Wednesday, 21 October 2009

Maggie's MRI

Because there’s been steady progression and because we have hope, and because she’s so utterly beautiful, we were telling ourselves, subconsciously maybe, that all could turn out well; that, hey, you never know, Maggie could even make a full recovery.

We had the results of her MRI scan yesterday. It wasn’t good news. It turns out, of course, that her brain has been damaged. Damaged in localised areas that basically take care of her limbs. On both sides of her brain, affecting all of her limbs and trunk. Worst case scenario: quadriplegia. Best case scenario: some kind of moderate physical disability.

Plus she’s still having difficulty swallowing and her gag reflex isn’t very strong.

I could elaborate further and try to go through the heartbreaking discussions we had with her consultants. But I don’t need to do that because, essentially, we’re in a waiting game. How she will be in four months will tell them, and us, more. How she will be in a year will tell even more than that.

So what remains is: Come on sweetheart, you can do it! Don’t do what the Saxtons have always done – underuse their pretty impressive brains. Your sister Louie is using hers so you can use yours. You never know, working a Saxton brain may yield great results! Go on girl!

I was watching Gok Wan last night (I like a bit of Auntie Gok) and found myself getting annoyed with the gaggle of idiotic women on there whining about their self-loathing and body issues. Body issues? How about this for a body issue, you narcissistic, self-obsessed cunts: spending the rest of your life in a wheelchair? Are you too fat, too thin, tits too small, hips too wide? Get to fuck and get a fucking grip!

But then I thought about all that this morning and decided what I don’t want is for Maggie’s condition –whatever it might be – to be used as some kind of weapon. I’m bitter and angry enough without using my daughter to fan the flames. If you see what I mean. I once theorised about David Blunkett and came to the conclusion that the reason he was such an unpleasant, hard-hearted (pragmatic, he’d say) man was because of his blindness. His whole philosophy and attitude to life seemed to be based around: “I’m blind and had a terrible childhood, yet I got off my arse and did something worthwhile. So why can’t everyone else do it?” Really, that’s no way to live. So, as hard as it might be to listen to what is, in comparison, trivial shit, I’m going to try not to get too indignant. After all, it’s not their fault – those idiotic, self-obsessed women – that my daughter’s in a state.

I don’t want a disabled daughter. I want her to be normal. And I’m not going to apologise for using the word ‘normal’. I’m not yet ready to buy into ideas of ‘differently abled’ and all that crap. She’s disabled. And being disabled could well be very horrible for her.

And for us. Personally, I’m rubbish at dealing with even the most minor difficulty and inconvenience. I like an easy life. But then my daughter isn’t a difficulty or inconvenience. She’s my wonderful, beautiful, amazing daughter. She’ll be hard work, that’s for sure. But I’m up for hard work when it comes to her. And if she wants me to carry her around for the rest of her life, I will. Honest. I won’t promise, however, that I won’t moan about it and give her a bit of a hard time about it. But I will do it. As will Shannon. Not because we have to - because we want to.

I used to joke with Shannon that if we had a disabled child I’d be off. It just goes to show you what a fucking liar I am.

The day after Maggie was born, a nurse at NICU started telling me (before I stopped her) how it might be a good idea to talk to parents of disabled children because they could tell me how rewarding it is. Well, I’m afraid I’m not yet ready to buy into that either. I don’t know, it might seem cruel, but I’ve always thought there was something rather nauseatingly pious about those kind of people. But then that can be true of parents with normal kids. It’s like this badge of pride for them and being a parent is all they’re about. Sod that. Maggie’s going to be very, very special. And she’ll get the very best care, love and attention. But if you ever hear me banging on about how rewarding and fulfilling it is for us bringing up a ‘differently abled’ child, then please kick me hard.

This is easier for me than it is for Shannon. The advantage of having a shallow, magpie-like mind is that I can turn certain thoughts off and quickly focus on others. That’s not so easy for Shannon because she likes to think about stuff. I always told her that that was a mistake but there you go. The trick, I think (and thanks to Saeeda and Helen in the comments for this) is to go day by day and not project too far ahead. That’s easier for me than it is for Shannon. She likes to plan ahead and know what’s going to be happening.

