Saturday, 30 June 2012

Beautiful Day

 "Today is a beautiful day," said the Little Princess (on waking at half past six in the morning, but perhaps we won't dwell on that), "because today I get to wear my Brownie Uniform."
And so she did.
"I was a Rainbow, but now I am a Brownie. And this is my Brownie Uniform, and it is for beautiful me on a beautiful day, and you are a beautiful Mummy because you did get it just for me."

And I'm recording verbatim as I had to go back through the archives here yesterday, looking for a certain key date (nb L - 5 years, not 6; I feel better about that although I'm not sure why!), and I found some of tLP's earlier speeches recorded. And I had forgotten how hard she has worked to become the articulate girl she is today. It's easy to get fixated on the bits she gets wrong and forget to celebrate how far she's come.
 It was and is a beautiful day, too. Miss Mog here somewhat inelegantly supporting the Swedish banners - our Brownies having been chosen to represent Sweden in the Division On Your Marks Olympic Event. Mog took part in the opening ceremony, carrying the Brownie Flag as the oldest Brownie in the pack. 

Our Guides made do with a hurriedly scribbled blue cross on the back of a couple of white permission slips to represent Finland - sorry guys; we brought the girls but not the gear. 

Being with our Guides, I missed Miss Mog and tLP attempt their own version of a Haka. I saw their handmade Olympic torches, and I cheered them on in the obstacle courses (whilst also taking note of our fleetest Guides and mentally assigning to them the role of gopher at summer camp).
It's been a long time since I made it to a Division event (GirlGuiding UK is divided up in to regions, then counties, then divisions and then districts. Our district is very very local, our division is our town). Lovely to see Guides and Brownies and Rainbows all mixing and joining in, in an afternoon formally opened by our Division President, who just happens to be my old Guider. You might get too old to wear the uniform (although there's always the Trefoil Guild), but you never stop being a Guide. 

tLP's first official event as a Brownie, and Miss Mog's last; she will be joining us at Camp as a Guide, meaning that once again, we will have three generations in Blue. 

And so a beautiful day. Just enough (OK, more than enough) wind to keep the flags flying (sorry about the hurdle races, but hey, they weren't wheelchair accessible anyway), enough sun to bring out a nice pink glow without frying anyone too badly, and the most perfect note of all; flash storms and torrential rain which started two minutes after I'd pulled out of the car park and stopped just as I pulled up outside Miss Mog's respite centre. Sorry for those of you who got stuck with the clearing up though!

And now Miss Mog is in respite, and very pleased to be there in her Brownie Uniform, showing off all her badges. The Little Princess is enjoying the non-sleeping part of the Brownie Sleepover, and so whilst I wait for a call letting me know the others are off to bed and can I pick her up, I have the house to myself. A properly beautiful day, and a first for a Saturday night, I think. 



The deed is done. We broke the news. The Little Princess has known for a while that we are going to Florida. But there was a day, a few weeks ago (because I am shamefully behind on blogging), when we gathered friends together and, having wound them up sufficiently by rubbing their noses in how much we were looking forwards to our wonderful week in Florida, and how much they'd be missing out on by not coming with us, we finally told them they were coming too.

I think it's safe to say the news went down well.

A few weeks on, I think it's also safe to say our hearing has recovered.

But even now, I'm not sure the children really believe it. Every so often, tLP grabs me and "I got a question for you. Are they Really Coming? Really Really? But on the Same Place? To the Same Hotel?" And the squeaking is mighty.

These are the children who can turn tLP's wheelchair into the wildest ride there is. The young Jedi Knight, and three Princesses. And we're setting them loose in the land of Disney. May God have mercy on our souls.


Thursday, 28 June 2012

Summer happened

 I think it was on a Thursday. But suddenly, there was sun. 
Summer uniforms came out, flowers decided to burst into bloom, the bumblebees found the cat mint and celebrated.
 The rain (because although summer happened, it was and is a very British summer. Rain features heavily even on the sunniest of days. Apparently) falling on the thyme and lavender, washing their essence into the decking where a sit or a squat (see above re: rain happening and imagine the wet wood) reveals heavenly scents. 

A gentle breeze wafts heady waves of honeysuckle over the garden, as the few remaining birds (cats. Birds. Bad and bloody combination) sing warnings to themselves and to me, and a softly furred feline rubs up against my knees.

