Thursday 30 December 2010

Pause

We are on holiday. Poor phone signal and one charger between the three of us. Lovely cottage, good friends, happy children, potential for a hood week. But probably not much blogging! All well here though, for those of you who worry.

Tia

Saturday 25 December 2010

Christmas Blessings

Love - to everyone. Especially for those who are spending Christmas alone or in the company of fewer people this year, through bereavement, through illness, relationship break down or simply travel difficulties, may you be filled with Christmas Love today.

Joy - to the World! May there be moments of Joy even for those with children who do not understand the pleasure and excitement around them. A special smile, a giggle, the little things we live for - may these be present today and our children's gifts to us, especially for those with very sick children today.

Peace - that peace which passes understanding to all those of us who are troubled in mind and spirit today. The peace which comes from sending the children outside or into another room to play with new toys to all those who already need a break from overexcited children. The Peace of mind which brings the ability to rise above digs from awkward houseguests to all those who need it!

Patience - with children who have been awake for hours, and with children who don't seem to want to wake up at all. Patience to children, with an acceptance that certain things need to be done and will happen in their own good time.

Kindness - instead of snappy answers, may I (and anyone else similarly snappily inclined) dig into that reserve of Peace and Patience and manage to find a sweet smile, a battery, a screwdriver or pair of scissors, and the willingness to forgive, especially to forgive the refusal to eat sprouts and parsnips.

Goodness - may there be Good Things happening generally today. Good News for those who need it, in tiny measures and in big ones too. Good gifts appreciated by giver and givee.

Faithfulness - to all who are Believers, may today bring a reminder of all that has been and is to come. May the God in whom we have our Faith multiply it and sustain us.

Gentleness - to encourage my children to make the right choices rather than dragging them from what they want to be doing towards what I need them to do. To accept outrageous suggestions from elderly relatives and apply the "never going to happen, so don't get het up about it" filter rather than attempting an unworkable re-education programme.

Self-control - to all who stand in need of it, both ourselves and those around us!

Wishing you all a very Happy Christmas and a Bright New Year,
Tia

A Christmas Carol

In the bleak mid-winter
Frosty wind made moan,
Earth stood hard as iron,
Water like a stone;
Snow had fallen, snow on snow,
Snow on snow,
In the bleak mid-winter
Long ago.

Our God, Heaven cannot hold Him
Nor earth sustain;
Heaven and earth shall flee away
When He comes to reign:
In the bleak mid-winter
A stable place sufficed
The Lord God Almighty
Jesus Christ.

Enough for Him, whom cherubim
Worship night and day,
A breastful of milk
And a mangerful of hay;
Enough for Him, whom angels
Fall down before,
The ox and ass and camel
Which adore.

Angels and archangels
May have gathered there,
Cherubim and seraphim
Thronged the air;
But only His mother
In her maiden bliss
Worshipped the beloved
With a kiss.

What can I give him,
Poor as I am?
If I were a shepherd
I would bring a lamb,
If I were a Wise Man
I would do my part,-
Yet what I can I give Him
Give my heart. Christina Rosetti

Friday 24 December 2010

And that's a wrap!


One Christingle Christungled,
The last Advent story read,
The wrapping completed, the presents all stockinged,
And that's me off to bed!

Happy Christmas! Health and strength to all those who need it, a measure of peace to my friends who have had a miserable 2010, patience to parents of early risers tomorrow, and Happy Birthday, Lord Jesus.
Tia

Thursday 23 December 2010

Good Samaritans, or Who Needs Respite Anyway?

Our second (and final) day of playscheme today. And, after Monday's route march, my chance to get everything sorted and ready for the next few days.

Our carer agrees to come slightly earlier, so the girls will both be up and dressed (in actual clothes, much to Little Fish's disgust; she's spent the past two days in big fluffy sleepsuits) in time to hike across to school. I actually remember both lunch and a feeding tube for LF, refill Mog's bag with her own supplies, and we leave in time to be only mildly late.

