Reform and Disability Discourse
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
Progressions and Setbacks
It’s been a while since I wrote anything about Maggie and how she’s getting on.
Over the past few months she’s made progress in some areas and had setbacks in others. Which is to be expected, I suppose. Overall, she’s a lot happier and more contented. For the first two years of her life she seemed to always be unhappy. This, we suspect, was largely due to her terrible reflux and digestive issues. She still suffers with all of that but to a lesser degree.
Her general happiness seems to have also been affected by her growing awareness and understanding. As she now responds better to various stimuli, she’s much easier to placate. Everyone who sees her is impressed by how well she communicates and how much she understands. She’s often an absolute pleasure to be with. The only drawback is that she requires – demands – constant attention. Although she is happy for short periods stuck in front of the TV watching Waybuloo. And only Waybuloo.
Her sleeping has been erratic. For a short while she was sleeping through the night. But for the past five months she’s been waking up in the early hours, often for up to two hours, This means that Shannon and I have to take turns every night. Being awake with her in the early hours is still an awful, crushing experience. As I’ve said before, it’s during those times – when we’re tired, when there are no other distractions but Maggie – that it all comes rushing in. The sadness, the fear, the anger, the realisation that she will always be like this. It’s at those times that I often consider just giving up.
She’s made some good progress with eating. We took the rather bold step of deciding to just shove food into her mouth. I felt that the worst that could happen was that she would choke to death or fill her lungs up with food. But as it happened, she coped remarkably well. Her speech therapist assessed her while she was eating and concluded that her swallowing was sound. So there was no need for the surgical assessment that had been arranged. In terms of the actual eating, it basically consists of us pouring diluted custard into her mouth from a special cup. How well that goes depends on her mood and levels of hunger. But on the whole, it’s been a success. We never thought she’d be able to do anything like that. It gives us a little hope for her future.
Her weight continues to be an issue. A few months ago we were very pleased that she’d put weight on. However, she seems to be struggling again. There are moments when we’re changing her that we’re horrified and saddened by how thin she is; her ribs showing, her skinny rope-like legs, her scrawny arms. I think it’s time we looked into, again, her food intake. I suspect that part of the problem is that she was destined, like her sister, to be a big kid. She’s getting very tall (or, rather, long) but not very wide. Unlike a lot of kids with similar conditions, she’s very active. So she burns a lot of calories. Of course, her activeness is often due to spastic movements. Or maybe they’re not. It’s difficult to tell.
She’s been getting a hell of a lot from the various places she visits every week: nursery, school for parents (at Scope) and the Hamlet Centre. Those take up three mornings of her week. She’s very responsive while she’s there and, again, the people who see her are always impressed by her levels of understanding. Above all that is that she obviously loves going there.
I think that’s one of the things that we need to be more aware of – that everything she does shouldn’t always be centred around issues of care or development. It’s equally important that she’s just happy, that she has a nice time, that she’s treated – as far as possible – like any other little girl.
She loves – absolutely adores – rough play. Being swung around or thrown up in the air elicits squeals of delight. It’s just such a lovely thing to see and hear.
She’s enjoying, and sitting better, in her chairs. Although she still screams hysterically whenever we take her out in the car, however short the journey. So she can be taken out in her special pushchair and we don’t always have to assume that it’ll be a nightmare. Sometimes it is. The drawback to this is that Alice then has to walk. Unless we’re both taking the girls out. A simple trip to the shops is often fraught with all kinds of logistical problems. It’d be funny if it wasn’t so frustrating and difficult.
And there: Alice. She’s just something else entirely. Still the happiest girl on earth and so bright and clever and funny and lovely. No trouble at all. She deserves much more attention from us than she currently gets.
Overall, I’d say that things are a little better. It’s hard work still – very hard work – but routines and little progressions make it seem easier. Sometimes. At other times, it’s all too much. We still have moments when we just can’t believe that we have a severely disabled daughter. We look at Alice and can see how Maggie should have been. We still feel robbed and sad and lost. I imagine those feelings will never disappear – it’s just how well we cope with them.
