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Monday, 30 June 2014

I'm not like you...

... you might not be able to spot it, but we aren't the same.  Why?  Because there is something really wrong with me.  Not just me as an individual, I'm talking about me as a friend, me as a lover, me as a mother.  I'm not real.

I read some of the amazing blogs out there, and feel like I'm peeking in someone's window, checking out the incredible meal they've cooked from scratch with all organic and locally sourced ingredients; or the wonderfully wholesome play session they enjoyed with their child involving educational songs and paint all over the ceiling and bright eyes and toothy grins; or spying on the world leaders they've engaged in fruitful discussion, changing all of our lives for the better, while simultaneously being an interesting and witty host for the local and national media who have descended unexpectedly to report on the occasion; or the decrepit stone barn that, in just one long bank holiday weekend, they have transformed into a cosy and welcoming property, complete with a wood burning fire and homemade ... no no, handmade curtains and cushions and bags and bags of character, all for just eleven pounds and sixty eight pence, and the contents of their kindly next-door-neighbour's skip.

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This is not my life.

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My life is a slowly rusting, constantly squeaking, mostly late and ultimately unreliable merry-go-round of disorganisation and failure.  I cling on with tired fingers even as I wonder why I'm bothering.  Trying to take slow deep breaths, desperately hoping that no one realises I have not got a clue what I'm doing - that somehow I have reached adulthood without actually growing up.  I seem to have got away with it so far, but every day I'm terrified someone will realise that I'm faking, that I don't belong here in this house, with this man, with these children, living this life.

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She bends down to kiss first her son then her daughter on the cheek as they set off on the short walk to school.  Her son glances back over his shoulder, and waves as he sees her watching still, with a wide smile, the same as she did every day until they turn down the path that leads them from her protective gaze...

Nope.

Any morning of the week I might be found searching frantically in the glovebox for chewing gum because I have to pop into the school office to find out if I've paid for a trip yet or not (I have no clue) and I've just realised I spent so long harping on to the kids about how important thorough toothbrushing is that I completely neglected to brush my own.

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Gently closing the oven door with her knee she sets the timer and begins running the hot water ready to wash up.  The much loved cookery book is returned to the shelf, the treasured cross stitch bookmark carefully replaced to mark the much favoured chicken pie recipe.  As the aroma of warm pastry fills the kitchen, she turns her thoughts to dessert, pondering the relative merits of fresh fruit with cream or ice cream with chocolate sauce...

Nope.

Every time I open the oven to put in a beautifully hand bought in Asda handmade chicken and leek pie into the oven I get a faceful of black smoke caused by the bits of other meals that escaped their plate fate by jumping from the oven tray on to the oven floor.  Once I've coughed and spluttered a bit I find myself wondering if it would be easier to get a new oven rather than trying to clean this one.  I always come to the same conclusion - yes, it would be much easier to buy a new oven, but also considerably more expensive, so I kick the oven door shut and pretend I didn't notice the smoke... what smoke?

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She reclines slowly, long graceful limbs smooth and soft, looking into her husband's eyes with a gentle smile just for him.  As he joins her on the bed she reaches for him, and the rest of the world slowly fades away...

Nope.

I experience never ending guilt about the fact that while Mr Manley seems to absolutely not give a shit about my hairy legs and stretch marks and not in the slightest bit manicured (or would that be topiaried?) lady garden, I tend to spit instead of swallow on the rare occasion that the matter ... ahem ... arises.  It's not as though nothing goes on, it's more that I am selfishly selective in the giving / receiving department.  On reflection, never ending guilt might be a bit of an overstatement - surely if I was that bothered then the spit/swallow decision would need to be made more frequently?

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She hums as she finishes buffing the taps, an old song she remembers from school assemblies.  Looking around the small bathroom, from the spotless porcelain sink to the toiletries carefully arranged in small baskets on the shelves.  Noting that the spare toothbrushes must have migrated to the main bathroom, she adds replacements to her mental shopping list, and snapping off her vivid yellow gloves she sighs with satisfaction at a job well done...

Nope.

I slide the lock on the outside of the little bathroom door when Mr Manley's mum and husband visit - I've been meaning to attack the limescale in that toilet for ages and it has now reached a point where it wouldn't look out of place on one of those Life of Grime type programmes.  I know it only takes a minute to splash the anti limscale cleaner down there, but the only time I think of it is when I've just flushed the loo, and if you do it then it all runs straight down into the bowl, and the scarily grubby under-the-rim bit would not get any of the benefit.  That's okay, my chirpy inner domestic goddess pipes up, let's clean the sink and taps and wipe down those shelves quickly, empty the bin, and by then the bowl will have mostly dried... Unfortunately I don't actually pay the slightest bit of attention to my inner domestic goddess, so I leave the room, promising myself I'll pop back in half an hour, and then it's out of my head, not to reemerge until the next time I flush that toilet, at which point I make an identical decision, which leads to - surprise surprise - an identical outcome.

