The Days Are Just Packed

We haven’t updated this blog in a while. You may have noticed. That’s because there’s been too much to write about, rather than too little. It never stops.

Over the past few weeks Maggie has been up and down. Which is fairly normal for her. She managed a couple of nights sleeping through but on the whole it’s been the usual up all night nonsense. We have, Shannon and I, been sleeping in separate rooms. One night with Maggie, one night without. It’s the only way we can get some rest.

I’ve often thought that this scenario would be just the kind of thing, if we were that way inclined, to get social workers rushing to help us. Because it’s effectively breaking our family apart. We are, I suppose, somewhat dysfunctional in that respect. And that’s not even taking into account the lack of attention that Alice receives.

But, of course, we have nothing to do with social workers. Or, rather, they have nothing to do with us. If one of us broke down or walked out, maybe then they’d come running. But as it is, we’re coping. Or muddling through (as I often say because I don’t want to bore people with the details of how shit things are).

Some weeks ago I met someone who, although knowing our situation, asked if our muddling through was any different, really, from anyone else’s muddling through. He meant, of course, his own. I briefly explained what it was like, living like this, but I could tell he wasn’t convinced. Maybe he would have been convinced had I, as well as briefly detailing the (im)practicalities of dealing with Maggie on a day-to-day basis, included how utterly sad and fearful and angry we are all of the time. I mean, all of the time. Maybe I should have got him to imagine, just for a minute, what it must be like to be the parent of a severely disabled child and how devastating it is to know that she will always have a very tough and sad life.

I don’t know. At the time, his comment didn’t bother me too much. But it’s been festering. It’s not that I think I need to prove to him – or anyone else – how hard our lives are but more that it’s actually got me thinking about just that: how hard our lives are. And at the same time, it’s got me thinking about how well we cope. Bully for us.

So yes, we’re muddling through.

Maggie is still underweight. She still throws up a lot. She still sleeps very badly and doesn’t sleep enough. She is a constant source of worry to us. Coming up sometime in the next few weeks: an operation where she will have a new peg fitted that will go directly into her bowels. I may have mentioned this before. She’ll need to be hooked up to a feeding machine for 18 hours a day. But because it’ll hopefully prevent her from vomiting, she can be fed overnight.

There’s muddling through for you: having a tube running from a machine pumping milk directly into your bowels for eighteen hours a day because you’re so underweight and frail and because you’re unable to take food even through your stomach, let alone your mouth.

While I remember: I deleted a comment on an earlier post by someone (anonymous, of course) who asked why we keep going back to the NHS if we think it’s so rubbish. They then suggested we go private.

Here’s my first answer: fuck you.

Here’s my second answer: Why should we go private? We pay for the NHS. As we all do. Is it really so unreasonable of us to expect a good level of care for our daughter? Is it really so unreasonable of us to be angry and saddened when we don’t get a good level of care?

Here’s my third answer: we couldn’t even begin to think about going private. One of the things about having a severely disabled child (I’m amazed that I even have to state this) is that it affects our income on all sorts of levels. Stacie Lewis has spoken about the extra costs of caring for a disabled child on one of her recent blog posts so I won’t go into that here. But I will point out how it adversely affects our ability to earn. That’s an understatement. This will be the case for a long time to come.

So yes, go private. Right. Fucking idiot.

In Alice news: it’s all good. So good, in fact, that it’s difficult sometimes to know what to say about her beyond the fact that she’s an absolute delight and very happy with it. She’s not walking properly yet, which is a little disappointing, but we’re not worried. She can do it, we’re sure: she just doesn’t seem to want to.

She has a big mouthful of teeth. And she says this a lot: hellooooo! And bye byeee! She’s very, very cute. And very beautiful.

In positive Maggie news: well, you saw the video. She seems to be brighter and more alert as each day passes. She reaches out quite well, in her haphazard way, and sometimes forgets to unclench her fist. But she reaches out and that’s a good thing. She seems, on the whole, to be happier overall. That is, when she’s not too tired or suffering with wind or reflux or vomiting. She smiles a lot and is generally more content.

That smile of hers: it’s sometimes all we need. She’s very beautiful too. And I’m still knocked out by those amazing eyelashes.

We need to take her to the dentist. As anyone who has seen her knows, she has a very pronounced upper gum. And quite a weak lower jaw (which, given that she has never sucked, swallowed or chewed, isn’t that surprising). Her teeth are starting to come through but it looks as though her top two teeth are pushing – forward, rather than down – through her gums. It’s quite odd.

She still doesn’t tolerate the car seat or the pushchair and this is made all the more intolerable, for us, because she screams and shouts a lot louder than she previously did. Real full-throated stuff. Which, in a way, is reassuring.

She babbles on occasion. Especially when Shannon holds her up so she can talk to herself through the bathroom mirror. She loves doing that.

She hates lying down on her front and, I have to confess, we really should make her do this more often. But anything for a quiet life. Sort of.

She’s a full-time job, our Maggie. More soon.