Monday, 16 July 2012

Wednesday Operation and etc.

It’s been a long time since the last post. Not because nothing’s happened but because I got a bit fed up with the constant moaning. My constant moaning. It’s enough to depress anyone.

Also, I’ve been spending the little spare time I have teaching myself to play the piano. It’s going very slowly but I’m loving it. I’m doing it partly as an escape and partly, I have to say, because it’s something Maggie will never be able to do. Unlike her, I have no fucking excuse not to do something I’ve always wanted to do.

I thought I’d write this post, however, in advance of Maggie going into hospital on Wednesday for the operation we’d previously mentioned. As you may recall: it’s so she can be fed through a tube directly into her bowel or intestines or wherever. The idea is that she won’t be able to throw her food up and will therefore put on weight. The other idea is that she’ll be plugged in throughout the night so will need to take a little less feed during the day. That is, it’ll free her up a bit. It’s a dual peg thing that enables her to be fed through her stomach, as she is now, and also through her intestines. Lovely.

She goes in to hospital on Wednesday and could be in for two nights. But hopefully just the one. Shannon will be with her the entire time.

In the past few weeks – or months – Maggie has been up and down. The worst thing, by far, on a day-to-day basis is her continued lack of sleep through the night. We’re still up with her at all hours and we’re still knackered and depressed about that. It’s like having to live with a difficult new-born baby – something we’ve done for almost three years now. We’re slowly introducing her to the sleep system which will hopefully improve things but needs to be done for her physical development. She needs to be able to sleep on her back: something she’s never been able to do due to the constant vomiting. Her newest thing is to wake at 4am and stay awake. Really, night after night of desperately trying to get her back to sleep while the sun’s coming up and the bastard birds are banging on is one of the least fun things we do. It’s then that I’m, in particular, at my lowest – when all the bitterness and sadness and hate comes flooding in.

She also takes at least two hours to get to sleep in the evening.

Outside of the sleeping issues, she’s made some good improvements. She’s a much happier kid during the day. Much more communicative and responsive and delightful to be around. She loves nursery, playgroup and the School For Parents at Scope.

She’s still taking certain amounts of food orally and was coping really well with it. Not enough to sustain her – not nearly enough – but enough to give us some hope for a better future. However, recently she’s pulled back a bit. She was really enjoying eating custard (and almost exclusively custard) but now takes just a few mouthfuls before signalling she’s had enough. The worry with the operation is that she’ll end up permanently full and be even less inclined to take food orally.

One of the biggest problems we had with her –as you may recall – was her refusal to travel in the car. She’s mostly got over that now and will happily sit there for some time. So that’s a nice victory. She’s also much better in her pushchair. In both cases, however, she has to be constantly on the move.

I’d say that overall, things are better with Maggie. But overall with us as a family – I’m not so sure. The lack of sleep is completely depressing and demoralising and is making us both ill. I don’t know how much longer we can carry on with the way she is. It affects everything.

We’ve also come to the stage where we’re just crushed by the sadness of knowing how she should have been. I think this is largely to do with Alice being the way she is – bright and lovely and stepping out into becoming a proper little kid. We’ve both said many times how it hits us when we see Alice running off to play with some kid in the park – you know, that she should have been doing that with her sister.

As for the two of them together – they’re very sweet. Maggie idolises Alice and anything she does will make her laugh and smile. For Alice’s part, she’s obviously got a real affection for Maggie and is starting, I think, to realise that there’s something different about her.

There’s probably loads more I could write about, that I’ve either forgotten or can’t be arsed to recall. So this’ll have to do. I’ll write more later in the week, after her operation.


  1. So lovely to see you all the other weekend, Paul. Shit that things are so tough. Come down for the night as/when you can, whatever combination of you wants to come. You can have our bed and everything. Good luck Maggie! x

  2. Thoughts are with you guys - especially Maggie - hope the op goes well. Although it sounds dreadful - if it helps her grow, and maybe sleep, then at least some good comes from it.

    Good luck with the piano playing.

  3. Be thinking of you all.

    Love Sally xxxxxx

  4. Good luck Maggie. Fingers crossed this eases the night time nightmare! RnJx

  5. "We’ve also come to the stage where we’re just crushed by the sadness of knowing how she should have been." Not sure how to respond to this,Paul, other than to say - I know, and I wish I could make it better. But the fact that they are twins compounds the agony. I see it every day with Tom and Olly. Come and see us with Shannon and the girls. We can get pissed. Or summat. We are allowed to feel angry together. Helen x

  6. I am so sorry the pain is increasing in some ways rather than diminishing. My son is four and has hypotonia , seizures and severe global developmental delays. He is probably getting close to one year old developmentally. I have no other children so do not have the pain of knowing how it typically is. I have had an extremely hard time with acceptance and self blame compounded by an awful psychiatrist . My marriage is ending largely due to my being on the wrong meds for over a year. I am so glad that you two remain a couple seemingly from what I read very supportive and appreciative with each other .
    I thought the pain of my baby's issues and my psychotic break due to false self blame were the lowest I could go. This divorce has debunked that . I also amso grateful for the love I have for my little boy, for every moment he is joyful, and for the knowledge he gets the love and care he needs. I sure understand sad days or moments but in my case with nothing to compare it too I am so grateful to love someone so much and get to be his mother.

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