Freshly mown lawn and damp soil add the base notes to the intoxicating fragrance. And I am refreshed. Closing my eyes, I give thanks for the infinite variety to be found even in this fairly small English not-very-Country Garden. And then the rain starts falling again, and that's altogether too refreshing for me, so I retreat to the sunroom and watch the huge drops fall onto the giant red roses which bloom, better year on year, despite never being pruned or fertilized or treated for any kind of pests. 

The rain thrums down on the flat roof, reminding me of summer nights under canvas, Mediterranean storms and the neverending wonder that a thin sheet of fabric can withstand torrential rain, provided it is never touched from underneath. The worry, lying in a sleeping bag, that an unfortunate dream might cause limbs to thrash and accidentally make contact. The fascination of using a finger to trace a drip from entry point down the sides of the tent to the ground, and watching all future drips follow that same path rather than enter the tent, and the irresistible temptation to create new drips and new paths. Irresistible only once, until the maze of drips is so intense there are a dozen buckets balanced precariously around the tent, and sleeping spaces are now contorted into corkscrews to avoid waking in a puddle. And in the morning, the steam rising as a scorching sun eradicates all traces of the night before. 

I'm a parent myself now, and I have no idea how our parents managed to organise our holidays so well. True, my brothers and I didn't have the various complications both my girls have, and, equally true, there were two of them. But the packing involved in camping with five of us, the trailer and the roofrack, and the three of us sitting on seats made slippery with the addition of sleeping bags under us, footwells packed with pillows and laundry, bootspace filled floor to ceiling bar a slim corridor of light allegedly providing a view to the rear for the driver. And all this, not just once to get to our holiday and once to get home, but repeated every 2-3 days throughout the three weeks we would be away, in order to make the most of the holiday and see everything there is to see. 

Backing the trailer into the designated pitch, assembling frame tent (Boys and Parents) and bright orange Force Ten (Me). Lashing a groundsheet over the top of the tent for additional waterproofing. Corks as improvised dollies to prevent my tent being a lightning conduit. Always an additional frisson during the inevitable storms. And, with hindsight, possibly an excuse to open that second bottle of wine? 

Falling asleep to the rain, or to the chirp of crickets, the low murmurs of my parents' conversations, muted noises from other campers and the distant barking of dogs. Waking to a baking heat, stumbling out of the orange tent into a world where the grass has taken on a bluish purplish hue overnight, until normal vision returns. 

Camp breakfasts and either striking the tents and moving on, or else leaving the tents and trailer, piling ourselves back into the car and driving off to whatever the day's agenda might be - prehistoric caves perhaps? Churches and chateaux and ancient rambling towns, route marches up mountainsides and through forests, roadside picnics and on one unforgettable occasion, cherry stones thrown out of the moving car and hitting a Gendarme on his bike. 

Wet washing steaming gently in odd corners of the tent, or draped over improvised washing lines on drier days. Whist and rummy and Beggar-My-Neighbour. Evening rambles to a creperie, morning races to the croissant van, toilets a-la-Turque (squatting holes, for the uninitiated), and perfect fresh French beans or Artichokes in butter. 

Oh, and the perils of shorts in combination with vinyl seats and hot sun; searingly painful when first sitting down, and the stickiness of trying to separate limbs from seats on arrival at the destination. Dividing up the back seat according to the stitch lines and protesting when marauding siblings put a finger over the line. Sleeping on an improvised bed in the back seat, rolling over and sending a smaller sibling into the footwells and under the passenger seat. Baking on slow moving motorways, and carsick on winding mountain roads, bickerings and sulks and the million and one things smaller siblings do On Purpose Just To Annoy Me. And the misery of being trapped in a car with a full potty. 

So, summer happened last week. I think it was Thursday. And now I'm gearing up for our own coming holidays, and we ourselves are planning a three week camping trip, albeit rather tame in comparison to those of my childhood. We'll have a week at New Wine, a few days at home, then 5 days at Special Kids Camp followed by 5 days at Guide Camp. I hope, in the years to come, my girls' memories are similar to mine; the scents and sounds and summer-holiday-adventureness of them more easily recalled (mostly) than the grim times. And I hope, please, that Summer proper will happen, and that we will have dry days and quiet nights, dry strikes, healthy girls and absolutely no flooding at all.

Bring it on!

Monday, 25 June 2012


He's determined to squash these pesky fish.
They are equally determined that a large object touching the glass must be offering food.
They swim to his paws, he bats at the tan. They swim away, offended. 

He swats at the bubbles from the filter, they swim back over to see if his paws bear food this time, he bats at them, they swim away. 

We laugh.

He retreats, offended, until we leave the room. And then he jumps back up, and the cycle repeats. I hope he never realises the roof of the tank just lifts off. 


Tuesday, 19 June 2012


Photo from Brownies; thank you.

Today Miss Mog turns ten. I'm not sure how that happened - I'm sure it was just last week you were starting Brownies, and only last month I was settling you into the ancient Moses basket which had previously housed myself and my mother. And now here you are in double figures, infant no more and only just a child, officially a tweeny and all too soon no doubt a teenager.

It's easy to forget. You go to the same school you've been at since you were two, and where you'll stay until you are nineteen. You've been in the same classroom for the past four years, albeit with different staff and classmates. Your friends are our friends, of all ages, and not tied to the school year.

Physically, you are changing, growing, developing, and giving hints of the beautiful young woman I hope you will be. The changes aren't all good; like many children with Cerebral Palsy puberty seems to be bringing with it the double plague of changed seizures and scoliosis. But your dimples are back, your skin is glowing, and you are beautiful. Maybe this year will be the year we finally cut your hair for the first time, who knows?

You seem to be becoming more interested in taking control for yourself. Since we have switched you from drip-fed formula to boluses of real food, you have become in touch with your appetite, and can tell your helpers when you are hungry and when you are full. You appear to be more in tune with other bodily functions, too.

I am so sorry it has taken all of us this long to realise your morning miseries were caused by hunger. But I'm so pleased that a quick bowl of fruity porridge can make everything better so quickly now.

You're making decisions too about surgeries and interventions in your life. It's great that you have an opinion and can share it with your doctors. I'm sorry again that we aren't going to be able to follow all your wishes all the time in these matters, but I hope we can all, yourself included, come up with an acceptable compromise which helps without being an unacceptable risk medically.

You were very clear that clothing would be acceptable this year as always, and I'm pleased you like the outfits friends and family chose. No hairbands this year, but don't worry, you have money and gift cards and we will hit the shops one day after school breaks up for summer.

It's been a good few years, but finally you are moving away from Norah Jones. I'm sure you'll always like her voice, but it is nice to be able to play different music too. I like listening to the Tchaikovsky you fall asleep to, and I'm sure eventually I will get better at remembering to turn it off before the fireworks and guns wake you up!

Your health has been interesting this year. No hospital stays which is brilliant, but after a very rocky birthday last year, I think it's fair to say you have kept us pretty busy. I hope our new bus comes soon, and that I can be a bit more relaxed about driving once I know I can see you. I'd also love it if you could make this year the year when you don't forget to breathe. At all.

You are so tall now! How can you be wearing school dresses designed for 14 year olds? Don't grow too much this year please; you have good and well-dressed friends who pass clothes on to you and I'd hate you to overtake them!

You've started having regular overnight visits at our local respite centre. It is lovely to see your smile when we pack your suitcase, and hear you shouting as I drive you there. I'm very impressed too with the staff who have do quickly picked up your communication and your quirks, and I'd like to thank you for being do helpful and showing them how you say yes and no and use your book.

Miss Mog, you were the Sprog who was supposed to be a bit of an unchanging blob; growing bigger but remaining unhappy, screaming, spewing and seizing constantly. I'm so pleased the predictions were wrong. I suppose, technically, they were right; your challenges are not inconsiderable, and you throw fresh ones at us on a far too regular basis. But none of those predictions could ever tell us how you'd get the giggles when other people were in trouble, how you'd have such a penchant for stylish clothes and snazzy hairbands, how much you'd love music and cuddles and rollercoaster rides and coffee and chocolate cake.

We've got a busy year ahead of us. Three camping trips in the summer, hopefully some time at playscheme and definitely some nights at respite. Our Big Trip to Florida in October. Leaving Brownies and starting Guides. Cousins returning from Tanzania, and others in Scotland you've not met yet. Vague plans for further holidays, friends to catch up with, inevitably some medical stuff to squeeze in somewhere, a wheelchair to tweak, more equipment to try, and no doubt some hospice stays too.

I'm looking forwards to every bit of it, because I get to do it all with you, my wonderful, precious, special, funny, clever, persistent, amazing, beautiful, wise and patient ten year old LittleBig Girl.


Wednesday, 13 June 2012

Hacked off

Just a very quick note to those who know our wider family. Please rest assured, Mum is not stranded in Barcelona without any money. Her email account has been hacked; please ignore this or any further communications from her, especially those suggesting you click on links, send money, or otherwise help her out in any way.

Unless, that is, you owe money for Guide Camp, in which case, could we please have the remainder ASAP! But through the usual channels (cheque/cash), not Western Union or anything else she's never asked you about before.

Meanwhile, my computer keyboard has not enjoyed having half a cup of coffee poured into it, and has taken to playing Abba whenever I hit the delete key, refusing to type certain symbols or change the volume levels. Blogs and other computer related activities may therefore be somewhat minimal until I have either persuaded it to dry out or taken a hammer to it and replaced it.


Sunday, 10 June 2012

Reason number 3751 why I am often running late.

I can deal with the instant affection, winding round the legs and begging for fuss which occurs whenever I stand up and make for the door.

I can dismiss the sixth sense which somehow informs them when I am about to get up, and ensures that at least one cat will land on my chest, purring into my chin.

We've even found a way to overcome Benjamin's habit of throwing himself down on the ground, on the lintel, just in front of the Little Princess' wheels, thus ensuring she can't move forwards or backwards. Since I can't squeeze past both girls when they're lined up in the hallway ready to go out, we now have a long poking stick. You'd think the threat of crushing by 125kg tank would be an effective deterrent. It's not. A couple of prods from a broom handle will eventually persuade him to amble a few steps further down the ramp; not enough to get past but at least enough to shift the girls gently so I can grab him and peel him off the concrete. 

Two cats lying around each other on the concrete ramp produce a beautifully compelling yin/yang effect, although thankfully the effect is very short-lived. Sniff, sniff, kiss, kiss, rub, rub, and then BounceHissSpitWalkAwayQuickly. For the cats are only nearly good friends. Allies, I think, rather than soul mates. 

And this is now their latest "Don't leave us" trick. Into the bus as soon as the doors are open, settle onto the seats comfortably as I clamp the girls in, and then dive under the chairs, safe in the knowledge they won't be run over. Have you any idea how hard it is to remove two furry felines from the far crevices of the car, with speed enough to ensure that the first has not performed a rocketlike re-entry during manoeuvres to remove the second? 

It's a good job they're pretty. 

Tuesday, 5 June 2012

Throw away the key

 So it's a wet day, day four of a wet bank holiday and half term. We're Jubilee'd out, we're definitely flagging. Only one thing for it - send the girls to prison.

Too wet for outside photos, and I was kind of hoping the website would have plenty of their own, but, annoyingly, it doesn't. Still, we took a trip here to Oxford Castle, and spent an afternoon with headless monks, serving wenches who had survived their own hangings and dissections, and a motley crew of ex prisoners and guards.

The ancients climbed the Saxon tower, but I didn't fancy carrying them up 101 uneven and ancient steps felt the girls would benefit more from a series of dire warnings.

They didn't seem terribly overawed.

4 men to a 6 foot wide cell, bunk beds and a bucket anyone? Not in the 1830s, when each man had his own space, but back in 1996, before it was closed.

Happier things happening up at the top of the castle, where the falconers had taken refuge against the pouring rain. Warmer for them, excellent for us, as we could get a little closer than when they'd been huddled in a gazebo at the top of a flight of steps.

Mog was really interested in the kestrel, but I think the rest of us preferred the barn owl. Even the Little Princess decided it might possibly be ok to come out from behind parents and grandparents to at least have a hint of a look. 

Picture taken shortly before the owl mistook Mog's nose for a mouse. Happily, Barn Owl beaks are rather soft, and a little nibble is more of a tickle than a major injury.

It didn't encourage tLP to get any closer though! And we decided to avoid the hawk.

Brave Princess, watching Grannie offer up her finger as another fake mouse.

And then back downstairs, where the headless and skeletal monk obligingly removed his face mask and lifted his skirts to show tLP he really was just a person pretending, and even had jeans on under his robes. No nightmares tonight then. Unless induced by tLP's attempts to eat her own bodyweight at the Chinese Buffet we had for lunch.

All in all, a rather good and not too damp day. New knickers for a cousin, new trainers for the most reluctant shopper in the world, up front and personal introductions to feathered things for Mog , and vivid memories of tiny cells with which to threaten misbehaving children.

