Tuesday, 19 January 2010

Homeward Bound

We were told yesterday that Maggie's gastrostomy operation will take place next Wednesday morning. Which is both good and bad: good that they're getting on with it, bad that they're getting on with it.

I was only thinking this morning that it would have been difficult with twins anyway. I think we've forgotten that. Then again, Alice is a dream. Maybe Maggie would have been a dream too. Maybe it would have all been really easy and lovely and manageable. Maybe we would have been really happy.

The worst part of all this is thinking about what might have been. I think I've said that before. I still - we still - have those moments where we look at Alice and become overwhelmed by the sadness of Maggie not being there with her.

Of course, it's not just a case of getting her home and having her literally being with her sister. Whatever it's like, it just won't be the way it should have been.

I think there's a tendency for us to think about how bad and sad this is for us. Which is fine. You can't blame us for that. But I think we occasionally forget how bad this will be for Maggie. We don't know yet exactly what her disabilities will be, except that they'll be serious. Who'd want to go through life like that? I wouldn't. Poor Maggie.

And what was it about Gok Wan's programme about disabled women this evening that annoyed me? I didn't watch it. I couldn't face it. Maybe I suspected that it would be full of platitudinous crap about how even though they're disabled they're just like 'normal' women with the same ridiculous hang ups about beauty and self-image and blah, blah.

I think it's because I'm still resistant to the idea that there could be anything 'normal' or 'positive' about being disabled.

But we'll see.

We're currently still trying to re-set Maggie's body clock. I say we but I really mean Shannon. She's up at the hospital now, no doubt trying to keep her awake and keep her calm while she is awake so she sleeps through the night. Or at least through a good portion of the night.

The idea is that she'll be a bit easier to manage when she does come home. To be honest, because I'm the way that I am (not thinking about anything until it actually happens) I've been a fair bit less involved in this. It's going to be tough, we know it's going to be tough, so let's just deal with it at the time. Which is probably a daft way of approaching it. I don't know.

So she'll be coming home properly soon with her button gastrostomy and feeding pump and tubes and medicines and Gaviscon and all sorts of crap. In the meantime, they reckon we can get her home on day release type visits. Presumably to get her acclimatised to her new environment (and to how fucking cold this house is).

Below, the girls together - for the first time ever - in the double buggy today. We went as far as the hospital canteen. Which is the furthest Maggie has ever been.


  1. My first thought is hooray! I'll be there. By all means, put me to work....whether it's looking after Alice so you can both be there or even at the hospital with Alice to dash off and get you guys whatever you need. A million and a half questions come to mind, which I am sure you probably can't answer right now but I for one am glad that this is happening so soon. Maggie will have a lot of needs for sure and it will be tough. But her needs will be met because she has the most amazing parents in the world.....yes, Paul....that means you too. While family is far away it sounds like you still have tons of support nearby.....hell, get Bob and I jobs and we'll move in a second to help out!

    Need to give you guys a ring soon to sort out details of me arriving.....which is very soon now! Love to you all....

    xoxo Mary

  2. Good news that brings yet another set of challenges for you both. But then you don't need me to tell you that. However, like challenges before, I'm sure you'll both pull together to overcome them. I like to think that if I'd been through the mill in the same way you both have these past months, I'd have come through it with the same fortitude. But deeply I'm not sure I would. If there's any luck going around it's that Alice and Maggie have you both. All the best, Chris and MC x

  3. It's good news. She'll be home soon and things will get better.

    As for Cock Wan fannying around with wheelchairs - he can F*** off.

    Know where you are coming from with the accepting disability thing. I remember Jonny doing some crap politically correct training course at work about how there is no such thing as "disabled" it's that society "disenables" certain members of the population. At the time I thought what a load of shite and typical do-gooder nonsense but as Tom has grown up I've come to realise that this is actually true. The problems don't lie with Tom or other people like him, it's the wider community that discounts his needs as he is in a minority. That's the unfortunate reality.

    Good luck over the next week...

    Off for a shower. Let's hope that Wan bastard doesn't turn up. Wouldn't like to see him naked. Urgh.


  4. Paul and Shannon20 January 2010 at 12:49

    Thank you for the lovely comments and compliments - they come at a particularly good time because Maggie's had a few particularly bad days and wrenching guilt trips have come in the form of nurses and play specialists telling me that she pines for me when I'm not there. Great. But Maggie came to my defense and proved them wrong by crying the whole time I was there yesterday - largely because she pulled out her tube four times so the gastrostomy couldn't come soon enough! Thank you again for all your thoughts of us.

  5. Sending heartfelt wishes and hoping that all will be well when you are all home together. Lots of things to think about but you've got loads of support from all around you. Again, let us know if there is anything that we can do to help. R, A and L.