Thursday, 30 May 2013

Westonbirt in the spring

Mr Manley and I visited Westonbirt Arboretum last week, to have a couple of hours of hours just being together, instead of chasing around the house doing all those things that need organizing before we're invaded by kids.  We tend to visit in the late summer or autumn, as well as for the Enchanted Christmas event, so I was expecting less range of colours, less impact somehow, but that was certainly not what we found.

I got a bit dizzy halfway around so didn't get many photos, but the ones I did get are just so full of colour ~ take a look.

Tuesday, 28 May 2013

bad mother alert

In WHSmith a couple of days ago, I was nosing around on the clearance shelf (as one does...) and wondered ~ just who it is that buys the fancy letter writing set that is missing the writing paper and pen (so just some fancy envelopes then...) ; and the occasional dried up pritstick with no lid?  Very cheap Christmas wrapping paper in May I can understand, but scratch and sniff stickers that have been decorated by a stationary tsunami of black ink?  Really?

Saturday, 25 May 2013

not a victim : pieces of me

This posts is not explicit but may trigger uncomfortable emotions in some individuals who have experienced abuse.  Please take care of yourself.

I understand
 that long slow spiral into 
the depths of pain and darkness that can open up in your world, follow close behind you as you take each step
I've slid down it 
more than once 
Maybe you can feel when it's catching you up
that prickle on the back of your neck
the sensation that if you so much as
glance over your shoulder
 it will win
and you'll lose
including yourself.
maybe it creeps up so quietly
 that you only register its presence 
after it has swallowed you whole
you aren't even fighting to get out
I  still slip into that darkness at times, but climbing out 
is a little easier than it used to be, now I know there is 
a hand stretching towards me within the dark,
straining right through past the tips of his fingers to reach me.
Sometimes I have to struggle against 
the stories my mind is telling me, 
the names echoing around my head
the cruelty and viciousness with which I treat myself, 
and trust instead 
his perception of me
At first I feared losing myself by relying on him,
but now I know he gives me strength.
I lived through infinite curls of pain
a Möbius strip of despair
hatred thick like oil, 
oozing up between my toes with every tentative step
sucking  and
slurping and 
sticky and 
But now I'm free
and clean
standing up
and loved
and needed
no longer alone
and safe
and calm
I'm me
I'm me

Thursday, 23 May 2013

been there, done that, got the xrays

I wanted to gather some of the bits and pieces to do with Smiler's hips together in case it could be of help to someone else.  I remember searching the internet when Smiler was diagnosed and completely failing to find anything on a child over about four, and  that can leave you feeling very much out on your own.  I've also covered the out of the blue diagnosis, looking into our options, and what life was like with Smiler in cast, and I'll write about the blips before the op another day.  This is some of the technical stuff to do with the op, as well as some of the equipment we used while he was in cast.  

Smiler had broomsticks ~ upper thigh to past ankle in plaster on both legs, braced with what literally was a piece of wood ~ hence 'broomstick' ~ from one knee to the other, so his lower body was like a capital A.  He was (and still is) dependant on nappies, but being in broomsticks rather than a full spica meant there was a lot less worry about leaking.  His wounds were on the outside of both thighs, approximately 25cm (12 inches) long, which meant part of each was under the cast.  He had a couple of smaller wounds on his lower abdomen, where some of the surgery had to be done from that side. 

* * * * *

Tuesday, 21 May 2013

the day we bought a tree

The trees just behind our back fence were cut down, which meant as well as losing our bird box location, we also lost all the shade from the garden, and Little Miss Springwatch also lost the shade and roof of her 'wildlife corner' ~ think bug houses, piles of sticks, a couple of logs to sit on campfire style (rescued via a friend with a  flatmate in the tree surgeon business).  Along with Petal's precious hand sewn wildflowers there are the remnants of the last couple of years sunflower competitions seed heads, as well as a solitary bee house and plenty of mossy stones.  So, the solution was obvious ... apparently.  We needed to go buy us a new tree!  Mr Manley had found a tree nursery not too far away, so we all bundled into the van, not really knowing what to expect.