So she’s got to work with that and the fact of her daughter being very, very ill. But she’s doing brilliantly at the moment and I can’t tell you how proud I am of her.

So if you haven’t already, why not send her some love? It’ll mean the world to her while costing you nothing. And it really does help.

Alice will be home, here in the house, on Saturday morning. She’s feeding, sleeping, making lovely noises, rolling around and doing everything a normal baby should. Despite her sore, and very red, bum. Hurrah for Alice!

And hurrah for Maggie and hurrah for Shannon!*

*Let me know when that ‘Hurrah’ thing gets annoying....


  1. Just a quick note - I know Paul solely because he had the horrendous task of making me 'marketable' as a columnist several millennia ago - to say congratulations on your new arrivals.

    My daughter, now 11, was in room 2 at the N&N after she was born and we were told that if we wanted to have her christened (we didn't, but the gravitas of the suggestion was apparent) we should do it quickly. 'Immediately,' I think the word was.

    I remember it only vaguely: I think I was so pole-axed that I hadn't just given birth, accepted the pink balloons and left hospital with a babe-in-arms that I couldn't take it in. Everyone around me, however, took it in. To me, their reaction seemed surreal - of course everything would be OK, what were they rabbiting on about? I was, of course, off my face on medication for several weeks, which hugely added to the surrealism. I think things only hit home when I was allowed out of hospital and she wasn't.

    As it turns out - and after a very difficult time - thankfully everything was OK and a decade on, my daughter is hale, hearty and costing me a fortune in mobile phone bills and clothes from H&M. There are a few residual health issues, but nothing to write home about (or I would have written home about it in the paper at great length until a story in the Daily Mail annoyed me sufficiently to change tack).

    I hope as hard as I can that in 11 years time you're saying the same kind of thing about both your new daughters. The resilience of the human body is absolutely awe-inspiring, and babies are built to astound us. It's their raison d'etre.

    Thinking of you both with love, congratulations to the siblings and welcome to the world to Maggie and Alice!

    PS I'm a thinker and a planner, like Shannon. I think back in the day they dealt with pesky thinkers with the chemical cosh I was prescribed. At one point, I was telling strangers I'd given birth to a tomato and that it was in SCBU. And to think, they let me back into the community...

  2. Paul, you are pretty great.

  3. I had to switch my iTunes off to read this as I was aware of my likelihood to speed read. Speed-reading is not good in these type of situations.

    I'm not being flippant, I'm being honest… and your honesty is something I am admiring greatly with regards to how you and Shannon are handling this.

    I have to admit that i too was hoping that everything would be tickety-boo because that makes life so much easier for you… and us too; instead of being in a bit of a quandary about what to say and how to say it!

    Thanks for being so refreshingly honest about how it makes you feel, and for making the 'c' word not quite as taboo as once it might have been… your liberal use of it seems so, so appropriate.

    Keep on keeping on I guess, as there are few alternatives.

    Love to Shannon and the Saxton troupe.


  4. You've made me cry again! And again, words of enough meaning escape me. Just know that I will always be here to listen to you moan nothings changed there. What has changed is that life might take a bit of a different path to the one you both expected, but as you know life can be like that and I know that you will both grab hold of it with both hands. You've both been a massive support to me, its my turn now. If I had wish now, I know how I would spend it. I'll make it anyway and just hope that it comes true. lots and lots of love, Emma x

  5. Hurrah for Paul, the fucking liar. Hurrah for Shannon, wonder mum, fantastic sister, and overall brilliant human being. Hurrah for gorgeous little Alice, sore bum and all. And hurrah for beautiful wee Maggie!

    Paul you know I would jump at the chance to kick you go ahead...I dare you....give me a reason.

    Maggie is amazing and is going to be whatever the outcome is. You needn't go on and on and the rewards of a having a "differently abled" need to sicken us all with going on and on about how perfect and beautiful and smart both Alice and Maggie are.

    And hey......let's not go on and on just about the Saxton brain....remember there is a Forbush one in there too (insert crude Paul snicker here). Between the Saxton and Forbush noggins there is no stopping Alice or Maggie!

