Tuesday, 2 March 2010


Tom and I took Shannon and the girls for their overnight stay at Quidenham this afternoon. Or maybe two nights, depending on how it goes. Quidenham is a children’s hospice that provides care, support and relief for parents with disabled kids. More information here:

The great thing about it is that they take care of Maggie the whole time Shannon’s there. If that’s what she wants. Of course, it’s not a complete break because Alice also needs looking after.

Me, I’m staying here in order to get on top of my work and all the admin and related bullshit that is now a major feature of our lives. I may even tidy the house up a bit.

Maggie officially came home last Wednesday, with next to no fanfare. Mainly because she’d already been home so often. It has been, for the most part, really hard. This is due largely to the fact that she’s constantly crying or grizzling. Wind? Reflux? Cerebral irritations? It could be all of those things. Or it could be that she just needs to calm down a bit and settle into her new(ish) environment.

The very nice woman at Scope told us that with Maggie it’ll probably be a case of doing things, and expecting things, in very tiny steps. So when we finally get her into her own bed and her own room we should definitely try to get her into a good routine. But do it at a much slower pace.

Her miserableness has an impact that goes beyond merely upsetting (and annoying) us. While she’s like this it’s very difficult to get her to engage with things like physio and speech therapy, and even normal play. Which, of course, isn’t great for her development.

It’s interesting though, the fact that she’s now starting to annoy us a bit. I think it’s healthy. Initially, we felt guilty about this but we’re starting to get over it. Well, I am anyway. I think it’s perfectly fine to admit that she can be a real pain in the arse. As I expect she will be for years to come.

But the other side to that is that I find I’m getting more and more upset for her. I mean, feeling so desperately sad and sorry for her. In the early days I cried a lot. And then I stopped crying and got angry. And bitter. I’m still those things but I’m now back to the crying as well. Which, I suppose, is understandable - it is all very overwhelming. Not just with Maggie but with Alice too; and also with Louie and Isaac (who I don’t pay nearly enough attention to). On top of that there’s my work. I’m trying to build something here, something that will go beyond a few nice jobs and bringing in a bit of money. But I can’t seem to find the time or manage my priorities properly. So I end up panicking and worrying and sometimes doing the wrong things. At the same time, I try to present myself to clients (and prospective clients) as a proper, focused, grown up businessman who has no problems at home. And on top of all that there’s the constant worry about money and the realisation that, while money can make anything in life more bearable, in Maggie’s case it could be critical.

She keeps popping into my head, does Maggie. She keeps making me cry.

See, I think this is one of the things that’s sometimes forgotten: that it’s so sad for Maggie that she’s the way she is. I don’t want her to be like that. I want her to be a normal little girl who will grow up into a normal, healthy, young woman. I want her to have boyfriends and go out dancing and drinking and generally behave like a normal girl. Basically, I want her to have a much better chance than she currently has of being happy.

What’s contributing to my sadness is that we’re slowly entering the world of disability. I find it very strange and difficult and can’t understand why these people aren’t just destroyed by how horrible it is. Not just the disabled people themselves but the carers, the admin people and the charity workers.

When we went to Quidenham this afternoon there was this kid wandering around. He was about fourteen or fifteen and he was obviously very mentally ill in some way. He was stomping around, shouting and making strange noises and laughing occasionally at nothing in particular. He was there, in the room, surrounded by people - but he was really inside his own head. The nurses were, as they should be, quite matter of fact about him, letting him get on with it. They obviously treat him extremely well and do everything they can for him. I can imagine that if I were to ask more about him the story would be how happy he is - and all that shit.

But seeing him killed me. I could barely keep from crying. Because all I saw in him was Maggie. It was a sharp kick of reality that reminded me that she will definitely be severely disabled. That she will definitely turn out to be one of those kids.

As much as I try, I can’t see anything to be happy about with that. I can’t see anything ‘normal’ about it.

And I left Shannon there, as a first-time mum, in an environment that, while lovely and accommodating, just shouts out that there’s something not right. That she’s there because it all went wrong. That she’s there because her beautiful little girl is not as she should be. I forget sometimes that Shannon is a first-time mum and how awful this all must be for her. I forget simply because there’s so much other shit to deal with.

I’m now the father of five kids. Here’s what I love about my kids: they are all lovely, well-behaved, good-hearted, bright and have never given me any trouble. They didn’t have tantrums, they didn’t get expelled from school, they weren’t fussy eaters, they didn’t have any special needs. They were – and still are – great kids. They made it easy, being a parent. They made it so that when I heard other parents moaning on about their kids not doing this or doing that, I felt pleased and a little smug. I could never understand when I heard parents banging on about how hard it is being a parent.

What I expected, twins notwithstanding, is that being a parent would continue to be easy. That it would be something I would be totally relaxed about. I always knew that Shannon would be a fabulous mother. So I was pretty confident that it was going to be a breeze. That we would be really happy doing it.

And it’s the exact opposite. That’s a real shame. Because I could have guaranteed that Maggie and Alice would, just like their older brothers and sister, turn out to be lovely, happy kids that are a credit to their parents as well.

Video below, from the other day:


  1. Quidenham sounds great, the rest sounds... like a mountain of almost unbearable pressure, stress and sadness. Russell

  2. Can't say anything, Paul. Yes, this is how it is. Still feel that same pain inside at times but not all the time. You can't feel it for ever, it's unsustainable so somehow nature kicks in and you change a little and survive. Nothing makes it fair though.

  3. i can't believe how amazing maggie looks, she is super super stong... and really REALLY interactive!!
    she's already quite a surprise.
    and alice is just the cutest thing ever! EVER!
    i'm so glad you are home, even if it means no sleep.
    take care of yourself, paul...you will kick some ass and be an advocate for those who need you.
    all my love shannon, you are so special and fabulous, i wish i could hug you and hug you and hug you.

  4. God - how useless & pathetic anything I could say or do would be. All I want you both to know is how much I think about you. It's a lot. But still doesn't help. Pretty shit hey. I shall continue doing it in the hope that some day, one day, things will get easier, more bearable - not too much to ask is it...? Loads of love to Alice & Maggie too. Tara xx

  5. You're right, Paul, it's not fair. Never will be. All I know (and I admit it's not a lot) is that Helen has managed to retain who she is and enjoys being a mum to all of her beautiful kids. Wish wish wish I could make it all ok.

    Loads of love to you all and a big cuddle to Shannon.

    Sally xxxxxx

  6. Hi again!
    Have only just watched your clip. It's just lovely. Both girls looking so gorgeous. Maggie looks so alert. She also holds her arms in a similar way to Tommy. Wondering how she does on her side? Does she like being wedged from behind? (scuse the terminology) Tom used to struggle with knowing where his limbs were going and this often made him "startle". (His arms would jerk back.) He liked to lie on his side with cushions behind him and use one arm to reach out for things. I think he felt safer like this. He was also more accurate at reaching in this position. This was when he was older than Maggie though. Does she like to swing? (Again - sorry!) TOm liked it but only if you kept his arms and legs very close so whole body "safe" and cuddled in. Think he felt confused if an arm or leg swinging loose from rest of body. Prone also good for this but guess tricky with tummy button...The physio will tell me off for some of this... Helen

  7. Beautiful. Simply beautiful. Words are useless. See you next Wednesday.