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.