At Last, A New Post

One of the consequences of having babies at a later age is that you get tired quicker. And things start to ache more.

One of the consequences of having a disabled baby at a later age is that your rotator cuff really fucks up. So much so that you can’t even type, let alone haul babies around.

Hence, in part, the recent silence.

It’s still fucked, by the way, my rotator cuff. I’m seeing an osteopath and everything. Spending my own money too. Which tells you a bit about how much it hurts and how much I want to avoid going through the fucking NHS. If I left it with them I’d probably end up having my arm amputated. In 2019, when they finally got round to seeing me.

Anyway.

There’s been loads happening here. Probably far too much for me to remember. Which is why I’m going to do this post in chunks, rather than attempt to construct the usual easy-to-read narrative that I know you all love and appreciate. Plus, it’ll allow me to give my rotator cuff appropriate rests.

Rotator cuff. It’s like something you’d expect robots to have.

First things first is that we’ve recently had visitors, as you’ll see from the photographs in the previous post. Shannon’s mum and dad (Grammy and Grandpa) followed by our friends Kali and Marlisa.

It was great having them here. We like having visitors. It makes things a little easier for us and it reminds us that there’s a world outside of all the crap we have to deal with. And it’s good to have people – people we like, people we’re close to – telling us that we’re doing a good job. It’s particularly good to see the way they react to Maggie, especially when they first see her: No, she’s not this desperately damaged kid.

Except that she is, of course. But we’re going to try to mend her a little bit.

One of the things that Marlisa said, that Shannon mentioned to me after she’d left, is that this blog, for all the good things about it, doesn’t get across the amount of love there is in this house. Especially the love there is towards Maggie.

And there is a great deal of love, for both girls. We adore them.

But the thing is, Maggie can be a massive pain in the arse. And she’s been more of a pain in the arse these past few weeks than she normally is. On account of her incessant vomiting.

She had big problems coughing up brown bile – or what the consultant called ‘coffee granules’. Twat. It was blood. Probably a dose of gastroenteritis. Or it could have been the wear and tear on her stomach from all the reflux.

So there she was coughing up brown stuff and vomiting up her milk during every single feed. Very worrying. Because one thing that she needs to get sorted is putting weight on. She’s far too small.

These first two years, as with all babies, are crucial. If she stays small, her brain stays small. She desperately needs to pile the weight on so that her tiny brain develops better. This is, I stress, absolutely vital. We’ve got just over a year to get on top of it.

And given all that, you’d imagine that Maggie’s highly-paid, highly-intelligent consultants would be on top of it, doing everything they can to give her the start in life that she both needs and deserves.

But of course they’re not. What we got – in a nutshell – was the usual fucking about. The usual half-hearted stabs at solving the problems. The usual guesswork instead of expert opinion. The usual acting when we demanded they act, rather than acting off their own back. The usual childish defensiveness when questioned. The usual haplessness and gormlessness that we’ve come to expect from them and the NHS.

So rather than these highly-paid, Friday afternoon golf players doing anything for Maggie, we had to rely, again, on the good sense and attentiveness of the lovely people at Quidenham. Who suggest things, who ask questions, who obviously have Maggie’s best interests at heart. If I was the kind of lunatic who believed in God, I’d thank God for them.

She’s there, Maggie, coughing up brown stuff and is barely looked at by the consultant. He told us to bring her back on Friday afternoon. But on Friday morning we got a call from one of his minions telling us that he’s cancelled the appointment and can we bring her in on Monday instead? Is this because he thinks it’s right for Maggie or because it’s convenient for him? I asked.

At no point did she, or anyone else, actually ask how Maggie was. She could have drowned in her own blood for all they knew.

Dramatic? Honestly, you should try living with the endless frustration of having to rely on these people. They’re not a help, they’re a hindrance. Yet we have to keep deferring to them because… well, because we need the reassurance that we’re doing the right thing for Maggie.

What we did, from a suggestion of one of the women at Quidenham, is increase Maggie’s omeprazole – the medication she takes to help keep her reflux in check. It turns out she was on the very lowest dose. We increased it and the consultants agreed to increase it. But they stayed strangely mute when asked whether if we’d have increased the medication earlier – months earlier – she’d have put weight on earlier.

At around the same time, however, she developed a cold and a very bad cough. Which she still has. It causes her to vomit. So we’ve yet to see whether increasing her medication will work.

If it does work, we’ll be extremely angry. Because it could have helped Maggie’s growth and development months ago.

Here’s some good news:

As each day passes she gets brighter and a little happier. She smiles, she fixes and follows and she responds to all the appropriate stimuli. She’s not there yet though. She still puts on her thousand yard stare and she’s still boss-eyed.

