Sunday, 22 November 2009

Two's Company

It bothered me a bit that in my last post I didn't say anything about Alice. I told myself that the reason for that is that she's absolutely fine and doing all the good stuff you'd expect a baby to do. But really, that's not enough.

She is, quite simply, an absolute wonder. She eats well, she sleeps well and she's a delight when she's awake. Part of me thinks that this is because she's a girl - Louie was also like that. Tom and Isaac, on the other hand, were extremely demanding. Noisy little gits, in fact.

Alice is practically sleeping through the night. She gets to bed between 1am and 2am and is up sometime between 7am and 8am. And we really can't complain about that. When she's older I'll make a point of thanking her for being like this, for making it much easier than it could have been.

I was watching her the other night as she sat contentedly in her bouncy chair, staring at the wall. Suddenly I could also see Maggie happily sat next to her, in her own chair. And it floored me. Because it's what it should have been like: two little girls, two little sisters, growing up together, enjoying life and sharing the adventure. It's the thought of that - the thought of what should have been - that is, for me, the saddest part of all this. I was saying to Tara yesterday that very early on after their birth I pictured them at the age of about three or four - I mean, really saw them - running around in a garden together. Not our garden but an idealised garden, full of red roses, a white picket fence and thick green grass. Both of them in pretty white dresses, just running around and laughing together.

I'm well aware that even if Maggie had been okay, that scenario probably wouldn't have arisen. But that's just me being sentimental and torturing myself with how lovely it could have all been. It's daft, I know, but I can't help it.

Because, you see, despite the brave faces and all the other crap, we're still utterly destroyed by this. And we still don't want to have a severely disabled child. Which is perhaps one of the reasons why I've been less of a presence at the hospital than Shannon has. It's me being a bit of a coward, and a bit naive, thinking that maybe, just maybe, she'll be okay. Or, you know, fairly okay. At the hospital when she's having fits, when she's being tube fed, when she's crying, when she's not looking normal... I know that I'm an idiot for thinking that way. What I should be doing is accepting it and getting stuck in. Getting to grips with the reality of having a severely disabled daughter. And of course I will, when it happens.

Which is not to say that Shannon's accepted it. Far from it. She cries more than I do and she's upset more than I am. As I said before, she finds this harder than me because at least I can sometimes turn it off. I'm much better at that than she is. And she's much better than me at immersing herself in it all and getting on with the business of being at the hospital and being there for Maggie.

In fact, she's up there now, at the hospital, spending time with her little girl who breaks her heart at the same time as giving her so much joy. Whereas I'm tapping away here, keeping an eye on Alice and listening to The Fall.

I could easily turn this into something really maudlin and mawkish. But I won't. Just know that Shannon is coping well and is showing a brave face. But also know that inside she's in pieces and is nowhere near as strong as she lets on. Yet she's doing it and she's doing it wonderfully. No-one could do it better.

Hurrah for Shannon!


  1. Hurrah for Shannon! And Hurrah for Paul! You are both doing a fantastic job and you are both very brave. How you feel is how you feel, don't ever beat yourself up about that or think you should be feeling something different. You've enough to deal with without that. Like I said, you are both doing a fantastic job looking after your two babies under very difficult circumstances and I am full of admiration for the pair of you.
    With lots of love,

    Rachel xxx

  2. You are both doing a brilliant job.
    Whilst I am, rather pathetically, pretending that an eye infection is making me cry at work this morning.
    Love to all of you

  3. of course you're not really doing well or coping as much as you would like to. Of course you're in pieces. Of course. But you're still doing a fantastic job, combining the care for Alice with daily hospital visits, worrying about nurses, worrying about everything else, bills, work, family....Of course it's bloody bloody hard. So hurray for you, you hear. Those girls will get the best care, that's for sure.

    Not too sure about the girl-theory though Paul. My girl is and always was one noisy, loud, obnoxious tantrumprincess. Love that though. As I know she gets that from me ;-)

    Take care you xxx
    Love, Wini

  4. Hi Shannon, hi Paul( I'm Neil T's new wife, I think we met once in the Eaton!), hi Maggie, hi Alice, as I hope they too may read this one day and realise just how much you care for them both. It may not make easy reading but they will see just how strong and spirited their parents are. I've only just received the link to this blog so wanted to say thanks for sharing. I realise the writing of this blog must at times be painful but hope in some way it is cathartic too. Big love to you all, Jo Peios