Turns out, lots and lots and lots of trees!

I think I was probably anticipating a very loosely organised garden centre, all over the place, puddles everywhere, and hand~scribbled price labels.

Boy oh boy was I pleasantly surprised!

Arranged in rows, hooked up to an extremely organised and effective irrigation system, breeds arranged alphabetically ... Is it breeds with trees, or are you supposed to say 'species' or something?  Anyway, I'm  pretty sure you know what I mean.  So so so many trees.  All very orderly, in lovely straight rows that the kids just had to run up and down! 

Some just a tad out of our price range though . . .

Call me naive, but I had honestly not ever thought before about where trees came from.  They were just always around, you know?  We've planted a few fruit trees in the garden, but I hadn't really given much brain space to where you'd get other ordinary trees from.

 There was so much choice, I felt overwhelmed.  Like a child faced with shelves of sweets, I didn't even know where to start.  Such a wide range of colours of leaves, types of bark, tall trees, wide trees, trees with thick growth to block out light, trees with floaty almost ethereal branches, swaying in the wind ... 

Since we had to start somewhere, we decided we wanted blossom, mainly because there's a Charlie and Lola book which mentions cherry blossom rain.  For the record, I'm well aware that for most families their literary choices are entire separate from their horticultural choices but hey, most children probably don't get charged chocolate tax on their easter eggs either.

This didn't actually seem to narrow our choices much though, so Mr Manley went on a wonder and found a booklet which told us this one had a vigorous upright habit, that one has gently arcing branches, and the one over there was resistant to oogily boogily disease ... okay, yeah, I made that last one up.  Ever so reluctantly, we realised we were going to have to ask for help.

I hate having to ask questions about things I don't know anything about ~ I'm always afraid I'll be completely confused by the answers, but have to nod along and pretend I know what they're going on about ~ so I made Mr Manley do it instead.  Imagine my surprise when the tree expert lady explains the technical bits in a completely non~condescending way, understands our literary need for blossom of some sort and makes a couple of suggestions!

So, it was decision time.  Ever the democracy, we narrowed it down to two choices that fit all our criteria (yes Smiler, it will have blossom), and voted.

Smile and I sat in the car while Mr Manley did the money bit ~ about £40 I think, which seems like a pretty good price for a tree that professionals have been carefully tending to for five or six years ... there should be something like that for children ... hang on ~ adoption!  Why didn't I think of that before?!

Anyway, the afore~mentioned lovely lady wrapped the tree up in clingfilm (or some technical tree wrapping stuff that looks a lot like clingfilm), and after a brief tussle between the 15 foot tall tree wrapped in clingfilm and the van containing two adults, three children and one dog, we were on our way home.

So, to name and shame (or whatever the opposite is ~ recognise and reward perhaps?) ~ it's you ~ Chew Valley Trees!

If you have a moment, please do have a read of their history ~ they are one of those businesses that clearly know their stuff and value their customers and have (thankfully) not been edged out by huge corporations such as B&Q.  I absolutely would not hesitate for a second before returning to them if I ever need another tree, and I really hope that you have the opportunity to visit them too!

Thank you, Chew Valley Trees

Saturday, 18 May 2013

The Children's Trust and National Doughnut Week

I usually find out about these things too late, but a little birdie (twitter ~ little birdie ~ geddit?) told me that this week is ~ wait for it ~ Doughnut Week!  Woohoo!  After Marmite Day and Star Wars Day (slightly embarrassed to admit that I only understood the whole May Fourth thing after it was explained to me by three separate kind~hearted patient people), it's about time for something I like, and doughnuts definitely fall into that category.
At least they would do, if I didn't catch them on the way down and gobble them up . . .

Doughnut Week is an opportunity to raise funds for The Children's Trust, an amazing charity which provides support, information and rehabilitation to children with acquired brain injuries, complex health needs and multiple disabilities.  If you'd like to make a donation I know that it would be gratefully received ~ just click here to see how.

