Sunday, 28 November 2010

More from the Hostess Chronicles

I think I set the standards a couple of years ago. Low enough, even for me. And failed even these low standards fairly abysmally over the summer. Read the comments to find the unblogged hostessly failure which left two dear friends with a punctured lilo, too polite to ask me for the repair kit in the middle of the night.

Friends, let this weekend serve as a dreadful warning.

To begin with, I suspect the perfect hostess may in fact plan at least part of any projected visit around the needs and interests of the visitors. By contrast, I managed to arrange friends for the weekend and a Girl Guide sleepover for the same weekend. Not the best start. Next complication, an invitation for Little Fish to go to a Birthday Party on the Friday evening. Not the politest perhaps but actually potentially quite sensible; friends arriving midafternoon so time to say hello and have tea before whisking LF off, then nice time to chat and shuffle other children into bed before collecting her again. Fine in theory.

Theory scuppered by horrendous traffic on the M25.

The perfect hostess probably has a perfect meal simmering on the stove, scenting the house with delicate herbs, whilst fresh bread bakes and coffee brews. I'm fairly sure our overflowing nappy bins do not feature in any guide to domestic goddessery. But then I've never aspired to be a goddess.

I wrap the girls up against the cold, text friend to warn her I've gone to deliver LF to her party, and receive a reply that she's in the carpark unloading. I unwrap Mog, race outside with LF, and inform friend that Mog's in the kitchen, can she keep an eye on her as well as her own girls. Leaving friend with two screaming children, I dump LF at her party, somewhat to the surprise of the Birthday girl's parents, and race back to at least pretend I know how to greet house guests.

One hungry baby, one screaming spasming small girl (and for once it wasn't Mog), one giggly twitchy Mog, and one truly chaotic but strangely pleasant evening. Little Fish rescued, thoughts of homecooked food abandoned in favour of curry delivered, and eventually all four children tucked up in bed and sleeping.

One glass of white wine and much conversation.

Next complication, 'flu jabs. Our surgery has the frustrating policy of refusing to book 'flu vaccinations out of appointment order. Meaning, you phone up, and you will be offered the next available appointment. Or the next available appointment. Protestations that I cannot physically get all three of us to an appointment for 8AM are met with reiterations of their policy and a suggestion that I call back in a few days' time, when, it is to be hoped, others will have booked the earliest appointments and I might manage to find the coveted 11AM slot. I call back, the clinic is fully booked, and I am offered the next available appointment for the clinic the following week. We again have the conversation where I inform people I cannot get all three of us into town for 8AM on a Saturday, the one day in the week when I don't have carers. They suggest I call back in a few days' time. I do. The clinic is booked, and we are back to 8, or possibly 8.11AM the following Saturday. Meanwhile, I get politely worded letters from the same surgery asking me why I am putting the girls' lives at risk by not booking 'flu appointments. Eventually, I phone up and am offered a 9.25 appointment. I beg, once more, for a later slot, and am refused. We take the 9.25 slot. I write it into the diary, making a mental note that it is the same weekend as the Guide Sleepover, and begin vague plans to spend the day in town doing something nice-ish with the girls after the jabs. And then realise this too is the same weekend as our friends are coming.

Good times.

So, having forced ourselves out of bed several hours before the crack of dawn, and, annoyingly, before any of the massed feed pumps began their morning chimes, we stumbled our way to the surgery, presented arms, wrapped ourselves back up again and stumbled out. Accompanied by one very apologetic nurse who assured us we would very definitely be able to take a more appropriate appointment next time and that we should explain and ask to speak to the appointments manager. Funny; I thought that's what we had been doing. But never mind.

Our friends had a meeting here on the Saturday afternoon, leaving the girls and I holding their very cute and precious baby. This has definitely been the highlight of Little Fish's weekend; she acknowledged the presence of the rest of the family, but it has been baby all the way as far as she is concerned. Our original idea was that the girls and I would babysit in comfort at home. Guide sleepover has somewhat scuppered this, and instead we find ourselves in town; thankfully in a crowded cafe rather than trawling the streets.

The baby proves to be most civilised and sleeps for an hour. On my lap. This we like. Well. This I like. Little Fish is less happy; not because she wants to be on my lap but because she'd like the baby to be on hers. The baby awakes, and is passed around a few of the Guides and more of the leaders, before coming to rest on Grannie's lap, a lap shared with Little Fish. Little Fish leans over the baby, takes a deep breath, and vomits. Lovely. The good news is, she missed the baby entirely. The bad news is, she managed a direct hit on Grannie's gloves and her own cardigan. The perfect hostess probably refrains from partnering vulnerable babies with vomitty schoolgirls. I'm hoping 'flu jab reaction rather than anything nastier.