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As she finishes stretching she appreciates her body anew, and as the rhythmic music pulses in her ears she begins to run.  She feels the breeze on her face as the repeative thud of her feet on the pavement matchs her music, and her mind begins to clear as her strides lengthen...

Nope.

Last Thursday I decided that rather than get a lift to the gym, I would walk.  Much healthier.  Only problem was that by the time I got there I was pretty much dripping with sweat already, so I had a very long hot shower and then walked home.  My gym behaviour is closely related to the way I think I'd be in a sex shop - casually walk past, look around furtively before doubling back a few steps and slipping in the door.  Eyes on the floor, pretending to be invisible, shuffle across the room.  At no point make eye contact or speak to anyone, even if especially if you recognise them.  Once business is concluded, exit quickly and do not look back.  Stroll nonchalantly away from the immediate vacinity with entire face glowing like hot coals, dripping with sweat, completely out of breath and legs just a little bit shaky.

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At times I even try and fake being a mum - being the right kind of mum I mean, but of course that's tricky because I hardly know where to begin.  It's such a relief that I no longer have to wait in the playground for the kids to come out of school, sneaking sideways glance at all the other mums with their clothes that match and their make up and their hair styles ... I don't have a hair style - I just have hair on my head that pretty much does what it wants.  I own neither straighteners nor (wait for it...) a hairdryer, and I only brush my hair immediately before, during, and after washing it.

And I call myself a woman - cheek!

In fact I don't call myself a woman.  I'm thirty four, and given a choice of nouns, I would most likely define myself as a girl.  Not through any coy avoidance of allusion to the number of years I've been around, more because a 'woman' is an adult - a grown up, someone who knows what's going on and has some handle on their life.  Half the time I feel like I'm seventeen and somehow no one has noticed that I don't belong here, that I'm pretending to be an ordinary person, that I'm masquerading as normal and somehow - somehow - getting away with it.

I'm not sure which Attenborough it is that does the BBC series and which is an actor (and whether they're both still alive, come to think of it); the whole i before e except after c still confuses me; I didn't really enjoy reading Jane Austen, although I pretended to during A Level Eng Lit; I can't change a car tyre - I wouldn't have a clue where to begin; and I've never yet used the word expedite in a conversation.

Strings of words drift through my mind as I fall asleep, fine and delicate as spider silk, catching the light as the breeze carries them from here to there and back again.  At the mercy of something other than myself, slivers of light dance in the air, energised by hope for the future.  Unaware of my place in the world I hide from the possibilities, afraid of making the wrong choice.  Maybe when I awake everything will be clear and fresh, and I will find a coherent path to follow, no longer looking all around myself and finding only chaos.  Maybe I'll be a grown up, with no need to constantly measure myself against others and always come out wanting.  Maybe if I chase down those dandelion seeds dancing in the breeze I will find answers of my own, a way to join the world on the same terms as others.  But until then, I remain invisible, unsure of each and every step, my only certainty that everyone other than me knows what is going on, and I alone am living a life full to the brim of bravado and mimicry, knowing that soon I will be found out.

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Friday, 27 June 2014

word of the week

A very straightforward word for this week :
Reality

Oh yes.

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reality (rɪˈælɪtɪ)
npl -ties
1. the state of things as they are or appear to be, rather than as one might wish them to be
2. something that is real
3. the state of being real
4. (Philosophy) philosophy
a. that which exists, independent of human awareness
b. the totality of facts as they are independent of human awareness of them. See also conceptualism Compare appearance6
5. in reality actually; in fact

(sourced here)

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I've been running a kind of audit in my mind, and trying to recognise how sqewed my thinking can get.  The problem being, of course, that at the time it seems perfectly rational.  I know that this is the aspect that worries Mr Manley the most when he notices I'm sliding in to depression - the cold calm but ultimately flawed logic that he and the kids would be better off without me.  Sometimes I can barely speak, other times I can articulate the thought process that proves, beyond any doubt, just how useless I am.  When I'm well I can see it, but I seem to lose all insight as soon as I begin to sink.

But at the moment I'm in the same world as the rest of you (well, most of you) and I'm trying to find a way to stay here.

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The Reading Residence

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Operation Yewtree and unexpected reactions *tw for CSA*

My father (and my lip involuntarily curls in disgust as I grudgingly let that word flow from my mind through my fingers and onto the screen in front of me) is a violent paedophile.  In July 2000 he was convicted of multiple serious sexual offences against a child and was sentenced to fifteen and twelve years, to run concurrently.  He served eight.  On the Sex Offenders Register for life, he cannot have unsupervised contact with children, including his grandchildren by my brother.  