An uneventful walk up to school; LF goes off-piste a couple of times but mostly rescues herself. We arrive, I unload the girls, and go to grab my handbag which was hanging on the back of LF's wheelchair. It's not there. I say a rather hastier goodbye than planned, and retrace my steps, rather than heading off to find fish for tomorrow's feast. Get to the bumpy bit of the road, no bag. Further down the road, no bag. Make mental list of what's in bag - purse, cheque book, bank book, keys including the only set of keys we have for the van, assorted flotsam and jetsam, chocolate coins but thankfully not my phone which is in my pocket. Keep walking, hunting through the hedges and convincing myself I have seen it in the shadow of every dustbin.

Just as I round the corner to home, hoping against hope that it may have fallen off in our doorway, my phone rings. Playscheme have had a visit from a man who has found my bag. He doesn't have it himself; he passed it to someone else who lives just over the road from school. I retrace my steps, reaching the house with my bag just seconds before kind woman with bag leaves to drive bag to my house. Cancelling plans to find big shop, I walk back home again, calling at minor shoplet almost en route and deciding that what I have in the freezer will just have to do.

Home. Playscheme call, saying that Mog is having a seizure. I ask for details. It's clonus. I suggest they straighten her leg - this works, and they agree to call again if she has more problems. I eat breakfast, drink coffee, and gather together all the presents, wrapping paper, scissors and tape, assembling them all in the playroom where I hope I might find something suitably Christmassy to watch as I wrap.

Playscheme ring again; Mog has been fitting for 11 minutes and they thought I should know. I warn them she often goes to 28 minutes, which is why we give meds at 30; they agree to call back if further problems. I wrap Little Fish's present and begin on Mog's. They call back; she's still fitting. Whilst playscheme can give her Midazolam, once she's had it, she needs somewhere quiet to sleep it off for the next few hours, and sometimes needs oxygen, so would definitely be better off at home.

I suit up again and head back out, ridiculously heavy oxygen cylinder on my back. They warn LF that her day at playscheme is going to be cut short, and we all feel bad about the fact that she will miss the party and visit of a certain man in red. I walk into the school to be greeted by a grinning Mog, who stopped her seizure as I walked through the door. Toad. We debate what to do next, and she demonstrates she's still twitchy and definitely doesn't want to stay. I really don't want to walk home with her, then bring her back out again to go and fetch LF. But nor do I really want to sit in the school library for the next five hours.

I phone a local taxi company to see if they can bring LF home later. They say they are not running any wheelchair accessible taxis as it is too snowy. Playscheme are surprised to hear this, since this particular taxi company delivered at least one child to them this morning, in her wheelchair, in an accessible taxi. Hmmm. We discuss further options. Playscheme come up with the number of another taxi firm, which is not answering its phone. Two staff offer to walk LF home after the party, provided that they can get back to school themselves before the end of the playscheme day. We leave it that they will do this if the second taxi company is unable to help, and I load Mog back into her chair ready to go.

Mog and I slither home together, her monitor shrieking a warning that actually, post-ictal Mog does not appreciate breathing cold air. We collected some odd looks as I pulled the blankets up around and over her face until just her pony tail was on view, but she seemed to appreciate it.

Home, and drip our way through the house to the playroom. I shuffle a pile of presents off the settee and settle Mog in a corner. She grins, twitches, and falls asleep. I consider the things I was supposed to do on Monday, which got shunted to today, and the things I was supposed to do today, which will now have to wait until January.

And then I consider the fact that I don't have to cancel all my cards, I do have access to money over the holidays, and that LF isn't going to miss her party, and is going to be delivered to us one way or another. I can, if I am quiet, wrap a pile of presents as Mog sleeps, and in the meantime a house with a sleeping Mog is very nearly as peaceful as a house without children, and very definitely quieter than a house with an overexcited Little Fish.

