Sunday, 30 August 2009

Two years on.

Two years ago

One year ago, Friend and I, a pizza eaten in memory of the great Pizza Eater, talking through the events of that week; a quiet celebrate and mourn.

And this year? A field of Guides, friends who knew Goldie, but no real remembrance, no acknowledgement of the day. My fault I'm sure, if blame there is; I don't expect others to keep track of my life. But just for now, I seem to be washed up on a small stony island whilst swift waters of life run past on either side. Camp jokes about burns and coffins and accidents hugely unfunny, but any negative reaction inappropriate too.

A goodIsh day, setting aside the minor issue of this anniversary. No special significance except perhaps to me. Is there an offivially designated mourning period? Am I supposed to be over this by now?

Tia

Friday, 28 August 2009

Hay box cooking

Take one large dixie and fill it with browned chicken and onions,
chopped carrots, stock and soup and seasonings. Make sure it is full
to the brim and bring it to a rollicking boil on a wood fire.

Line a tea chest with newspaper, bubblewrap, anything else old and
insulatory. Add a layer of hay. Put the dixie into the chest and pack
around with more hay, newspaper, pillows, whatever you have to fill
the gaps. When absolutely full, fond something to use as a lid and
weight it down.

Spend several hours shouting at Guides who try to use the logs to burn
at lunchtime. If not doing this with Guides, this step may be safely
omitted.

Leave to mature for 4-8 hours.

Unpack tea chest with oohs and aahs from the Guides, and bring out a
dixie full of piping hot tender chicken stew.

Debate repeating process overnight for porridge but run out of steam.

Tia

Thursday, 27 August 2009

That's better

Mog's wild ride.

Going against years of tradition, our big day out from camp was not
to somewhere outdoorsy, pretty, or historical. Instead we headed to
Paultons Park, swapping the thrills of wooding for rollercoasters and
highly packaged Fun.

Bacon rolls for breakfast, sandwiches for lunch and now I'm sitting in
a carpark as another leader picks up fish and chips for 28. Minimal
cooking today and fat-soaked newspaper to light the fire with tomorrow
morning. Suits me!

Oh and the pirate ship? Mog's highlight. Sleep through most of the day
but giggle through the ride. Repeat as often as you can find people to
ride with you.

Tia

Tuesday, 25 August 2009

Go go Grandad!

More wholesome traditional Guiding fun. Mock the men Pioneering. Dad likes pioneering. Dad likes wood, full stop. Give the man wood, an axe and a saw and a bunch of Guides or Scouts to train, and he's a very happy man. Give him a bunch of bigger wood, some rope, and a group of Guides or Scouts, and he's possibly even happier. Regulations don't allow him to create the death slides he used to produce when we were deemed too young to try them out, but monkey bridges and complex ladders, rafts and rope courses still get the next generation going.

Little Fish watched the Guides in silence, saving her admiration for the last person to cross. "Wow, Grandad, well done that is very very good. You a clever man, Grandad." The girls agreed.

Tia

Monday, 24 August 2009

Gadgetry



Something old - an evening meal cooked on a wood fire, a blackened kettle more soot than metal. A dustbin boiler, element buried in the fire and steamingly hot water ready for washing up once the food has been cooked.

Something borrowed - the dining shelter. Traditionally made, wooden ridge pole and big wooden pegs, an ageless design.

And something blue - 20 Girl Guides, none of whom feature in this photo as they've gone off to use the last of the daylight exploring the site with the rest of the leaders, leaving yours truly to mind the fire and two small sleeping girls. And to blog.

Woodsmoke and grass, soon to be supplemented with the gentle hiss of gas lanterns.
Peace
Tia

Something new(ish) - a washing up rack with draining board, no hours spent with knotting and lashing, just a couple of minutes and some rubber bands.

cats and camping

funny pictures of cats with captions
A spot of cat herding today; always entertaining (for the watchers). My parents' remaining cat, Sadie, is now old and ill, blind from a series of strokes and has lost all her fire. Whereas before this picture would've been a good descriptor for her, she is now content to stroll around the house, using her whiskers to find doorways and furniture, and curling up on a sheepskin when it all gets too much.

Goway, meanwhile, is bounding around the house like a cat who knows he is bound for the cattery. They're both off there for a stay whilst we go to Guide Camp. Goway with his spray and allergy meds, Sadie with her blood pressure pills, her thyroid tablets, and her need for weekly reviews. Whatever happened to the idea that cats were easy pets?

