Tuesday, 23 March 2010


It's been a while.

We've been very busy. And we've been entertaining a few lovely visitors recently. If entertaining is the right word. Which I'm sure it isn't.

Anyway, we've got new pictures and loads of stuff to rattle on about. But not now. We've got the lovely Gina from Quidenham here looking after Maggie all afternoon. So me, Shannon and Alice are going to make a rare trip into the city to enjoy the sunshine. And to do mundane things like go to the bank and pick up sundries.

Love to all.

Sunday, 14 March 2010

Happy Mother's Day Shannon!

Happy first Mother's Day to Shannon!

This is a brief post as it's late and I'm knackered. But I wanted to get these pictures up. We'll write something tomorrow. Something about the following:

See earlier post. This is on Shannon's to-do list.

You may have seen Helen's many comments during the course of this blog. We'd met her before - a couple of years ago at our friends Rob and Sally's 40th birthday do - but last week was the first time we'd really met her. The great thing about it was that, because we've been communicating so much - and because she's been so fantastic, so supportive and so helpful - we felt as though she was already an old friend. It was just great having her here. Not only is she a superb source of wisdom and information, she's also extremely nice - and a very good laugh.

She's been a massive help to us. And we really appreciate it. So please, doff your cap in her general direction!

And a big mention to Rob too, who brought Helen with him, all the way from Nottingham. It's always a pleasure to see him. I was genuinely sad to see them go. But don't tell Rob that - I'll never hear the last of it.

Mother's Day.
Today was Shannon's first Mother's Day and, of course, it was rather bittersweet. I'll let Shannon write about it, as it's her day. But I'll just say that hopefully next year we'll be in a position where we can go out and do something. That is, go out to the pub.

Pictures below are from the above. The last four are from today, Mother's Day.

But aah, look at that picture below - two lovely girls watched over by two wonderful gentlemen.

A big hurrah for Shannon!

Click the pic to see the gallery:

Monday, 8 March 2010

Woods etc.*

It's been a funny week. Hectic and tough. Shannon and the girls at Quidenham for a couple of days. Us being visited by all manner of community health types. Me working.

In brief:

Shannon and the girls had a lovely time at Quidenham. It was much better than expected. I'll get Shannon to write more about this soon.

Maggie was weighed on Friday and is now just over 12 pounds. So she's put on weight at a fairly nice rate. Alice weighs 18 pounds.

We've stopped her 4am-ish feed. Friday night and last night she slept from around 1am to 8.30am. Which is great. But not as great as her sister - 7.30pm to 8.30am. What an angel.

She's about to go into her own room and in her own cot. Maggie, that is. So fingers crossed.

Yesterday and today she was a little calmer. A little. But we're not counting our chickens. She's still doing the screaming thing and being a right pain in the neck. So we're not in Norman Rockwell territory yet.

We went for a walk today that, while traumatic, wasn't as traumatic as previous walks. Maggie screamed and got herself into a state. But not as much as she has done before. And she even slept for a bit. So I think we'll persevere with this pushchair tough love thing.

She adores music. It's an instant calmative and yet she also seems to pay attention to it. Her favourite at the moment is Baby Love.

More soon.

* Title courtesy of Alice Oswald who, as well as having a great first name, is probably the best poet currently writing in English. Most of her poems are 'about' nature and all that nonsense but it's really in the way she writes: the rhythm, the musicality, her use of words. Like Ted Hughes but better. Do yourself a favour and buy here: Woods etc.

Click the pics to see them big.

Tuesday, 2 March 2010


Tom and I took Shannon and the girls for their overnight stay at Quidenham this afternoon. Or maybe two nights, depending on how it goes. Quidenham is a children’s hospice that provides care, support and relief for parents with disabled kids. More information here:

The great thing about it is that they take care of Maggie the whole time Shannon’s there. If that’s what she wants. Of course, it’s not a complete break because Alice also needs looking after.

Me, I’m staying here in order to get on top of my work and all the admin and related bullshit that is now a major feature of our lives. I may even tidy the house up a bit.

Maggie officially came home last Wednesday, with next to no fanfare. Mainly because she’d already been home so often. It has been, for the most part, really hard. This is due largely to the fact that she’s constantly crying or grizzling. Wind? Reflux? Cerebral irritations? It could be all of those things. Or it could be that she just needs to calm down a bit and settle into her new(ish) environment.

