Friday, 30 November 2007
It was a beautiful service and although not an easy day, I cannot think of anything which could have made it better. And I can think of lots of ways in which it could have been a lot worse. I'm not sure what happens now; we've spent the past three months gearing up to this day and now it's over and done.
I suppose now we start to get on with the business of living life without her.
Thursday, 29 November 2007
Tonight, I am making pizzas in her memory.
She loved pizzas, my Goldy. Could eat three quarters of a large pizza, lubricate it a little with a bucket of coleslaw, burp loudly and demand ice cream. She was as slim as a wand. After I've eaten large quantities of pizza, I want nothing more than to lie down and snooze. Goldy would be energised and ready for stories and singing and music and walks in the park. Alright for her; she just sat there; we were the ones bringing the world to her wheelchair.
Thursday nights were good nights for pizza with Goldy. Our cleaner comes on a Thursday so the house is usually tidy. A takeaway pizza means the kitchen stays pristine for one more evening. Goldy was an enthusiastic pizza eater; grab a slice with both hands and hoover the topping off it in one large slurp. Lick the base and munch, open mouthed, on the soggy innards, before casting the crust away. The first slice would disappear whole. The next few would be mostly eaten, busy fingers searching for dropped topping, bits of cheese trailing from fingers to chin to chair. And the final few would be carefully picked over, tasty morsels swallowed and the rest distributed around the room and secreted in the folds of her clothing. Tomato and olives and cheese mixing to a deep reddish purple colour; hands and eyes and hair and clothes and chair. Glee. And best of all, on a Thursday night our carer would come and process Goldy through the shower and into bed, dealing with the whole pizza monster whilst I simply swept up the crumbs and sat back to wallow in carb overload. Showering the purple headed pizza eater was always an entertaining exercise; as she was hoisted out of her chair bits of half chewed pizza would burst out like popcorn without a lid and coat the floor and walls of the bathroom. Strings of cheese would stretch from chair to shower bench and then attach themselves to the carer like giant cobwebs. And all the time you were shedding Goldy's clothes her busy fingers would be selecting the tastiest dropped bits and eating them, flicking the rejected pieces far and wide. Our carers knew to wear old clothing on a Thursday night!
At one point we lived just half a dozen doors away from the pizza place. We used to walk there after school once a week to order a whatever the latest special might be; super humungous pizza for Goldy and garlic bread for myself. Walking back pushing Goldy, arms outstretched, head dancing madly, shrieking for joy at the treat to come, whilst trying to balance a large square pizza box on the handlebars of her wheelchair always entertaining. We only dropped the box once, and they replaced it for us.
We had pizza for Goldy's birthday every year, pizza to celebrate the end of term, the end of the holidays, discharges from hospital. I still have a freezer full of pizzas we had as emergency meals for Goldy; all our carers knew where to find them if I had to be elsewhere. The last meal Goldy ate whilst living at home was pizza, and the first meal Goldy ate with her new carers was pizza too.
I have eaten pizza since Goldy died, but I can't bring myself to order from "our" pizza place. And I can't eat the ones in the freezer either. I wonder what I'd have to mix them with in order to puree them down for the little girls?
I am not making these pizzas for myself but in memory of Goldy. I hope the people who eat them appreciate them as much as she did. And now my pizza dough has proven, and I must go and knock it back.
I wonder what heavenly pizza tastes like.
Wednesday, 28 November 2007
Yesterday, I shopped
Yesterday, today, forever? I sincerely hope not!
Yesterday after meeting the curate, Little Fish and I hit the shops. What do you wear to your own daughter's funeral? I'm not sure that Trinny and Susannah have that as one of their categories. Yes, I know I left it a little late; turns out I'm a leetle larger than I thought I was and stretchy leggings whilst comfy probably aren't the best thing to be wearing. So, we headed off to an outlet centre to see what we could find.
Eek. Honestly. It will come as no suprise to those who know me that I am not a dedicated follower of fashion. I'm also not someone who considers anything costing £500 a bargain simply because it "should" cost £1000 or more. That's not a bargain that's a sizeable chunk of my monthly mortgage repayment! I am also not a size 10. Or a 12. Apparently larger people don't want to buy clothes. Or shoes.
Oh. I have a gorgeous little dress for Little Fish to wear. Ebay came up trumps and she has a very fetching pinafore. But nothing to wear under it and it's a little chilly for bare arms and legs. So, out of the scary ladies clothing shops and into the everything a bargain children's shops. Nothing for Little Fish. I should mention this shopping trip is not helped by the fact that every time we enter a shop LF shouts "No!" very loudly and slams her hands onto her wheels, an effective sudden braking method which has me tripping over her chair and landing headfirst in front of her if I am not careful. LF, it turns out, prefers to sit outside the shops watching the twinkling Christmas lights. I don't blame her, but this is not exactly helpful when we are women on a misson. Note to self: explain the mission to the toddler before you leave next time, bribe her with chocolate or actually get organised and find a babysitter.
We leave the outlet centre with nothing useful for either of us but mysteriously with a new outfit for Mog. Who already has more clothes than will fit in her wardrobe. I don't care; it's cute. And it was reduced.
Soooo, into the city centre. I haven't been to the city since Little Fish moved in in February. As we attempt to walk through the streets I remember why this is. Not only her sudden braking method but that "oh I must stop in the middle of the street and double back on myself because I've just seen something interesting in a shop window but oh no I'll change my mind and go back the way I started moving and oops is that my phone?" manouvre (say that three times without taking breath!) beloved of the majority of Christmas shoppers. Happy Happy Joy Joy.
My enthusiasm goes up in leaps and bounds at the discovery that Debenhams lift is out of order. Apparently there is a second entrance in a back street, but I can't find it. BHS has nothing for us. M and S, hurrah, they can't fail us can they? Plus I have a large amount of gift tokens from last Christmas I really ought to spend before this Christmas.