I haven't had contact with him, my mother (lip curl again) or my brother since court - well, actually since before that.
I've moved on - in some ways more than others, but you know, a work in progress and all that.

I can share the facts of my story with relative ease, and I am utterly clear in my mind that I no more deserved to be raped than I did to be chased around the house with a kitchen knife, or choked into unconsciousness by his hands around my throat, but - according to a few professionals I've met recently - I have little emotional connection to the events of my childhood and teenage years.  They tell me this was most likely a necessary coping mechanism at the time, a survival tactic of sorts, but a hindrance now, since I am safe.  

But that is a story for another day.

The story for today is
Operation Yewtree.

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A report published today deals with some of the findings of Operation Yewtree, naming twenty eight hospitals.

I've avoided press coverage to be honest, although I was aware that one of the first institutions named was Stoke Mandeville.  I knew my father (and my stomach roils again) had worked there, as a porter, and once what I assumed to be mainly speculation began about how Savile could have gained access to the premises which included references to porters I simply ignored the coverage.  I didn't want to know what may have happened there.  But this list, these twenty eight places - as I looked through the names in the BBC News coverage I realised that Stoke Mandeville wasn't the only one that rang a bell in my mind, albeit muffled by the years.  Great Ormond Street.  East Grinstead.  Queen Mary's Carshalton.  And then, "There are also new investigations at Springfield Hospital and Crawley Hospital".

Crawley.

I lived in Crawley until I moved to Bristol, and he (spits on floor) worked in the hospital.

When you look just a little more closely at the allegations and findings (although no report has yet been published on Crawley Hospital since the allegation was only made in April of this year) none of them seem particularly damning (relating to the hospitals mentioned above - this is not meant in any way as a comment on the more substantive allegations) - for example the information given in regards to Crawley Hospital so far is simply that Savile was seen at the hospital, and so potentially could have offended there.
Not exactly what you'd call conclusive.

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Faced with even the highly unlikely possibility of Savile's abuse linking to the hospital where I was born, the hospital where my father (ugh) and mother (even more ugh) both worked, possibly even to my father (blergh) himself - it made me feel physically ill this afternoon, 
and inspired ... panic.

I took to twitter (as one does), asking whether I should be knocking on the door of Operation Yewtree (metaphorically speaking), giving them his name, pointing them in his general direction, flagging him for their attention.  Thanks are owed to Daniel, Drama Llama, Mr Boos mum, The Ninja Worrier and Donna Wishart for their support - strange how heartening it is to know that you've passed through the mind of someone, somewhere, and they have taken a moment to let you know you were there.
I have now resolved to pass on the info I have, though as a sex offender who was working at the hospital at the time he may well already be on their radar.

As blasé as I can be at times, sometimes the past still catches me out - a sudden sharp hot spike stabbing me in the chest, stealing my breath, shaking my mind.  The strength of my reaction shocked me this afternoon, so who knows, maybe my emotional connection
to the events of my past is kicking in -
the professionals will be pleased.

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Thursday, 26 June 2014

Can a label be a good thing?

I have a question for you all ~ are there labels out there which you are prepared to accept (or passionately resist)?  Other facets of your life, other parts of who you are, what you do, who you consider yourself to be?

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I struggle with some of the labels that get thrown at me ~ check this out for one that I can't stand ~ partly because these might not match up to the way that I see myself, but also partly because I hate the idea that what I am ... who I am ... is so simplistic that it could be summed up in just a few words.  I wonder if that comes from an inherent need to be different, to be special, to be unique ~ no idea who said it, but consider this ~ yes, you're absolutely unique ... just like everybody else ...


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Personally, I think it's the vocab and phrasing I find difficult to swallow.  In my mind there's a world of difference between a label and a definition.  While I have, over the years, had many labels ~ some of which I've stuck on myself, others of which have been attached to me by other people, I would not consider them to define me.  I find it empowering to pick and choose labels, like penny sweets in an old~fashioned newsagents ... today I'll be a charades champion ~ Petal and I are the winning team so far; a cook ~ brownies for Brownies for pack holiday;  a blogger, since I'm writing this;  a record keeper, with Smiler's appointment last week to log in his ever expanding file;  a carer, since we're on nosebleed alert complete with a pile of gauze swabs and extra meds.  Others are more elemental, including (for me) woman, parent, lover, partner ~ while these are not necessarily permanent, they are basic in that if they are somehow 'lost' they would shift my perception of myself.

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The tricky thing about labels is that, to some extent, as much as we might resist them on an individual basis, they are, or at least can be, useful, like a badge of membership, a shortcut which explains (at least a facet of) your role.  I'm involved with Bristol Parent Carers ~ a group committed to working with parent carers and services (NHS, education, social care) to improve our little corner of the world, to try and either level the playing field or else improve  wheelchair access, better lighting, and equalities training for the staff.  By waving the parent carer card, by positively taking ownership of it, BPC have been able to evolve into an organisation whose input is actively sought by the Local Authority and others on various different issues.

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Maybe it's to do with choice, and control ~ if as individuals we stick on our own labels and feel able to peel them off as desired, we're okay with that, while in contrast if we are labelled / pigeon~holed / judged / assessed by others, we lose that autonomy, that ability to pick and choose who and what we are.  Perhaps underneath all those labels, all those luggage tags and all the post~it notes, underneath those basic building blocks, those weighty words and complex categorisation, what we really are is ourselves.

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Monday, 23 June 2014

Point + Shoot


Bristol Green Week, including a cadbury creme egg car!

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Apple bobbing in the paddling pool

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Playing in the fountains in the city centre

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Potato harvest!

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UV Swim Shirt :: reviewed by Noah

I was excited on Noah's behalf to be chosen by The Beach Factory to review a UV swim top - he's eleven you see, and therefore far too cool to be excited by anything...or is he?

First impressions


When the Tshirt arrived in the post my initial thoughts were that it was very lightweight, and beautifully silly and smooth.  The design on the front was bright and clear, and the seaming left no raw edges inside that might rub.  The sizing and washing info was printed inside, at the nape of the neck, so thought had clearly been applied to ensuring the wearer was comfortable and not stabbed by scratchy labels at an inopportune moment!



Fit


Noah is the tallest in his school year, wears size 6½ shoes and either 12/13 or 13/14 clothes (taking after his 6'3" dad it seems!), and we'd been sent the 13/14, which fitted really nicely.  Noah has a comparatively long torso, and often finds that tops which fit comfortably across his shoulders are too short in the body, but not the case with this top at all.  The sleeves were a reasonable length too - something else Noah often finds to be a bit on the short side.



Features


I should draw your attention to the fact that while it's a UV protective top (UPF 50+), wearing it to the beach will not necessarily result in sunshine...  Although it clearly wasn't an issue on our holiday, I love the idea of a top that offers protection from the sun - no fuss, no mess, just so so easy.  I don't know about anyone else but (a few years ago) trying to smother three under-threes in sun screen for a day at the beach was a nightmare for me, so being able to trust an item of clothing to take care of this for you (for the whole day, not just for a couple of hours or until they get wet!) would have been fab!  For authoritative information and advice regarding staying safe in the sun please check out  SunSmart.  It also occurred to me that for children/young people or even adults that struggle with the physical sensation of cream on their skin these would provide the protection they need from the sun without risking a sensory meltdown - there are long sleeved versions in a range of sizes that would be perfect for individuals with tactile sensitivity or sensory integration disorder.

Although the protection from the sun feature may be one of the Tshirt's principle selling points, it certainly doesn't restrict its use - Noah is happily wearing it all over the place: rockpooling in the rain; putting a tent up in the garden; walking Eli and getting caught in a thunderstorm; the glorious unpredictability of early summer in the UK!



Over to Noah...


  • I like it, it's a good top.
  • It doesn't stuck to your body, even if you're running around and you get really hot.  Ordinary tops are difficult to take off sometimes if you've got all sweaty, but this one was easy.
  • I don't like Tshirts that are just black but this one had cool writing on the front and on the back with other colours on so it looked good.
  • It's easy to move about in, so when you're stretching and stuff it doesn't get in the way, and it doesn't feel tight anywhere on me.
  • I had it on in the paddling pool and it got soaked but it dried really quick, so I could still wear it later.
  • I wear it when it's sunny and when it's rainy too, and it feels nice on my skin.


Final thoughts


Judged 'cool' and much beloved by my pre-teen - not an easy feat.  
Dries unbelievably fast, on a child or on the line, which is always going to be a big plus!
Comfortable, suitable for any dry activity as well as a multitude of wet ones.
Provides a level of peace of mind when out in the sun, and saves on time and money on suncream.

Definitely worth having in your parenting arsenal this summer, and this Quiksilver Tshirt as well as other (equally snazzy) designs available from here.  Delivery is free if your order comes to £30, and there's swimsuits, googles, sun hats, picnic blankets and plenty of other sunshine essentials from which to take your pick.  Word to the wise, check out their beach bags - important to have a bag big enough to put the towels and drinks and books and sunscreen in after all...

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Thank you, Beach Factory, for giving Noah and I the opportunity to try out this item from your range!

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The Tshirt was provided to us by the Beach Factory free of charge to review.  All thoughts and opinions expressed in this post by myself and Noah are genuine.

