Sunday, 13 March 2011

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.


  1. Just to say, can you get referred to WCS about a buggy? My daughter Emma (18mths Athetoid CP) couldn't tolerate a regular pushchair, basically she was spasaming with the effort of trying to remain still in it, she now has a specialist one and it has changed our lives really. Best wishes Maggie for your upcoming operation.

  2. I can't believe that anyone could think that your 'muddling through' is not that different to their muddling through (unless they too look after a severely disabled child).

    Without wishing to engage in hyperbole, I would hazard a guess that it's about as different as a Tsunami is from a leaking roof.

    For most of us, muddling through involves nothing more than dealing with a few trivial, inconsequential, inconveniences each week (about which we tend to make too much fuss and to which the best response is "get a grip!").

    The tragedy for Maggie was so huge and permanently life changing and the consequences for your family are so continuously heartbreaking and exhausting that it is hard to know how you begin to cope - let alone continue with so little support and so many ignorant comments.

    Your blogs are never boring - even when you do remind us how much you have to deal with - they help us keep a sense of perspective and empathy in our lives. That kettle that broke this morning after just six months - a nuisance but really nothing to blog or twitter about (though I won't be buying a De'Longhi again).

    I am glad Alice is doing so well (and that you are not worrying about her walking - she'll get there in her own good time). I hope Maggie's op helps her put on weight - and that the dentists can sort out her teeth without too much difficulty. The video was lovely - and poignant.

    I don't know whether Maggie can use a normal dummy but it might be possible to get special safety ones that encourages her to chew etc, and so help her teeth and jaws develop. It might also help comfort her in the car - but there again it might not and I am just speculating wildly because I would like to help but doubt I can do much that is practical. So I'll shut up for now.

    As always, thinking of you all.


  3. Heart rending and honest as always.

    How do we help Paul, is there a way?

  4. I don't understand how someone could POSSIBLY think that their muddling through is like your muddling through - thats just mentalness, and unfortunately there is always mentalness in the world. Their lack of empathy must really impede them in everyday life, so you can rest assured that they won't have a fulfilled life, if they cannot understand something as obvious as that.

    I hope Maggie's new peg helps, and in a way I'm glad for you that Alice is in no hurry to walk, she'll be one of those that just gets up and walks properly straight away, but enjoy the non-walkingness (its a word) while you can!

    BIGGEST HUGS EVER from Muppet & mini muppet & co

  5. I get people jealous of the fact we get DLA and mobility for our daughter, and i frequently get told that although i have 2 children with disabilities my life is no harder than anyone elses,just different. Oh and i'm lucky i don't have to go to work (because it's brilliant that my husband has to work every hour god sends and i can't contribute !)
    I often want to tell people to something to themselves, but i never do.
    I never want sympathy but the lack of understanding can just be shocking. Can really empathize with how frustrated you must have felt.