I pick up a rather nice skirt. There is however nothing to match it. No matter, it's yummy, I like it, and with the gift tokens it's free really so let's grab it. Oh and that little jumper which will fit nicely under a jacket. And that yummy yummy baggy saggy jumper with ridiculously long sleeves that will fall into my soup all the time. All free with the gift tokens right? Until I get to the counter, where, after the inevitable 15 minute wait as one elderly lady complains about how awful it is that the shop does not still do the things they used to do thirty years ago and insists on the cashier finding the address for the chief executive so she can write and complain, I manage to pay for my haul. It is, naturally, at this point that I realise the pink and blue monopoly money I threw out just the day before was in fact the gift tokens I had been hoarding for the past 11 months. Sigh... Still, we have the skirt, this is progress. We stop on the way home to buy ingredients for a cheesecake; our housegroup is cooking for Alpha this week.
Today we went to mother and toddler group. We manage this once or twice a term, weaving it in where we can amongst the many different appointment threads we have to live with. Little Fish had fun; it's good to be able to do things which are actually fun some times not just the stuff we have to do.
That over, a quick lunch and then off into town to try to match something with the skirt. Success, eventually, plus another jumper which mysteriously leapt into my arms and insisted I brought it home. I don't care; it's yummy. Three yummy jumpers is probably excessive, but warm and cuddly is the way I'd like to go right now. Succeed too in finding, not matching items for Little Fish's outfit but a whole matchy matchy outfit for her. All happy. On the way home I realise I now do not have the 5 hours necessary to prepare, cook and cool the cheesecake. So pick one up from Waitrose.
Get home, whizz up a spiced apple sauce for the cheesecake so it looks a little bit homemade at least, throw Little Fish into bed and now I am off. Oh, I have 2lbs of cream cheese which is now not needed for the cheesecake. Any takers?
Tuesday, 27 November 2007
We'll travel back in time a couple of years. Fasten your seatbelts and sit down in the back there. Ready? Then I'll begin.
It is spring; it is that inbetween kind of a day when it is too hot to wear jumpers whilst on the move but too cool to have short sleeves when sitting down. I have a baby, and so does the curate's wife, newly arrived in the parish (with her husband the curate, although he doesn't really feature in this story). Since this is her first visit to our house, I have cleaned and polished and removed nearly all of Goldy's popcorn from the cracks in the floorboards. I have removed all evidence of slugs from the kitchen, and made flapjacks. I have fresh milk for the coffee, I have wiped down the baby toys and removed the grungiest from the toybox. Paperwork has been
Before Our Curate's Wife (very Provincial Lady!) arrives, we have a visit from the physiotherapist, who gets out baby Mog's splints and trusses her up like a Christmas Cracker. Exercises done and physiotherapist gone, I free Mog once again and try to convince her she'd like to sit in a chair. Mog takes exception to this; as a baby she had to be held all the time, all day long, or scream until she was sick.
Our Curate's Wife arrives, we admire each others' babies and settle down for a chat. I have, for a wonder, remembered to brush my hair. It is a shame that the cleanliness of the house is not reflected in my clothing and that I am, as usual, wearing a fetching white splodge of Mog-sick. This is my constant uniform at this time in our lives. Mog in contrast is pink and pretty, relaxed from her physiotherapy and happy to be the centre of so much attention.
It is as we are chatting that I realise I am wearing my pyjama trousers. These trousers are not immediately obviously PJs, so I frequently wear them all day long. This in itself is not a problem, however the fact that they are inside out with seams very visible is probably less impressive. Our Curate's Wife appears to find it reassuring that I don't have it completely together though, so we now have a slightly more real chat. This is good. Inside out pyjama trousers not the method I would have chosen for getting real, but it'll do.
So we talk not so much about how wonderful it is having babies but about how frustrating it can be, how difficult some things can be, how we feel the need to put on a show at times and shovel all the mess out of the way. I do resist the urge to open my cupboards and reveal my inner chaos, but I think we both know it is there, and we both appreciate that we would find similar things in the houses of most of the people we know. We wonder how people manage to keep a lid on their paperwork, why other people don't have overflowing in boxes and stacks of paper all over the house. With fine coatings of baby sick and dribble. It might not sound much, but the inside out pyjamas sow the seeds for a real friendship, for a time at least, whilst our lives are in the same place.
As Our Curate's Wife gets up to leave the sky darkens and we realise the rain will be here very soon. Umbrellas and jackets are found in double quick time, babies are shovelled into buggies, squawking wildly, and I offer to fun the pair of them home to keep them dry. My offer is declined, but I walk out with them and wave them off down the street. Inside out pyjama trousers I can live with, but as I walk back into the house something is hitting the back of my legs. There follows a short but entertaining (to onlookers) interlude where I twist around to have a look, and the-thing-which-is-hitting-my-legs twists away from me, causing me to pirouette in a manner which I would like to think of as elegant, but which in reality more closely resembles a warped corkscrew than a ballerina. Giving up, and deciding passersby have had enough entertainment for one day, I return to the house. Shrugging off my cardigan I am edified to discover one of Mog's splints velcroed to the seat of it.
Pyjama trousers (inside out). Sick soaked top. And a cardigan festooned with animal print leg splints. Fetching.
That was several years ago. We have a new Curate and Curate's Wife now, with a new set of small children. Mog is a baby no more, and Little Fish is definitely more toddler than infant these days. Today Our Curate came to call, a pastoral visit. This time I was prepared; our cleaner was here yesterday and the house is really rather gloriously tidy. As long as no one opens the bedroom doors. On the surface a far more together parent, one who has the ability to keep on top of all the chaos. Splints safely secured and not on seats, not a speck of sick in sight, and my towering stacks of paperwork are hidden in a blanket chest these days (and stuffed into the keyboard drawer of the computer table but lets not be too honest, shall we?). A more pulled together house, but one question from Our Curate and I dissolve into a soggy puddle of grief. Reality insists on intruding, no matter how much I try to tidy it away.
Sunday, 25 November 2007
The girls were delighted; Little Fish loves overcrowded shops with so much stuff to grab hold of and twist and pull and turn into new and interesting shapes, whilst Mog likes looking at lights. I meanwhile like looking at the flowers (our Christmas shop is in a garden centre) and kidding myself that I too could have a perfectly manicured garden with no more effort than that involved in gathering stacks of flowers into the shopping trolley and handing over large wads of cash. Thankfully sanity normally reasserts itself fairly quickly and I remember I might have to actually plant them out in the garden for them to make the garden look good, and that planting isn't something I enjoy doing when it's cold and wet and muddy and sluggy. Sluggy? The kind of weather we have right now when outside is so unattractive that the slugs slime their way into the kitchen through the catflap and take up residence in the recycling bin. I love my life, did I mention that?
