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.


  1. Big love to you all

  2. hugs Paul & Shannon, I can't fix anything obviously, and I think the last thing you want me to say is positive annoying things, but just want you to know I'm listening xxxx

  3. Sympathy is cold comfort I imagine. How about me and Juni cook some food and bring it round with some beer/cider. Feed, water you and bog off after. At the very least it saves having to think and act on what to cook for one night..


  4. Of course it's shit and anyone who says otherwise should get a huge punch in the gob (and I'll do it!)

    Love to you all

    Sally xxxxxx

  5. There's nothing I or anyone can say to improve the painful things for you but know that the two of you have plenty of ears and shoulders there for you
    Claire Rx

  6. Just wished I lived closer and could come and give you guys a bit of a break (especially at night).I am sure you feel better after a bit of a moan and we appreciate our lives a bit more realising what you are going through.

  7. I don't think you should give yourself a hard time about having a good old moan from time to time, it sounds really tough! Most of us moan about nothing included! xx

  8. I also have a2yr old tube fed daugher with cp. i've only got a minute but wanted to point you in the direction of the blended diet uk group on facebook.also blenderized food for tubies group and the youstartwithatube blog. these are all people who give food rather than formula to theie tube fed child (as do i). please look into this as it really is a life changing option.

  9. Actually we don't mind you having a moan at all - in fact you are bloody entitled to moan and should do so more often - it's good for you - and its good for us to listen for various reasons:

    a) it makes us realise (because we need reminding daily) how bloody lucky most of us are and how little we really have to complain about compared with families like yours

    b) it reminds us (yes we need a lot of reminding) that we don't do enough for the most vulnerable in society - which is why I get hacked off when I see taxpayers' money being wasted on vanity projects and preserving old tat for the sake of sentimentality

    c) it puts all the other whining moaning gloom-mongers into perspective because most of them have bugger all to feel miserable about and should count their blessing a bit more.

    You are human and you are suffering - and you love your children which means you suffer more for them - so you should never feel guilty about feeling the pain and the hurt.

    By the sounds of it, you are effectively going through the five stages of grief (denial, anger, bargaining, depression, and acceptance) everyday for the potential that Maggie lost - had stolen from her - possibly all five stages at once - that is exhausting and not something most of us can appreciate.

    Putting a brave face on it only gives people an excuse not to care too much and not to get involved. Tears are good and justified - only the cold blooded would say otherwise.

    You are also being let down by the system and the people who run the system should feel bloody guilty.

    Wish I knew what we could do to help - even if only in some small way that might make your life a little bit easier. Do say if there is something.