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Saturday, 30 November 2013

Sunday afternoon tea - with a difference


Back in September Petal and Noah organised an event at their school, and Smiler sold cakes and biscuits to the teachers at his school too.  Between the two events they raised £482 - I'm so proud of them all!  The money was raised on behalf of Above and Beyond, a fantastic charity that make a real difference to the daily experiences of patients and visitors to our plethora of city centre hospitals.  Now this is the exciting bit - Above and Beyond held a prize draw of the fundraisers, and we won!

Monday, 25 November 2013

christmas gifts - the story so far...

For a couple of years now we've chosen to avoid a bit of the commercial christmas gifting nonsense by making our gifts for extended family and friends.  I'm pretty sure none of them read this, so I think it's safe to show off share how we're doing so far...
  • Fig chutney * six jars
  • Roasted pepper pickle * four jars
  • Roasted plum chutney * five jars
  • Pear cider chutney * three jars
  • Mincemeat * six big jars!
  • Sweet chili jam * three big jars - doubles as sweet chilli dip for Chinese snacks or even sauce to use in a stirfry, and tips on dealing with chillies over here
  • Apple sauce * three jars
  • Blackberry jam * thirteen  jars - a very good year for blackberry picking!
  • Blueberry apple jam * two jars
  • Thin cut marmalade * two little jars
  • Thick cut marmalade * two little jars
  • Mango strawberry jam * four jars - very yummy and very very easy recipe that I keep meaning to blog (sorry!)
  • Tropical fruit jam * three big jars
  • Blackberry apple jam * two jars


We make the mincemeat each January, and the chutneys/pickles are done by the end of August, so they can mature - jams get done as and when I have the time and the energy and the fruit.  I took cuttings of the succulents back in the summer, which was amazingly cost effective too - I've now got fourteen baby plants, and the parent succulent is still going strong.  All the jars you can see in the picture above are reused - much better for my bank balance than buying jars (bloody expensive!), and more environmentally aware.

Still to do :


Make last batch of jam (or jam-ish anyway...) Lemon Ginger Preserve
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Prepare jars - soak off all remaining labels, cover with brown paper, string, and cut out/hole punched labels written by Noah and Petal, decorated by Smiler
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Decant sloe gin, cover/label as above (Mr Manley is in charge of the gin)
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Repot succulents into clean/not cracked pots
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Smiler, Noah and Petal to make Extra Special Rocky Road Bars (will be blogged!)
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Finally, I'll use my faithful easy peasy biscuits recipe to make christmas star christmas trees for class parties

Ta da!


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It goes completely against my nature to be so organised, but the last few years Smiler had not been 100% approaching the end of that school term, so I try to get things sorted so a few nights in a+e or a few nights on the neuro ward for me will not throw everything into complete chaos!

How are your Christmas preparations going?  Are you an organiser or a fly by the seat of your pants type?  Do you like the way you do it, or do you look longingly at those in the other camp and wish you were more like them?

Sunday, 24 November 2013

nice day for a walk


Couldn't believe it when I feel out of bed on Saturday - my sense of time is terrible (my brain is currently telling me it must be about June for example - another unexplained idiosyncrasy of my brain cloud), but the frosty grass and icy garden were also a surprise for the rest of the family!  We decided it was too good an opportunity to miss and raided the coat cupboard to find gloves and hats and scarves - even though everyone gets new things every year they must be eaten by that sock monster that lives in the washing machine, as we found seventeen gloves without a pair, and two hats that none of us recognised.  Also two identical scarves.  Perhaps they've been breeding in there . . .

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Crunchy leaves and frosted grass in the shadows of the trees, and there's never a bad time for one of those brother / sister arguments . . .

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silent Sunday : 24th November 2013


Saturday, 23 November 2013

Smiler said WHAT?


Mr Manley and I drove Smiler to school on Monday as usual, and as I was walking away from his room the class teacher came after me and said *duh duh duuuh* 'could I have a quick word?'  Cue follow teacher into a small room feeling like I'm ten and have been caught cheating on a maths test, a sensation which intensifies when she closes the door behind me and invites me to take a seat. 

They're worried about Smiler.  They have concerns.  They need to discuss it with us.  They are worried.

Of course, I go straight to a state of semi panic.  Seizure activity?  Ankles stiff again?  Fused elbow joint causing problems?  Jaw dislocating more often?  Choking at snack time / lunch time?  Sensory integration issues flaring up again?

It seems Smiler has learnt a new word.  How wonderful!  Expanding his vocabulary.  How lovely!

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Saturday, 16 November 2013

Petal, Noah, and Mr Manley all go on an adventure

I knew today wasn't going to go to plan when Smiler cried in pain trying to get out of bed.  So, while Smiler and I spent some quality time together in A+E, Mr Manley took Noah and Petal to Brandon Hill - we figured a bit of fresh air would be much more fun than waiting to find out if Smiler has done any damage to his hip!

First task, of course, was to climb Cabot Tower.  And, of course, take a photo at the top . . .


Check

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Friday, 15 November 2013

Smiler speaks


From very early on with Smiler we tried to encourage his communication above else.  Although we'd been told his brain was incapable of retaining information, we decided (not for the last time!) that we were going to ignore the professionals - theory being that although they would never had admitted it, they truly didn't know what he was going to be like, so it couldn't hurt to give him all the opportunities that we could.  So, the logically chosen first priority was communication.  Not purposeful physical movements, not posting objects into holes, not mark making (usually referred to as drawing or writing!), but communicating.  Getting thoughts from inside of his head to outside of his head.  The idea was that if he wanted something on the other side of the room but was physically unable to get over there to get it, so long as he could let us know somehow, we could get it for him.  To enable him to express choices - so that he would have some measure of influence of where he was, and what was going on.  Eye pointing, PECS, Makaton, BSL, speech - no matter how he communicated, just that he did.