So, we leave Mog to walk home with the Guides, and LF and I load the baby back into the van. We drive home, pausing at church to drop sleeping bags and DVD players off for the Guides. I drive off, and am stopped by Guides running after me, pointing out I have forgotten to collect Mog. Oops.

We get home, one grumpy hungry baby, one pukey shivery achey Little Fish, and one Mog, laughing at the grumps but hacked off at having been forgotten. I juggle baby and dummy in one hand whilst showering LF with the other, and wonder if the powers that be might possibly consider this proof enough that I could in fact take on another child if necessary. Little Fish is tucked up in bed with several blankets, friend returns with still screechy sobby older girl, and Mog and I do our feeble best to entertain and divert whichever child is currently not with friend.

It sounds stressful but is in fact surprisingly relaxed and cheerful. There's something about having another adult around which somehow instantly removes the stress from the situation. Four children, two adults, should not, logically, be any easier or harder (except to squeeze into a Mini) than on adult, two children. And yet...

Three of the children finally shuffled into bed, we sit down with a stir fry (for I am indeed the queen of cuisine), the rest of the wine, and one beautiful little girl who is so desperate to control the twitches and spasms which continue to torment her, even in her sleep. Meanwhile the cats, who had their own booster shots on Friday afternoon, decide they too need their own fuss and attention, and lie around on the floor wherever we would prefer to put our feet, feeling sorry for themselves and showing how sad they are.

And then we head to bed, and I wonder whether having a bed to sleep on but having a host family who have disappeared on and off constantly all weekend is better or worse than having a host family all present and correct with nicely roasted dinner, but having to spend the night on a cold hard lino floor with a leaky lilo.

Sunday morning, and it's all go, go, go, to be out of the door ready for Church Parade. Little Fish is still on the slow side, so I leave her with our friends whilst Mog and I uniform ourselves up and race out of the door, only slightly late. A full church, lovely. Some very tired Guide Leaders who had the unenviable task of policing the sleepover; this weekend's overnight theme appeared to be "wake one Guide at a time and tell them everyone else has been sick, wait until they are really upset then wake a Guider and tell them the girl in question is very unhappy. Repeat at hourly intervals, picking a different Guide and different Guider each time." I can't say I'm desperately sorry to have missed the experience, but suspect possibly I ought to be bringing chocolates to church tomorrow for those Guiders who were there.

We parade, we hand over toys, we listen to prayers written by Guides and Scouts, some of whom will only enter church on this one day in the year. We watch others play Jenga across the front of the church to illustrate a sermon point, and we wonder why the curate is sitting on a large roll of Duct Tape.

We race home in time for a last cuddle with a now thankfully giggly girl and a last jiggle with the baby as our friend packs her car with most of the things she brought with her, and then we wave them off and slump down to watch Mary Poppins and eat some baked aubergines.

Busy busy, but good for us. I hope our friends thought so too. I'm hoping we get to repeat the process in a few weeks' time, but rumour has it this next batch of friends may have reconsidered. I can't think why...


Wednesday, 24 November 2010


Little Fish is loving words. Our bedtime stories now take a very long time to read, as LF struggles valiantly sounding out the ands and ins and ats of every story. I find myself holding my breath, as she successfully puts together a,n,d, and one sentence and then insists it is a,r,p, pop the next. But she's keen to keep trying and furious when I read a whole sentence without giving her a stab at at least one word in it.

"Pictures" of strangely scribbled triangles and blobs are making way for long lines of odopopoooodoooomoooopppddddddoooooooAmAooood with accompanying oral narration. And illustrated, finally, with those wonderful arms-growing-out-of-heads pictures all children seem to start off with. It's lovely.

And it's exhausting. LF has been coming home from school, and in answer to"what did you do today?" I have been getting "I am so tired and I can't wait for bed." So I've been putting her to bed earlier and earlier. In the morning she's been waking up and telling me again that she is "So tired and want to go to bed." I've been cutting back on things I expect her to do for herself, letting her use her powerchair inside rather than go to the effort of pushing herself, considering talking to school about cutting back her hours. And LF has been happy with the earlier bedtime, but not necessarily dropping off to sleep instantly.

And still, all I have been getting in feedback about school (other than strangely worded songs) is "I am so tired and I can't wait for bed." Poor girl, so unfair to be so wiped out by efforts most of her classmates take in their stride.