Meanwhile the bus is packed, the essential admin is done, and just as soon as I can locate my uniform (ran out of energy and the will to live last night before I'd found it) I shall be getting dressed, dressing the girls, and heading off to the New Forest, for a week at Foxlease.

Saturday, 22 August 2009

Going Local part two

Stuffed marrow. Even better the second day; Mog fighting for a bite and Little Fish taking a mouthful, then gasping for a sip of water to take the taste away, and then turning round to smile at me "deeelishus Mummy, thank you for cooking that for me."
We made her day and did some cooking.
A blackberry and cocoa pudding
Which looked rather gorgeous to start off withAnd tasted even better than it lookedMarrow stuffed with chili beans and sweetcorn, and a pudding piled high with blackberries. Little Fish has finally achieved her five a day, with only a little sneaky fruit juice through her tube to boost it. She's also managed quite nicely on the dairy front, having raided the 'fridge when I was with Mog, leaving the 'fridge door ajar, and a trail of empty yoghurt pots dripping and festering across the hall and sitting room floors. Nice.

I'm still trying to work out her thought processes. Tonight I gave her her suppository (yes, we've moved on from the food, this is now a poo post, feel free to stop reading). She looked very thoughtful as I inserted it, gently posting it up as far as possible. "You reading my bottom, Mummy?"

It took me a moment to work out what she'd asked, and I checked with her. She confirmed the question. "That's a weird thing to ask" I replied intelligently.

She nodded solemnly. "It's a weird thing to do, Mumma" she confirmed. Some days my life borders on the surreal.

Tia

Friday, 21 August 2009

Going Local

Blackberries and apples picked from a friend's garden in the morning and baked for tea that evening. A stuffed marrow; also from a friend's garden, and we're good to go.

I could make that sound really fresh and wholesome and down-t0-earth wonderful couldn't I? Did I convince you? It's not quite true... We did pick the blackberries and apples, and we did have a rather tasty stuffed marrow, but pudding was a very labour intensive dish; I had to open our pantry cupboard, break off a large piece of chocolate, and divide it up between us. The fruit looks beautiful; is beautiful, and will be cooked in the morning. I'm thinking of competing with Trina's Blueberry Cobbler.

Tia

Thursday, 20 August 2009

Anywhere but here

Let's go backAnyone with me?
Mog loves riding horses. OK this one was so small it barely counted, but still, I can't help wondering. Specialist backriding; someone to sit behind her, someone to walk either side of her, someone to lead the horse, someone to load her onto the horse in the first place and be ready to catch her at the other end. Too labour intensive to be practical; she had a few sessions in the summer holidays for a couple of years and then it was someone else's turn.

Take a campsite providing donkey rides; she sits astride and balances with a lot of help from her Hensinger and from yours truly. I'm sure we didn't get the full workout the backriding gives her. But she had fun, she got a good stretch and she was working hard to stay upright.

Free physio, another reason to camp. For Little Fish, I think the highlight was sitting on my shoulders eating ham. I'm not quite as convinced that this is a good reason to camp.
Tia

Wednesday, 19 August 2009

Flashbacks

Out today, and a child (not mine) was burnt. Scalded with hot coffee. Instinct takes over; clear a path to the nearest cold water and toss her in it. She'll be fine - shock more than damage I think. New (dry) clothes and an icecream did much to repair the damage. Pink knees which will no doubt be a little tender, but looking no worse than sunburn. A complete accident.

She'll be fine.

Me? I'm back at the end of the phone, hearing that there's been an accident. I'm back in A&E, being told that I can't see Goldie as I'm not next of kin. I'm watching a doctor assess her, looking in disbelief at the sheer vastness of her injuries. I'm with her in an ambulance, driving miles over bumpy roads to the nearest burns unit.

I'm trying to split myself in two, needing to be here at home and simultaneously 120 miles away. I'm trying to contact family on holiday overseas, I'm trying to give staff lessons in how a very profoundly disabled individual might demonstrate pain.

I'm watching my daughter inpain more than anyone should have to endure, and without the understanding as to what has happened to her. And I'm standing by her bedside watching her die.

And I'm looking at the damage done by boiling coffee, and comparing it to the damage done by a cooler, but still too hot bath.