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poetry post : An Irish Airman Forsees His Death

I know that I shall meet my fate
Somewhere among the clouds above;
Those that I fight I do not hate,
Those that I guard I do not love;
My county is Kiltartan Cross,
My countrymen Kiltartan's poor,
No likely end could bring them loss
Or leave them happier than before.
Nor law, nor duty bade me fight,
Nor public men, nor cheering crowds,
A lonely impulse of delight
Drove to this tumult in the clouds;
I balanced all, brought all to mind,
The years to come seemed waste of breath,
A waste of breath the years behind
In balance with this life, this death.

WB Yeats


Another from my a-levels, and rather than go into any detail picking it apart, I'd just like to suggest that you take a moment to slowly reread those last four lines, aloud.

I balanced all, brought all to mind,
The years to come seemed waste of breath,
A waste of breath the years behind
In balance with this life, this death.

Any thoughts?

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Tuesday, 12 November 2013

what if?


We had one of those conversations today.  You know, the ones where you give voice to those what if's?  Those dreaded thoughts that rarely emerge from deep inside of you, those scenarios from the worst of your nightmares.

But every couple of years Mr Manley and I seem to need to purge ourselves, to check on one another, to retread that dangerous ground just long enough to find one another again.  The rest of the time I feel as though by giving these ideas life inside my head, by even thinking about what could be, I've brought that possibility into existence, so it's down to me to stifle those thoughts.  As if by denying them the light of day, the solidity of being spoken out loud, I can somehow prevent them from becoming real.  But of course it isn't that simple.  Which is where the what if's conversations come in.

Saturday, 9 November 2013

Friday, 8 November 2013

poetry post : dive for dreams

dive for dreams
or a slogan may topple you
(trees are their roots
and wind is wind)
trust your heart
if the seas catch fire
(and live by love
though the stars walk backward)
honour the past
but welcome the future
(and dance your death
away at the wedding)

Tuesday, 5 November 2013

my Wish List


Next up, it's me!
Me me me me me!

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Noah's Wish List


Noah's christmas Wish List is in a constant state of flux, so this is simply today's version.  I understand the reasons why, but that doesn't stop it from being hugely irritating, particularly since we've bought everything he's going to be getting already!  The asterisks, I am reliably informed, indicate the items he wants the most.  In fact, I've just spotted that it is already out of date - everything now seems to have multiple stars.  I have no idea why.

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Monday, 4 November 2013

To You, from Me

My house
My street
My city
Today

Dear Katie,

I don't know you, but there are moments I'm sure we're been in the exact same place - my son has complex health / sensory / developmental needs too.  I've been in those situations where you feel sick, down in the very pit of your stomach, but have to plaster a smile on your face and pretend everything is okay, make conversation as if your eyes aren't burning.  I've taken my son to appointments and searched the doctors face for any tiny clue as to what they are going to say the moment they enter the room.  I've typed those impossible medical terms into Google, desperately trying to find out more about what they mean to my child.  I've watched him struggle over and over to do something his brother and sister achieved first time.  I've seen that look of pity in a strangers eye when they've caught sight of my gorgeous boy, seeing only his difficulties, not the sweet wonderful individual I know him to be.

You and I are both women; mothers; parents; carers.  You and I are both lucky.  We are articulate enough to ring up about a hospital appointment that has been cancelled twice and get it sorted.  We understand the importance of our boys education, and we can argue to get some of what we think they need.  We are able to wait around when the wheelchair clinic is running over an hour late.  We have someone to wrap their arms around us when it's all too much and we need to cry, to be told it's all going to be okay.

Sunday, 3 November 2013

the juggle of modern motherhood

With the way society works these days, it can sometimes seem as though 'being a mum' just isn't enough to do.  We're supposed to be all things to all people, all of the time, and if we aren't . . . well, then we're failing.

To rub salt into the wound most of us know one of those super-mums who always has absolutely everything under control.  You know, the ones who run a couple of half marathons for worthy causes each year, whose children are always impeccably well behaved as well as tastefully yet fashionably dressed, achieve top marks in all their classes at school, and are always happy to help the teachers with photocopying.  These wonderful women cook healthy meals from scratch every day, grow salad vegetables on their windowsill from seed, and look effortlessly elegant.  All the time.  They never leave make up on overnight and wake up looking like a Kiss groupie.  


These super-mums rarely drive because they'd rather cycle (more environmentally friendly you know), but when she does get into the car you're unsurprised that she can reverse straight into the tightest of spaces with no difficulty, and you just know there there no dried up apple cores tucked inbetween car seats, no half empty pack of wipes left out on the passenger seat that she keeps meaning to put back in the glove box, no wrappers from her emergency chocolate stash left around, no pile of scrunched up petrol receipts.   The salt that these superwomen rub into that wound is bound to be locally sourced ethically traded gourmet salt crystals, but somehow that doesn't have any impact on how much it stings.  The supermum - with whoever and whatever she is, there's a single thing she emphatically isn't, under any circumstances, and that's me.

afternoon tea : Sunday 3rd November 2013


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silent sunday : Sunday 3rd November 2013


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Saturday, 2 November 2013

poetry post : The road not taken

Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads onto way,
I doubted I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I -
I took the one less traveled by,
And that has made all the difference.

Robert Frost