I am, however, slowly sliding towards an agreement with those people who think the snow is a nuisance!
Tia

Tuesday 21 December 2010

Bethlehemian Rhapsody



Shamelessly stolen from Alison and Val, but thought some of the non-facebook crowd might appreciate it too (and Graeme, for some reason this reminds me of you!)

Tia

Monday 20 December 2010

Good news, bad news.

The good news is, it's snowing here. Beautiful, crisp, white, clean and fresh snow, falling softly and covering everything with a sound-proof blanket. Traffic noise hushed, footsteps silenced, the only sounds giggles of small children with snowballs and birds clamouring for food.

The bad news is, our weekend carers cancelled, Waitrose cancelled their delivery too, and most of our Christmas presents are apparently in Inverclyde.

The good news is, the milkman made it, and managed to bring bacon and eggs and other essential breakfast supplies as well.

The bad news is, the milk froze on the doorstep.The good news is, this reminded me of my childhood.

The bad news is, I don't remember this happening back then

The good news is, we still have plenty of milk and not too much of it dripped down behind the 'fridge where it will turn into evil-smelling cheese.

The bad news is, I had no contact from playscheme to say it had been cancelled.

The good news is, our morning carer turned up - an hour late, but in time to give Mog a shower and get her wrapped up.

More good news in the form of several weather forecasts all promising a foggy but snow free day, so we wrapped up warmly and hiked over to Mog's school to see if the playscheme was running. Even better news, it was!

I dropped the girls and step/fumble/stepped my way over to Waitrose. Bad news; I remembered I had not packed Little Fish a lunch for playscheme, so bought her a sandwich and made plans to trek back to school after going to the chemist.

Good news; playscheme rang and offered to cook her some pasta and sauce!

Bad news; I got to the chemist to ask for LF's prescription, and they told me that it won't be in until January 10th.

I point out that they have had the prescription request for two weeks, and that perhaps it might have been useful to tell me this sooner, as I now have just two doses left. They shrug.

I walk to other chemists, balk at the queue, and realise that I am wasting time; last time they couldn't get it, no other company could either and none of them keep it in stock as it has a limited shelf life. So I head over to the GP surgery, where I queue to speak to a receptionist. She directs me to the prescriptions lady; I join a different queue. Eventually I reach the front of the queue, with a new respect for the wonderful prescription lady who remains calm despite unending phone calls and queries and forgotten names of drugs and complicated spelling issues.

I explain the issue. She says she will speak to the doctor about prescribing an alternative. I sit. Thirty minutes later, someone else hands me the original prescription, together with a note claiming that Consult Pharmacy (extreme far end of town in opposite direction to home and playscheme) have it in stock. I hike over to Consult Pharmacy, who look at the prescription and tell me they will have to order it in. I am not best pleased with the Surgery at this point. They phone, and are promised delivery by tomorrow afternoon.

The bad news; as they phone I hear them read out the prescription and realise it is the wrong strength medication.

The good news; if they hadn't read it out over the phone I would not have noticed and would have been giving LF a double dose, and all I now have to do is give half the normal dose which means that one bottle will last twice as long.

By this point, it is snowing fairly heavily once again, and I am not altogether surprised when the playscheme supervisor rings me to say playscheme is closed.

The bad news; I'm now 1.5 miles from school and it'll take me a while to walk there.

The good news; I'm not the last parent to turn up.

The bad news; I then have to wait 15 minutes for staff to finish changing the girls so I can take them home.

The good news; I find the phone number for a local taxi firm which has accessible taxis.

The bad news; they have no accessible taxis running today.

The good news; by the time the girls are all changed and buttoned into coats and blankets, the snow has stopped.

The bad news; it's still cold, it's still a mile home, and the new snowfall has made it almost impossible for Little Fish to get any traction in her powerchair.

We do eventually get home, and collapse together onto a nice soft settee. Little Fish's lunch proves to be enough for all of us, I have some rather nice Apple Yvonne* in the 'fridge, and we don't have to go anywhere else today.

The bad news; the cats have apparently objected to the snow and messed on the floor.