I'll spare the details.

But looping, round and round, still images from the week. And I want to fit thermostats to every tap, ban kettles and hot drinks andbaths and open fires and boilers and going outside in sunlight, and ovens, and anything else which might cause anyone to suffer as she did, anything which might put any other parent where I was, watching the damage. And it isn't going to happen; I need my coffee as much as the next woman; I like my baths as much as anyone else, and turning nocturnal isn't terribly practical with small children.

So, deep breaths; move on. Children to feed and entertain and medicate and care for, a house that won't clean itself (I have offered to pay it but it won't listen), distractions everywhere if I can but pull my head out of this loop.

It's there still though in the silent spaces.

Tia

Tuesday, 18 August 2009

Blogging for Sanity

An anniversary whilst we were away; two years since my first blog post. One of my better I think; perhaps I should have left it there. I had lofty dreams of somehow instantly becoming known as an insightful, witty, blogger, someone who would effortlessly churn out endless entertainment which would somehow be seized on and read by millions. No children would be identified; this would be a blog about me, the parent/fostercarer/woman behind the child in the wheelchair; the children themselves would be but bit players in my grand theatre. Ego much?

And then Goldie died, and life wasn't terribly funny for a while. And this blog became my outet. Uncomfortably personal at times perhaps; I've certainly had people worry that this is my own private diary and that I have somehow forgotten to hide it from public view. Not so; I don't reveal everything here, but writing things out and knowing that it will be read by someone or someones definitely helps me to shape my own thoughts. Posts then perhaps become thoughts in progress? No wonder they're often long-winded; I guess I think slowly.

Putting my thoughts down here, sometimes deeper, sometimes marking a memory, sometimes just sharing a moment; it helps to empty my mind before I sleep. I blurt it all out; I edit quite a bit of it away, refine the rest and then what's published is gone, off my mind and onto the page, and I can sleep.

It's been surprisingly useful as an archive; I can click back through the months and see what's changed, what's the same. Not that our whole lives are up here; we definitely have too much life for that, and so much of it is other people's stories. But I think there's some kind of essence here - enough to get a hint of the flavour of our days. I hope so anyway.

I find myself up to my elbows in poo (and no, not metaphoric poo), and as I wipe it away I find myself mentally composing the blog post that will describe it. I don't end up writing even half the many bodily fluid posts I've thought of (aren't you thankful for that?), but the mental process takes my mind off the smell and the heat and the squishiness (and now you're really thankful I don't share more I'm sure).

Sitting in a traffic jam with a screaming child to my left and a suspiciously silent child behind me (who will later turn out to have been scattering powdered multivitamins over the car and her powerchair), I find just the right turn of phrase, and in doing so, forget to get frustrated over the delays and distractions. And then the traffic moves on, and the child stops screaming, and the other inhales the loose powder and chokes so we have to stop anyway, but I'm doing my best to forget about that, and our life moves on and there's another post unpublished.



Sweetness from today; Little Fish doing a medical handover for Mog when we got to the hospital this morning. Bittersweet perhaps; how has she come to know so much about her sister's medical needs, and how has she become so used to hospital that she knows what info to give to the receptionist? And silliness too; the appointment was for Little Fish so her detailed information seriously confused the issue. Celebrations - Little Fish's hip has been declared healed and healthy and she can get back to doing everything she was doing before. And sadness; it looks as though she'll need surgery on her foot, the leg will stay shorter than the other, and although the registrar didn't say what was worrying him, he was very keen to know when our next spinal review was going to be.

Meanwhile on the home front, three loads of laundry all trying to dry out on one clothes horse, one house covered in playdough and breadcrumbs, but a garden which has been transformed in our absence. And a van which needs surgery again itself, Little Fish having crumpled the back door on the left again.

A mixed bag; a mixed blog. Here's to the next two years.
Tia

Monday, 17 August 2009

Too few photos

How to summarise? Not enough photos, too much time spent living to remember to take time out to record it.
FunFrustrationsAnd flaming balloons
And now home, laundry, washing up, unpacking, repacking, a damp tent to be spread out somewhere, bruises and bites to be taken care of, and two girls with a beautifully healthy glow to their slightly sun-caught faces tucked up in bed and already asking about New Year.

Thinking of those who weren't able to be here this year, especially those who missed out because their children were in hospital. And hoping to meet even more of you next year.