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.
Wednesday, 4 January 2012
Monday, 19 December 2011
How EACH Makes a Difference
I've written a guest post for Tom Albrighton's blog. It's about EACH (East Anglia's Children's Hospices) and about us. I'd be grateful if you could read and maybe, well, you know...
Thanks.
Please Help EACH This Christmas
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Thanks.
Please Help EACH This Christmas
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Monday, 12 December 2011
My Problem With The Paralympics
I can’t wait for Maggie to reach the age where she’s taking part in the Paralympics, shooting baskets or swimming or hurtling down the track on some super bouncy legs or whizzing round the volleyball court in her cool, streamlined wheelchair while the crowd cheers her on not only for her athletic prowess but for the glowing, inspirational face of positivity she wears every single day of her life because, hey, being disabled is no barrier, you’ve just got to have a dream and believe in yourself and be one hundred and seventy-nine per cent sure that you’re no different, not really, from everyone else out there because, at the end of the day, it’s about fighting and winning and loving life and taking on challenges and...
I have a problem with the Paralympics. Or, rather, a problem with all the crap we have to hear about it every day. I’m sick and tired of seeing muscular, fit young men and women with missing legs telling us that disability is just, y’know, one of those things they have to deal with. As they zoom about in their funky wheelchairs, oozing BBC-approved positivity.
I have a problem with the Paralympics because it seems to me to paint quite a false picture of what disability – real disability – is like for so many people. Disability, for them, isn’t about positivity and treating life as some kind of Hollywood script where a belief in one’s self is all that’s needed to win the day. Disability for them is a life of sadness and pain and loneliness and poverty. And given what’s happening with the cuts, it’s about to get even worse.
I have a problem with the way the Paralympics seems to say to those disabled people who aren’t athletes – who have absolutely no hope or even desire to be athletes – that they’re somehow letting the side down. I know Maggie will never be able to do the things I described above but it should be enough that her achievements will be small. To reference Frankie Boyle’s joke about Lewis Hamilton’s brother: if she ever managed to drink from a cup, that’d be something truly amazing. But will she have to feel guilty and sad about the fact that that will be a relatively small achievement compared to, say, running the 1oo metres?
One of my biggest problems with the Paralympics is that it claims disability, and notions of disability, for itself. By which I mean: there’s a world of difference between someone who has lost their leg below the knee and someone who is blind and deaf with quadriplegic cerebral palsy. Yes, the Paralympics raises awareness of something called disability; but it’s not the same disability that many people have to live, and suffer, with.
I think, at heart, it’s about me being suspicious of the value of the Paralympics. Because when they talk about raising awareness of disability and how it gets disabled people in from the shadows, I think there’s a danger that severely disabled people – the ones you never see, the ones who really suffer – are going to be left in an even darker place. Because not only will they not fit in with ‘normal’ society and people, they won’t even fit in with these healthy, positive people who are rapidly becoming the new and public face of disability.
I don’t know if I’m right about this, by the way. I could be totally wrong. Maybe those media-friendly disabled people with muscular torsos and glowing, happy faces are right: maybe they are going some way towards creating a society where disabled people will fit in as much as everyone else. Maybe all disabled people will be welcomed in with open arms – even those who don’t quite fit the picture.
As I say, it’s the picture of disability the Paralympics paints that bothers me. I wouldn’t mind so much if this was balanced a bit in the media with portrayals of how awful and terrifying and lonely real disability can be. I worry that we’re collectively buying into an accepted definition of disability that essentially states that it’s something that’s not that far removed from being able-bodied. Which could lead to a general feeling of ‘what’s the big deal about being disabled?’ And at a time when disabled people are also being attacked in the media for being benefit scroungers or malingerers, I think we’re in danger of creating just another false narrative about disability, however well-intentioned it may be.
By the way, I’d be grateful for your thoughts on this because, as you've probably noticed, I’m struggling a bit with what to think - and how to express it.