The good news; I have cat litter and a tray, so make them up a toilet.

The bad news; they flee at the sight of this, out through the cat flap and sit under the hedge where they proceed to do the things cats need to do.

The good news; the snow is still jolly pretty and now that I am warm and can feel my toes again, there was a nice jolly epic-ness of the four hour hike I hadn't planned to do. And now it's snowing again.

I'm not entirely sure how we're going to get that bottle of oxybutinin tomorrow though... I am however considering the purchase of a milk-float, this apparently being more reliable than delivery lorries, post vans, and carers four wheel drive cars.
Tia

*Swedish Apple Charlotte a favourite here; cooked apple underneath with cornflakes, butter and sugar on the top. Had no cornflakes and so made it with porridge oats instead. No longer Swedish but vaguely Scottish, so renamed after my sister-in-law.

22

My candle burns at both ends;
It will not last the night;
But ah, my foes, and oh, my friends--
It gives a lovely light!

Happy Birthday, Goldie

Saturday 18 December 2010

Deep and Crisp and Even


I'm going outAnd coming in againThis snow is cold
And I am freezing
And I want to go out again
And get up again
And build snowcastles
And now I'm freezing again.
Can we go inside again?
And can we go outside again?
It's a very serious matter.
We need to build a snowman.

Ooo look at our neighbours' lights
Is it Christmas yet?

Shortbread - for Anna

Very simple -

4 oz butter,
2 oz caster sugar,
6oz plain flour,
2 oz ground rice.

Put dry ingredients into a bowl, chop the butter into tiny pieces and stir it in with spoon, hands, one of those fancy things for cutting the butter into pastry dough if you have one (I don't) a food mixer, or whatever you fancy. When the butter's disappeared and the mix looks crumbly tip it out onto a floured surface and squash it together until it sticks. Shape it however you like - you can roll it out and cut rounds if you want but I generally just slap it together in the middle of a greased baking tray, shape it into a rectangle and then cut it into fingers. Stab it all over with a fork, then shove it into an oven at 160C (320F, gas 3) until it's just starting to brown slightly - anywhere from 15 minutes to 40 depending on how thick you've made it. I like mine slightly underdone so it's almost chewy; cook it for longer and it'll be crunchier.

Tia

Friday 17 December 2010

Perspective

Yesterday afternoon, I felt the need for biscuits. I walked into our kitchen, took down a mixing bowl, grabbed flour, sugar, ground rice and butter, mixed them up, flattened the mixture down onto a baking tray and shoved it into an oven. Cleared up, burped Mog, changed Mog, put the kettle on and brewed coffee. Took my plate of shortbread out of the oven, and risked my fingers breaking it up whilst still too hot, sat down in the sitting room and ate it as the whole house steamed gently of warm sugar and cosiness.

"That smells good," commented my cleaner, arriving at that moment, "I"m much too lazy to cook, I just buy things from the shop."

And I thought, hmmm. I'm sitting in my slippers, I haven't left the house all day, it took me five minutes to mix the dough and five to clean up, and in return I have hot, fresh, shortbread to go with my perfectly brewed coffee, and the house smells fabulous. I'm much too lazy to find my boots, find my coat, find Mog's blankets, walk all the way to the shops and then traipse around them hunting for biscuits, then queue for twenty minutes dodging the insanely long queue for the post office before walking home again. If either of us is lazy, I don't think it's her.

And then I started thinking about other stuff too. We have a breadmaker, I use it to bake the majority of the bread we eat. Not because it tastes better (although, mostly, it does), not because it's cheaper (it isn't), but because I can store more flour and yeast than I can store loaves of bread, and because, again, it's easier to tip a pile of ingredients into the machine and press "bake" than it is to drag myself over to the shops and back. And I get to stay inside, stay warm, and smell the bread baking. Yet others seem to think that's too much work. It feels like a lot less work to me, especially when I get the flour delivered.

