Sunday, 14 February 2010

Nights and Nightmares

Yesterday (Saturday) was a good indication, I think, of what it's going to be like having Maggie home: very, very difficult.

All day long, and all through the night, she was, when awake, in distress. Constantly crying and howling and often looking as though she was battling with herself. Or, rather, with her limbs. It's really heartbreaking to watch, not knowing why she's looking so sad and terrified as she stiffens her body, windmills her arms and clutches at the air.

What we need to determine is whether her distress is due to reflux, wind, tiredness, cerebral irritations or something else related to her condition. Or whether this is just what her condition is. I know I keep saying it but... I'm annoyed about the fact that we seem to be in the hands of people who, despite their medical qualifications, do little more than make guesses. Guesses, I might add, that are somewhat less informed than our own.

If it's reflux, fix it. If it's wind, fix it. If it's her eyes, let's get them properly examined. If it's something going in her brain, let's monitor it and attempt to work out whether there are things we can do to calm her. I've noticed, for instance, that she really hates being lifted up and down in a playful manner (something that all my other kids, including Alice, loved). Why? Is it because her head's spinning? Does she have a headache? Is she hypersensitive to certain movements? Is it something to do with her eyes?

One of the main problems with everyone we deal with is that they're reactive rather than (dread word) proactive. As time goes on, and as we have more dealings with them, we're realising that we're going to have to keep making a fuss - loudly - to get things done. There's no point waiting for them to do anything on Maggie's behalf.

Oh, and I realise that I'm often complaining about these people. But so what? Maggie's going to need a lot of care so it's vital that we nail now how it should be and on what terms. I don't care if we upset people or if they don't like us. That's not the point. The point is acting upon the realisation that, in the world of child disability, it's he who shouts the loudest who gets things done. I don't want to be in a position years from now feeling guilty about the fact that we didn't do more or that we sat back and just hoped for the best.

And let's not forget that we're very angry. Angry that they don't do enough now. And angry that those fuckers are probably responsible for Maggie's condition in the first place. Something that we haven't really gone in to detail about on this blog because a) it's extremely painful to think about and b) it's something we need to get on top of properly before we seriously push our legal case.

So if you think I'm hard on nurses and midwives now, ask me about what happened on the day the girls were born. Irresponsible, incompetent, lazy, complacent, useless cunts.


There are many problems with Maggie being constantly distressed: it's really unpleasant for her, it's really unpleasant for us, she's never in the mood for essential physio or speech and language therapy, she's constantly tired, we're constantly tired, and her sister - who is an absolute angel - gets starved of attention. Poor Alice.

The twins thing, as we always knew, was going to be difficult. But with Maggie like this, it could be nigh on impossible. Yesterday was a portent of that.


  1. let us Know if we can help xxx

  2. Thanks Anonymous! But who should we let know?

  3. I noticed on one of Maggie's visits when I was there that she seems to like the swinging evident by me swinging her back and forth in the car seat. Hence, the idea of the swing for you guys. Of course that was one I know if Maggie will really like every time she is upset, absolutely not.....but if you think it might help I REALLY want to get you guys one.....better not go out and buy it without telling me. Let me know when and we will work out the details!!!

  4. could probably guess but I forgot to sign off



  5. I reckon that first anonymous might have been Maria! We'll aim to get up to yours next weekend, hold a child for a few hours so you can not have to do it. Or if Maggie finds a few hours peace that'd be cool too! M&M

  6. With you all the way, Paul and Shannon.
    Have never touched upon the topic of who is responsible for Maggie's condition as wasn't sure of how you felt and didn't want to overstep the mark. Friends have been pushing me to say something. Have some excellent contacts and people who will help you with this. At home with Sally and kids if you want to call. Very angry on your behalf
    Much love

  7. Don't have that much to offer help wise. Coffee? Beer? Food?

    That and Annette who Shannon knows and who I think Tao might be able to contact would be your best bet legal wise. She's a lawyer who worked at the N and N defending them over malpractice for a few years before moving away from Norwich. She'd have a great inside track.

    Hope to see you both soon Ruseell n Juni x

  8. i have said before, and i will say it again paul... you have every right to be mad. you and shannon did not ask for the kind of treatment you are getting and the doctors, nurses, and specialists do seem to be guessing. i can only imagine how maddening it must all be.

    like you said... rage. rage loud and hard. demand attention and answers. mary and i support you two. we will be getting that swing for maggie soon too, and checking every day for updates here.

    love you all.

    bob and mary