Friday, 18 November 2011
Alice!
This week it's just me and Alice at home. Shannon is in Texas visiting her new niece and nephew, Maggie is at Quidenham.
I can't tell you just how lovely it is being with Alice like this. She's the easiest, sweetest and happiest little kid. We're just hanging out together and having a great time. If it were just her (and this is in no way a dig at Maggie, who I miss terribly), I'd beg to be a full-time househusband.
I can't tell you just how lovely it is being with Alice like this. She's the easiest, sweetest and happiest little kid. We're just hanging out together and having a great time. If it were just her (and this is in no way a dig at Maggie, who I miss terribly), I'd beg to be a full-time househusband.
Sunday, 16 October 2011
Down Wymondham Way
We made the most of Maggie being in Quidenham this week by taking the train to Wymondham. We had a very nice time.
Sunday, 9 October 2011
Happy 2nd Birthday Maggie and Alice!
Maggie and Alice are two-years-old today. Amazing. I know everyone says it about their kids but really: where does the time go?
I was going to write about this past year but, truthfully, I haven't had the time. So instead I'm going to repeat part of what I wrote last year (below). It does us good, occasionally, to remember the terrible time we went through and how grateful we are that Maggie is with us.
I will say though that things have improved quite a bit recently. As mentioned in the last few posts, Maggie has been a lot happier and more settled. She's not been throwing up, she's been sleeping better and she's starting to put on weight. And she's still doing well with eating through her mouth (despite the cold she currently has).
As for Alice: she's just the most amazing little kid. Bright, funny, clever and as happy as the day is long. She's an absolute joy to be with and doesn't give us a single moment's trouble.
The nice thing about this year is that the girls' brothers and sister (Tom, Louie and Isaac) are here to celebrate their birthday with them. I'm so very glad about that.
As with last year, I've had some badges made which we'll be passing out to friends and family (if they want them, of course). Maybe this is a thing I could do every year. As you can see, they've really grown:
Oh, and despite me making the badges and writing this post, I have to say that all of the birthday preparations (including present selection and buying) have been done by Shannon. I had very little to do with any of it. And I just want to say how proud I am of her - not just for sorting their birthday but for being an utterly wonderful mother. The girls are very lucky to have her. So am I.
From October 2010:
The girls will be a year old this Saturday. A year. We can't work out whether it seems longer than that or shorter than that. It depends what mood we're in.
So it's their first birthday and, of course, this in itself is a big deal. But the thing about Maggie celebrating her birthday is that she very nearly wasn't here at all. If you recall, in those first couple of days we were told that she would die. And then when she didn't die, we were told that her quality of life would be so appalling that perhaps it would be better if she didn't make it.
So Maggie celebrating her birthday is a very big deal indeed. Right?
Remember also that up until that last hour of labour (when Maggie stopped breathing, starving herself of oxygen to the brain) everything was absolutely fine. Shannon had a very good pregnancy, the girls (we didn't know they were girls then) were very healthy. It was just that moment in labour that cruelly robbed Maggie of a good and proper life.
Of course, I say 'moment in labour' as if it were just one of those things. It wasn't just one of those things. As you may know, women carrying twins are supposed to be in the 'high risk' category. Which means they should be monitored and cared for more closely. That didn't happen with us. What we got was a midwife who, while pleasant enough, clearly wasn't that bright or competent. On top of that, she kept nipping out to see to her 'other woman'. For a lot of the time, when Shannon was hooked up to the monitors, we were alone. Initially, this didn't concern us too much because the labour seemed to be going fine. When it started to look as though all wasn't well, however, this midwife proved to be next to useless. There just wasn't enough urgency or focus. At one point she even joked to Shannon about not being able to find Maggie's head when she clumsily shoved her hand up in order to attach a probe.
The details of all of this are a bit painful to recall, to be honest. Doctors came in, they pissed about a bit more. Scanning machines were casually wheeled in, they pissed about a bit more. They tried to find Maggie's heartbeat and when it plainly wasn't there, they finally banged the emergency button.