Moving away from food (although it is a struggle, especially at this time of year), I have two girls. Apparently, simply for loving my daughters, I am some kind of a saint. This life is all I have ever wanted it to be; I have everything I have ever hoped for, I am doing the things I planned to do when I was twelve. And yet, some people can't share in my joy, don't celebrate with me, but instead offer pity and sympathy. There are, undoubtedly, trials and tribulations involved. I'm not going to pretend life is perfect and easy and constant sunshine and daffodils. For every freshly baked loaf of bread there's a poo explosion, and for every giggle a tantrum. Balance. I have friends, family, and a network of support around me. You have to leave your warm house every day and drive miles to work at a job you dislike. And yet you pity me?* I have it easy.

Tia
*If you're reading this, I probably don't mean you, personally.

Thursday 16 December 2010

Emmanuel

The glory and the majesty, the mighty come to worship
The humble, the lowly, setting aside their work to come and find Him. The son of God, born not in a palace but in the squalor of a stable
Emmanuel, God With Us
God With us, in the midst of us, at the centre of all this daily life
A baby no more, still at the centre of it all.
Tia

Monday 13 December 2010

Party season


Tuesday, Ladies' night out.
Friday, Christmas Lunch.
Saturday, Christmas Party.
Sunday, Carol Service, pre-Christmas Lunch, mini school reunion.
Monday, today, the Guides Christmas Party.

Mog was poorly last week. Made it into school for nearly a whole day before being banished once more, but had an excellent extended weekend of parties. Yesterday, she was fine; last night she was very not fine, and today she seems absolutely fine except for one smallish issue - she keeps forgetting to breathe. I don't mind her obstructive apnoeas; at least I can usually hear her struggling. These ones though the only warning is the beep of the monitor as her sats drop into the 70s. A gentle nudge and she breathes again, laughing at my concerned face.

So, plenty on my mind, and a few days where we've only been at home in order to sleep. Which is my attempt at an excuse for having forgotten until this morning that I was supposed to make a piñata for the Guide Christmas party. Thankfully, two things we're not short of in this house are old paper and flour. Resurrecting a flattish balloon from Friday's party, I made a start. Having coated the kitchen in a fine layer of drips, I stood, holding one very soggy balloon, and wondered what to do with it next.

Hurrah for ceiling track hoists!
And hurrah again for baby baths to catch the drips.

Two hours under the fan heater, and we were ready for the second layer. Second layer taking significantly longer to dry, I had a prolonged and eloquent debate on facebook researched the possibility of using the microwave to speed things along.
Before realising that the gold paper probably wouldn't make the microwave very happy.

Beautiful!

But very soggy. No problem, shorten the ribbon, bring it closer to the fan heater.
Did you know, warm air makes balloons expand? And that an expanding balloon will push apart soggy Papier-mâché turning your beautiful giant bauble into something more closely resembling an elderly daffodil bulb post flowering?

No matter. Pop the balloon, and bake the beastie until it is rock hard and only slightly scorched around the edges.
Remove from oven, allow to cool. Cool some more. And some more. And some more. And then fill with chocolates, party poppers, glitter.

Decorate. Realise you have created something which looks less Faberge and more as though your five year old brought it back from school having made every step of it herself. Debate allowing her to take credit, before deciding she'd tell everyone the truth anyway.

Sit back, wrap pass the parcel, attempting to create inclusive forfeits.

Sit down again. Stand up, visit bathroom, realise you may have more work left than you first thought.
Take a closer look at the floor, the kitchen, the playroom, the sink, the oven and the radiator.

Sigh.

Go to Guides.
Tia

Thursday 9 December 2010

The Inky Wife


Slightly smudged, but very proud (and note new ramp to access school stage behind her).

I am so tired.
They could sleep in the stable.
I wonder who that could be?

Hello Ulysses!
Tia

Tuesday 7 December 2010

Recipe for a Frazzled Morning

Take one night, disturbed not by a sick child but by a small girl peeling stickers off the wall then getting upset about rubbish in her bed. Add one accidental lie in, and wake to the sounds of a child choking.

