Monday, 10 January 2011

January Stuff

Just added the pictures above. Maggie on the rug downstairs today after getting herself off to sleep (which never happens) and Alice in the bath last week. They were taken on the iPhone so the quality isn't great.

The first post of 2011. It was going to be all about Christmas and the new year and new starts and all that. But it’s 6am. I’ve been up with Maggie since 2.30am. So forgive me if I ramble a bit.

Although it’s fair to say that 2010 was the worst year of my (our) life, it also seems a little unfair to say it. Because while it’s been extremely difficult, frustrating and sad, there’s the reality of us having two little girls who we adore. And it just doesn’t feel right to pin the blame for our terrible year on Maggie. So I won’t.

That said, I really do hope that 2011 will be a better year for us. I would say that it couldn’t be worse than 2010 but, of course, it could. However, as one of my new year’s resolutions is to tolerate idiots even less than I previously did, it’s possible that everything associated with Maggie’s care and development might be better as a result. So if you’re an idiot – particularly a NHS idiot - watch out.

Which reminds me.

A few weeks before Christmas Maggie’s gastrostomy site began to leak. Not only did this mean that she wasn’t taking enough food in, it also caused her a great deal of discomfort as the hole in her stomach got very sore. As soon as it leaked I took her to the hospital where she was examined by a surgeon who said it would stop of its own accord. It didn’t. A few days later we were visited by a nurse who agreed with the surgeon’s assessment and who promised to get us some cream to soothe Maggie’s site. The (prescription only) cream didn’t come and her site grew sorer and sorer. Finally, Shannon called in another nurse who, on her own initiative, changed the device that goes into her stomach. The leaking stopped.

In the meantime, we’d requested to see the senior surgeon at the hospital to talk about Maggie’s gastrostomy tube and whether we should change the device. Basically, we wanted his expert opinion. We also asked him – twice – to consult with Dr Bem so that he was fully aware of what Maggie’s problems were. In the weeks leading up to this meeting, which we regarded as a very big deal, Shannon and I discussed all of Maggie’s feeding possibilities: a new peg, a dual peg thing that goes into different parts of her stomach, whether her being constantly hooked up would be a good thing or a bad thing, whether she should be fed all through the night. Etc.

Yes, it’s boring. It bores us too. But it’s what we worry about and it’s why it was such a big deal for us to see this senior surgeon. We needed expert guidance and advice.

So we got to the meeting, sat down and this surgeon said: What’s the problem? Have you spoken to Dr Bem? we asked. Er, no, I er… he muttered. Why not? Er, well…

He hadn’t even bothered to talk to Maggie’s consultant – despite acknowledging that he’d been asked twice to do so.

So we had to go through again what Maggie’s problems were. And then, unbelievably, he said: What do you think would be best to do? We don’t know, we replied, we were hoping you’d tell us. So he mumbled a bit more about various options and then said again: What would you like to do? Again, we said, we were hoping for your guidance. Whereupon he whipped out his pencil and drew a picture of one of the pegs. He didn’t explain how this would benefit Maggie, he just a drew a picture of it. And when we asked if that was the one he was recommending, he again asked what we’d like to do. It was then that I walked out of the room, taking Maggie with me.

(I think the reason I write these incidents down is so I can remind myself of the utter useless cunts we have to deal with. It also reminds me that, really, we have to do all of this by ourselves. There seems to no-one we can really trust or rely on.)

Christmas, however, was great. Mainly because all of my children were here. And, despite a swine flu scare on Christmas Eve (that turned out to be a chest infection), Maggie was on reasonably good form throughout. She even slept a couple of times through the night. That’s all changed now though because she’s up all night snorting and snuffling with a cold and a temperature. In fact, she’s been like this for over a week now. So again, we’re exhausted.

She’s also, disappointingly, not put on any weight. Even though, relatively speaking, she’s been keeping her feeds down. So that’s another problem we’re going to have to seriously tackle. You should see her these days: she’s skin and bone. It’s very upsetting.

We were watching a documentary about Bob Monkhouse the other night that featured a clip of him talking about his son who had cerebral palsy. He said something along the lines of how the sadness that he felt wasn’t for himself but was for his son having to suffer such a difficult, tragic life. That’s how I feel nearly all of the time. And it’s unbearable. Which is why it’s good sometimes to simply rant about the people who let us down: because it’s a way of talking about Maggie and her condition that avoids the sadness.