The very nice woman at Scope told us that with Maggie it’ll probably be a case of doing things, and expecting things, in very tiny steps. So when we finally get her into her own bed and her own room we should definitely try to get her into a good routine. But do it at a much slower pace.

Her miserableness has an impact that goes beyond merely upsetting (and annoying) us. While she’s like this it’s very difficult to get her to engage with things like physio and speech therapy, and even normal play. Which, of course, isn’t great for her development.

It’s interesting though, the fact that she’s now starting to annoy us a bit. I think it’s healthy. Initially, we felt guilty about this but we’re starting to get over it. Well, I am anyway. I think it’s perfectly fine to admit that she can be a real pain in the arse. As I expect she will be for years to come.

But the other side to that is that I find I’m getting more and more upset for her. I mean, feeling so desperately sad and sorry for her. In the early days I cried a lot. And then I stopped crying and got angry. And bitter. I’m still those things but I’m now back to the crying as well. Which, I suppose, is understandable - it is all very overwhelming. Not just with Maggie but with Alice too; and also with Louie and Isaac (who I don’t pay nearly enough attention to). On top of that there’s my work. I’m trying to build something here, something that will go beyond a few nice jobs and bringing in a bit of money. But I can’t seem to find the time or manage my priorities properly. So I end up panicking and worrying and sometimes doing the wrong things. At the same time, I try to present myself to clients (and prospective clients) as a proper, focused, grown up businessman who has no problems at home. And on top of all that there’s the constant worry about money and the realisation that, while money can make anything in life more bearable, in Maggie’s case it could be critical.

She keeps popping into my head, does Maggie. She keeps making me cry.

See, I think this is one of the things that’s sometimes forgotten: that it’s so sad for Maggie that she’s the way she is. I don’t want her to be like that. I want her to be a normal little girl who will grow up into a normal, healthy, young woman. I want her to have boyfriends and go out dancing and drinking and generally behave like a normal girl. Basically, I want her to have a much better chance than she currently has of being happy.

What’s contributing to my sadness is that we’re slowly entering the world of disability. I find it very strange and difficult and can’t understand why these people aren’t just destroyed by how horrible it is. Not just the disabled people themselves but the carers, the admin people and the charity workers.

When we went to Quidenham this afternoon there was this kid wandering around. He was about fourteen or fifteen and he was obviously very mentally ill in some way. He was stomping around, shouting and making strange noises and laughing occasionally at nothing in particular. He was there, in the room, surrounded by people - but he was really inside his own head. The nurses were, as they should be, quite matter of fact about him, letting him get on with it. They obviously treat him extremely well and do everything they can for him. I can imagine that if I were to ask more about him the story would be how happy he is - and all that shit.

But seeing him killed me. I could barely keep from crying. Because all I saw in him was Maggie. It was a sharp kick of reality that reminded me that she will definitely be severely disabled. That she will definitely turn out to be one of those kids.

As much as I try, I can’t see anything to be happy about with that. I can’t see anything ‘normal’ about it.

And I left Shannon there, as a first-time mum, in an environment that, while lovely and accommodating, just shouts out that there’s something not right. That she’s there because it all went wrong. That she’s there because her beautiful little girl is not as she should be. I forget sometimes that Shannon is a first-time mum and how awful this all must be for her. I forget simply because there’s so much other shit to deal with.

I’m now the father of five kids. Here’s what I love about my kids: they are all lovely, well-behaved, good-hearted, bright and have never given me any trouble. They didn’t have tantrums, they didn’t get expelled from school, they weren’t fussy eaters, they didn’t have any special needs. They were – and still are – great kids. They made it easy, being a parent. They made it so that when I heard other parents moaning on about their kids not doing this or doing that, I felt pleased and a little smug. I could never understand when I heard parents banging on about how hard it is being a parent.

What I expected, twins notwithstanding, is that being a parent would continue to be easy. That it would be something I would be totally relaxed about. I always knew that Shannon would be a fabulous mother. So I was pretty confident that it was going to be a breeze. That we would be really happy doing it.

And it’s the exact opposite. That’s a real shame. Because I could have guaranteed that Maggie and Alice would, just like their older brothers and sister, turn out to be lovely, happy kids that are a credit to their parents as well.

Video below, from the other day: