Monday, 26 April 2010

A Break

They had a last-minute cancellation at Quidenham on Friday. So we took Maggie there that evening. We're picking her up tomorrow (Monday) morning.

We haven't done anything too wonderful in her absence. Shannon had her hair cut on Saturday. Alice and I met her later in town and we all pottered about. We watched a bit of crap telly last night, got a little drunk and awoke at a more leisurely time this morning.

This afternoon, however, we took Alice swimming for the first time. And, as predicted, she loved it.

It's possible that we don't mention enough how wonderful - and wonderfully easy - Alice is. It's not just that she's in bed by 7.30pm and awake at around 8.30 the following morning. It's that when she's awake she's the most easygoing baby. She's very bright, very happy and an absolute joy to be with.

If we just had Alice we'd be the envy of parents everywhere. Our lives would be incredibly easy.

But the strange thing - and actually, maybe it's not that strange - is that we really miss Maggie. Even though she's a massive pain in the arse, and even though almost everything about her is difficult, we really wouldn't want to be without her.

Thursday, 22 April 2010

Future Growth

Maggie's physiotherapist reckons she's doing brilliantly. And not just brilliantly for someone of her condition. This news cheered us up no end.

Her dietician, however, informed us that she's not put on weight. That she may even have lost a bit. This news didn't cheer us at all.

But that's the thing with Maggie: one minute it's this, the next it's that.

Overall, she's making good progress. She's making more eye contact, she's fixing and following, she's giving us the odd social smile, she's reacting to different stimuli and she's obviously very keen on us. I'd say she was like a three-month old baby. Or a two-month old. Not great, but it at least demonstrates that progress is possible.

And talking of progress, I've been thinking a lot about her future recently, about her life as an adult. As I was driving home today there was some fella who runs a day centre for disabled people talking about the kind of things he has to deal with. And when he spoke about the adults who go there, and what they get up to, it struck me that they exist in this kind of twilight world of disability. I mean, how often do you come across disabled people on an average day? Hardly ever, I'd wager. Yet they're out there somewhere, scurrying about in the skirting boards.

At Quidenham the other week they asked Shannon if we'd like to come with them on a big trip to Colchester Zoo. A special tour, after hours, when everyone else has left. Er, no thanks. We'll take Maggie to the zoo in the same way as everyone else goes to the zoo.

At the moment she's got us to love her. To be her friends. Who will she have when she's older? Well-meaning carers? Other disabled people? Social services?

I don't want her in that world. It's a rotten, sad and rather pathetic world. I want her in our world.

Pictures from this past week - taken on my iPhone, so the quality's not great:

Sunday, 18 April 2010


We'd been looking forward to it for ages: Maggie at Quidenham for a couple of nights. Shannon and I were going to go out for the first time together since the girls were born while Tom babysat Alice. The following day we were going to go swimming and nip into town. Just a tiny period of normality, a nice - and much-needed - break.

They rang this afternoon, a couple of hours before we were about to go, and cancelled.

Shannon very upset. Me too.


Sunday, 11 April 2010

Five Go Mad in Norwich

The girls were six months old a few days ago, on April 9th. Six months. I can't decide whether it seems longer than that or shorter than that.

This past week they were joined by their older sister and brother, Louie and Isaac. It was, as ever, a joy having them here: they make me happy by just being around. You really can't beat having a house full of kids.

Alice took to them both immediately, and to Isaac in particular. He has a real knack for making her laugh. And as she's now starting to laugh properly, it's pretty wonderful seeing her so full of joy.

The weather while they were here was great. Except on the Wednesday when it suddenly became very cold, grey and miserable: the day we decided to go to Cromer. It was quite a significant trip for us because it was the first time we'd taken Maggie on such a long journey that didn't have some connection to her care. Of course, she howled and screamed all the way. And all the way back.

To be honest, her aversion to the pushchair and the car seat is beginning to drive us a bit mad, especially now that the weather's better. We're practically housebound. Well, we're not, of course, but it feels like it sometimes. It's such a shame that we can't just go out as a family and have a nice time.

We're also still persevering with getting her bedtime/sleeping routine sorted. It's been very difficult and very trying and tiring. We're exhausted. But if we crack this - if we can get her to better get herself to sleep - our lives will be so much easier.

By the way, if you live thousands of miles away you should have taken it as a given that I understand you can't just nip over to see us. I'm referring, of course, to my 'plea' in the last post for people to come and visit: "Make a bit of fucking effort" etc. My attempt there was to boldly state that if you're thinking of coming to see us, please do - especially if you live here in Norwich. Just come and see us. Don't worry about whether you might be intruding or whether we're up to our eyeballs in shit. Just come and visit. We'd love to see you.


Aside: Last week I went to see the comedian Richard Herring with my friend Andy. He was fantastic - Richard Herring, that is. You may recall that he's the fella who raises loads of money for Scope, the charity for people with cerebral palsy. He's a very good man. Anyway, he also does a podcast where, for donations, he'll mention your name. So as a result of Andy forcing a tenner on him at the gig, he mentioned our names in last week's podcast. And now - now that I've been called a cunt by Richard Herring - I think I can die happy. You can hear him doing it here: at around 4:30.

Pictures below from this past week. The last four taken on my iPhone*, hence the crappier quality. Click to see the gallery.

* I mention the iPhone by name because, a) I'm a bit of a wanker, and b) because it's new and I love it very, very much. It is now an integral part of me. We are as one.

Thursday, 1 April 2010

Spring Bulletin

At last, a new post. Unfortunately, it's written by me again. So all you Shannon fans out there will have to wait a little longer.

Because it's been a while, there are many, many things I could write about. Every day there seems to be some new event or incident or turning point or thing I can moan about. Luckily, I've got a terrible memory - so this shouldn't take too long.

First of all, I should mention our consultation with Maggie's consultant, Dr Roy: it was nicely positive. Luckily, Maggie was in a very good mood throughout her examination so it was quite easy for him to get a measure of how she is physically. The downside to that is that he didn't really get a measure of how she is behaviourally. I'm sure he must have been thinking what a good little baby she is.

On the whole, I'd say that things are positive. This doesn't mean that she's making fantastic progress or defying expectations. It means that she's not deteriorated and that she seems to have the potential to be a little better than we first thought she would be. Possibly.

Her legs are good. Her arms are less good, but not absolutely terrible. She's putting on weight at a fairly decent, though modest, rate. Her small head is continuing to grow.

Aside: did you know that your head size is determined by how big your brain grows? It's obvious really, isn't it? It's why it's so important to us - and to her - that her head gets bigger.

He had a look at her eyes and noticed her obvious squints. She fixes and follows but it's not consistent and it's not particularly strong. So we took her to see the opthamologist who said:

It's good that she has squints in both eyes. This means that they're both 'working', so to speak. She fixes and follows but it's not consi... You get the idea. So yes, she can see. But we don't know what she can see, how well she can see or whether she can even make sense of what she's seeing. It's a right old game all this, I tell you.

At the moment - over these past three nights - we're trying to get Maggie into a sleeping routine. We're doing what works with other babies and what worked with Alice: we put her down and if she cries we leave her. For a few minutes. Then go in and comfort her. And then leave her. And then go in and comfort her. Etc. It normally works a treat.

We don't know if this will work with her. Babies with Maggie's condition have different needs. What we've got to determine is whether getting her to sleep is something that can be tackled through the part of Maggie that is basically a normal baby. We won't know until it succeeds or fails.

At the moment, it's failing. She's mostly awake - and screaming and crying and twisting and turning and getting tangled up and pressing her head against the cot bumper - between her feed at 8pm and her feed at 12am. During the latter feed she gets a dose of melatonin which enables her to get to sleep until any time between 6am and 8am. So yes, that's something.

I think she needs to learn how to get herself to sleep so that she's a bit happier. Her default position is one of distress. She's almost always crying.

I mentioned Quidenham before didn't I? It's a 'hospice' for kids like Maggie. They're great there and they do a fabulous job. What we particularly like is how much they like Maggie.

They had a cancellation the other weekend and rang to ask if we'd like to have Maggie stay there. Of course we did. With reservations. On the Thursday night Shannon and Alice stayed there too, in the family room (so Shannon could settle Maggie in and I could get on with some work). On the Friday and Saturday nights (and day times) we left her on her own.

It was good for her and it was good for us to have a break. We were able to do normal stuff like eat dinner, watch a film and make a trip into the city. Alice went to bed at 7.30pm - me and Shannon were free until the following morning. Hurrah! The sad bit - the really sad bit - was that we got a taste for how nice it could all have been had this terrible thing not happened.

What was sadder though was that when we went to pick Maggie up on the Sunday morning it was immediately apparent how different she is to Alice. And how she isn't like a normal baby. When she's here with us, all the time, it's easy to get used to her and how she is.

We've had visitors these past few weeks too. First of all, Shannon's brother Jim, sister-in-law Kirsten, niece Gretchen and nephew Sammy came to see us. It was lovely to have them here. Alice was a little shell shocked at seeing new faces (i.e. she screamed) but she seemed to like them all - particularly Gretchen, who was smashing with her. (Absolutely lovely kids, by the way, Gretchen and Sammy. If you know them, you'll already know that.)

They were followed very closely by my mother and her husband Brian. And it was lovely to have them here too. The girls received specially monogrammed teddy bears each, which they seem to like very much indeed.

I think we should have more visitors. It makes life seem a little more normal. So if you're reading this and thinking to yourself: "Hey, maybe I should make a bit of fucking effort and go and see Paul and Shannon and the girls," then why not make a bit of fucking effort and come and see us? Really, it's not hard and it wouldn't kill you - especially if you like us (which I suppose you must, if you're reading this).

Oh, and it was exactly a year ago today - on April Fool's Day - that we discovered we were having twins.

Recent photos. Click the pic to see the gallery: