Saturday, 29 December 2012

winter wonderland ...

All the family went to the Winter Wonderland at Cribbs Causeway on Thursday ~ Special Friends had booked a session before the rink was open to the public, and this time we didn't have to argue with the skating people to 'let' us have the wheelchairs on the ice!

Petal, as ever, went round and round, giving us regular updates as to how many circuits she'd done.  Spot the new gloves and scarf, and the sleeves of the new jumper that are longer than the sleeves of the not new coat!  She was having so much fun ~ right up until she fell over, bumped her rear end, and burst out crying.  By that time my ankles were killing me so she was the perfect excuse for me to have to leave the ice (don't tell anyone!). 
As I looked into her eyes and she relaxed and pulled faces at me it crossed my mind that this was one of the moments I hope I will always remember, when I could feel how much I loved her right down to my toes ~ all the way to the moon, and back again.

Noah struggled at first on the ice ~ I'm not sure if it's his balance or his confidence that was the bigger problem.  Fortunately, he has a strong  familial support system ... also known as a big brother and his handy wheelchair!  Teamwork!  Spot the new jumper/old coat combo going on again!  Poor Noah is battling  to coordinate his limbs right now ~ he's sprouted up so much over the last six months ~ all of a sudden his trousers were all three inches too short, which unfortunately showcased our collective family shortcoming of completely failing to ever match a pair of socks!

Mr Manley ~ well, maybe it's the big feet keeping him the right way up, kind of like a counterweight to his height.  Actually, that's not fair ~ and more importantly, not true.  We went ballroom/Latin dancing together each week for about four years, before I got sick, and he has the same genuine gentle grace on the ice that I used to see when we danced.  I said he looked grumpy in this picture, but he disagreed, and he was moving too fast for me to get a better photo, so he's stuck with this one!

I love seeing the three children together, getting on with something without needing any adult supervision or chastising!  It's a difficult balance to reach, for Noah, Petal and Smiler to interact as siblings ~ ordinary, bickering, irritating and irritated siblings. So here we have Smiler waving, Petal reminding him to wave and Noah in charge of steering ~ trust me when I say this level of cooperation does not happen often!

Everyone enjoyed themselves, even though we ended up with chilly fingers and soggy feet!  You know that bit where you have to carry your skates back to get your shoes, and the ground is all wet?  Every time I promise myself that next time I will remember to bring extra socks for everyone so we can finish up with dry feet, and every time I forget!  Maybe next time ...

Friday, 28 December 2012

the alternative Christmas message

Channel 4 have broadcast an alternative message (referring to an alternative to the Queen's Christmas message) since 1993 ~ plenty more wiki info if you're interested!  This year, the speech was given by Adam Hills (not much on his site, but here it is if you want to check it out), who presented a kind of round up programme each evening on channel 4 during the Paralympics this summer.  A comedian by trade, Adam also has first~hand experience of being different ~ he was born without a right foot.

If you didn't catch it at Christmas, it's available for another couple of days on 4oD, otherwise I'm sure you can track it down on YouTube or similar, and please do ~ it's a great reminderb that thing have shifted just that little bit, and disability is no longer (within the UK at least) quite such a taboo subject.  I don't know how long it will last, but by consolidating the fantastic events of the summer with such a positive message we can certainly keep our collective fingers crossed.  Some of the text of the programme can be read at sport site, and for me the resounding and memorable sound byte was 
"And right round the world new voices are boomin,
Don't call us disabled, we're now Superhuman."

Thursday, 27 December 2012

Bristol A+E ~ abstract to say the very least ...

I had an unexpected diversion to Frenchay A+E yesterday, and while waiting for bloods to come back and for Mr Manley to come and pick me up, I found myself accidentally eavesdropping on the patient in the next cubicle ~ they may provide a little privacy but those curtains do nothing to enhance confidentially!  For obvious reasons, the names in the following conversation have been changed.

(Young female doctor) ~ Hello there Mrs Williams, I'm Anne, one of the doctors here.  This is George, he's one of our very best nurses, and he's going to be helping me check how you're doing.  Can you tell me how you got hurt today?