Thinking of those who are still camping, and feeling slightly miffed that, yet again, we had to come back early for other commitments. Feeling that it's all gone far too quickly and I didn't get to spend time with half the people I'd planned to see. Friends less than half a field away seemingly on the other side of the world, but others closer than ever.

And there's always next time.
Tia

Sunday, 16 August 2009

Just Another Day

Today, in the nicest possible way, nothing happened.

We woke up at what passes for late for us (7.30). We got dressed in a nice unstressed way, and we had a fairly basic breakfast. We sat and talked to friends, and then suddenly it was lunchtime. We loaded the bus as dull as it would go, and joined (and accidentally led) a convoy to a local pub, where we managed to eat the last of the roast pork. We sat around until we were the last customers in the pub, and then we loaded the bus again, and came home.

Little Fish had a bath and then a paddle in a friend's pool. Mog watched, then had the fastest in-and-out dunk-and-dry in history; ready for her bed before she'd even fully gone into spasm from the shock of the cool water.

We ate, we sat with friends, the girls sat around again for a bit, and then went to bed. I sat and chatted some more then came to bed myself. A nice gentle unhurried nothing special kind of a day.

Home tomorrow, and back to normality and a slew of appointments. Goodbye to friends we won't see again until next summer, hello to running out of time to get everything done before September. But that's for tomorrow. Just for today I'll stick with our nice gentle nothingness.

Tia

Saturday, 15 August 2009

Fun day





Because camping with 45 families just isn't enough, today those near enough to visit for the day, and those staying in hotels and with family, all descended on us for the annual Special Kids fun day.

Organised fun; face painting, drumming, childrens stuff and other things for the adults.

Disorganised fun; picnics with new faces and old familiar friends, the inevitable sudden rain shower followedby the now traditional blazing sun.

Celebrations; a non-verbal child for the last four meets now talking. Another now able to sit in a wheelchair albeit only briefly. At
teen finally having mastered the art of riding a two wheeler bike.

And sadness; those children not with us, parents here without their special child, other children too poorly to attend. And others here, but visibly weaker than the year before.

Everywhere though, love, acceptance of differences, excitement, and pleasure. Children free to be themselves in an environment where the only stares are parents checking out the different models of wheelchair or various positional aids

And now it's late, and the rain is falling gently; enough to be an excuse for bed and blogging here, but not enough to stop those who want to gather round the fire pit from chatting, singing, laughing, drinking, while a crowd of teenagers sit on a hill twirling glo-stix, and smaller children either fight valiantly against the idea of sleep or else curl up with parents or back in tents, gathering energy for the day abead and sleeping through the noise of a community making the most of three dimensional time together.

Tia

Friday, 14 August 2009

An exceptionally good day.

A decent night on ultra comfortable new airbed. No more hippo and chick rolltogether issues, and Mog's nocturnal seizure minor ripples not earthquakes.

A date with friends to go down to the camp cafe for coffee became through laziness a bacon bitty for late breakfast, and the chance to meet in real life people who have been up til now internet friends. A trip to Sainsburys; drudgery when alone, brightened by the company to become an Actual Outing rather than mere routine.

Lunch with more friends, a small squidgable child, not my own, napping on my lap until with jingling bells a couple of donkeys appeared. A donkey ride for Mog, much to her delight and my own; five minutessitting on a donkey and her hips are looser than they have been for months.

Laughter, renewing of old friendships and the growth of new ones. Bittersweet; a new friend's son fizzing with life and enthusiasm and joie de vivre, as loud and as excited and as happy and oblivious as Goldie on a good day. And the meeting in person of a friend I didn't get to meet before the death of their precious daughter.

Life with special kids. Sitting one minute watching five boys playing swingball. Three boys with varying degrees of autism, one with other undiagnosed wonkiness, and one with nothing particularly unusual about him. Some anxious parents worried about how thier own so. Would cope, each child being not especially socially aware. And each child obliviousto the others' quirks, focussing on how best to make a game to play.

In another patch of grass, a volleyball net. One small boy rolling a giant football under the net. Two children playing a modified version of tennis ofer the top of him. A small girl twirling and spinning, oblivious to the game but high on the atmosphere. And two adults playing badminton sideways on over the top of everything else going on.