I digress. Today we went to the Christmas shop. We took my parents which was an added bonus for the girls (and an added reason not to spend a small fortune on plants which I would then leave stacked up outside the kitchen until eaten by slugs and dumped straight into the compost bin. Yes people, I have no gardening skills but a large compost bin. Actually the compost at the bottom of the bin has been there so long that when I did try to get some out a few months ago to plant marigolds (which were munched by the slugs in record time) and strawberries (which died) I had to cut it with a knife. People, I have created my very own peat. Cool huh?). Apparently I digress again, sorry. Garden on my mind. Retail therapy also on my mind and thwarted by the presence of my parents who would, not unreasonably, expect me to actually make some effort to keep the plants alive. And slug free.
So, to the Christmas shop. This year our Christmases will apparently be either blue and white and filled with snowmen, or brown and gold and filled with frosted teasels. Who frosts teasels? Except possibly to put at the top of stockings on Christmas Eve to discourage wandering fingers until daylight. No, I'm not that cruel. My grandparents used to do that with holly though. Hearing that story is a part of our Christmas ritual. Of course for me to perpetuate that I would have to grow holly. I suppose it might be slugproof, perhaps I should give it a try sometime? But we aren't here for the garden (despite many parentheses to the contrary). Christmas shop! Steering our way past the ultra modern ultra fashionable bits (and past some poinsettia which were pink and yellow rather than red tipped - what's the point of a yellow poinsettia? It just looks dead before I've even got it in the car. ) we hit the main decoration
Here the girls are in wonderland. Flashing lights, twirly sparkles, mock Victorian trains with fancy glowing lights, jingle bells and sleigh bells and Father Christmases sitting on wreaths and teddy bears reading stories and Red-nosed-reindeer chasing penguins. Real trees, fake trees that look real, fibre optic trees, gold and silver and holographic trees, finely wrought metal trees with little crystal drops and giant inflatable trees with fat snowmen on the top. Giant snow globes, battery operated snow globes (no need to shake, the snow shoots endlessly out of the top of whatever is inside. Odd but acceptable when this is a chimney, downright weird when it is an angel or a Santa Claus - projectile dandruff perhaps?), LED projectors, outdoor illuminations second only to Blackpool, and a small stand dedicated to more low-key decorations. The kind which might actually fit in an average sized sitting room with a bit of room to spare for furniture and children.
And it's here that I find one snow globe which looks rather nice. Paperweight sized, smooth to the touch, unobtrusive but quietly beautiful. Inside the outline of a barn with a star on the top. Two figures bent over a very small blob in a manger. No bright colours, no cheesy plastic grins, no animation; just gentle, quiet, snow, and a silent Nativity scene playing itself out without the need for distractions. Did I mention I like our Christmas decorations to have a Christ-centered theme to them? No? Well I do. To spout an overused cliche (at least in overused in our church at this time of year), I like to remember the Gift as well as all the wrappings. Except that we do have a tree. And bells. And candles. And cute fluffy things the girls bring home from school. Ok, Ok, I know my stance makes no sense. Anyway, this pretty little snow globe is actually looking as though it might find a place in our home. I know the girls would enjoy watching it. It is a nice weight, comfortingly solid.
Turning the snow globe over to check the price, I notice that it is musical. Bonus! So what tune would you expect it to play? It is a Nativity scene under glass. In the Bleak Midwinter? Away in a Manger? Oh Come Oh Come Emmanuel? I'd settle for The Little Drummer Boy at a push. Alas no, although the sound it produces is indeed a very gentle tinkle tinkle, a volume and pitch I could live with, the tune it produces is in fact Santa Clause is Coming to Town. Lyrics here on the offchance you are the one remaining world citizen who hasn't heard it on every radio station, in every shop for the past three weeks. I'm still confused. Who thought that would be a good song to match with the Nativity scene? And yes, it was definitely a Nativity, not a jolly fat red man getting stuck in a chimney. Are Mary and Joseph supposed to be singing this to the baby?
So no Snow Globes for us this year. Not that we needed one in the first place, but thwarted spending is giving me a rash. I keep being outbid on ebay too (Grumble grumble moan moan).
Stir up Sunday today. Did you make your pudding? My Grandma (yes, the one with the holly) used to make ours; every year she used this Sunday to begin the Pudding for Christmas the following year. Once made they would stand on a shelf in her garage and be fed every month or so until by the time Christmas Day came around there was no need to add brandy in order to set it alight at the table. Fun times.
Saturday, 24 November 2007
Now we've had two or three word combinations for a while "Nee cuh guh" which is either need chocolate or need a cuddle, depending on whether fingers are pointing at the mouth or arms outstretched. We've had two words and a sign combined for a while now too - signing "where?" and saying "Ba ba gone" - "where has the baby gone?". We've had long strings of babble into the telephone when it's switched off (and, entertainingly, mad panic when it rings or when someone is on the other end and trying to talk to her). But a whole four word sentence and all spoken clearly enough that anyone would understand it, that's pretty much a first today. Big celebrations all round.
Oh the sentence?
You want to know what she said?
"Mummy did a POOO!".
I'm so proud.
Friday, 23 November 2007
I am not gone, not vanished from this earth
My body went; this spirit lingers on.
All the things that gave my spirit birth
Still live, and I in them, and too, in you.
A smile remembered, half an old embrace
The life that shines upon your lovely face
The trip we took to some forgotten place
I am not gone, I live again in you.
Remember me, for then I live in you.
Thursday, 22 November 2007
First I unload the girls; they are met by trained nursing staff who know them well, and who have found new and exciting things for them to do.
Next I unload the piles of equipment and supplies; this is all checked off by the staff and filed away in bedrooms and drugs cupboards.
And then I unload all my worries and concerns, all the new medical bits and pieces and changes in the girls' conditions, all the minutiae of daily life; I open my mouth and it all tumbles out, someone takes notes and somehow it all transforms itself from a jumble of worries into a workable careplan.