(Elderly lady patient) ~ Oh, you are a dear, but just call me Doris. Mrs Williams makes me feel so old.

Okay Doris, so let's talk about what happened. Your son said something about a computer?

Oh no dear, I don't know anything about those, just used a pen and paper in my day.  Is yours broken?  You should talk to my grandson Liam, he's very good at all of those sorts of things.

Monday, 24 December 2012

Enchanted Christmas at Westonbirt

Westonbirt Arboretum ~ go if you get the opportunity!  About three ~ quarters of an hour from Bristol, and time flies when you have Christmas CDs and mince pies in the car!

I'll add some more photos soon but for now, I hope you have a fantastic Christmas.  I've given my little people an extra squeeze tonight ~ I think this may be the last year Petal is able to convince herself to believe in the magic ~ Noah had become so streetwise the last couple of years we know he only goes along with it because he's worried that if he doesn't then his stocking may be empty in the morning, and Smiler ~ well, who's to say what he believes!  

Have fun, and make sure you take a moment to remember the things that genuinely matter this Christmas ~ no, not sprouts and  wine and chocolate and ribbons and fortune~telling fish ~ the people you love.

Happy Christmas.

Sunday, 23 December 2012

Something New!

I was wondering around our local library last week and spotted this book ~ I know, it's a bit sugary sweet, but one of the projects was a baby hedgehog ~ perfect for the symbolic pet Petal added onto her Wish List.  

So, all I had to do was borrow the book, buy the equipment, and learn to needle felt!

Watch this space ...!

Don't~cha just love the way her red eyes match the tree behind her?!  They're not red in real life, I promise!

Friday, 21 December 2012

Anything planned for March 6th?

I just wanted to flag up for everyone that free tickets for the Bristol Parent Carers Participation event on March 6th next year can now be booked via this link.

Anyone who has attended one of these events before will be able to tell you what to expect, and as well as enjoying a free short therapy session (not sure what will be available yet, previous events have included reflexology and shiatsu massage among others), and finding out what changes might be coming in the future for our children, it's a fantastic chance to meet other parents and have a chat.

Speaking of chat, BPC run a monthly 'Parent Carers Support Group' at Barton Hill Settlement ~ the next one is on January 14th.  It might sound a little intimidating, but I promise it isn't!  Even if you are a brand new face, no one will throw wet sponges at you or force you to fill in a six page registration form!  It offers the chance to chat about any difficulties you are having (your child, their school, their doctor etc), get some tips from other parents on good places to visit with your child, nor even, shock horror, talk about something that has absolutely nothing whatsoever to do with your child!  Yes, its true, you are allowed encouraged to chat about whatever you want.  There's tea, there's biscuits ~ give it a go! (Is it only me that has that 'doctor pepper, what's the worst that can happen' song in their heads from the adverts?)

Click to read the rest...

Wednesday, 19 December 2012

Nativity plays ~ how many have you seen?

I worked this out earlier, and between the three children I have seen (so far) 19 separate versions of the traditional nativity play.  You know, Mary, angel, donkey, shepherd's, kings/wise men, baby.  There's a level of tolerance relating to how many times I can remain relatively sane sitting through the whole thing, and to be perfectly honest, I reached that number a couple of years ago.  

Surely I can't be the only parent who attends this (alleged) highlight of the school calendar experiencing not the utter joy and frenzied excitement that we seem expected to feel at the opportunity to see our offspring perform, but more a weary resignation to the fact that there are few legitimate reasons to escape the situation, and just a teeny tiny amount of fear that I might fall asleep and be elbowed back into consciousness by a disapproving parent seated next to me when I begin to snore. Or dribble. Or both.

Click here to read the rest ...

Tuesday, 18 December 2012

Follow the finger ...

Petal, trying really hard to make herself go cross-eyed...

No Petal, this is how you do it ...

That's right, keep both eyes on that finger ...

Move it slowly ...

Oops! Try again ...