And home, and no arguments before bed, and no saline under pressure related incidents (don't ask; far too frequent to be funny), and two cats united in depopulating the nearest hedge. Birdy people; any tips on persuading birds that perhaps nesting 2 foot off the ground in an urban area claimed by at least 8 cats is possibly not the wisest choice? Experience doesn't appear to do it...


Sunday, 3 June 2012


I suppose the incessantly pouring rain is a terribly British way of celebrating the Queen's Diamond Jubilee. Probably far more traditional than the street parties which are currently being rained on (or rained off) across the nation. I'd put some clever rain/reign pun in here but I can't think of one, so please insert your own.

The Little Princess is most impressed with the idea of wearing red, white and blue, and has taken this to heart, not just for Friday's "Street Party Picnic In The Playground" at school, but as The Law for the rest of the weekend. Cue many tears when the above outfit hits the washing machine. She's also been attempting to teach us the "Why I See Eat" song; mystifying until she starts both tune and action rather than words. I believe the rest of the world may know it better as "YMCA".

Minor side note - does that shorter leg look re-dislocated to you?

Eschewing the town's street party, concert, bun throwing and other potential drowning situations today, we decided the only sensible thing to do would be to make chocolate brownies. I suppose a decent Victorian Sponge ("Jam Cake" according to tLP) might have been more patriotic, but less easily turned wheat free, in honour of a friend we're visiting tomorrow.

The cats decided to celebrate in a half-hearted way, but half-sacrificing a little brown bird. Thoughtfully, they brought it in, dripping and flapping and chirping, and encouraged it to hide under the settee. Nice. What's kinder? To leave the bird to die (noisily) under the settee, out of reach of the cats but terrified, or to shovel the bird out into the garden under a tree and keep the cats in until they've hopefully forgotten about it? Can't quite bring myself to finish what the cats have started. Am however considering going off cats. Especially as they both also seem to be perfecting the midnight dash through the catflap and onto a sleeping human face, as swiftly as possible, with as much mud and water as possible. Colour me somewhat unimpressed.

And in the meantime, I'm trying to sort out where I stand on this whole monarchy thing. Is it right that anyone gets to be in such a position purely by virtue (?) of birth? Is it right that someone gets to be the head (under God) of our established church, again by birthright? Should anyone carry the title "Defender of the Faith" when the original title holder turned his back on the pope who bestowed it, and founded a whole new church so he could have a nice divorce and marry a new wife or five? Historians, please excuse my gross oversimplifications. And, at a time when we are being constantly told there's no money and that cuts are inevitable, is it right to spend a reasonably vast sum on a giant party for one woman?

On the other hand, seeing various different voluntary groups all coming together, watching communities working with each other to coordinate big lunches, that has to be a good thing, surely? And if we had no king or queen, who would become the national figurehead? The smarmiest of ex-political leaders? The wealthiest of businessmen? The winner of the next Big Brother/Britain's Got Talent/Big Thing?

I belong to the Church of England. I don't have to; we have religious freedom here, I am free to join any church or none. But I choose to consider myself an Anglican (and a Christian; it is possible to be both!), I choose to ally myself with the established church, I choose to associate myself with all the controversies and struggles and embarrassments which are the inevitable result of layering history, faith, religion, imperfect people, theology, tradition, state, and more imperfect people into one whole sort of general mishmash of a Church. Which means, I suppose, that I get to choose to celebrate 60 years on the throne for one woman, who seems to have handled the responsibility with grace and dedication.

Times change; we might occasionally still sing All Things Bright and Beautiful, but we probably skip through the verse "The rich man in his castle/The poor man at his gate/God made them high and lowly/And order'd their estate". And I'm reasonably certain no one these days adds "Lord grant that Marshal Wade/May by thy mighty aid/Victory bring/May he sedition hush/And like a torrent rush/Rebellious Scots to crush/God save the King" to the National Anthem. Marshal Wade? And our Queen today certainly has less power of the beheading and imprisoning variety than some of her earlier ancestors. But, whilst times change, if I'm going to call myself a Christian then I should probably look to the Bible when I'm trying to work this out, and 1 Peter 2 seems to be fairly clear - Honour mankind. Respect the brotherhood of believers. Fear God, and honour the king. Or in our case, the queen.

So it seems fitting today, to set aside concerns for the future, and instead to finish this post here in Westminster Abbey where pageantry, royalty, and faith can combine to produce this:



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