Husband and wife battling out some tensions in a vicious swingball match. Small clusters of adults sitting chatting. A pack of small children running up and down a slope, some wobblier than others, all uncaring. A batch of teenage girls all hovering together. And a gaggle of children, able and disabled, 4 and 8 and 12 and 16, wrestling together, tumbling over and over, screams of delight reaching the far corners of the site. Teenage boys, teasing but protecting fragile preschool girls. Delicate dainty children nibbling titbits from parents' cakes.

Chaos perhaps, but a happy, accepting, welcoming, anything goes kind of a chaos. Good times.
Tia

Thursday, 13 August 2009

What we did on our summer holidays.

Really not the best of days. No one dead or even injured, so a long
way off being the worst of days too. But definitely one of the more
intensely frustrating.

One inevitably unsettled first night; excited children and loud
friends until long past late, followed by different exciting children
and a leaky lilo far too early. So far, so normal.

A civilised start, a beatifully sunny day, decent coffee and a summery
bowl of fruit. All good. And then a quick run into town to the local
hospital, pick up the missing vigabatrin, swing by the camping shop
for new beds, and then back to camp to enjoy the day.

Hollow laugh.

Local hospital had no doctors on duty, but kindly fixed up an
appointment for us with a localish GP, who very kindly wrote us out a
prescription; only minor issue being my misunderstanding the queueing
system and thus missing my magic number. GP had a pharmacy attached,
even better.

Or it would have been, if the pharmacy had had the drug in stock. They
kindly phoned the other pharmacies in town, and none of them had it
either. They then turned us out with the suggestion that we armed
ourselves with a copy of the Yellow Pages and phoned every pharmacy in
the local area until we found one which had it in stock. Great.

We decided to head back to the site to borrow the owner's directory
(and possibly phone too), making a quick call in at the camping shop
on the way. Happened to notice a large chemist on the same trading
estate, so called in to check. They did another phone around for us,
and found some tablets in nearby Big City. A kindly customer gave us
directions, but refused to tell us how to get to the nearest parking,
insisting that we didn't want to get into the "gyratory system" as
we'd never get out. So instead he sent us to some on street parking,
just 300 yards from the Big City Centre. Well. It would have been 300
yards, had we parked at the bottom and not at the top of what turned
out to be a ridiculously long road.

Anyway, we parked, we checked the meter which promised free parking
for blue badge holders, and we walked through the sweltering city
streets into the shopping centre, where we found the big chemist.

And then they didn't have any of the vigabatrin. And then they did,
but they couldn't give it to us. And then eventually, after another
hour of sIting, phone calls back to the original chemist and the
prescribing gp, and then finally, a good 2 hours after we would have
been back at the campsite if we had just driven all the way home for
it in the first place, we were free to walk the insanely steep path
back to the bus. In retrospect, giving Little Fish a chocolate
icecream to keep her spirits up may have been a mistake. Not only did
it melt more or less immediately, coating her dress (and hands and
face and hair) with thick chocolate goo, it also needed both her
hands, leaving me pushing Mog with one hand whilst using the other to
steer LF's joystick.

I think the parking ticket stuck to the windscreen on our return to
the bus was inevitable at this point. Parked in a marked bay, Blue
Badge on display, what did I do wrong? Aside from forgetting the
vigabatrin in the first place. To add insult, the fine is roughly the
same as the fuel bill would hVe been if we had just driven home for it.

Home again, via the camping shop, which, naturally, did not sell camp
beds. One double hopefully unleaky lilo instead, comfy but not great
for Mog, and then a giant traffic jam all the way back.

And then tea, and civilised friendly people, and late night cuddles
for girls, and maybe it hasn't been a truly awful day. Although Mog
has needed Chloral Hydrate, and LF's ventilator has now unplugged
itself for the 2nd time as I write this. And now there seems to be a
large gathering not terribly far from our tent, adults and children
and inbetweenies, all singing Abba songs. It's shoot them or join in;
if you don't hear from me again you'll know which I chose.

Tia

Wednesday, 12 August 2009

That's better

And now the holiday can begin. We have sleeping bags, we have
blankets, we have sunshine and shade. Unfortunately we have mouldy
camp beds, so will have to take a trip to the local camping store
tomorrow. And despite checking and double checking, I have yet again
managed to cone camping without one of Mog's meds. Just for variety
though, after two years of forgetting the clobazam (in two different
campsites), this year it is the Vigabatrin.