As I stood there like an idiot, a team of doctors rushed Shannon out.
If there's one thing guaranteed to make me cry, it's recalling Shannon's bewildered, hopeful face as she was wheeled out, as she mouthed to me that everything would be okay.
Within minutes I knew that everything wasn't okay. I was left in the labour room alone for a couple of hours. I called Tom who came straight up and we waited together for news.
At one point, our midwife rushed in with a bundle: Alice. She passed me my daughter as if she were hoping that I wouldn't ask about the other one. But I did ask. Her face fell, words were muttered and pretty soon we were alone again.
Shannon had an emergency caesarean. She was knocked out cold and basically ripped open. They pulled Maggie out and desperately tried to revive her. They somehow brought her back to life and she was rushed off for emergency treatment.
All I wanted was to see Shannon. I'd been told by this point how bad things were and I was working out how best to let her know.
I've always had this attitude - and I always used to say it to Shannon - that whatever happens in life, it'll be all right in the end. You know: what's the worst that could happen? Shannon repeated this to me, obviously hoping I'd tell her that yes, everything would be all right. But I couldn't do it. I tried to tell her, gently, to prepare for things not being all right. I mean, I was half expecting us to be told that Maggie was dead.
For the next few hours, Shannon kept telling me not to worry, that everything would be all right. She kept saying things like: "Come on, you always say it'll be all right - and it will be. I know it will." That, too, when I think back to it, breaks my heart. Shannon trying to be hopeful and optimistic and repeating back to me all the casual, stupid things I say - like how very bad things only seem to happen to other people.
A few hours later we were told that Maggie's condition meant she would be unlikely to make it through the night.
We fell apart.
We were told that Alice was fine, but with a few problems, and that we could go and see her. We were also told we could go and see Maggie who was in the intensive care unit hooked up to every machine going. We decided, after much agonising, that we would go and see Alice and not see Maggie. Bear in mind we were told that she only had a few hours to live. We thought perhaps it'd be best not to see her in the state she was in - so we wouldn't always have terrible memories of her.
So we went to see Alice and it was devastatingly sad. As we left her, we passed the room where Maggie was. We could see where she was in the far corner of the room. At that moment we knew we had to see her.
So we saw Maggie and it was as heartbreaking and as soul destroying as you can imagine it was.
That night we cried so much that I couldn't believe it was possible to cry that much. We just didn't know what to do. We talked about how you go about arranging a funeral for a baby. And then we realised that our girls didn't even have names.
We'd always liked the name Alice. So we decided that, as she was going to live, she could have that. We struggled with a name for Maggie because what we were doing was naming a dead baby.
The next morning we were visited by Maggie's consultant who said that, against expectations, she'd made it through the night. But now we were faced with the prospect of her having a quality of life that would be so low that she'd be better off dead. Both Shannon and I agreed that we would go for that option, if that option presented itself, to relieve her suffering.
Things start to get a bit blurry now.
The following day, I think, we were told that again, defying expectations, Maggie was looking a little better. It turned out she was a fighter.
It was around this point that we gave her the name Maggie. It was on our list, that name, but right at the bottom. We'd already rejected it. But for some reason it seemed to fit. Maggie seemed like a name you would give to a fighter. So of course there's Thatcher; but it wasn't just that. There was Maggie Bell, the gravelly-voiced, hard-living Scottish singer who my dad loved when I was a kid. And, of course, there was Rod Stewart's Maggie May.
It seemed to fit perfectly. And it seemed, in a daft way, that if we gave her the name Maggie she might somehow live up to it.
The days that followed were just really bleak and upsetting and nightmarish - in the sense that it all seemed utterly unreal. We cried all the time. I mean, all the time. We saw Alice a lot, of course, and we also saw Maggie who was still fighting. But for a lot of the time we were alone in our shabby hospital room.
I say 'our' hospital room. I shouldn't have been there. But they let me stay - as a favour.
So the days turned to a week and...