Race from bed to sick child. Look at sick child peacefully sleeping. Observe sick child begin a seizure, brought on by bumping the bed when running to rescue child from choking. Observe that sats appear to be fine. Listen, puzzled, as choking continues. Check cats, both of whom appear to be eating happily.

Realise choking is coming not from Mog, who has a cough and tends to choke anyway, but from Little Fish. Stand by Mog's bed, watching her fit for a little while, whilst more awake part of the brain jumps up and down and eventually succeeds in pointing out breathing problems trump seizure activity in order of priority.

Stand by Little Fish's bed, puzzled, whilst sleepy part of brain says "But she doesn't have breathing problems." More alert part of brain points out that needing a ventilator overnight should, probably, count as having a breathing problem. Assess choking noise and realise it is in fact simply sound effects from being ventilated through a nose full of snot. Debate waking LF, but settle for checking all settings and a very gentle repositioning to enable snot to drain through mask. Make mental note to wash mask in the morning, a note which has been forgotten until I type this.

*************
Interlude in blogging as I wash mask.
*************

Make tea, sit quietly, attempt to wake up. Find clothes, assemble on body in mostly correct order.

Open door to carer at 7AM and debate which child should be woken first. Neither girl stirs when overhead lights switched on, then both girls wake at same time, each equally unhappy at having been disturbed. Send carer Mogwards and attempt to pacify a grumpier than usual Little Fish.

Dress Little Fish and acquiesce to her request for pancakes for breakfast. Mix batter. Clean frying pan. Grease pan, pour pancake, watch as pancake frizzles and sticks to the sides. Scrape pancake off pan and scrunch onto a plate. Pour second, more respectable pancake, toss, then slide onto plate for Little Fish. Turn around. Knock remaining batter over. Watch as it pours over cupboard, trays, assorted baking dishes, and floor. Mutter. Spread chocolate spread for Little Fish, scrape together enough batter for one more pancake. Pour. Watch as pancake frizzles and sticks to sides of pan once more. Add "dedicated omelette and pancake pan" to mental Christmas wishlist. Scrape pancake off pan onto plate, splat chocolate spread over the top and share with Little Fish.

Remember this is a fluid balance record day for LF and measure precisely 220 mls water. Record. Apologise to school for requiring them to weigh and measure all input and output. Trip over cat.

Put third load of washing in machine, second out to dry, clear up pancake batter puddle and ponder what to do with now disgraceful tea towel.

Make coffee.

Drink coffee.

Begin marathon phone session. Order incontinence supplies for the holidays. Request nursing supplies. Order feed supplies. Have long and frustrating debate with automated phone system until it finally agrees to pass me over to the prescriptions line at our surgery. Wait in a queue. Realise my call is very important to them. Wish they would time this message to coincide with a break in the music rather than cutting in at random intervals, mid phrase. Decide to be thankful the music is instantly forgettable.

Eventually reach woman on other end of prescriptions line. Realise it is not the usual prescriptions lady when she requires me to spell out the girls' names. Realise this will matter when she is unable to find the medications we require. I say it's on the repeats, she says it isn't. I say we've had it since she was a baby, she says it isn't on the list. I say we need it. She says it isn't there. I repeat that we need it. Silence. She agrees to write a note for the doctor. I ask her which doctor, since our GP has just retired. She gives the name of a different Dr. I hope for the best.

I ask for the next drug. She says it is a controlled medication and that we can't have it. I say we need it. She says it is controlled. I point out it is on the repeats list. She writes another note for the Dr. I ask if someone has been editing the prescriptions list. She gets very huffy. I ask for another drug. She asks me if it has a different name. I spell the name for her. She finds it. I ask for the next drug. It too has vanished from the list, despite being prescribed monthly since Mog was two years old. I forget to check whether she has listed all the ones she can't find on her note to the new GP. I go through the rest of our repeats. Repeat above conversation. And again. And again. I lose track of what has and has not been ordered. She remains adamant we cannot have certain medications at all. I move to second child's list. She finds one medication which we could not find on first child's list. And tries to insist we can only have it for this child. I point out both children have painkillers and request the larger bottle we used to get. She insists 100mls is plenty (100mls is ten doses, at 3 doses per child per day one bottle will last less than two days). I consider beating my head against the worksurface, but realise it is still sticky with batter. I consider beating her head against the wall, but realise this would involve leaving the house, something I have successfully avoided doing for most of the past week.