An appointment yesterday morning gave Little Fish the chance for a bit of a lie-in. We got into school at the end of morning playtime, and I had a quick word with her TA. I asked if she needed anything for the upcoming Nativity play, as LF hasn't told me anything about it. And was told that no, they had everything they needed, but that LF has a line to speak and seems to be getting really good at practicing it. The line? "I am so tired and I can't wait to go to bed."

Hmm - so let's rewind the past couple of weeks. Not exhaustion but very convincing practice. Poor child; every time she has tried to tell me about the play, I've put her to bed!


Tuesday, 23 November 2010

I help other people

But do I help them by holding their hair out of the way, or by encouraging them to dunk that apple really deep?

Monday, 22 November 2010

The Wedding

Was lovely. Not a flea in sight.

One beautiful bride, a handful of glowing bridesmaids and one very smart and handsome groom.

Proud family, pleased friends, and mutual astonishment amongst those of us who are used to meeting annually in a muddy field that the rest of us do occasionally scrub up into clean clothes which are neither pyjamas nor jeans.

Huge amounts of work clearly gone into making such a special day, and now Mr and Mrs O off on honeymoon.

No photos here - my hastily grabbed shots totally failing to do justice to any of the polished elegance.

Thank you for inviting us; it was lovely to be a part of your special day.

Friday, 19 November 2010

Living the High Life

So, we're going to a friend's wedding tomorrow. This has involved a certain amount of primping and preening, mild hilarity over friend's inability to type (or eat, or rub her eye, or hold a pen) with her new posh fingernails, and of course the quest for decent outfits. Over the last few days I've watched mutual friends discuss the whole hat issue, get their hair sorted, find the perfect glamourous top, and I've felt gradually scruffier and less-well prepared.

Tonight though, in a new low as far as wedding prep is concerned, I accidentally de-flead myself. Turns out, if you take a cat the size of a medium dog in one arm, and a small Spot On Flea drop treatment in the other, you are quite likely to liberally spray yourself with the delousing agent as you attempt to get it open.

Ack Ptptptptpbtbtbtbpah is I believe the correct phrase to utter under these circumstances. The cats generally follow this by shooting out through the cat flap to roll on the grass, but I felt this would probably not add much to the overall effect.

So, fellow wedding guests, when you see me tomorrow I may indeed be substantially less glamourous and more covered in children and babywipes and dribble (not my own. Well, probably not my own) than the rest of you. But please rest in comfort knowing that I shall be blood-sucking parasite free.

Meanwhile, in other news, Little Fish asked me to sing me her favouritest song ever before bed tonight. Which song? "Ali One." Don't know it? Nor did I, until she added more lyrics for me. "Ali One, Ali Two, Ali Three, Ali Four" - Ah, the CBeebies Birthday song.

Sometimes I think my life may be not entirely similar to that of those around me.


Thursday, 18 November 2010

Hello, Ulysses!

From the child who brought you "Who built the Ark? No one, no one. Who built the Ark? Bother! No one built the Ark" I bring you the latest Christmas song. "Hello, Ulysses! Hello, Ulysses! Boing-de-boing boing!" Which, after careful decryption, I can now reveal actually means "Hallelujah, sing Hallelujah, a baby Boy is born." Whilst proud of her classical knowledge, I think perhaps we may be looking at a lesson in Christmas related vocabulary.

I was reading Little Fish a story tonight and she stopped me to sound out some of the words herself. I would like to tell the world that Little Fish can sound out Stomp, Romp, Stop, Bop, Leg, Duck, and Mmmmoooooooooooooooo. And was so pleased with herself that she had to fall off the potty in excitement. Hello, Ulysses!


Tuesday, 16 November 2010


I'm still mulling last night's conversation.

Walking home from Guides, I am approached by a woman clutching an armful of plastic bags, dressed like my Grandmother but with the unusual addition of a large purple nose ring and an assortment of other facial piercings. She asks me if she could use the telephone in the church or else the internet at the Vicarage. I offer my phone for her to make a phone call, and go to unlock it. "It's OK; my parents were journalists and I'm a classicist and a medievalist, I know how these things work."

I'm still pondering the relevance of classics and medieval studies to the mechanics of an iPhone.

And then we stand, as, instead of making the quick phone call I'd expected, she proceeds to send a series of emails. She hands me titbits of information "I'm meeting a friend for dinner and I need to make contact with her." I ask for the address, with the aim of posting her in the right direction. "Oh, no, it's fine, she lives in Abingdon. I was relying on her unusual name in order to find her." Perhaps Abingdon is a little larger than she was expecting? No, apparently she has lived in London so finding someone in a little place like this should be easy.