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Sunday, 22 June 2014

silent sunday


Shhh...

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#SilentSunday

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expressions


Noah spends so much of his time reading and doing homework and being a very self aware 'tween', I love to see him like this - playing in the paddling pool on a hot day.  
An expression of enjoyment.
A face filled with pure joy.
Pure love of life.

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Friday, 20 June 2014

word of the week

A mixed week here in the Abstract household, so the word I'm choosing for this #WotW link up is 
pride

pride   (prd)
n.
1. A sense of one's own proper dignity or value; self-respect.
2. Pleasure or satisfaction taken in an achievement, possession, orassociation: parental pride.
3. Arrogant or disdainful conduct or treatment; haughtiness.
4.
a. A cause or source of pleasure or satisfaction; the best of a groupor class: These soldiers were their country's pride.
b. The most successful or thriving condition; prime: the pride of youth.
5. An excessively high opinion of oneself; conceit.
6. Mettle or spirit in horses.
7. A company of lions. See Synonyms at flock1.
8. A flamboyant or impressive group: a pride of acrobats.
tr.v. prid·edprid·ingprides
To indulge (oneself) in a feeling of pleasure or satisfaction: I pride myselfon this beautiful garden

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Things have been difficult over the last few weeks here, but I've really been trying to look on the bright side.  Hasn't always worked, but this week we had something to be really proud of - we had Smiler's annual review. Although technically a review of his statement (Statement of Educational Needs) at Briarwood this is taken as an opportunity to share what he's been getting up to over the academic year, with the Statement related bit at the end.

With a child like Smiler you learn pretty early on that the usual milestones are not going to feature widely in your life, but hopefully you find that there are little steps, little milestones that you can celebrate instead.  Things that parents with ordinary children barely notice can be a source of incredible pride - for this child, after all, these tiny steps are a big deal.

So, Smiler's review.  He's settled in really well, his class teacher tells us, and he's been a big hit with the staff too.  We talked about all sorts of things, from his mobility to his seizures to his love of books and music.  He's progressing in many areas, and while there are concerns over his choking what we hear is mostly positive.  Smiler came in for part of his review, sharing his achievements by showing us photos on a touchscreen.  Because he always touches twice (don't ask me why!) his teacher had got around this by putting every picture on twice in a row, so we still got to see them all.

For Noah and Petal, we talk reading levels and SATs and maths.  For Smiler we talk holding a pencil and recognising his name written down.  But the pride I feel is the same - it's not about what they achieve, it's about how hard they try.

Smiler's teacher recounted a situation that had occurred last week in class - a child had been very agitated and unwilling to communicate with the adults in the room.  Smiler had stood and bumbled over to the other side of the room, and started delving in the box of outside activities - balls, parachute, masks  and chalk, and after a couple of minutes of concentrated activity, Smiler triumphantly pulled out a musical toy - a stretchy wristband with bells on - and called 'faddit' (found it) as he walked across the classroom towards the distressed child.  Repeating 'faddit, me faddit!' as he approached the child, she seemed to calm a little, and a member of staff moved out of the way so Smiler could get closer.  Smiler handed the bells to the child, who began shaking them vigorously, smiling at the sound she knew she was making.  Smiler returned to his chair, telling a member of staff 'fine now, faddit, fine now'.  
His teacher, visibly moved while sharing the story with us, explained that Smiler was going to get a certificate in assembly at the end of the week for being thoughtful, and for being a good friend.

These tales mean a hundred times more to me than how his writing skills are progressing (they aren't) or how high he can count (to 3, with verbal and physical prompts).  These tell me about the person he is, and the adult he will become, and I am so proud of him.  He cares about people, and when his friend was distressed he found a way to help her feel better, and isn't that more important than numbers and mark making?  I'm so proud of you Smiler - you are becoming an incredible young man.

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The Reading Residence

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Tuesday, 17 June 2014

lemon meringue birthday roulade - kind of

Rather than make traditional birthday cakes, for the last couple of years we've been branching out a bit.  We've had birthday brownies, strawberry and chocolate meringue cake, and for Petal's birthday I decided I'd do a lemon and white chocolate roulade - sounds tempting, right?

Mr Manley emailed me a link to a lemon meringue roulade which looked very tempting, and it was only when I actually read the list of ingredients that I realised there was no light sponge in it at all, but a meringue layer instead.  In retrospect I should probably have stuck with my original idea, but ... well, twenty twenty hindsight, you know?

Anyway, even though it didn't turn out the way I might have hoped, I wanted to share with you - I'll explain the rationale at the end!

The recipe Mr Manley found was this one, on the Nigella Lawson website, so while I'm repeating the ingredients and method from there, it is not my creation - I'm just trying to make it a little easier for you to follow in case you want to have a go.