Twenty minutes later we complete the phone call, a call which usually lasts two minutes. I have no idea whether she has recorded all our medications or not, I have no idea whether she will send the amended list to the Dr, and I have a feeling I am now supposed to be making an appointment to see the Dr - who may or may not be our replacement Dr - in order to request that the supply of one medication is increased. Since I have no intention of taking healthy children to sit in a waiting room crowded full of ill people, I decide to wait a couple of days and hope our regular prescriptions lady is back on the job instead.

I hang up the phone and find a message waiting. Phone my mother to discuss the relative benefits of coconut, almond, rice and soya milks. Debate the finer points of dairy free cooking, and point out that one of her tried and tested recipes is dairy free anyway. Discuss one hundred and one things to do with an overcooked plum cake (mainly; insert into Dad's lunchbox and test the theory that he never notices what he eats at lunchtime anyway).

Make coffee. Drink coffee. Breathe. Blog.
Tia

Sunday 5 December 2010

A different kind of normal

Nikki over at Blogs for a Cause is trying to raise money for Sarah's Covenant Homes. She interviewed me a few days ago, and here's her post, take a look. We can't all do what Sarah does, but if lots of people helped a little, what difference would that make?

Excuse my lack of wordiness here; I haven't left the house since Tuesday (Mog's been a little unwell), and apparently, when I don't leave the house, I lose all desire to communicate with the outside world.
Tia

Wednesday 1 December 2010

December memos

Dear hoist engineer,

You are a hoist engineer working for a company supplying hoists to people living in the community. It's safe to assume that the majority of your clients will either have a disability of some kind themselves or else be caring for someone with a disability. "I've met some Disabled who have more between their ears than normal people" is therefore a sentence you may wish to consider striking from your vocabulary sooner rather than later. Oh, and whilst pruning vocab, could you perhaps understand that children attending special school have not been "Sectioned"?
Thank you for your kind attention in this matter.


Dear Weather Man,

Snow. Snow, snow snow! Everywhere in the country, snow. And what do we get? less than 3/8ths of an inch, not even enough to sew a seam with, which falls in the night and fades away during the day. This is almost worse than none at all. Could you please send us a nice pretty fat snow blanket so we are no longer the only green spot in the country or else turn the rest of the country's snow into grey slush so we can laugh at them ?


Dear Mog,

I know you don't like having dental treatment. And I know you can't swallow. But they really were suctioning you just as fiercely as I would have been. Aspirating the water and tartar really wasn't necessary. If I've misjudged you and this chest thing is totally unrelated, I apologise. But either way, could you just calm down and breathe a little please? I don't want to call out the little green men just yet. Or at all, really.


Dear Little Fish,

Yes, the kitchen light is on. I'm mixing meds, washing nebs, making cups of tea, feeding the cat. You want total darkness in your bed, allow me to close the door. Once you are in bed, you don't get to control the light switches in other rooms. Deal with it. I love you dearly, but you aren't the one in charge here and we both seem to be forgetting that a little again.

Dear Feet,

The eczema is itchy. And optional. Desist.

That's all for now.
Tia

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...

Tia

Wednesday 24 November 2010

Words

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!

Tia

Tuesday 23 November 2010

I promise...to 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?
Tia

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.
Tia

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.

Tia

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!

Tia

Tuesday 16 November 2010

Encounter

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.
Tia

Sunday 14 November 2010

Eight.

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,
Tia

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.
Tia

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!

Tia

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.
Lovely.

Tia

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