The problem with the sadness is that it’s so difficult to express. It just ends up sounding horribly mawkish. And needy.

That said, I’ve been having so many sad thoughts about Maggie recently that seem to come from nowhere. I haven’t spoken about this particular one (below) to Shannon yet because I know it’d upset her and because I don’t think I could get through telling it anyway.

I was lying in bed a few weeks ago and, as I was falling asleep, the following scene came into my head: a road in a holiday caravan park, me and Shannon in the foreground carrying bags and, just ahead, two little girls – around five or six years old – turning and waving at us, giggling, then running off to hide behind the bushes. Two normal little girls doing something that you’ve seen kids do a million times before.

It’s just a silly little image, a little vignette, but it’s really stuck – and it breaks my heart. I think because the scene is so trivial, so ordinary. It’s not as if I were picturing her winning gold in a race or anything. It was just Maggie, with her sister, doing something really normal. Something that we know – despite kidding ourselves that we don’t know – she’ll never be able to do.

She was fitted with special boots the other day. They’re designed to keep her feet from bending down so that if ever she gets close to walking, she’ll find it a little easier.

On another note: my previous post got a lot of attention. Which is not surprising really, given its subject matter. As you may have seen, the comments all got a bit out of hand, with some people airing their stupid opinions and hurling abuse. I haven’t really got a problem with stupid opinions and abuse - but I have got a problem when it’s happening on a site that’s associated with my daughters. So please, if you want to do that kind of thing, have a go somewhere else. And grow the fuck up.

During all of this attention I was also referred to as a ‘Special Parent’ by a well-intentioned blogger. I can’t tell you how much I hate that. The odd thing is that I’m not quite sure why I hate it. It’s probably something to do with not wanting for either us or Maggie to be labelled. Our names are enough. And we’ll be the ones who decide what we’re called. Plus, of course, I have five children, only one of whom has special needs. And then there’s that thing of wanting to resist being sucked into the world of disability. As I’ve said before, I don’t want Maggie in that world – I want Maggie in our world, with us.

Oh, and I also had a few complaints about my use of the c-word. Frankly, I’m amazed that someone can read this blog and think: There’s no need for the swearing. Fucking twats.

But the vast majority of comments we do get, from people we know and don't know, are bloody marvellous. We really appreciate all of the love and support that's out there. It makes us very happy.


  1. All I'll say this morning is that people who moan about swearing on this site are cunts!

    Love to you all. Won't say you're a special parent, just that you can be a right royal pain in the arse, but that in terms of Maggie's treatment and doctors' inadequacies you're totally justified and I, for one, love you!

    Sally x

  2. As always, really moving and though-provoking stuff. Makes me embarrassed at the normality of my life and that I can only imagine the smallest proportion of how difficult your life must be. You two (and your whole family) have every right to be angry.


  3. I've been wondering how you all have been. Thanks for the updates, happy new year, and much love to you all.


  4. Hi. Yet again you have reduced me to tears. You are so right about the seductive power of "normality" and how much we long for it. And I know you do feel alone and in many ways, realistically, whatever I would like to believe, you are. But here and now, in the reading and the empathy and the affirmation (whether or not you feel the need of it), for a brief moment at least, you are not. Truth to tell you can't be sucked into the world of disability. You've been catapulted into the experience of having a child with a disability and the socially constructed barriers that come with that are despicable and pervasive. None of what you encounter that is negative or unhelpful ever derive from you - they derive from our inadequacies as people, as medical professionals, as defensive practitioners who subscribe to a policy of offering options without any expression of preference as a reaction against historically imposing consultants and perceived potentially litigious patients and carers. It stinks. For you and for her, it stinks. I can only tell you that I thank you for being such good parents to a child who is owed a debt by the rest of us we will probably fail to honour. May you find joy with her in the mess of life despite the pain.