Yep, well done ~ in case you weren't sure what it would look like to go cross~eyed in just the one eye ~ now you know!

Saturday, 15 December 2012

Eli, you dirty dirty dog!

Eli, enjoying a hug with Smiler before he had a close personal encounter with the scissors (Eli and the scissors I mean, not Smiler ~ that's a whole other story!)

Apparently, the two~tone dip~dyed look is in this season.

I know, a bit blurry, but still ~ so so grubby!

I'm starting to think a cream coloured dog was not one of my better ideas ...

Wednesday, 12 December 2012

A land of possibilities ...

We went to Westonbirt a couple of weeks ago, before it got so cold!  It's gorgeous ~ so many colours, from the most vivid scarlet to the deepest brown, with a rich palette of yellows, oranges and umbers in between.

It's about a forty~five minute drive from Bristol, and so long  as you're wrapped up, you can easily spend the whole day there.  Huge mounds of leaves for the kids to kick their way through, and plenty of leaves still on the trees to cast the most amazing shadows on the ground.
Petal found a secret doorway... can you see it?

She's so responsible and mature most of the time these days, due to my health in some ways I guess, I love it when she ignores the path and runs around in the mud ~ I love to see the eight year old in her.
How about now?  Can you spot that magical portal into childhood that Petal found?  I found my own portal ~ the cafe!  We stopped off  for some fantastic hot chocolate ~ complete with marshmallows and cream!  
Yum ...


Made of wood, hidden within the trees, an entrance to an ethereal land full of possibilities...
Shoemakers elves, woodland pixies, forest nymphs, tree fairies ~ they all featured highly in the mystical tales whispered into Petal's ear as she ran amongst the leaves.  That kind of innocence is like mist in the morning ~ it burns off fast and you can never get it back, so take time to enjoy the view while it lasts.

* * * * * 

Monday, 10 December 2012

About that last list ...

Our 'proper' computer seems to have decided to take a break, so I can't post any photos.  In case you aren't aware, I thought I'd offer some info about the items on that last list, so here goes.

Bagga T

Originally a series of books, Rastamouse and friends now have their very own programme on cbeebies.  Rastamouse lives in Mouseland, plays in a reggae band and also solves crimes with the help of his band mates. Cheese features highly, and once each criminal is shown the error of their ways, they apologise and put things right.  Bagga T starts off as a rapper on the wrong side of the law, and once reformed only uses his musical talents for good, such as rapping the 'ickle orphans' to sleep.

Bagga T  and the other characters use Jamaican slang throughout, which I think is fantastic ~ so many children in the UK grow up hearing  their parents or extended family members using words and phrases that they never hear repeated in school or through other media such as literature or TV shows.  Some may have the opportunity to hear reggae music, but might still feel isolated ... different.   By presenting strong Jamaican accents and using words and phrases specific to this culture mainstream BBC children's programming has acknowledged the diversity represented in the UK, and also given those children who can convincingly imitate something to show off in the school playground!


Kwasi, I am reliably informed, is a cat who is a member of the crew in (yet another) Cbeebies programme ~ the Octonauts  As far as I can work out, they live under the sea in a cartoon version of the underwater drilling platform in the The Abyss, and spend their time  exploring, helping fish, sharks and other marine life, and researching the underwater world they live in.  Each character has its own speciality ~ Peso (a penguin, in case you were wondering) is a medic ~ he bandages up sore fins and rubs cream on cuts.  Kwasi  seems to be a pirate with his eye patch and spyglass.  Always conscious of the importance of educating their audience as well as entertaining them, each programme also includes a couple of simple marine facts ~ that it is the male seahorse that gives birth for example.

So an educational wish list from Smiler, just a shame his imagination seems to have out~imagined those who hold the power in commissioning!

Just as well Smiler loves books ~ Rastamouse and Octonauts do both perform in this area at least!

Friday, 7 December 2012

The final abstract Christmas Wish List

Two down, one to go.  Each child put together a Christmas Wish List, with varying degrees of detail.  This one was just a tad shorter than the others...