And then I relax. In just ten weeks, just seventy nights, it will be someone else's turn to take the night shift, someone else responsible for mixing medicines and venting tubes and entertaining the toddler.
It isn't that I don't enjoy my girls; it isn't even that I don't enjoy caring for them. Believe me, having them here and caring for them is a LOT better than the alternative. And the girls' needs are a part of them; I wouldn't choose to change that. But three whole nights in a row where I can sink into a deep sleep and not keep one ear out for alarms and apnoeas; that's something worth waiting for.
Bring it on.
Wednesday, 21 November 2007
Tuesday, 20 November 2007
That was the exciting post. It also brought me (if you're interested) bills, a time-sheet letting me know which carers are visiting and when next week, and three identical letters. One to me, one to the mother of Mog, and one addressed to Goldy. Inside, an unmissable invitation to the next Big Thing, the selling point being if you Miss This you must be dead. Well yes, she is, and that's exactly why she'll be missing it. Thank you so much for pointing that out. I realise it's not the fault of the advertisers but I'm having a hard time not blaming them anyway. Oh, and the bills? One of them is a demand for repayment for money which was overpayed to me because Goldy doesn't live here any more. That company didn't seem to care much that she was dead either.
In other news, Little Fish had an appointment with the paed this morning. Who took one look at her and decided she is fat and that we need dietetic advice. He told me off for not having sorted out 'flu vaccines yet, tutted over the delay in getting her gastrostomy placed (but didn't blame me for the idiocies of beaurocracy which have dealyed it, and expressed concern over the neurosurgeon's decision not to operate. I left the office feeling a complete failure. However, this means no more chocolate for Little Fish - or at least no more than one chocolate button per meal. I am therefore going to have to sacrifice myself and consume all the chocolate remaining in the house in order to prevent it from reaching her. It's a tough job, but someone's got to do it.
Mog also needs to meet the dietician urgently. Which is a problem, since we don't have one. It's going to be interesting now. Two tube fed children. One on an extremely specialist formula who needs to eat as much as she can orally (think two teaspoons per meal) as she is losing weight and has none to spare. One on a full mixed diet with water only through the tube who needs to limit her oral intake dramatically if she isn't going to explode, have heart problems, and lose the ability to wheel herself around. And yours truly, who isn't on the slimmer end of the spectrum. So now I somehow need to create meals which are healthy for me (really must stop buying crisps again), filling and satisfying the nutritional requirements of a toddler but low calorie, whilst at the same time somehow cramming as much energy as possible into two teaspoons of the same food for Mog. Fun times.
Phonecalls today. Far too many about Goldy; I have spent the morning sorting out her order of service. It's beginning to get real again at the moment; not so much the fact that she has died since that bit's a little hard to overlook, but the fact that we have to put ourselves through this polished performance of a funeral, this service which ordinarily would happen just days after her death, but which has been delayed for months; that we have had far too much time to plan and prepare for this, and that there is a reason why these things usually happen sooner rather than later.
As a spot of light relief, a phonecall about about Little Fish, informing me that there is another delay in her adoption procedure.
And as I type this, a message from my babysitter cancelling due to ill-health!
At least I have a nice shiny new book to read and a moral obligation to save Little Fish from all that chocolate. I think there are more crisps at the back of the pantry too.
Monday, 19 November 2007
Below you will discover the reasons why I now find this a disheartening task.
Roast lamb, with roast potatoes and parsnips, carrots and leeks, meaty gravy, mint sauce and redcurrant jelly.
Cauliflour cheese with brussels sprouts and bacon.
Vegetable soup with crusty french bread.
Everything looks the same when blended. After ten months of pureeing everything I cook I have discovered that the only things which alter the appearance of pureed food are spinach (mmm green slime), tomato puree (red slime, a good massacre effect can be achieved with minimum effort and just a little over enthusiasm with the spoon), and broccoli (pretty little green flecks, mmm who sneezed?).
Following on from our Ethical Apples, I decided to re-explore the farmer's market. This is a monthly event here and is theoretically limited to farmers who live within a forty mile radius of the town. As it turns out, we have a lovely pig farm selling wonderful garlic sausages (I wonder where the garlic came from?), a very nice sheep farm (mmm lamb leg steaks, now I know I bought them but I haven't unpacked them yet, can I really have put them upside down in my handbag and left them there?), a beef farm, a trout farm and a goat farm. Strange; I thought we had a fair few vegetable farms round here too, but apart from one stall selling apples (did think of offering to sell them mine but resisted the urge) all I found was one small stall selling extremely expensive butternut squash and potatoes. Since we travelled on the bus, for added Greenie Points this is perhaps not a bad thing; as it was I completely forgot to buy the other things we'd gone into town to get.
What's greener? Two trips on a public bus, one to the farmer's market and then one the following day to do everything else, or one trip in our own van? What's greener again; local non-organic produce or organic fruit and veg from halfway across the country? And why does our local dairy deliver milk from local cows but butter and cheese from Ireland?
An interesting site I found looking at your own ecological footprint. The results might suprise you.
Have a nice day,
Saturday, 17 November 2007
Today I picked more apples from my tree. It's a tiny tree but still loaded with apples, some of them small and hard and green, others golden and yellow, most of them coated in some kind of scabby thing and about half of them with little beasties in the core. I like to think of it as low-maintenance organic gardening; leave it alone and see what happens. Nature's harvest has been especially good this year - does this mean we're in for a really cold winter?
Having already filled the freezer with pints of applesauce, and having enough jam to satisfy the hungriest hordes, I decided to be bold and branch out into apple butter. I couldn't make it zero food miles as I don't actually grow sugar, but homegrown pesticide free apples with recycled jars has to count for something doesn't it? And I hope extra brownie points for the fair-trade sugar. Hmm should that be greenie points instead?