  5. I'm with you on the hope for 2011 to be better than 2010. 2010 was a cunt of a year! See you soon for a pint.


  6. I'm sorry you continue to have such a tough time and it's such a shame that these consultants let you down time after time, I'm shaking my head when I read that he's asking what you think, ok there should be some of that but isn't he supposed to have opinions and advice based on professional knowledge. I do hope things are better this year. As always love to you, Shannon, Maggie and Alice and their older sister and brothers xxx

  7. I remember so clearly, shortly after the girls were born, you, me & Alice in the 'family room', when Dani was in with Shannon & Maggie. The enormity of it all hit me then, when (both of us tearful) you spoke to me about your vision of a garden, a white picket fence (so fucking stupid, you said, as if I'm ever going to have a fucking white picket fence) and two beautiful sisters running and laughing in the sun. So, whether it's your own fantasy back garden, or an imaginary caravan park of the future the feeling of immense loss and somehow being cheated is the same. It tugs at me - hard & right in the chest and never fails to bring the tears back to my eyes. Fuck only knows how you & Shannon can bear it every day. But you do. And every time Maggie smiles (you know the really cheeky smile she does, where she properly looks as though she's come up with something verging on evil genius and is truly chuffed about it) then the tug disappears for a second. Maybe. I don't know, but I like to think that's how it works. Keep on at those frigging doctors, nurses, consultants - whomsoever should be in proper bloody charge. Love you all.
    T x

  8. I don't know you Paul and Shannon, nor Maggie nor Alice and I don't know what Maggie's disabilities are but I can empathise and offer a bit of positive support I hope. I have a 33 year-old daughter with disabilities - not as extensive physical problems as it sounds as though Maggie's are but nevertheless, when she was born (with microcephaly ie small head), we were told to expect a severely disabled child and when she was 5 we were told that she would never learn to read or write or be properly socialised and to put her in a residential special school and forget about her and concentrate on our 'perfectly intelligent younger son' (which we didn't do of course). We just brought her up as best we could, pushing her wherever possible, encouraging her and including her in our lives, accommodating her as well as we could. She went to mainstream school even though it was a struggle for her and she couldn't pass exams like her peers. She has been living at home and she is not able to work for a living. She is however, about to move into a flat on her own and does many, many things that she should not have been able to do and no doubt would not have been able to had we listened to the (thankfully few) negative people we encountered when she was young. We took advice when it suited us and went our own way when advice didn't make sense. If you met my daughter now, you would not believe she ever had that prognosis, though you wouldn't believe she is 33 either.

    As for medical advice - generally we found lots of well-meaning people but nowadays they are tied by quotas and 'procedures' and all that stuff about 'what would you like to do' is what they are told to do in order to give patients 'choice' and 'empowerment' whereas in fact it is abdication of responsibility for what they have been trained and educated (also paid to do). So keep making them do their job (I am sure that you will) but don't let them get to you. Many of them don't like it either and most of the have forgotten what it is to use common sense, instinct and empathy - or are too scared too. But at least we don't have the US system where most of us would be left to our own devices.

    Anyway, I am sorry for your pain. That never really goes away I am afraid - the wishing that you could have children like your friends who always seem to have clever, successful offspring who go off and do their own thing and make a success of their lives independently. But unless you are very unlucky, your children will grow into little people with characters and thoughts, humours, friendships and many, many good fun times. Family and friends will make it that way.

    I have posted as anonymous just because my daughter would be mortified if she thought I was talking about her in public, though she is quite candid herself about her learning and other disabilities. Keep that picture of yours in your mind and work towards it. Don't let the problems defeat you even though it is so very hard. And thanks for sharing your feelings - I hope that in some way this has helped.

  9. what to add to this previous post, but: from the bottom of my heart I wish you, Shannon and your beautiful girls a "normal" 2011. Normal as in ups & down, but bearable, with enough of the positive stuff to outweigh the cunts & the idiots. Can't believe I just wrote that. Better wash my mouth!
    Anyway Paul, hold on to that image. We'll do that too. Big hugs & lots of booze to the new year xxx Love the pics. Alice now brown??

  10. Bear in mind that the 'idiots' at the hospital read this blog.........

  11. Dear Anonymous. First of all, don't be anonymous. Have a bit of courage. Secondly, I don't give a damn whether the idiots at the hospital read this blog. Maybe after reading it they'll work a bit harder to get their fucking act together.

    But as I said, don't be anonymous - don't be a coward. Reveal yourself.

  12. Right on Paul....hopefully these idiots in the hospital are reading and will see that their patients and the families are actual human far as getting their act together.....from the idiots you're dealing with, sadly I am not sure that will happen. I vote for a move over here.....sure Texas is hot as shit......but in my experience the doctors and nurses actually do give a shit....