There are a couple of adjustments that I made however, which (even bearing in mind the end result!), I do think make sense.

Ingredients ::


One batch of Lemon curd

Meringue::
Four egg whites
225g sugar

Cream::
250g mascapone
300ml creme fraiche
1½ tbsp sugar

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I messed the order around a little at the beginning - the recipe instructed you to make the lemon curd first, bearing in mind it needs to have cooled by the time you're putting everything together at the end.

I made my lemon curd the day before, but began by separating the egg whites and yolks, technically the first step of making the meringue layer, and adding the yolks to my lemon curd, making it even more velvety (using 2 eggs plus these four egg yolks)

Monday, 16 June 2014

my reading habits

Yesterday evening I spotted a tweet from the ever so lovely Laura of My Life As a Mummy about taking part in a meme about reading habits, and you can read her post right here.  I couldn't resist - I've loved books for as long as I can remember.  The  allure of stepping into another world or being inside someone else's head was always such a draw - being immersed in someone else's life always felt safer than being me, living my life (which in all honesty it possibly was).  Obviously my tastes have changed over the years - from Judy Blume and Douglas Adams to Terry Pratchett, Jodi Picoult and Karin Slaughter.

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Do you have a certain place at home for reading?


Tucked under the covers in bed, sat on my snazzy new garden chair on the patio, laying in a hot bath full of bubbles, snuggled up in a blanket on the sofa, laid out on a picnic blanket in the garden - pretty much anywhere I can get comfortable.

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Bookmark or random piece of paper?


Random bits of anything - Asda receipt, a bit of ribbon, a sweet wrapper, those cards you spray perfume on, a post it note...

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Saturday, 14 June 2014

expressions


I love this picture - Mr Manley finds it really hard to relax if he knows there's a camera about, but this was a lucky shot when he was messing around with Noah and Smiler.  

All three of them look happy and relaxed, but it's Mr Manley's expression that really gets me.  He takes everything in his stride, from our first child having such complex needs to me struggling with mental health issues, and I love him very much.  With Smiler pressed against his back making faces at Petal and I, Mr Manley could hear Smiler giggling.  Mr Manley twisted just a little, and even though he still couldn't see Smiler, he relaxed as Smiler laid his head against him.

Mr Manley and his boys.

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elderflowers :: picking {a family photo story}


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Country Kids from Coombe Mill Family Farm Holidays Cornwall

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Friday, 13 June 2014

word of the week

My word of the week this time around is kind of a confusing one.  For me anyway.  Linking as always to The Reading Residence, my word this week is :

panic

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pan·ic   (pnk)
n.
1. A sudden, overpowering terror, often affecting many people at once.See Synonyms at fear.
2. A sudden widespread alarm concerning finances, often resulting in arush to sell property: a stock-market panic.
3. Slang One that is uproariously funny.
adj.
1. Of, relating to, or resulting from sudden, overwhelming terror: panicflight.
2. Of or resulting from a financial panic: panic selling of securities.
3. often Panic Mythology Of or relating to Pan.
tr. & intr.v. pan·ickedpan·ick·ingpan·ics
To affect or be affected with panic. See Synonyms at frighten.

[From French paniqueterrified, from Greek Pnikosof Pan (a source ofterror, as in flocks or herds), groundless (used of fear), from PnPan; see Pan.

(Sourced here)

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In case this is your first time here, a quick intro - I have three children (as of Wednesday) aged 10, 11, and 12.  Smiler, the oldest, has a wide range of complex health conditions (including haemophilia and epilepsy) along with a severe learning disability.  Petal, the youngest, is healthy and has no such issues.

But when she was at a school camp, Petal was rushed into hospital with a blown pupil and difficulty with coordination.  The staff in A&E were very concerned, but after many many tests and checks could not find anything else wrong, and her symptoms were gradually improving, so she's now home and fine.

I am the hospital parent in our family.  I couldn't cope with being at home with the other two, sorting packed lunches and school runs, while Mr Manley is the opposite, so it all works out very well.  Smiler and I have passed through A&E probably ten times or more in the last six months, mostly with spontaneous nose bleeds, possible broken bones, and repeated jaw dislocations.  Petal, on the other hand, had never spent a night in hospital, or even been seen in A&E.
Until now.

I was panicking.  I cried in the car on the way to meet her at the hospital, I could feel myself shaking as I saw her eyes, knowing very well from Smiler's neuro issues as well as my own that this could be very very bad.  The barely constrained panic only became more intense when I watched the faces of the staff as they saw her eyes, and went quiet.
From too many nights on various wards and too many hours in A&E I know that quiet and apparent total calm mean that very often it is time to worry.

