Sunday, 24 January 2010

Maggie Home (Briefly)

I was going to write a very long post about Maggie coming home yesterday. I was also going to write about the visits we've had from Mary (Shannon's sister) and Daniel (Swedish Daniel, as we call him, because he's from Sweden). But I'm not very well today. A combination of shitting and puking topped off with what may well turn out to be the flu.

But I'll go and see my doctor tomorrow. Because if you're at death's door, he's just the man to help pull you through.

Courtesy of Eric Morecambe, that one.

So we've had a busy weekend. Daniel arrived on Friday, left on Sunday afternoon and spent most of his time in the same spot on the settee. We did feel a bit bad about that - that we weren't more entertaining - but the sheer pleasure of our company more than made up for it, I'm sure. Mary arrived on Saturday afternoon, all the way from Texas, and she's been great - particularly today when my self-pitying whining prevented me from being too involved with the day's activities.

So yes, it's been great having them here. As well as being a help, it's just good to have nice people around the house. At the same time, it's a bit of a sad reminder that we're not a little closer to our families. It's funny, but it's an assumption that almost everyone to do with Maggie's care has made: "Oh, but you'll have family to help you out won't you?" Er, no - because we didn't plan on having a disabled child you see. We thought it'd be okay, just me and Shannon.

Best laid plans and all that.

Maggie's first visit home was, we believe, something of a success. She was a little tired and a little grumpy but, when awake (and not upset), seemed very alert and very happy to be here. We fed her here, with the pump, and that went well too. The whole visit was as good as we could have expected. The most important thing about it, of course, is that it made us feel a little more confident about getting her home permanently.

It was wonderful having her home. And it was particularly good to see her reacting to her new surroundings. As I've mentioned before, she responds really well to music and it was good to be able to whack it up a bit and have a proper dance.

There are, below, pictures and a short film from the day. Again, the quality of the film has been downgraded from the original. But it still gets across quite well how Maggie was yesterday.

And no, that isn't a trick of perspective - she really does have giant-sized hands.

I have to say though that this film (and the last film) paints a pretty positive picture of Maggie. She looks happy, alert and responsive. But that's not how she is all the time. Far from it. But the thing is, I'm not going to be filming her when she's distressed and I certainly wouldn't upload that type of thing here.

I mention this because although I'd like everyone to see how great she can be, I don't want to paint a completely false picture.

Talking of pictures, you'll see that we still have our Christmas tree up. I'd like to be able to say that that's because we've been so busy with all that's gone on that we just haven't had the time to take it down. But the truth is, we do this every year. It's nice to have it in the room, the glow of the lights providing a little cheer through the darker months. Last year - or the year before - we didn't take it down until the end of March.

Season's Greetings to you all!


  1. Love it! Not that you're sick, Paul. But the other stuff. XSarah

  2. You had to go and put a picture of me up after a long well deserved sleep but no shower for two days, huh??? Stinky or not, it was great to be here when Maggie came home for the first time. I think the visit went well....Maggie does love her music....the baby sling will come in very handy when she is home for good.

    Now suck it up with this sick's just a damn cold.....we all get 'em and usually survive :P


  3. Look at that! How amazing to have them together, as well as Mary and Daniel, in the comfort of your own home. Must have been pretty weird and amazing.
    They do look a little different don't they. Hadn't noticed that before so much. Maggie certainly looks like both Shannon and auntie Mary!
    I think you all look ok, to be honest, considering the little sleep or rest you've had these past few months. Yes, you too Shannon, really.
    I hope we can visit you this summer, maybe even with our little girl. That would be top!
    For now, here's to progress, measured in baby steps of course. xxx love, Wini

  4. Just got to tell you how much this has brightened up my day! I know that you have been really careful to post what you see as a "positive" clip of Maggie but WOW! I don't think you realise how great this is!!! Well obviously you do but maybe it's good to hear it from an outsider. Trust me when I say that I never expected to see such fantastic responses from Maggie. SHe looks amazing!
    Am so glad that your weekend went well, even with Paul whinging.
    Feeling quite tearful (and excited) for you.
    She is lovely! (And Alice too!)
    Love Helen

  5. Great to see Maggie having such a lovely time, even though Paul is being a proper botherer!!! Hopefully, will get to see you soon. Sorry, but Rob will have to come with me!!

    Sally xxxxxx