So, an afternoon of chopping and stewing and sieving and filling the house with gorgeous wintery smells. There's just something heavenly about the scent of stewing apple, especially with a hint of cinnamon. Interesting (to me at least) side note; in the years BC (before children) I used to burn a lot of essential oils and my very favourite ever was tangerine and cinnamon. Once Mog moved in I had to stop, as the slightest hint of an aroma makes her wheeze and gasp. She doesn't however have this problem with "real" scents; if I cook up a bowl of mulled fruit punch which smells pretty similar to me she just loves the smell and agitates to be as close to the cooker as she can get. I thought essential oils were by their nature well, natural. And the strength of the aroma is the same to my nose. So I wonder what the difference is to her? Meanwhile I am forced to cook if I wish to fill the house with yummy smells. Good for Mog's breathing, bad for my waistline. Oh well. Another sacrifice I have to make, one of those motherhood things people don't always appreciate. I realise I could simply leave the house smelling bad, but with incontinent children, a partly resident cat and some interesting outside plumbing bad can be really very very bad at times.
But I digress. Sieving large quantities of apples is always interesting. I distinctly remember my mother straining fruit through butter muslin by tying the muslin to an upturned kitchen stool and setting a bowl to catch it. Great, except as it turns out my stools are rather narrower, and I should possibly have thought more carefully about how turning the bowl on its side to get into position when empty might possibly have repercussions when full. Let's just say that today I had opportunity to be thankful for my lovely lino flooring.
Abandoning the muslin I went for the straining through a sieve option instead. Little Fish decided to help at this point, so she spent the afternoon sitting on the floor stirring apple pulp and transferring it from one pot to another, from her socks to her head, from her head into a bowl, from the bowl back onto the floor and from the floor attempting to put it back into my sieve. Thanks kid, but that bit's all yours now.
I've not made apple butter before, not heard of it even until Trina started extolling its virtues. So I am not entirely sure what consistency it is supposed to be. Oddly, the apple butter now in jars is mixed - in some jars it has set as solid as rapeseed honey, and in others it is closer to tomato ketchup. I could understand this if it got steadily more solid as it cooled, or if it continued to cook in the preserving pan so later jars were more solid than early ones, but this doesn't appear to be the case, it seems purely random. Any Apple Butter experts (or scientists) care to tell me why this happened? Or how it's supposed to look? It's a deeply rich brown colour and tastes wonderful. Mum and I have plans to use it for jam tarts, with buttercream in cakes, on pancakes as well as on toast. I suspect it might just work quite well to replace the lemon curd in my pumpkin pie too.
Not zero miles with all the sugar, but I did walk to the shops to buy the sugar, does that count? Actually Little Fish and I walked over to our local farm shop to pick up some sprouts yesterday. It's only a 15 minute walk-and-wheel away, and is right opposite a large housing estate. Once opposite the entrance I made the always pleasing discovery that there was no way we could cross the road. Not that traffic made it impossible, but there were no dropped kerbs and the difference in height between pavement and road was too great for Little Fish's power chair. So here's another dilemma for you - if I want to shop locally for fresh zero miles food, I am going to have to take my car out and drive half a mile to the shop. Not because it's too far to walk, but because there is no disabled pedestrian (wheelian?) access. So is it better to walk to the local Budgen's and buy food that has travelled further, or get the car out and drive a ridiculously short distance because we can't walk to the farm? Or is it better to get the food delivered? We had a fruit and veg box delivered weekly at one point, which did mean no driving for us at least, and did mean eating lots of fruit and veg to get through the contents of the box before the next one arrived, but the box itself contained fruit and veg which had travelled from Kenya and other places. The bananas are always riper in someone else's continent.
I suppose, realistically, the absolute best way of solving this would be to grow everything we need. But that isn't going to happen. I like my little apple tree a lot; I do nothing at all for it and every year it gives me more apples than I know what to do with. I've tried growing other things and I am not cut out to tend anything which doesn't remind me of its existence with the odd plaintive mew (or "MuMMEEEEEE" bellowed acroos the room). We had three carrots one year. And six strawberries two years in a row. Our rather fine crop of mint was chopped down by the builders who mistook it for nettles. I'm not certain what I'd do with more than one bumper crop in a year anyway - there's only so much food storage space here. So I'll need to carry on buying food - but which is the best way to do it? What do you do?
Friday, 16 November 2007
My own internal jury is still out on Children in Need. It's a hung jury; half the jurors are conscious of how much help and support we get from places which themselves rely on Children In Need and other fundraisers. The other half hates the fact that my girls become objects of pity and in need of sympathy and a handout, rather than unique individuals.
CiN isn't just about disabled children, but too often the perception seems to be "let's help the poor unfortunates". Lots of feel-good clips about children having magic experiences for the first time ever, parents getting a break from the unbearable burden of caring for their tragically disabled child. Let's guilt the world into emptying their pockets for us. Have a nice pity parade, in between celebrities doing silly things on stage.
Easy to get worked up about being patronised. But then go back a step or two. My own Mog went into school, a special school, full of children with varying degrees of disabilities, and spent the day in fancy dress, raising money for Children in Need. Other children at the school baked biscuits and cakes and sold them. Teachers did some silly things. Children brought in pocket money and parent money, and had good fun whilst at the same time learning about the joy of giving. And whilst I'd have been quite happy this evening to sit and read and listen to the radio, Mog got really caught up in some of the frenzied activities on the television and stayed up later than usual watching them with a big grin on her face. She didn't find the concept patronising - why should I?
Perhaps government should provide all this. Certainly I do believe that where our children have needs, those needs should be met. It is shameful that Mog can be supplied with a superwhizzy Spectra Blitz before her third birthday whilst in a neighbouring county no child under five will be supplied with a power chair, and in a different county again no child under three will be provided with any wheelchair whatsoever. It is shameful that there are families struggling on for years without any respite provision at all because it is not deemed to be an adequate priority for funding, whilst other families living in different areas receive one weekend a month or a few hours a week as a matter of course. It is shameful that children living in one county will be offered different sets of surgical procedures to correct or manage various complications of disability than children living in a different hospital. There should be money available to meet all these needs. There should be adequate funding for all children's services, not simply those relating to disability - I mention these ones only because that's what we know about, living here.
But government is not going to fund these. Disability issues and disadvantaged children generally are not vote winners; recent surveys suggest that the vast majority of children under the age of 18 do not in fact vote at all. Ending CiN and other large fundraisers will not shame government into filling the funding gap, it will simply leave those people who rely on that funding with yet more unmet needs.
