Tuesday, 27 October 2009

Tuesday 27th

The girls spents some quality time in the cot together again today. The hope was that they would do that mystical twin thing and somehow make everything okay. You never know.

We were visited by the Specialist Health Visitor this morning who told us all about the care available to Maggie. Of course, we don't know what that will entail yet. I felt very down this morning anyway and I really wasn't in the mood for some disingenuously cheery professional making cooing noises and sympathetically agreeing with everything we said. She also asked us all about what happened on the day they were born and we told her that we didn't want to go over all that for the umpteenth time - it's too upsetting. But the worst bit was when she handed us a (very badly designed) leaflet about the Children's Development Unit that was full of pictures of disabled kids. A bit of reality that we really could have done without.

Alice is sleeping fitfully throughout the night. She sleeps much better during the day when she's surrounded by bright lights and noise. We've taken to leaving the radio on all night next to her cot in order to create some ambience. An oldies station, Gold AM, that seems to rotate the same twenty songs night after night. Still, she can't go wrong with stuff like Amen Corner's If Paradise is Half As Nice, The Four Tops' Bernadette and a bit of Beatles.

Here's our routine (if you can call it that) at the moment: we get up, we see to Alice, we all go to the hospital to see Maggie, I return home to try to work while Shannon and Alice stay at the hospital practically all day. I pick them up in the afternoon/evening, we have dinner, see to Alice and then try to sort out all the other normal life shit that we have to sort out. And then, before you know it, it's bed time. It's tiring, it's time consuming and it can also be very lovely. But it's also very hard and upsetting.

As it was today when Dr Dyke told me that, yes, it is disappointing that Maggie hasn't yet sorted out her swallowing and sucking. A basic neurological function. Still, it's relatively early days - relatively - and we still have to wait and see.

I included our daily routine, by the way, to give an indication as to why we've not been in touch with people as much as they would like us to. Our time is taken up with ourselves at the moment. But that's okay, right? It's not just a time thing - it's that, really, this whole situation is so all-encompassing that even when there is a bit of time it's nice to not have to think or talk about it for a change.

I played Alice this today and she loved it. You will too, if you don't already. Some very cool women being very cool:

New pictures below. Click to see them big. The one at the bottom, of Maggie, was taken by a nurse yesterday, capturing her in one of her more alert moments.


  1. i remember when shannon, mary, and i used to dance like that... those were the days...of coordination.... and nkotb

  2. Jen's on crack.....or I am because I don't recall dancing with her at all, much less to that song. But it is lovely.

    And my my if Alice isn't getting a little chub in her cheeks. Precious. Maggie's nurse needs a lesson in picture taking but good of her to snap one of Maggie in an awake moment.

    Keep the pictures coming. Maggie and Alice are the background on my work computer. I love minimizing or closing out all the windows and seeing them there. And just a few more weeks till I will be seeing and holding them. Hope that thought is still yielding quadruple likes.

    We love you all.....

    Austin, Texans.....

  3. Great to see more lovely pics of the girls. Realise that "life" and the daily routine have taken over so it's really good (for us) that you are managing to update regularly.

    Throw the leaflet in the bin.

    These "Professionals" are well meaning but nobody really knows what the future holds. I also can't help thinking that it's all part of the crap "sue your arse off" culture which means that they have to tell you every single possibility just incase at some time in the future you say that you didn't get the right advice or information.

    Looking back on our situation, nobody got it right, so what's the point? Not at all helpful to look at pictures of disabled children or able bodied children as none of them are YOUR children...

    Because your children are, of course, perfect and beautiful. (Soppy bugger.)

    Good luck through the days and the nights.

    lots of love

  4. I imagine that most of us understand that your time needs to be your own at the moment. Me and Juni check Maggie and Alice's progress everyday via the blog. It sounds tough going..

    I obviously don't have anything to say that will alviviate any pain, just we are thinking of you all.


  5. I second Russell's post above.

    Thinking of you all.

    Let me know if you want more cake :)

    And keep the photos coming please....


  6. I'm sure no one expects you to have time for being sociable at the moment so don't worry about that. Our job is to be here for you if and when you need us, not to make demands of you! I for one am just so impressed by and grateful for this blog and being able to see photos and hear about how you are all getting on. My offer of practical help/coffee and distraction doesn't have any kind of end date! Take care, thinking of you all. (lovely photos, cue all sorts of mushy mushy cutey cutey feelings!)

    Rachel xxx

  7. Thinking of you all - occasionally and in an appropriate way, of course.

  8. oh what truly delicious babies!
    love checking in to your blog and catching up with whats going on with you lot. I must say you are both looking far too good for new parents, have you had an art director in then?
    Been trying to think of a suitable pressie for the girls, understated, useful, gorgeous, inspired and more to the point CHEAP!!!! In the end I decided it might be more useful to ask what you actually need. So when and if you ever get a minute to yourselves, feel free to make demands. Thinking of you all.
    loads of love
    saeeda xxx

  9. whew! im tired just reading your routine!

    thank you for letting us all in on a little of your day. i can assure you that everyone who takes the time to read this, even if a comment is not made, appreciates every single word that you and shannon put here as you reach out to us all.

    i will only say that music is important. you know how important. having such great taste in music as you both do... i am sure that it will play a big role in the lives of the girls. maybe me and mary will make a little mix of music to send over so you can have something for you both... as well as for the girls.

    me thinks that is a good idea.

    love, texas folks