It's cold. I shiver, I wonder what my babysitter is thinking of my late return. I reason that I appear to have this woman's life laid out in the plastic bags at my feet, and that she is therefore unlikely to run off with my phone. She would in any case be hampered by the large men's boots she is wearing.

"I have written 30,000 word essays and had to do an individual word count for them, I can find my friend's house" is the next conversational snippet thrown my way. I suggest a street name might help, but no, apparently finding her without the address will be much easier than writing a lengthy essay on Sigurd Someoneorother.

She asks me if I enjoy being a Vicar. I check myself swiftly; no dog collar, no hassock, and I really don't think I look like a Tim. I explain that I am in fact a Guider, and have just finished Guides. She informs me she used to enjoy Guides, and that's why she came prepared for this expedition with many bags and lots of layers and sensible shoes. I wonder if perhaps a phone number or address might have been a more sensible preparation, but thankfully she then informs me she has "made contact" and a car will be coming shortly.

I take my phone back, take my chattery teeth home and apologise to the babysitter.

This morning, still enjoying my meeting with one of life's eccentrics, I heave Little Fish into the shower. I hose her down, and then go to dry her. At which point she informs me she is no longer Little Fish, but instead "I am a talking towel that eats your children."

It's life, Jim, but not as I knew it.

Sunday, 14 November 2010


Eight years ago today.
One little lost baby with beautiful eyes.
In my arms
I picked her up eight years ago, and didn't put her down for another couple of years.

Tears, vomit, spasm, pain, seizures, the misery of a little bundle of woe who didn't know who she was, where she was, what this world was or what was happening to her.

And lots and lots of love.Smiles first, and then an interest in life
New skillsnew family members
all adding up to a little girl, less little now, with an enthusiasm for lifeand a determination to rule it!
Eight years ago, the ubiquitous "they" gave me a big list of "she'll never do". And, well, I suppose they were right in a way. You never have sat up, rolled over, stood by yourself, walked or talked. You will always be dependent on others for your every need, you have indeed become bigger and heavier, you've had those dislocated hips and now it looks as though your spine is on its way towards a more interesting life too. You do have those seizures they warned us about, and you have breathing stuff and feeding stuff no one mentioned.

But so what?

You are unique. You manage to extract every possible bit of enjoyment out of anything you do. There aren't many children who would get away with clouting toddlers, telling their teacher they don't want to do the lesson, teaching the professionals how clonus can do the opposite of what's expected, and showing everyone how just because you happen to be in a wheelchair, and happen to have a whole host of medical issues, there's no real reason why you can't climb mountains or fly off to Florida or rule the world around you.

Love you, little girl,

Saturday, 13 November 2010

Saturday Silliness

Some days, you just know it's going to be one of those days.I'm not sure what gives it away.

Wednesday, 10 November 2010

Take three sausages and a bowl of rice

Add tomatoes, onions, cheese, and a bunch of Girl Guides.

Factor in a newly fitted smoke alarm in the church hall, and decide to move the cooking competition into the carpark. Pray for good weather, remind the girls to bring coats, consider lighting options and decide that the darkness adds an extra dimension. Discover that Brownies with Sparklers are an extra complication.

And then enjoy Vesuvius

Mix and match for the picky eaters patrol
Enjoy the "better than my Dad's" tomato risotto ring.
and appreciate the optimism of the cunningly disguised carbonised sausages in the "pretend it's a pizza" entry.
Hand those same girls chocolate pudding, chocolate, chocolate biscuits. And watch as three patrols make a chocolate cheesecake style desert. And one group create this
Poo on a plate, with biscuits.

Much washing up - and one group not only washed and cleared their own stuff in record time, but then happily helped the others - now that's living the Promise! Only casualties the teatowels - I would love to know what it is about the snowy whiteness of a crisp clean teatowel which provokes the apparently irresistible urge to use it to polish greasy gas stoves, mop floors, clean mud off shoes, and finally wipe tables. Still, sharp knives and no cuts. Rationed cooking equipment and no fights. Rearranged patrols and no arguments. Raw meat and no food poisoning. And at least one girl planning to repeat the meal for her own family's dinner later in the week. Not bad!


Sunday, 7 November 2010

Mog v Moggie

Camouflage cat's cunning plan to stay on the bed in comfort misfired when she chose to disguise herself as a knee cushion.Mog won the bed. Eventually. But camo-cat got her revenge, puncturing the mattress with a delicate claw.