Do the ends justify the means? Does it matter if people see my girls as poor unfortunates if that's what it takes to get the help my girls need? They don't mind at all at the moment, do things change if and when they do ever take offense themselves? Are there better ways of raising money? It seems to me that there may be, that it is possible to raise funds without parading the recipients. Would CiN be any less effective if we had the fundraising events, the silly celebrities and the caring public, without the video clips of the poor little unfortunates? Or would that in itself open CiN to accusations of ignoring the very people it sets out to help? Is a charity ball more acceptable than a sponsored soak in a bath of custard?
Answers on a postcard please
Thursday, 15 November 2007
It is now Thursday.
Is my house
a) nearly finished with just one day's worth of work before we can begin to adjust to a world where we are not constantly waiting for Bob?
b) halfway done with a project that will take a couple more days than originally planned but still well on track to be finished before the end of the month?
c) covered in builder's tools which were abandoned on Tuesday when Bob's mate became suddenly unwell and had to be rushed away?
In the two half days where Bob was here, did he
a) achieve a large part of what he set out to do?
b) make a good start on what he set out to do?
c) get side tracked, mow my lawn, trim my hedges and pick a big pile of apples for me?
Will Bob be back
a) tomorrow, without fail?
c) after the two week holiday he and his partner have booked which begins on Monday?
Still, it wasn't all loss. I now have 6lbs fruit jam, 15lbs frozen applesauce, and a good bucket of apples to turn into apple butter. I had a lovely peaceful two days with my good friend, without the distraction of bangs and clatters from Bob and Bob's mate. My garden is mostly tidied ready for winter.
But, but, I want the work finished!
Wednesday, 14 November 2007
Five years ago today, Thursday morning, I had a phone call "How fast can you get to the hospital?" This being my life, I happened to have one or two minor little appointments on the Thursday - social workers travelling down from the north of the country to discuss a potential adoption (had to track them down on the motorway and send them home again), carpet fitters coming to fit carpetting to our staircase (my own social worker came and house-sat for them), organise someone to meet Goldy from school, etcetera and so on. I did particularly enjoy one phone call -
"Mum, I'm having a baby."
"That's nice dear, when?"
"In about half an hour, got to go now!"
Several hours after arriving at the hospital a small bundle of bewilderment was handed over to me. Thick black baby hair, newborn baby clothes despite being several months old, able to suck, vomit, and cry. And the most beautiful eyes. Blind eyes at that point, which gazed out into space somehow expressing the utter confusion and chaos of her life. She did not know who she was, where she was, what she was doing, she needed to be held all the time, and she only stopped crying long enough to be sick. There were severe medical problems, severe disabilities, uncertain futures, and so many people involved in her life, loving her so much and completely worn down by the effort of loving and caring for this little scrap of humanity whilst still adjusting to the complexity of her problems.
Today that little tiny baby is the most beautiful, slender, elegant little girl. Long and sleek, secure in the knowledge that she has two families who love her and are committed to her. A wonderful sense of humour, eyes which speak volumes and a smile which splits her face in two, a laugh which melts the hardest of hearts. True, she is very severely disabled and her medical issues mount as she gets older. But she has changed my life forever.
I am so grateful to her birth parents for allowing me to raise their child. I am so desperately sorry for all the good things about our child which they miss out on. And every single minute of the day I am thankful that I have Mog in my life, that every morning I get to make her smile, and every evening I get to tuck my little girl up into bed and kiss her goodnight.
Happy Anniversary, Mog.
Monday, 12 November 2007
In June 2006 we went away for a week. The builder had returned the week before, and planned to demolish the old sunroom (an interesting creation, a blend of breeze blocks, fence panels, greenhouse windows and corrugated plastic, with a handy six inch gap between wall and roof and a grapevine growing in a cement tub in the middle), and replace it with a more useful addition to the house, carefully designed to fit in with the original extension. Side note - can you have an original extension?
We returned from our week away finding, not the promised foundation, but a tangled mess of concrete and glass. The people who had built the sunroom had not, as I believe is standard practice, dug a level base, filled it with concrete, levelled it, and then started to build, but had instead loosely tramped down an old flower bed, poured concrete over it until it looked roughly ok (this would account for the large puddle which gathered right in the centre of the room), meaning that the concrete was 6 inches deep in some places and 3 foot deep in others. This, in turn, had necessitated extra work, and the builders' mates had taken umbrage, leaving the builder (we'll call him Bob since Little Fish thinks that's his name) to work on alone. Over the next six months (yes, yes, including the next set of summer holidays), he proceeded to fill our garden with rubble and the house with noise.
Highlights include the day I went to collect a baby I would be fostering for the next two weeks, a baby with a variety of different medical conditions, and returned to discover that Bob had decided I needed new cupboards in the kitchen, and had spent the afternoon emptying my existing cupboards and knocking large holes in the walls. Not a part of the original plan.
The day I went out for a walk and came back to discover Bob ripping up a floor he had deemed offensive (in fairness, it did turn out to be deeply mouldy underneath, but again, this was not part of his original plan).
The day Bob decided to carry concrete plinths (girders? joists? He did tell me but I'm afraid I
The day the roofing contractors came, began to lay the new roof and discovered major but previously hidden damage to the existing extension's roof. Our handy previous owner had decided to fasten the waterproof layer with giant nails, creating a nice sieve effect.
The day after the contractors had finished laying the new roof when my upstairs neighbour decided to climb into her house via my extension roof, pulling off the guttering and causing major damage to the newly finished but not yet settled roof.
The complete side track into my garage, where wood and metal bits were purchased and stored in order to build storage there (a great idea, again, not part of the original plan), storage which twelve months on is still in the extreme flat pack version whilst the bits and pieces intended to be stored upon it stack up in ever-more-messy heaps in the rest of the garage.
The announcement, three weeks before Christmas, that he had about one week's work to do.
The subsequent disappearance until May 2007, the reappearance, 4 days of planned work and an additional three weeks of extra work not a part of the original plan but now somehow necessary. The departure with just 3 days' worth of original work left, and another couple of days to tidy up the extra work undertaken. Breezy assurances that I could book a painter for September, 2 years since the original work and 13 months since this piece of work began.
