Throw Those Curtains Wide

Last week I was watching The Human Body, a new BBC television programme that details all of our inner workings. In one section it showed how the brain develops and makes these amazing connections even, and especially, while in the womb. The same amazing connections and developments that Maggie’s brain had made - that were then taken away from her in just a matter of minutes.

It’s something that I – we – have been thinking a lot about recently. Mostly because we have Alice providing all the evidence we need that Maggie too would have been a fantastically bright and intelligent child.

It’s odd that we often have to remind ourselves that Maggie wasn’t meant to be this way. Through no fault of her own, through no fault of ours, she had her life ruined. She wasn’t meant to be a severely disabled child.

Of course, it’s utterly heartbreaking. So much so that I don’t think I’ll ever reach a point where I’ll no longer feel sad for what she lost and for what she could have been. And sad, too, for all the sadness and difficulties she’ll have to face throughout her entire life - even long after we’re no longer around to take care of her. That alone is something I can barely bring myself to think about.

But what Maggie’s got, still, are the remnants of a really good brain. It explains why she fights so hard, why she refuses to give up.

For example, you can tell when she reaches out that she understands she should be able to do this – as you can tell it frustrates her so greatly that she can’t. And you can tell when she moves her mouth while watching us eat that she knows she too should be doing the same thing.

So within the sadness of it all there’s also the hope that she’ll continue to fight and continue to make good progress. As she has been doing.

Such as:

We recently moved her into her own room. This came about as a result of her sleeping much better than she previously did. It’s been, on the whole, a great success. Many nights she’ll sleep all the way through. And even on those nights when she doesn’t, she’s only awake for an hour or so and is relatively easy to settle. When she woke last night I was heartened by the fact that she seemed to regard my intervention as something of an intrusion. So I stood outside her door and listened as she got on with the business of getting herself to sleep. It was one of those moments where I just wanted to shout “Go Maggie!”

And obviously, as a result of the better sleep, she’s happier. As are we.

Other, related, things:

I took her to Quidenham last week for a three-day stay. In the car on the way she obviously realised that the journey was longer than the short journeys we normally make. Or maybe she recognised the scenery. Whatever it was, she became very upset. But a different kind of upset – a kind of pleading, howling upset that reached its peak when I handed her over to one of the carers. It was completely heartbreaking because I knew she understood quite clearly that I was going to leave her. I didn’t want to leave her and I almost took her back with me. But at the same time I was pleased to see that she understood what was going on. Because many of the children who go to Quidenham have no idea whether their parents are there or not.

Her favourite television programme, by a mile, is Balamory. If it’s not Balamory she’s not happy. It can be annoying but, at the same time, I love that she gets all arsey if it’s not her favourite programme. Just like any other kid would.

Her favourite song, also by a mile, is Elbow’s One Day Like This. No matter what mood she’s in, just playing that song will instantly lift her spirits. What’s more, she loves to hear me sing it to her (I don’t do a bad job either). If I’m holding her, she cranes her head right round just so she can see my face while I’m singing. It works when I sing it to her in the car and at night when she’s upset at going to bed. Her favourite line appears to be: “When my face is chamois creased.” So god bless Guy Garvey – if anyone knows him, tell him I owe him a few pints and a big kiss.

(Yes, the lower case ‘g’ in god was intentional.)

She likes standing in her standing frame - despite the heavy boots she has to wear to keep her feet flat, and despite the splints wrapped around her legs. She obviously appreciates being upright like that. Good. It’ll stand her in good stead if she ever gets strong enough to hold her own weight.

She was recently fitted for two new chairs – a pushchair and a, well, chair. For the first time ever, she seemed relatively comfortable and happy to be sat down. The downside was that these chairs aren’t funded by the NHS. They ruin her life, they give her appalling care, and they don’t pay for a few things that might help her, and us, cope better. In this case, however, we were ‘lucky’ because Maggie is entitled to something called Continuing Care due to the severity of her disability. So they made up the shortfall. Were she not entitled to it, we’d have had to have gone to charities. Or to god knows where.

It’s here where I’ve been thinking a lot recently about how we have to start getting serious about her future. I feel, many times, as though we’re letting her down: I’m worried that we just won’t be able to provide properly for her. It’s like we’re caught in this trap that we can’t really see a way out of. And it seems, much to our embarrassment and reluctance, that relying on charities or the fucking NHS is the only way we can go. We’re not alone, of course. There are thousands of families out there just like us – feeling sad and pathetic because they have no other recourse.

This explains, I think, why I’m starting to lose patience with people who – unlike Maggie – are in difficult positions that, really, are their own fault. And I hate feeling that way about them. The other day I was listening to a programme about drug users who were going to lose their support as part of the cuts. In the past, I’d have had every sympathy. But now, now that I’m the father of a disabled daughter whose condition is no fault of her own (and who fights so fucking hard against her condition every single day), my response was: “Don’t take drugs. There. That’s your problems sorted. Use your brain - the one that wasn’t damaged at birth, that has all the right connections working and everything in place – and fight. Fight just like my daughter does. And feel ashamed of yourself if you don’t.”

I know that’s a terrible way to think (and I don’t really think that way – not when I’m being completely rational). I don’t want to sound like that Richard Littlejohn twat. But there are times when I can’t help it. Especially when I’m thinking about Maggie.

I’ll end on a positive note: Elbow's marvellous One Day Like This (which I've written about on my music blog here). When you listen to it, think of Maggie’s smile. It makes her very happy indeed.