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.