    BTW....visit soon and I think we will have a house to put you all in :) Sorry I haven;t been great about keeping in touch lately.....but we are thinking of you lots and lots...

    love to you all

    MB and Bob

  13. just so you all know, i haven't posted any of the comments you made mention of before, nor the anonymous hospital post either from above, in fact, i haven't read your blog in months and am just catching up with a lot of it. (how is that for honest)

    didn't think i missed the girls birthday, but i'm sure the card went out late, with the flashcards. Quinn likes them a lot, when he's not trying to break them. the one that says 'combine harvester' (it's in the farming one, i don't think i sent to you)-is a little odd though.

    We are into this "Baby Signing Time" ---sooo awesome. Quinn signed 'cracker' the other day, which is knocking a fist on your elbow. he also did "more" once....which i think is pretty tricky to do, so... yeah, he's fun. not much of a talker, so far, so this baby sign language is interesting. well, it's entertaining....for me...

    have you tried a farrel bag? i might have spelled that wrong...maybe it's farell bag. it attaches to a bag for g-tube feeds, and gives the feed a chance to vent up so she can't vomit as easily. it's like burping. some parents hang them level to the baby, some higher, it depends on their feeding schedule, etc, but it totally limits the amount of vomiting, because it'll go up into the farrel bag, and gravity will let it go back into the stomach. not sure if it will help...but i can snake one from work for you...mail it up if you want to try it?

    i probably mentioned before, maybe not, about the parent that had the really heavy blanket for her kid (it was like lead), and her kid slept like a baby underneath it. i think the kid had some pretty decent cp, and a lot of spastic movements and such, and her mom just gave it a try and it was like the body couldn't move, the brain stopped it's tremors for awhile. it was amazing to watch.

    i've seen a bunch of interesting things. and i will speak for the jackass dr that didn't mention it before, but your baby maggie is doing far more than he could have dreamed, and she has lived a full life so far, all one year of it, with loving parents and a bigger headed sister, and despite her traumas and vomits and rough spells, she's a VERY LUCKY LITTLE GIRL. :)

    and don't think i didn't notice the blanket she was laying on in one of those pictures. :) that made me happy.

    when shannon writes, she should say so in the beginning? because i'll start to read it like it's paul, and then think 'well...this is too nice to be paul," skip ahead and see that it's shannon. you two like to keep us guessing i suppose.

    wtf mary, you're getting a house?

    love lots, and would love to visit at some point, but Quinn's a bruiser, so i'd prefer your girls get bigger and stronger first, so i know he can't hurt them...

    love, Jen

  14. Hi Paul

    Happy New Year to you and the family. It’s been a manic couple of weeks so have just caught up with your latest blog.

    It still makes me angry (as I said when we met before Christmas) that the consultant should just keep asking you what you want - it's not as if he is a genie offering to grant your every wish.

    However, next time he (assume he must be a he to be that dense) asks you what you want, you could try asking for the following:
    1) a cup of tea and some biscuits (this is not in priority order - obviously - this first request is just to make him drop his guard)
    2) a miracle cure for Maggie (he did ask)
    3) a new car (preferably in racing green)
    4) a consultant who listens, reads notes and - get this - consults (with the Dr Bem for instance - not just you)
    5) a consultant who can actually make sensible recommendations based on expert knowledge and judgement (not just what he can draw)
    6) a new jacket (not that your old one's that bad but it's worth a try)
    7) hospital staff who can be as responsive and independent minded as the nurse who changed the tube without consulting anyone
    8) ANYTHING and everything that could make Maggie's life better - however trivial it may seem (as if you needed to ask!) – without having to beg for each individual item as though it were a treat or fill in loads of forms as though they were state secrets.
    9) Oh yes – the thing you came in for – specific advice on this [the latest, specific] problem!
    10) Another biscuit, perhaps?

    There we go - 10 thoughts that might just make the consultant (if they are human rather than just a weird golf fanatic dreaming of extra-smooth putting) realise just how dispiriting, frustrating, stressful and exhausting this whole process is for you all, particularly if the professionals can't be bothered to do more than tick boxes on their "stakeholder partnership positive inclusion targets" list.

    Hope to see you again soon - will call soon about possible coffee (if that's what you want).

    Best wishes - take care


  15. I'm not sure I have anything to add to the (mostly) wonderful comments above, but I just wanted you to know I'm here and reading and wishing your beautiful girls & youse the best 2011 you can possibly have, from me and mine mwooooahhh the muppet (first name muppet :P )