So, in honour of 
The Children's Trust 
National Doughnut Week
 I bring you
Doughnut Bread!

Thursday, 16 May 2013

which kind of pregnancy do you do?

I have a brand~new~so~shiny~you'll~need~your~sunglasses theory to share but it's going to take some explaining ~ not sure it makes complete sense yet, but I hope you'll stick with me and let me know what you think.  I'll warn you up front ~ it's a long post ~ it kind of had to be so I could explain properly, but there's some pretty scenery on the way, if that helps!  The entirely unrelated photos are of my garden in the sunshine, just to prove that, despite the rain, we do get some gorgeous weather here in Bristol.

It all starts, the way so many things do, during pregnancy.  You'll have to forgive the gross generalisations by the way ~ that's just the way this goes.  While it may be true that no two pregnancies are the same, it's also true that there are two broad classes of pregnant ~ just read on to find out how this works!

Monday, 13 May 2013

more clouds than sunbeams?

Collin Brewer.


Going there.


You seem to be pretty unaware of the public outcry after the Disability News Service published that article.  Might that be because of your own health problems?  Perhaps.

You remind me of that poster in school ~ you know, the one that starts 'if children live with criticism, they learn to condemn', and I wonder what your home was like when you were growing up.

The sun is shining through the window now as I type, and I wonder if your childhood contained more clouds than sunbeams.  More wolves than sheep, more foxes than gingerbread men, more wicked stepmothers than Cinderella's.

Mine did.

But I am more than my past.  

In the same way as my son is more than his karyotype.

More than a list of health conditions.

More than a developmental checklist.

He is a child.  
He squeezes balloons.
He hugs his sister.
He enjoys looking at books.
He plays in the garden.
He goes to school.
He pretends to swordfight his brother.
He strokes our dog.  
He takes pride in his appearance.
He splashes in the swimming pool.
He makes a mess in the kitchen.

He is a child.
He loves.
He is loved.
And this is enough.

not a victim : twelve people

{Please be aware that this post, although not explicit, may contain triggers ~ please take care of yourself}

My statement went to the Crown Prosecution Service (CPS), along with my doctors notes which I was told later had "?abuse" in the margins at numerous points, including the appointment when my mother asked that I be put on the (contraceptive) pill when I was eleven, claiming I had unmanageable PMS.  The statements made by my father, mother and brother (two years older than me) were submitted too ~ don't know what they said, though I could hazard a guess.

The CPS decided to prosecute.  My father was charged with multiple counts of rape, attempted rape, gross indecency and indecent assault.

* * * * *

Sunday, 12 May 2013

Brewer~Wolf : Once Upon A Time

Here I am with a keyboard in front of me, a topic in mind, and I'm really not sure where to start.

It doesn't happen often, my being rendered speechless.

Collin Brewer.

Yep, that one.  

The one that said that thing.  He's gone and said something else, in an attempt to justify the first thing.  Trust me when I say it is most likely worse than you think.  Really.  That bad.

I'm saving my proper venting til tomorrow (mainly because when I try to write how much it hurts to realise that there are people out there who think like this it hurts too much) but in the meantime, have a read of The Cautionary Tale of Brewer~Wolf and the King's Gold.  

Saturday, 11 May 2013

the boy with the flip top head

A couple of weeks before Christmas Smiler had a run of nosebleeds, and the very beginning of a cold ~ you know when you can see it coming  in the colour of their skin, the look in their eye, the way the talk, the way they behave?  One of the indicators with Smiler is that he starts yawning.  A lot.  Proper baby~like yawns ~ you know when their entire face is completely taken up with the yawn?


Credit where it's due, he doesn't do these things by halves ... Does it make you want to yawn?

Thursday, 9 May 2013

Smiler leads the way

Okay, so I've done some baby stuff, some pre surgery stuff, some post surgery stuff, some genetics ... What next?