You know, in all the time we were there nobody from the hospital - and I mean nobody - took a single moment to say to Shannon: "Are you okay?" Nobody there thought to themselves to just ask this frightened, devastated new mum how she was. Nobody at all. The midwife who was there during her labour - we never saw her again. Not a peep. Nobody offered counselling or advice or anything at all. Like I say, not even a "Are you okay?"
Of course, with it being the girls' birthday we're going to be looking back to that time. And thinking about this past year. We've documented a lot of it on this blog. But even there I think we've failed to get across just how terrifying and lonely and sad it's been. And still is.
Tuesday, 4 October 2011
Happy birthday (yesterday), Paul!
Oh dear, in the wish of making sure Paul had a lovely day for his birthday yesterday and last night (we actually went out - together!) I ran out of time to wish him a very happy birthday on here, the blog that would not be without him. Happy birthday, Paul!
Make sure and drop a line on here to wish him a happy birthday and a happy year, even if you're later than me!
Make sure and drop a line on here to wish him a happy birthday and a happy year, even if you're later than me!
Tuesday, 27 September 2011
The Happy Eater
Yesterday I fed Maggie a full jar of porridge. Followed by half a jar of egg custard. It doesn’t sound much but, for her, it’s an incredible amount.
She managed this partly because I decided not to plug her in for her lunch time feed. So she was hungry – something that, due to her strict feeding regime, she’s never really been.
As I said in the previous post, this is still early days. As things stand, the food she eats through her mouth won’t provide her with the amount of calories she desperately needs. So we can’t stop the tube-feeding just yet, if ever. She also needs water and liquids, something she’s not yet capable of swallowing successfully.
The thing is, the stupid feeding machine and the constant plugging in to her stomach is the only artificial intervention she has. She doesn’t need to be attached to monitors or oxygen or anything like that. So her being liberated from it will be a very big deal indeed.
The food through her mouth also seems to be making her happier. Her reflux seems to be significantly reduced so she’s a lot more comfortable. Which means she’s sleeping better at night.
It’s one of the things that’s always bothered us: that the first two years of her life were ruined by her digestive problems: the constant vomiting, the reflux, the all-round misery of being in pain and the lack of sleep that came out of that*. It severely impeded not only her general happiness and well-being, but also her crucial developments. We’ll never get those all-important first years back.
But still, we’re over the moon that things are starting to improve.
* Two colons within a single sentence. Awesome, as they say.
She managed this partly because I decided not to plug her in for her lunch time feed. So she was hungry – something that, due to her strict feeding regime, she’s never really been.
As I said in the previous post, this is still early days. As things stand, the food she eats through her mouth won’t provide her with the amount of calories she desperately needs. So we can’t stop the tube-feeding just yet, if ever. She also needs water and liquids, something she’s not yet capable of swallowing successfully.
The thing is, the stupid feeding machine and the constant plugging in to her stomach is the only artificial intervention she has. She doesn’t need to be attached to monitors or oxygen or anything like that. So her being liberated from it will be a very big deal indeed.
The food through her mouth also seems to be making her happier. Her reflux seems to be significantly reduced so she’s a lot more comfortable. Which means she’s sleeping better at night.
It’s one of the things that’s always bothered us: that the first two years of her life were ruined by her digestive problems: the constant vomiting, the reflux, the all-round misery of being in pain and the lack of sleep that came out of that*. It severely impeded not only her general happiness and well-being, but also her crucial developments. We’ll never get those all-important first years back.
But still, we’re over the moon that things are starting to improve.
* Two colons within a single sentence. Awesome, as they say.
Tuesday, 20 September 2011
Happy Birthday Shannon!
Big and happy birthday wishes to Shannon (pictured, above) who is, by some considerable distance, the best mum in the known universe. And beyond.
Not that I'd want to define her as just a mum, of course. She's got loads of great things going for her. Loads!
Monday, 12 September 2011
A Breakthrough!