I can calmly hold Smiler down for blood tests, put him in a headlock as I apply pressure to stop a nosebleed, watch him being anesthetized - I don't shake, I don't cry, I just get on with doing what needs to be done.  

But Petal - I panicked.

She's home now, complete with a list of follow up appointments for the next week or so, and peeved that she missed school camp.

But me - I thought I could deal with doctors and hospitals and the emotions that come along with them, but it turns out I can only cope if the child in question is Smiler.
Does that mean that I wouldn't be as upset if he became very ill?
That I think his pain doesn't matter?
That I love him less?
I don't have the answers.

But this is why my word of the week is panic.

At the time, because I was scared something was wrong with my daughter.
And now, because I'm scared that I'm not more scared when it's Smiler.

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The Reading Residence

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Plymouth National Marine Aquarium


This visit to Plymouth National Marine Aquarium was one of our holiday 'proper days out' which means it was something we had to pay to do.  I don't know if that seems really stingy, but to be honest we just don't have the money to go everywhere we'd like to.  This means on our trips we take our lunch with us, we take drinks, we rarely buy anything from the gift shop - postcards are about our limit!


Prices ::


Speaking of money, there were a couple of things I wanted to say about the entrance prices for the aquarium.  We always take a letter with us regarding Smiler's disabilities, although (whether it's politically correct or not) we rarely get any further than getting it out of his bag before they tell us they didn't need to see anything.  One of those times that a clearly visible indicator of disability is a positive thing, and between the wheelchair, Smiler's allegedly dysmorphic features and his and our signing to communicate, we seem to tick the box.  This meant that we paid £9.75 for his ticket, and Mr Manley went free as his carer.  I was surprised to be told that the tickets were valid for a year, which is a great deal for locals - I only wish that Bristol Aquarium did the same!

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Physical Accessibility ::


The website states that the aquarium is "accessible by ramps and lifts throughout", and although strictly speaking this is true, it would be great if the lift could fit more than one wheelchair / pushchair in at a time - Smiler and I joined the lift queue with six other 'loads' in front of us, which naturally took a while to work through.  If the aquarium was an old building that would be too expensive to improve access throughout then that would be different, but when you join that long a queue you can't help but sigh.  I don't think it is important that the others in the queue were all parents with pushchairs, it doesn't make any difference as physical access requirements are broadly the same, which in my mind makes this an issue for families in general.

Something else that occurred to me while I waited was that it seems unfair that families have to split up because of the size of a lift - the family directly in front of us seperated into mum plus babe in pushchair for the lift, and dad plus quite toddly-toddler headed off, followed closely by Mr Manley, Noah and Petal.  Maybe something that isn't felt so keenly when you know in another year or two you'll all be walking, but one of those very gradual crushing details that get to you when you've already been doing it for more than twelve years.

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Love love love the photos I took around the aquarium - seems that my camera has an enchanted postcard setting sometimes!  That one just up there, with the light filtering through the water picking out the highlights of the fish (and the shark!) - a freeze frame of motion through the water...
*smug*

Wednesday, 11 June 2014

The Photo Gallery 188 :: Detail


This is a jellyfish at Plymouth National Marine Aquarium - my daughter and I were transfixed by the fringe of tiny filaments highlighted by the movements of the water that surrounded them.

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What One Does Not Do

I grew up knowing that certain behaviours were unacceptable.  

One did not put one's elbows on the table.  
One did not wear shoes in the house.  
One did not answer back.  

My father was violent and abusive, my mother too scared to leave him, not because of his reaction, but because she was terrified of being by herself, terrified of admitting this man she had defied her parents by marrying was, as they had thought, not a good person.  

One did not put one's feet on the furniture.
One did not tell one's teacher how one got a black eye.  
One did not ask questions.  

I have contrasting memories of a patient, doting, storybook mother, affectionate and smiling and gentle, and a woman akin to a storybook stepmother who looked at me with disgust and disappointment and distain, and treated me with barely constrained abhorrence.  It's difficult to allow my mind to linger on the memories that make me smile or even to acknowledge that they exist - to do so means those that leave me crying feel even sharper, even hotter, even more heartbreaking.

One did not scribble on one's pencil case.
One did not interrupt.
One did not use more than one tablespoonful of shampoo.

When I was small my mother would have me near her, while she carried on with whatever jobs needed doing around the house.  I remember sitting up to the dining room table and watching her thread her sewing machine.  I remember standing next to her as she simmered oranges to make marmalade.  I remember sitting on as stool next to her armchair as she knitted another tiny white cardigan for a work colleagues new baby.  


One did not cry.  
One did not read after bed time.
One did not fold down the corner of the page of a book.