The disappearance of all tools including the cement mixer in June.
Since then I have had periodic messages left on my phone thanking me for my patience and promising to return "next week", "tomorrow" or "this afternoon". Followed by at least a month's silence.
Intertwine this, if you will, with the arrival and departure of one baby girl in September 2006, the baby boy we had for six weeks over Christmas, the fortnight of introductions to Little Fish in January, the stress of finding a new place for Goldy to live, adjusting to life with her living elsewhere and then life without her. Add to this the last two months with Mog's surgery and subsequent illnesses. It has been a busy year.
Goldy's funeral is fairly soon now. Before that, I have to arrange a hospice stay for Mog, and juggle our standard constant set of hospital appointments. This week the diary tells me we have parent teacher
Additionally, I have the arrival of a very dear friend - this is in no way an additional stress, it is in fact my sanity in a sea of busyness, we will take time out from all this to sit and be still, remember Goldy without worrying about upsetting other people, and plan our holiday for next year. Intense and relaxing, all at once.
I am in trouble for refusing to countenance an additional meeting this week, a standard and routine meeting which has had to be rearranged. However I decided that we had enough happening this week already and have asked for it to be postponed or held without me. On Friday, I had a message from school to say that since I have spent so much time in school already this term, and since the girls have spent comparatively little time there, it will not be necessary for me to attend the PTCs this afternoon. Hurrah. Then, the paed appointment was cancelled, and the neurology appointment postponed. Even better. This leaves me with a week to relax and enjoy spending time with my friend, a very necessary rest before jumping back into real life again next week.
It is therefore with a sense of inevitability that I returned from the post office this morning to discover the builder's van parked outside. And with further resignation that I learnt he intends to finish up his final bits and pieces once and for all, and has, of course, found more things to do which will keep him here even longer.
Who needs rest anyway? Alright, I do, and I want to be here:
Saturday, 10 November 2007
Friday, 9 November 2007
What do we do about Death?
What do we do about death?
We don’t -
The monster is hidden away.
It's not in the zoo for the public to view
The look on its face would empty the place.
We don’t want to die, the people would cry
Death is the curse in the back of the hearse
We don’t need to see it today.
What do we do about death?
We don’t -
We shovel it under the ground
Under the sod and hope there’s a God
Whose principles bend at the bitterest end
Or we burn it away, and whispering say
Death is the scream at the end of the dream
There isn’t a lonelier sound.
What do we do about death?
We don’t -
We don’t even give it a name
He’s gone before to a distant shore
She’s passed away, we gloomily say,
He’s fallen asleep in a terminal heap.
Death is the spear that is poisoned with fear
It pierces the heart of the game.
What do we do about death?
We don’t -
But once in the angry sun
A winner was slain at the center of pain
When a battle was fought at the final resort
But because of the cross it was fought without loss
And death is knife that will free us for life
Because of what Jesus has done.
Adrian Plass, in An Alien at St Wilfred's, 1992.
I've been trying (again) to put something down in writing. And each time I try, I end up with a beautiful thumpetty thump with oodles of internal rhyme; it took me a while to realise I was just trying to recreate this. Why recreate what's already been said so well? So, thank you Adrian, for saying what I wanted to try to say before I ever needed to say it. And thank you too for permission to post it here.
In other news, I nipped into Budgen's this afternoon for some dishwasher liquid. And came out with leeks, cabbage, Brussels sprouts and cauliflour. Impulse buying I understand, but cabbage? Retail therapy, I'm all yours - but splurging on Brussels sprouts?
Excuse me, I have some cooking to do.
Thursday, 8 November 2007
Picture the scene. Mog lying on the settee; she seems to be modeling herself on a Jane Austen heroine and spends most of the day "resting on the sopha". Little Fish balancing herself on a stool
Little Fish (LF) "Pa Pa"
Me - "no, that's Kathy"
LF "Pa Pa"
Me "KA-thy, Ka Ka"
LF "Ka Ka?" pointing to her chocolate
Me "That's your Chocolate, Cha Cha, Chocolate"
LF, firmly, "Ka, Ka". Picks up chocolate, puts it in her mouth. Points to Kathy; "Pa Pa".
Me "I am going to make Coffee, Co co Coffee, for Ka Ka Kathy"
LF "PAH, (translation SPLASH) Pa Pa".
I think I'll go and talk to the platys; might get more sense there.
It bothers me; I can understand what she's saying, but who else will? She does supplement her speech with some signs, but again, I understand her signs but the wider world? She starts at mainstream preschool after Christmas and how will she make her needs known? Or will it be a good thing, will it show her that the world at large does not understand what she's saying and she needs to make a greater effort to make herself understood? I know that she has limited speech sounds, but why can't she use the sounds she does have more appropriately?
Meanwhile in other news, today we were back at hospital. Just for a change. Mog's wheelchair doesn't fit now that her hips are full of metalwork, so the wheelchair service took a cast of her bottom for the new one. We pick it up in a fortnight. I asked about Little Fish's power chair, and was told that yes, it was now in, but no, we couldn't pick it up until she had her own clinic appointment and no, they couldn't offer us a clinic date yet. Grump grump grumble mutter mutter, exit one physiotherapist who returned ten minutes later to inform us that the power chair clinic had had a cancellation and that we could in fact have the chair all fitted up and kitted out and take it home with us today. Sometimes grumbling works!
So now, age 2. Little Fish has a manual wheelchair, an electric wheelchair, a big wheeled standing frame, a comfy cosy slobbing out chair and a special car seat. And people wonder why I'm not pushing for her to get a hand cycle...
Think I'll go and clean out that fishtank.
Wednesday, 7 November 2007
Perhaps I also learnt not to bake bread on a day I've called Sabbath.
This has required some serious adjustments to the way we live. Our carers arrive at 7AM, so I need to be up and dressed before this. I need to be awake enough to be sociable and pleasant to them, organised enough that they can find everything they need, tidy enough that they can walk through the house without falling over, and generally willing to accept the fact that my home is someone else's workplace. It needs to be a pleasant place to work, or they may not come back again.