How about a slice of life from the abstract house ~ otherwise known as 'They did what? Really?' 

At the weekend we were getting ready to take Eli out for a walk, and Smiler wanted to put Eli's lead on .. sounds reasonable, right?  So I got the lead down from the hook, and hand it to Smiler ~ 'Go on then Smiler, put Eli's lead on!'. Of course I know he won't be able to, but hey, it'll keep him busy for a minute while I turn the radio off.

I glance over my shoulder, and there's Smiler, lead in hand, leaning down towards Eli, who's sat still at Smiler's feet, looking up at him expectantly.

Radio off.

Turn back around.

And Smiler is laid flat out on the kitchen floor, giggling hysterically, arms flailing halfheartedly, the dog lead wrapped around and around his right ankle (don't ask me how!).  Eli, stood on Smiler's chest, enthusiastically slurping his face in an extremely noisy and appreciative manner.

I love how ordinary family life can be completely derailed in a matter of seconds . . .

What's the funniest situation anyone in your life has managed to end up in in just a few seconds?

Tuesday, 7 May 2013

he has a what?

Folks have been asking, so I'm going to try and explain Smiler ~ very much easier said than done!  Everyone take a deep breath ...

Smiler has a unique genetic condition ~ an unbalanced translocation of chromosomes 13 and 15.  The vast majority of us have two copies of each chromosome, but Smiler has one 'normal' (don't get me started) chromosome 13 and 15, but instead of one more of each he has about half of 13, and attached to it, a chunk of his second 15.

With me so far?  Great ~ onto some mythbusting . . .
It is a genetic condition.  Every cell in Smiler's body carries this fault, and has done since the moment of conception ~ it's not something he 'caught', and it's not something others can catch (we have been asked...) by being around him, or breathing near him, or, well, you know, all those other ways people catch things ~ he could lick your face repeatedly (which he would happily do, given the chance!) and your DNA would be safe.

Monday, 6 May 2013

TWO legs in plaster? At the same time?

So, after finding out when Smiler was almost eight that his hips had been dislocated since birth, and wondering around the country trying to find a treatment option that would hopefully not drive him (or us) completely round the bend, we had made a decision ~ we were going with the option that we felt offered the best balance between short term trauma and potential positive long term outcome.  Smiler and I were going to take up temporary residence at Southampton General Hospital, and keep our fingers crossed that this as yet untested surgery would work as the eminent surgeon performing it thought that it could.

I'm purposefully skipping the op itself ~ I find it quite difficult to think about for reasons that will become clear once I've written about it.  I'm not sure when it will make its way into a post, so you'll just have to watch this space!

So, poor Smiler ~ this is what we did to him.

You can imagine the fun you have when you have an eight year old with both legs in plaster and toes over a metre apart.

Saturday, 4 May 2013

hips of the dislocated variety

Smiler had his annual check up in Southampton a few days ago ~ I  genuinely hadn't realised that I'd been worried about it, but the amount of relief I felt when we were told everything looked good ~ it's difficult to explain. If you've had anything similar going on with someone you love, you know exactly just how intense that relief can be.

It all started back in 2008, when we discovered out of the blue that Smiler's hips were dislocated, and must always have been, as neither hip socket had developed at all.  Every step he took bone scraped against bone ~  the top of his femur (thigh bone) against his pelvis.  Bristol orthopedic surgeons described having to break one femur, break his pelvis, put a wedge of the femur into the pelvis to change the angle at which his leg was meeting his pelvis.  They might do one leg then the other, or possibly both at once.  He'd be in a plaster cast from his armpits to his ankles.  For months.

* * * * *
We decided we needed a second opinion.

Thursday, 2 May 2013

I've been Liebster~d!

Joy from i can say mama nominated me for a Liebster Award ~ thank you Joy!
It's all about the elevens.

To Do List:

  • Answer Joy's eleven questions
  • Reveal eleven random facts about myself
  • Come up with eleven questions
  • Tag eleven other bloggers