I was told, often, that I was worthless, unloved, unwanted.   On one of the cold days that followed every argument I remember my mother looking straight at me, perfectly calm and controlled, and explaining to me that had she known the kind of person that I was going to be before I was born, she would have 'taken care of it'.  She looked away, gazing out of the window for a moment, then turned back to me, leant in close and whispered as she looked in my eyes 'You ruined everything.  You ruined my life.'

One did not answer the front door, or the telephone.  
One did not leave any food on one's plate.  
One did not say no.

And now I have a daughter.  Her name is Petal.  She has never been in the same room as the woman who gave birth to me.  She has never heard the sound of her voice.

My daughter will put her elbows on the table.
My daughter will forget my birthday.
My daughter will complain about me to her friends.

I want Petal to know that jam is made of fruit, and that it's not hard to make.  Even if she never does it.  I want her to have it on that mental list of 'stuff to do one day, maybe'.  Along with sewing up a hole in a sock, icing a birthday cake, making a run for a guinea pig, and learning how to waltz. 

My daughter will be certain I do not understand her.
My daughter will break things and blame her brothers.
My daughter will shout at me.

I hope that she will continue to ignore what some consider to be the constraints of her gender, whether that means playing in the mud or choosing to paint her bedroom blue or camping in the garden and having a never-to-heal scab on her knee, but I hope she will also have the strength of character to paint her room pink, if that is what she wants.

My daughter will wear clothes that I do not approve of.
My daughter will slam doors.
My daughter will accidentally on purpose forget to do her homework.

Petal has watched yarn grow into a blanket over hours on my lap, seen it finished, and snuggled up with it in her bed.  She has wrapped it around her on the sofa, and I have told her that every time she holds that blanket around her it's as if my arms are around her, giving her a hug.  Soppy I know, but sometimes she catches my eye when she's wrapped up and I know exactly what she's thinking.

My daughter will answer the front door, and the telephone.
My daughter will cry.  Cry hot hot tears over the loss of a pet, a boy, a sticker, a girl.
My daughter will put her feet on the furniture.  Often.

Petal is almost ten.  She loves roller coasters, she sings along to the radio, she wants a pet of her own.  She will be fifteen, then twenty, then twenty five.  She will live a life away from me, full of dreams and smiles and a little bit of heartbreak.

My daughter will make mistakes.
My daughter will lie to me.
My daughter will know that she is loved.  Every second, every minute, every hour, every day.

Monday, 9 June 2014

A&E ... with Petal for a change!

Those of you who follow me on Twitter are probably aware that my weekend did not exactly go to plan.  I know - shock, right?

Dropped Petal off at school on Thursday, complete with sleeping bag and toothbrush - it was time for the much anticipated for one night only school camp! Yay!

Phone call at around 8pm - She's fine, but we're on our way to the children's hospital - could you meet us there?

Clearly she's not fine or you wouldn't be on your way to the Children's Hospital!

Turns out one of her pupils was wide and inky black and the medical advice they had received was to take her immediately to Bristol Children's A&E, and if they were more than twenty minutes away, to call an ambulance.

Cue the next door neighbours teenage son settling on our sofa, eating the pizza Mr Manley and I were meant to have been having for tea.  So there's me, sitting in the front of the car, clutching the blanket that was mine but I knew she wanted for herself.  I was pale and silent and still, but inside my head I was screaming and panicking - I knew a lot about the ways in which pupils reflect what is going on inside our brains, and I knew this could potentially be ... well, several very bad things.  I grabbed Mr Manley's jumper as we kissed good bye, not wanting to let go.  As I looked at him all I could think was that by the next time I see him everything might have changed.  

I was there before Petal - I guess Mr Manley speeded up on approaching more orange lights than the three I had noticed.  Fast forward twenty minutes, and Petal and I were sat in resus.  She was worn out, having been swimming twice and walked just over five miles, but was finding the whole thing pretty exciting - oh to be nine years again and have absolutely no sense of your own mortality!  Apart from feeling a little queasy and having a slight headache, she seemed fine.  Her pupil was completed dilated (so none of the iris was visible) and it was fixed - it didn't contract at all, even when a bright light was aimed directly at it, which should have shrunk it to just a couple of millimetres across, instead it remained at about 14mm.

Possibilities included an aneurysm rupturing, a tumour, or a stroke.

Saturday, 7 June 2014

expressions


Oh come on mum can you just take the photo I've been standing here for three whole seconds already and I do have a life to be getting on with you know

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a day at the (garden) zoo {a family photo story}


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Triggered by our visit to Dartmoor Zoological Park (also known as the We Bought A Zoo zoo ), Petal and Smiler decided to open a zoo in our garden.
Of course.

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Thank you, zoo keepers!

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Country Kids from Coombe Mill Family Farm Holidays Cornwall

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