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:


  1. Love, love, love the pictures!!!! They are two of the most amazing babies I have ever known.....and not just saying that because they are my nieces. :P

    Good to know Maggie is kinda keen on you guys...and why shouldn't she be, you're kinda nice people. She has come so far from the very beginning and she'll continue to make progress, in her own due time. Get the eating thing down, have to be a big strong girl!!

    Miss you all tons


  2. Ah, some positive news. Way to go Maggie! If you reckon she's now at about the level of a 3-month-old, she should stop crying soon, aye. Well, here's hoping!
    Good that she's starting to realise you're the good guys & that finally you start getting something back. Even if it's only a hint of a smile or a quiet halfhour. As a new parent, you need that desperately, don't you.
    And look at Alice, she's happy as ever it seems. She'll look after her sister in no time & help her develop.
    Take care and see you at the next installment.
    xxx Wini

  3. Please don't despair about Maggie's life as an adult. For one thing, no-one can predict what she will be able to do when she is 20 any more than they can predict what any small baby will be when they grow up. For another thing, adults with disabilities have many more opportunities these days than ever and by the time Maggie is grown-up there will be even more options, I am sure.
    Have you ever seen a Kingfisher? You know how you have to wait and go to the places where Kingfishers hang out and even then you might not be lucky. But when you do see one - wow! It's worth the wait. So maybe with Maggie you just have to be more patient, and wait a bit longer, but when she does do something, like smile at you, it's amazing! And don't forget that Maggie has such a lot going for her, because she has so many people who love her.

  4. That is the best picture ever. Really made me chuckle.
    Know what you mean about the future. Don't think about it. It'll just happen and you won't notice it in the way you worry about now. I promise.