Sunday, 22 April 2012

"Talk, Maggie...Maggie, talk."

As Alice gets older, I've been wondering when the questions about Maggie would start, when she would just stop thinking it normal that Maggie doesn't sit up like her, walk like her, eat like her, talk like her. Or like anyone else, for that matter.

Tonight, out of the blue, they started. We were all sitting around the table having dinner - and Maggie doing so well with her Sunday dinner baby food - when Alice spoke directly to Maggie across the table: "Talk, Maggie...Maggie, talk."

It completely shocked me, despite the wonderings. I started to cry and Paul covered for me, telling Alice that Maggie would talk soon, when she was ready, and that was the end of it. I thought maybe the food would come first, or even the sitting or walking because we're always carrying Maggie and often insisting, much to Alice's frustration and annoyance, that Alice walk. But to be sitting there, having a lovely dinner around the table, chatting loads between ourselves and for Alice to simply just want Maggie to join in. That's a reality kick killer, that one, and it's sticking with me this evening.

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.

Tuesday, 3 April 2012

Swing Girls

Here's a nice video that Shannon took of the girls on the swings last week. Although Maggie's unable to support herself, look how nicely she's lifting her head and looking up. And look how happy she is.

And no, I've no idea why it was shot in portrait mode. Tch.

Sunday, 1 April 2012

April Fool's

It was three years ago today we found out that I was pregnant with twins. Yes, on April Fool's Day. Bleeding early in the pregnancy - just eight weeks along - and I was referred up to the hospital, a bit nervous, a bit alarmed. The doctor didn't help with his frown of concentration, when he peformed a vaginal ultrasound after the usual one. I was starting to get properly worried when he told us that we were having twins.

I wasn't happy. Paul wasn't happy. In fact, we both cried in the stairwell, overcome by the news. I felt very sorry for myself, for us. How were we going to do this? I wanted to stay at home as long as we could afford me to - how could I handle two babies at once on my own? The sentimental walks I'd been imagining with me and my little baby swaddled to my chest - wasn't going to happen with two, was it? Ditto the breastfeeding, so I felt. Why could nothing ever be simple for us? Why did it always have to be so hard?

I cried a lot over the next few days, sad and helpless in not wanting twins. I'd been so happy in that first month of knowing I was pregnant, and now this.

But then, not long after and quite suddenly, having twins seemed absolutely perfect. We had talked about having two children - we weren't getting any younger and hey presto! here were two at once. I'd been worried that the whole experience would be been-there-done-that for Paul, who already had three children, and here you go, twins. A new one on him too. It felt unique, special, to have twins. We were delighted and we joked about telling him & her/him & him/her & her that we cried when we found out about them. Ha ha ha.

I loved being pregnant. My constant bloody worrying and whirring in my head just went. I felt calmer, happier, all zen-ish and stuff. I loved the idea of twins, though it still scared me witless sometimes. No sickness, no real swelling or discomfort, positive scan after positive scan. I delighted in people's surprise when I said I was having twins. Ha ha ha.

And then it all went wrong - what was meant to be the happiest day of my life was the absolute worst. Two little, early girls and one so desperately hurt that we might only have one left. My twins that stopped being the twins they were meant to be the day they were born. My girls who will never really be twins now, whose lives will be as different from one another's as it's probably possible to be.

Except that you should see the way that Maggie looks at Alice, how she watches her in awe constantly. How her little face lights up when Alice pays her the slightest bit of attention, puts a hat on her head, holds her hand for a minute. Maggie wouldn't be doing as well as she is if she didn't have her Alice to watch and see how it should all be done. And Alice wouldn't be the lovely, sweet, happy, self-sufficient little wonder that she is without her Maggie.