Thursday, 4 November 2010

More chair love

Please imagine that above this sentence there's a picture of a beautiful Mog in beautiful clothes, sitting beautifully in this beautiful chair. There would have been, but life intervened. Sorry.

But ooo, look at her chair
Look at the most amazing stitching on the seat
and back.
Next time, I want them to stitch that seat cover rainbow out in different rainbow colours - how beautiful would that be?

Little Fish wanted in on the camera action, but refused to get up for it. She is struggling with the concept of switching the Nippy off and her own breathing on again in the mornings at the moment. Quite happy to lie there wide awake letting the ventilator take away all the work of breathing. Very odd to be having conversations with her whilst watching the settings which are telling me she's making absolutely no effort to breathe for herself.
I switch it off and unplug it, and she screams loudly and longly. Which would be bad, except that to keep up the volume on the screaming, she does have to take in large and deep breaths, and I figure that's probably a reasonably good way of kickstarting her own breath control once more. Slightly worrying that she seems to be needing it though.

And now for something completely different. A feline sacrifice to Euterpe.


Wednesday, 3 November 2010

New Chair

A long way off being anything like decent photos. But, we put her into it at 11.15, and there she stayed, apart from a few brief interludes, until 5.45.
Upright, albeit at a slightly different angle than before.
I realise she looks a bit dog's dinnerish, but the chest plate is deliberately wonky to avoid the gastrostomy, the headrest is tweaked to accommodate her head slamming seizures, the collar is back after a lengthy absence because it turns out that gravity is stronger when you sit more upright, and we didn't somehow magically fix her head control issues earlier this year. I'm not responsible for the twists and creases in her trousers and hey these really are grotty photos (I am responsible for the grottiness of the pictures, as opposed to the state of the small girl inside them).

But, for all that, we have a wheelchair again. A wheelchair the bus driver loves because he can clamp it safely and easily. A wheelchair we love, because it will hold Mog in a much better position. A wheelchair Mog loves, because when she stretches and goes into extension, the chair extends with her, folding her back up again as she relaxes.

I'll try to get some action shots later this week. But for those with enquiring minds, it's a Wheelchair Services own version of a FoamKarve backrest and seat cushion, fixed onto a JCM Triton Dynamix seat, fastened onto an Otto Bock Discovery wheelchair base.

This gives us custom moulded seating, adjustably tensioned dynamic backrest and footplates, tilt in space, recline, and a chair I know I can push uphill and over grass. It's been 14 months since Mog started having such problems with spasm and not managing in her old wheelchair, 6 months since we sat down with wheelchair services to try to find a solution. If this does turn out to be as comfortable for Mog as it appears to have been today, I think it will very nearly have been worth the wait.


Tuesday, 2 November 2010

The Power of No

There's no mistaking Mog's clear "Yes". There are a good few which are indistinct, but a big powerful enthusiastic "YES!" is unmistakable even if you don't know how Mog communicates. Her "No"s have been a little harder for people to pick up. They're harder for her to shape, especially when she's happy, and they're silent and fleeting, so harder to spot if you aren't watching closely. Recently though, everyone around Mog seems to be better at finding her No. This is good. Well, mostly. It's been causing a few problems at school apparently.

"Mog, can I sit beside you?"

"Mog, can I just push you through to the hall now?"

"Mog, let's get onto the bus shall we?"

"Mog, we're going to read a story now, alright?"

Interesting times whilst people adjust to the reality of a child with attitude. And whilst Mog adjusts to the reality of a life where you do sometimes have to go along with the majority even when you express your own opinion.

Little Fish, too, is learning the power of No. Hers and mine. I ask her if she wants something, she says "No!" I walk away. She screams, I suggest she might mean yes, she yells that she doesn't want it she doesn't want me, she doesn't want any of it. I walk further away, she says she is ready for my help, I come back, she yells "No!" and I walk away again. This gets old fast.

She's learning my "No" too. We have a deal, LF and I. She can lie in bed with her bedroom door open at night as long as she lies quietly and goes off to sleep, rather than calling out and joining in with the general household conversation. So far, so fair. Except that she's now taken to objecting to having the lights on in the hall and bathroom as she thinks she needs it dark in order to sleep. Sorry, LF; that would be a No. You don't get to control the rest of us to that extent, and whilst you may be happy to go to bed at 5.30, the rest of us do need to use the facilities on occasion after that.

Meanwhile my own "No" is being challenged elsewhere. A friend kindly pointed out this Skull and Crossbones Slanket, which she feels would make an ideal winter wheelchair coat for Mog. Why do I have the feeling my No may have to become more flexible than theirs?



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