  1. Talking Bagga T
  2. Talking Kwasi

That's it.

On the plus side, these are the same two things that he asked for for his birthday, so he's consistent.  However, there was a very good reason he didn't get either of them then, and it is the same reason he won't be getting either of them for Christmas ~ they don't actually exist.

Monday, 3 December 2012

Life Unlimited

Up, down, in, out - all of us lead lives full of curves and ever changing focus.  This is an amazing piece of three dimensional art on display at the Science Museum in London.
I've been to seven funerals in the past ten years, five of which were for children.  A friend of mine, Amy, has a son with a medical condition which means he is 'life limited' ~ again, it's all about the words, as if by avoiding the word death we can somehow pretend it isn't actually happening.

Oliver's condition was diagnosed after his little sister had been born, when he started having seizures.  Some were worse than others, but he had one or another type of fit most days.  The family coped, as families tend to do, and his little sister, Erin, understood that this was simply a part of his life, and had been told that one day he would die.  I can't pretend to know what that is like, how heart breaking that must be ...

Anyway, although Oliver's condition deteriorated, he was still around for Erin's fourth birthday, and when her mum was tucking her into bed that night Erin asked if her seizures would start soon.  Not understanding, Amy asked what she meant ~ it turns out that because she knew Oliver had began to have seizures when he was four, Erin thought it was going to happen to her too.  She had thought all her life that she too was going to start having seizures and die during childhood.

Amy wept on the phone to me later that evening, torturing herself for not having explicitly told Erin she didn't have the condition Oliver had, for not having told her she wasn't going to die young.  Amy had made a purposeful choice to talk to Erin about the seriousness of Oliver's condition, but by doing so had inadvertantly  caused more heartbreak.

So maybe there is no right way, maybe there is no option that is going to cover everything you want your children to know without leading to assumptions that you don't want them to make, or to questions that you don't know the answers to.

Oliver is still with us, though probably not for much longer.  Erin is eight now, and loves her big brother to bits.  She is kind and compassionate, and will grow up to be a truly extraordinary young woman, who will cherish her memories of time spent with Oliver for the whole of her life.

As parents we try so hard to protect our children from the sharp corners and rough surfaces of life ~ is it possible that by sheltering them from how ugly and upsetting this world can be we are hugely underestimating them?  Are we preventing them from developing the skills necessary to live a fulfilling life themselves?

*all names changed for privacy 

Saturday, 1 December 2012

It was me. I was the one shouting at my child in the street.

Yep, that was me.

Why is it that my children seem to look particularly angelic when they've just done something I've asked them not to do?  

When they were little I was always really good at ignoring the temper tantrums.  We made a conscious decision that we wanted to be the ones in charge of the kids instead of the other way round, and we had a fairly close example of what we didn't want to do, which helped when I was gritting my teeth in the supermarket with a screaming red ~ faced runny nosed child rolling around at my feet.  I was calm and relaxed, and blanked them completely, and it worked ~ as toddlers they knew if we said no then we meant it.  

So what changed?

I really don't know.  

But these days, things between me and the gorgeous boy child hiding in the leaves are strained, to say the least.  

He's nine, and I'm already dreading what life will be like when he's a teenager.

And he's the only one that makes me feel like a cartoon character with stream coming out of my ears.

So, yesterday evening we went to the Christmas market in Bath.  We go every year ~ its the first proper Christmassy thing that we do ~ its like a signal that the season has started.  On the way back in the car we put the Christmas CD and it plays until the 25th, by which time we have all had enough and are more than happy to put it back in its case, ready for next December.

But yesterday at the market it was as if he was deliberately trying to push every single one of my buttons.  

As a treat, I bought pasties from the bakery.
It's not fair, she got a bigger piece than I did.

We went in a couple of shops, including Hawkins Bazaar, which they love.
But he got a longer turn fiddling with the sticky stuff than I did. 

We bought a slice of fudge from the fudge kitchen.
But I wanted a different flavour, you never get the one I want.

More after the jump...