    Maybe it is time for meeting parents of "differently abled" children. Not so they can tell you how rewarding it is but so they can give some input on how the fuck they got through it all....especially in these early months. Don't discount the advice of those who have been through it. All the rest of us can do is continue to tell you to keep your chin up, keep on hoping. Doesn't help a ton, does it? Time to get educated on what to expect, in best and worst case scenario and all that fall between.

    I love you all....but you know that. And the hurrah never gets old. I love that too.

    from Austin, TX

  6. Floored yet again by the raw beauty of your writing (maybe you should consider it as a career...) and the enormity of the Saxton-Forbush situation. It is beyond my feeble mind to know how you & Shannon can keep it together for Alice & Maggie and the rest of your family. But keeping it together you are - and falling apart at the same time - which is (sickeningly Paul, as you always think you are right) surely the only natural way you can be. I hope you don't mind but I let a few of the other guys at work who know you both have a read of the blogs. Fiona sent Hi T,

    The blog is powerful stuff – I had to stop reading because of the tears in my eyes as we went through it a bit when Chris’s latest grandchild was born prematurely.

    I think you should encourage Paul & Shannon to think about publishing it when they feel stronger (and hopefully they have a happy outcome). It would help other people in the same situation enormously."

    Don't know if that will elicit a good or bad response but just thought I'd share.

    Lots of love to you both (and a squidge for Maggie & for Alice) Tara xxxxx

  7. Dear Paul and Shannon,
    Lots of love to you both. Have just pulled myself together from a very self-indulgent weep as I read your latest.
    You're both obviously having to deal with the absolute fucking shittiest events imaginable. There's no polite way of saying it. I agree wholeheartedly with your views on "differently abled" - that's a load of bollocks. Anyone who has a disabled child, and is not a complete mentalist or a big fat liar, will tell you this. It's fucking hard work and the world's a bastard. You are entitled to be completely embittered about the unfairness of it all.
    HOWEVER, do not lose sight of the fact that the MRI scan cannot tell much at this point. It's hard to do but try not to think too far ahead. You just cannot predict the outcome. I regret the time I spent worrying about the future (which I couldn't change) when I should have been focussing on the here and now. Babies are only babies for such a short time... (nothing like stating the obvious, H) I plagued the Doctors with questions and estimates and probabilities. A really nice Doctor sat me down and told me, quite honestly I think, that some babies with apparently dreadful scans developed well, whilst others hardly showed any damage and developed less well. (He obviously said it in much more convincing and knowing Doctorish terms but this gist is there!) Likewise, my close friend Bethan's boys were born at 32 weeks following lots of troubles. Both scanned; both showed braindamage. No problems now at age 9 whatsoever. Lucky? Her Doctor said that he guessed if you scanned every baby born there would be plenty of fullterm "healthy" babies who would display some kind of abnormality...
    I know this might all seem like platitudes and i'm sorry because I really want to do or say something that will help.
    Try, try, try not to torture yourselves with visions of the future. Ignore what others say; bury your heads and try to get what positives you can from each day. God I should write greetings cards afterall. Or maybe not.
    Sending positive vibes (Man) to you and your lovely girls. Keep up with the pics; they look beautiful. (Obviously taking after their Mummy. See there's something positive to focus on!)
    Helen (Scrumptious. I wish.)

  8. PS
    Sorry just reread your post and am concerned about your emotional state if you have resorted to watching Cock Wan. Although, you struck a chord with your comments about whinging. I remember feeling like that. (And still do sometimes.)Have a friend who went through similar but, unfortunately, is a hairdresser and, therefore, professionally obliged to listen to "ladies' troubles" on a daily basis. Still check the local press on a regular basis to see whether she's stabbed some innocent to death with her scissors, or set fire to a blue rinser under the dryer. Nothing yet, so that must be proof that things get better.

    Helen Again

  9. Hi you two and your beautiful girls. Have been getting regular updates from Russ (and reading over his shoulder) and just wanted to say thinking of you all, and how brilliant an idea of setting up this blog has been. (Was that you Paul? - sheeze.. I never knew you had it in you!!!) Hope it helps you both a little on this roller coaster, and BIG LOVE to Shannon, xxxxxxx Juni

  10. Hi Paul and shannon,

    Hola from spain, were on a sneaky visit to sids mums.

    i'm going to dispense with the niceties of grammar and spelling to get this out.