Just a short post:
Some weeks ago I decided to take the bold step of forcing Maggie to eat through her mouth. As you'll know, she's never eaten through her mouth and has always been tube fed. The thought of her doing that for the rest of her life is one of the main things that saddens me about her condition.
Feeding Maggie through her mouth is a very perilous task, not least because she vomits so often and is so orally averse. Over the past eighteen months we've got used to the fact that she was essentially nil by mouth.
But as I say, a few weeks ago I decided to basically start shoving food in. It was, taking into account everything that's gone before, a huge success. Yes, she threw up and gagged occasionally but on the whole the food went down okay. It seemed to me that one of the main problems was that she was psychologically opposed to it all. For instance, every time I approached her mouth with a finger full of food she grimaced and then pulled all sorts of faces while trying to force the food down. But I was hoping it was just a matter of perseverance - something she'd get used to.
Anyway, she's been very ill these past couple of weeks with a chest and throat infection. So the feeding was put on hold. This afternoon, however, I decided to give it another go.
This time, I have to say, was simply amazing. Not only did the food go down nicely, but she also welcomed it - even going so far as to smile as it approached her mouth. I can't tell you how happy this has made me. I'm determined that she's going to get on top of this.
Of course, it's early days - small steps and all that bollocks. It may be the case that she's not so good next time or that she goes off it completely. After all, one of the most consistent things about Maggie is her inconsistency.
But still, this is - for her and for us - a momentous breakthrough.
Some weeks ago I decided to take the bold step of forcing Maggie to eat through her mouth. As you'll know, she's never eaten through her mouth and has always been tube fed. The thought of her doing that for the rest of her life is one of the main things that saddens me about her condition.
Feeding Maggie through her mouth is a very perilous task, not least because she vomits so often and is so orally averse. Over the past eighteen months we've got used to the fact that she was essentially nil by mouth.
But as I say, a few weeks ago I decided to basically start shoving food in. It was, taking into account everything that's gone before, a huge success. Yes, she threw up and gagged occasionally but on the whole the food went down okay. It seemed to me that one of the main problems was that she was psychologically opposed to it all. For instance, every time I approached her mouth with a finger full of food she grimaced and then pulled all sorts of faces while trying to force the food down. But I was hoping it was just a matter of perseverance - something she'd get used to.
Anyway, she's been very ill these past couple of weeks with a chest and throat infection. So the feeding was put on hold. This afternoon, however, I decided to give it another go.
This time, I have to say, was simply amazing. Not only did the food go down nicely, but she also welcomed it - even going so far as to smile as it approached her mouth. I can't tell you how happy this has made me. I'm determined that she's going to get on top of this.
Of course, it's early days - small steps and all that bollocks. It may be the case that she's not so good next time or that she goes off it completely. After all, one of the most consistent things about Maggie is her inconsistency.
But still, this is - for her and for us - a momentous breakthrough.
Sunday, 11 September 2011
New Post
It's been a while. Too long. I was going to write a new post tonight but I'm too tired. In the meantime, here's a picture of Maggie and Alice:
Friday, 19 August 2011
Mission Accomplished!
The results of the Night for NANSA are in!
So far, on the Justgiving page: £695
From the actual night: £348
Grand total: £1043!
The biggest thanks, however, should go to Tim Andrews and Imogen Thorndyke who set all of it up and made sure the night went so swimmingly. Also to NANSA who had their people walking around shaking their tins. Needless to say, they're over the moon.
It was, genuinely, a really great night. To be honest, I was dreading it a bit. Well, y'know - performance poets, comedians and birds with acoustic guitars. Brrr. But I was very pleasantly surprised at how good the acts all were. Every single one of them.
(Particular mention should go to Imogen's sister Georgi Thorndyke who made her first public performance, at the age of just 14. And to Andy Palmer, who was both funny and charming and who, apparently, went down particularly well with quite a few of the women. Oh, and to my mate Andy Larkin who did a great job of compering the event and getting people to dig deep.)
By the way, that £343 raised on the night - from ticket sales, tin rattling and raffle tickets - is an incredible amount, especially given that it was a relatively small event. It just demonstrates how generous everybody was.