Since Mog had her hip op, we have had carers here three times a day, seven days a week. This means we've had people in our house at the start, middle and end of each and every single day. We've had people here when the girls wake, people here when they go to bed, people here interrupting my midday meal. I have had to ensure the house is
Now that Mog is out of her brace, I can manage without such a high level of care, and we will be moving back to our regular programme of carers, i.e. six mornings and three evenings per week. It's still a lot, especially compared to the help some families desperately need and don't get, but it is the right balance for us. However, as Mog was expected to be in hospital until the end of the week, we cancelled our care and it does not kick in again until tomorrow evening. What this means is that this morning, for the first time in over two months, we had no carer here. For the first time in a very long time, I did not need to set my alarm. Mog woke me at 7 needing pain relief but she was able to go back to sleep after that, Little Fish had a nice long lie in, and I had a wonderfully relaxed morning in my pyjamas catching up on life in the slow lane again.
It is now half past eleven. Mog is dressed and relaxing on our settee, snuggled under a blanket listening to life. Little Fish is pushing Madeleine around in Mog's wheelchair, and we have no appointments, no visitors, no ties to anything at all all day long. I have an instant lunch all ready in the 'fridge and will be ordering takeaway tonight, and in the meantime all three of us can take a breather and enjoy just being ourselves for the day.
Tuesday, 6 November 2007
So, anyway, the physio signed us off this morning, we met a new therapist who is going to make some kind of hand splint for Mog, and with only a three hour wait for pharmacy to deliver painkillers we were off back to the bus. We walked out of the hospital entrance and scrunch, the bottle of codeine fell to the floor and shattered. Back into the hospital, back to the children's ward and wait for a replacement. Because life is never that simple.
Eventually loaded up with replacement pain relief we did make it home again. Mog is to wear her brace overnight and be free during the day. Pre-op she was either plank or plankton; stiff as a board or no muscle tone at all. Now she seems to be permanently plankton; lifting her is like trying to pick up a bowl of cooked and buttered spaghetti without the bowl and without dropping any of it. She flows through my arms and over my shoulders and ends up folded in half on the floor - not the best position considering she isn't supposed to move her hips too much for the next few months.
Worryingly, she hasn't changed shape very much. Her windswept leg seems to be still windswept, despite major bony and muscular surgery to correct this. I can't see the effects of the surgery lasting once the painkillers and anti-spasmodics have worn off. But we shall see. In the meantime both girls are back in their own bedrooms, meaning that Mog has a bed she can't trap her head in (always useful), and Little Fish has a bed which (hopefully) won't cause her Nippy to alarm all night.
My post had an exciting letter from the Court in it; finally we have a date for Little Fish's adoption. Except that we don't - on further reading this date is for a directions hearing. What does this mean I hear you ask? This means that the judge has looked at my application to adopt Little Fish, and has decided that there needs to be a meeting to discuss decisions which need to be taken before a decision can be made about Little Fish's adoption. That's right, it has been decided to have a meeting to decide what needs to be decided about the decision before the decision can be made. Confused yet? The papers went to court in September, the Judge saw them in October, the next meeting is in November so I'm guessing Adoption Day won't now be until December or possibly the New Year. Disappointing in one way as I would like this to be finalised; we want to get Little Fish a passport so we can go to France before Christmas but looks as though this won't now be happening. And good in another way -I'd like to be able to hold Goldy's funeral before we have Little Fish's adoption; it feels wrong to be celebrating before then and would be nice to have a positive to look forwards to after the funeral has happened.
Sunday, 4 November 2007
Tammy from Hormonally Unbalanced, that's you! There's something for your first post! Drop me an email with your address and I will get the brooch in the post to you.
Sorry you couldn't all be winners but thank you all for your entries.
I have been contacted myself by Heather from HippMama who informs me I have won a copy of her book, thank you Heather and I look forwards to reading it.
Saturday, 3 November 2007
Poor old Guy.
And poor old us. We've had fireworks constantly since about half past four this afternoon and every bang sends Mog into another seizure. Given that the seizures rock her body and pull at the new metalwork in her hips, this sends her into spasm, and we're back somewhere close to where we were just one week post op.
Little Fish seems to be sleeping through it all - I'm guessing the noise from her Nippy masks most of it - perhaps I should transport her, Nippy and all, to the foot of Mog's bed?
Meanwhile I'll turn up the music for her, Norah Jones seems to solve a fair few of her problems.
Friday, 2 November 2007
Thursday, 1 November 2007
First, cook your pumpkin. I find the easiest way to do this is to cut it into big wedges, scoop out the seeds and pith, and boil the wedges until they are soft. Save the seeds, we'll use them later. Then allow them to cool, and simply rub the skin off. You can peel it first if you like, but it makes my wrists ache. Once you've rubbed off the skin, mash the pumpkin until it looks like this:
Pretty, isn't it? You can leave it to finish cooling now.
You'll need a 9 inch pastry case. I cheated and used the ready rolled stuff (don't disown me, Mum). Bake this blind for 5 minutes at 220c, 425F.
Now take 4 oz sugar, 1/2 tsp ground ginger, 1tsp cinnamon, 1/2 tsp ground cloves, 1/2 tsp ground nutmeg and a shake of mixed spice. Stir them together
Add 1lb of the pumpkin, 1/2tsp vanilla essence, 2 eggs and 2 tablespoons spoons lemon curd. Mix well, then add 8floz milk. Mix to a soupy consistency
Remind you of anything? Don't worry, a completely different flavour.
Pour the pie filling into the pastry case and bakefor 20 minutes at 220c/425f. Then lower oven temp to 140c/275f and bake for a further 40 minutes until it looks like this and is set in the middle
Allow to cool before eating - this pie definitely tastes better warm or chilled rather than piping hot. Delicious by itself, with cream or ice cream.
Remember those pumpkin seeds? Wash the stringy bits off them and spread them out on a baking tray. Drizzle them with olive oil and sprinkle freshly ground salt and pepper over the top. Then roast them until they are brown and toasty
Allow them to cool and put them into a little bowl. Like this
Munch at will.
NB if you decide to serve these as an appetizer, and pumpkin pie as a pudding, it's probably best not to use up the rest of that pumpkin puree in a soup. Unless you really, really like pumpkin, that is. Any one got any recipes for me to finish off the pumpkin?