    First off i'm not ignoring alice as I know she's got her own battles to fight, but in a football phrase, kind of way , shes on the ball at the

    com-on you maggie!!!!!

    here comes the touche(french word i think) to pauls vocabulary. ITS A FUCKER FUCK BASTARD FUK, shit fuk not fair, not fair. MRI bollocks

    I'm trying to write this and finding it real hard . i dont want to upset you two and put my foot in it.
    hope this helps

    MRI what a cold hard reality shaker,

    go for it dont take it as fact that the worst MRI will be the worst (fuck i hope i'm not making a mess of this)

    our discovery was after the fact. we had the solace of izzys progress, before izzys MRI to counteract the MRI that we got.

    what im trying to say is the consultant looked at the scan and said if izzy wasnt stood there I'd say from this scan that this child would never walk.

    dont stop dreaming and hoping

    time will tell as you say, and like someone said before on this blog, to doctors the glass is almost always empty when they talk to you. alot i think in preparation for the worst.

    DONT STOP DREAMING and wishing, and mentally selling your own body parts to make things right(normal). I would have and did.

    IZzYS mri didnt tell the whole truth. I hope, hope, hope, its the same for you.

    but from what you are saying and they sound the right words and emotions. if you need to face the worst you sound like you can face the worst

    oh shit, i hope this is sounding how i want it to come out. sorry, garbled its turning into an essay

    Dead right, people going on about the rewarding life that disabled kids can have, nobody wants a disabled kid, thats the truth.

    I think those comments are words that help them get thro. that help them to get by , to have the strength

    I hate to say. but having been around disabled kids at nansa, (tell you later-god forbid you need to know who they are)

    i have thought ..there for the grace of god go I.

    why did i say that, this blog has made me fess-up. i suppose. and having seen disabled kids change and become so much more than they seem to be from ther outside you feel proud and amazed and uplifted by them.

    i love the way that iz surprises me, when i thought she'd never do something in the park. climb the slide. two years later she does it, and i think fuk good on you girl of mine, keep on, keeping on.

    the human brain and body are amazing at getting on with getting on.


    youll hear words like coping strategies for maggie, and for good or bad prognosis, i'm sure with her progress or just being herself she will delight you,

    how about this for a 'coping strategy scenario' maggie cant get to the sweet jar on that top shelf, but ive got a sister who, when ma and pa's backs are turned. with the encouragement of maggie will get her to get those top shelf sweets for her.

    I see cerebral palsy kids with a wicked sense of humour and a determination that leave other kids standing, accepting their sleepy hands or tired leg as just part of it, so what! they think to themselves.

    damn you can see why im not a writer, joking apart about running away, neither of you have
    (i know those who have) and that's the point. you havent, so that means your ready to be maggies family.

    hurray for shannon, you, maggie and alice.

    p.s fuk gok. VIVA STEPHEN HAWKINGS!

    love Ian
    kisses,(big gay fucker)

    P.s Grief,anger and eventually acceptance, not necessarily in that order) are parr for the course, so scream, shout, cry and swear as much as you like. (It's the only time you'll get away with it) And make full use of that dry sense of humour, it'll see you through the worst of times. Big hugs to you all.
    saeeda xxx
    p.p.s thanks for posting those photos of your beautiful girlies

  11. Lots of love to Shannon, Paul, Maggie and Alice. If I can help at all, with anything, don't hesitate to call. I know I tweet about being a slut and not doing housework but I really am quite good at stuff like that- especially other people's- so do call if housework ever gets on top of you and I will come round armed with cakes and a feather duster. With lots and lots of love, Rachel xxxxx

  12. I love the hurrahs!!! Keep them coming, Paul. There a lot of hurrahs on this side of the pond in the Maii/Bussler household for the Forbush/Saxton clan. Miss and love, love, love you all.

  13. Hurrah never gets thing's for sure- your girls are bloody beautiful!! And i agree - they look just like their mum. Can't wait to see them both. Much love to you all
    Helen, Billy, Evie and Poppy xxxx

  14. i was just reading various comments here and i just wanted to say that i think that you both are tough. there is a song lyric that goes something like :there will be ups, there will be downs... just remember to enjoy the ride"

    bob and mary