If you didn't make it on the night - or haven't yet donated - you still can by clicking here. I shouldn't have to say it again but I will: NANSA makes a huge difference to some of the most vulnerable people's lives. And that huge difference is all down to people like you making just a small donation.
Thank you.
.
From the actual night: £348
Grand total: £1043!
So a huge thank you to everyone who donated, to everyone who turned up on the night, to all of the excellent performers who gave their time for free, and to The Birdcage for letting us use their venue and effectively hijack their Wednesday night.
The biggest thanks, however, should go to Tim Andrews and Imogen Thorndyke who set all of it up and made sure the night went so swimmingly. Also to NANSA who had their people walking around shaking their tins. Needless to say, they're over the moon.
It was, genuinely, a really great night. To be honest, I was dreading it a bit. Well, y'know - performance poets, comedians and birds with acoustic guitars. Brrr. But I was very pleasantly surprised at how good the acts all were. Every single one of them.
(Particular mention should go to Imogen's sister Georgi Thorndyke who made her first public performance, at the age of just 14. And to Andy Palmer, who was both funny and charming and who, apparently, went down particularly well with quite a few of the women. Oh, and to my mate Andy Larkin who did a great job of compering the event and getting people to dig deep.)
By the way, that £343 raised on the night - from ticket sales, tin rattling and raffle tickets - is an incredible amount, especially given that it was a relatively small event. It just demonstrates how generous everybody was.
If you didn't make it on the night - or haven't yet donated - you still can by clicking here. I shouldn't have to say it again but I will: NANSA makes a huge difference to some of the most vulnerable people's lives. And that huge difference is all down to people like you making just a small donation.
Thank you.
.
Thursday, 11 August 2011
Update on the Night for NANSA
**UPDATE**
Please see below for the list of performers and start time.
And don't forget that even if you're not coming along to the event, you can still donate to help a fantastic organisation. Thank you. NANSA Justgiving.
Next Wednesday evening (August 17th) we'll be hosting a Night for NANSA at The Birdcage pub in Norwich. There are a number of cracking acts performing - including musicians and comedians - with all proceeds going to NANSA. It's not a ticketed event but costs just £3 on the door.
The evening will also be compered by my friend Andy Larkin. (If you know Andy, you'll know that that's reason enough to come along).
If you don't know what NANSA is, I'll repeat this from my previous post: NANSA (Norfolk & Norwich Scope Association) is essentially the branch of Scope in Norwich. They do fabulous work for people with all kinds of disabilities. Maggie is currently attending their School For Parents programme and is getting a hell of a lot from it - her life, and the lives of many people with disabilities, would be so much the poorer without their help.
I know there are a lot of charity requests these days but I can't stress enough what an utterly fabulous organisation NANSA is - it helps many of the most vulnerable and neglected people in the city and beyond.
Click here for more information about NANSA.
As well as the ticket proceeds, we'll also be passing collection buckets around on the night. So make sure you bring plenty of cash!
In the meantime - or if you can't make it - we'd be very grateful if you could donate via the Justgiving page at:
Thank you for your support. We hope to see you next Wednesday evening at The Birdcage in Norwich.
A NIGHT FOR NANSA:
WEDNESDAY 17 AUGUST
THE BIRDCAGE, NORWICH.
Performers:
Georgi Thorndyke - Singer
Russell Turner - Poet
Andy Bennett - Comedian
John Simpson - Comedian/Poet
Andy Palmer - Comedian
Entry at 7.30pm for an 8.15/8.30pm start.
WEDNESDAY 17 AUGUST
THE BIRDCAGE, NORWICH.
Performers:
Georgi Thorndyke - Singer
Russell Turner - Poet
Andy Bennett - Comedian
John Simpson - Comedian/Poet
Andy Palmer - Comedian
Entry at 7.30pm for an 8.15/8.30pm start.
We'll also be tweeting about the event on Twitter (from @paulsaxton and @Timster_37).
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