But we think she can see quite well. She might have a problem with focusing on distant objects but overall she manages to catch most things. We were in the back of a taxi last week and we noticed, for the first time, her eyes properly darting to catch everything that flashed past. And in the pitch dark, when we’re sitting feeding her in the middle of the night, she can quite clearly see what we can.

She is, in many ways, an absolute delight. She’s very cute and she’s got the best smile. And she’s started to laugh too, when I bite her feet, albeit in a bit of an odd way. She loves music and she loves being jiggled around and played with. And she really loves me and Shannon. A bit too much perhaps. She is, if nothing else, a very clingy baby: only me and Shannon will do. Which is a pain. Shut up Maggie! Just lie there for a bit! Leave us alone!

She’s still very noisy. She still doesn’t sleep too well. She still hates the pushchair and she still hates the car seat. So going out is always a joy.

Physically she’s making progress in some areas and not doing so well in others. She still scissors her legs. She still points her feet down when she tries to stand – they need to be flat. She’s still a bit too floppy. And yet she’s also a bit too stiff in her arms and thighs. She still twists her head to one side and needs to be encouraged to look the other way.

But she’s showing all the signs of wanting to crawl – and crawl properly - which is more than her sister is.

On top of all that: we’re struggling to cope with it all.

We don’t get enough support. We don’t get enough advice. We don’t get enough of a break. It’s just relentless. Everything about our lives is to do with Maggie and her needs. It can get extremely wearing.

And we’re struggling with the sadness of it all. It isn’t fair and we haven’t, despite what we tell ourselves, come to terms with that. We know it isn’t fair because Alice is so perfect in every way and there’s no reason to suppose that Maggie wouldn’t have been just the same. This could have been really easy and happy.

Shannon is struggling because it’s never-ending. All day long and all night long it’s about the girls, about Maggie. She’s all-consuming. Me, at least I get a bit of a break from it through work. Shannon doesn’t get that break.

(Shannon, by the way, is the best person to talk about this. I don’t want to put words in her mouth.)

Me, I’m struggling with worrying a bit about my age. What it means for me and what it means for Maggie. In the dark, as I’m sat there with a screaming, vomiting Maggie I do despair that this is how it’s going to be for the rest of my life. Obviously she’s not going to be a baby but she’s always going to need care, will always be demanding.

When she turns 18 I’ll be 60. Fucking hell.

So, effectively, the rest of my decent adult years will be spent caring for a disabled daughter. I’d love to be able to say that I’m okay about that. But I’m not. Not really. I’d like to have a life too. One that goes beyond me pissing about on Twitter because I think it’s the closest thing I’ve got to a normal life. In one hand Maggie, in the other hand my iPhone.

Another thing about that is that when I get older I’ll be less able to cope with Maggie. Maybe she’ll have to be looked after by support groups or helpers or people within the disabled ‘community’.

Over my dead body.

Recently I seem to have seen more disabled people than I have in my entire life. This is partly due to the fact that I’m currently writing a website for a disabled self-advocacy group. A group run by people with learning difficulties for people with learning difficulties. So I’ve had to immerse myself in their world: reading case studies, sorting through photographs, meeting them.

On paper, it all sounds great. Disabled people empowering themselves and trying to live as normal lives as possible. Good for them. But as I’ve said before, I find it all very strange and very sad. Because try as they might, they don’t exist in our world. They exist in their own twilight world.

I attended a meeting earlier this week and there were loads of them there. They were, of course, all nice enough and coping well and seemingly quite happy. But all I kept thinking as I looked at them was which one of them Maggie would be closest too when she got older. So then I began to despise them a bit.

I was chatting to this bloke in a wheelchair who couldn’t move his arms and legs properly and who was obviously a bit backwards, as they used to say. I just became overwhelmed with how sad it was that he wasn’t really a part of our world. Sad about everything that he was missing out on. Because it’s great in our world. It’s great to be able-bodied and intelligent, and to be able to communicate properly and not be patronised by well-meaning clowns. Nor pitied by self-pitying cunts like me.

Fucking disabled people. I’m sick of seeing them and I’m sick of having to think about them.

Maggie stays in our world, with us.

I was singing ‘Daisy Daisy’ to her the other day, as ‘Maggie Maggie’, and I couldn’t get past the part about it not being a stylish carriage. Because it made me think of her future life and how she’ll never quite live like a normal little girl or a normal young woman. That she’ll most likely never have a boyfriend or go out dancing or get married or have children. 

It’s a bastard, it really is.