There's something special about camping with Special Kids. It's partly
the fact that somewhat wonky children outnumber the more mainstream
variety. It's partly the fact that you know when people stare, they're
actually checking out the design of the wheelchairs, not just gazing
in slackjawed disbelief at the presence of a real live disabled child.
It's partly the fact that a wobbly child running towards a group of
strangers is met with smiles and open arms, not shocked disapproval.
But, just for tonight, it's the fact that enough fellow campers bring
spare emergency beds in case of accidents, and that somewhere in the
field, there will be another child on the same medication. Not enough
for the rest of the week, sadly, but at least enough for the next 24
hours, which buys us enough time to track down a doctor in the morning.

Tia

I've changed my mind

Joy...
Tia

Tuesday, 11 August 2009

Going,

Packing list
  • Tent
  • drugs
  • clothes
  • nappies and pads and wipes
  • food
  • coats
  • blankets
  • towels
  • torches
  • cooker and spare gas
  • pots and pans
  • cutlery and crockery
  • nebuliser
  • potty
  • bath
  • camp chairs
  • camp table
  • camp kitchen
  • feed supplies
  • power chair
  • minny chair
  • Mog's 3 wheeler
  • chargers for power chair, suction, feed pumps, phone and iPod
  • sleeping bags and camp beds

For the morning
  • toiletries
  • Nippy
  • suction
  • wheelchair
  • girls
  • map
  • diesel
  • food block for fish
  • camera, battery and charger
OK so who has stolen my sleeping bags? They are not in the garage. They are not in the cupboard under the stairs (yes, we have no stairs but we still have the cupboard underneath them. It's a glory hole great place to store all our camping gear. The sleeping bags are not in it), they are not in the airing cupboard nor in my room nor in the girls rooms. They are not in the sitting room, kitchen, playroom or sunroom. Nor are they on top of wardrobes, under wardrobes, buried in the laundry piles or masquerading as pillows or mattress toppers. Somewhere in this house are seven sleeping bags. Three from the first year I went, taking just Goldie and I. A fourth from when Mog joined us. A fifth, sixth and seventh from last year when we couldn't find these ones. Someone, somewhere, is eating our sleeping bags.

I'd probably be less stressed about this if I had started packing at the start of today, rather than getting distracted by making slippers for the girls, and leaving the packing until bedtime. They're not even particularly good slippers...

Oh well; if I believe the BBC weather forecast we'll be wet all week, which on the plus side means it probably won't get bitterly cold at night. If on the other hand I go with the Met Check forecast we're in for a beautiful next few days, which probably means starry starry (colder) nights. When I win the lottery, I will have minions to do my camp packing for me. And the washing afterwards. Alternatively, I could just buy somewhere with grounds big enough for everyone to camp in, and go back to my comfy bed and solid walls when I finish visiting with them.

We'll be there this time tomorrow; our tent will be up, these sleeping bags or borrowed ones from elsewhere will be inside it, and I shall be sitting on an extremely comfy camp chair catching up on a years' worth of "how are you"s with friends I rarely get to see. Until then though, you might want to avoid getting too close to me. Unless you're returning my sleeping bags or else possibly bearing a mallet and ready to help tomorrow.

Tia

Monday, 10 August 2009

More Little Fish Language

"Die NOW!" she squeaks as I turn the engine on. I know I'm not the best driver, but it strikes me as a little previous, until I realise she actually means "Drive now, please kind Mama."

"I want Mamma Mia". I fetch Mamma Mia. "No no not that Mamma Mia, Banana Mamma Mia". Ah, Balamory.

Today we sat at a table in a cafe. At the next table, by sheer coincidence, was a child who used to be Little Fish's sibling. Neither had any idea who the other was, and to keep it simple, we didn't introduce them to each other. It made me wonder about how differently their lives might have turned out if we had made different decisions. Only with adoption do you get to decide that you want to parent, not just any child, but that specific child. Of course, that doesn't mean you get to know exactly how the child will turn out, it doesn't give you any kind of happy ever after guarantee, but it does change lives, forever, with a permanency which is not there with fostering.

Watching this other child, I had several different visions of how our lives could be so different. I imagined the two of them, growing together as siblings in someone else's care. The two of them, growing together, under my care - unlikely that one; I can't imagine I would ever have been approved for the two of them. Or perhaps a swap, my Little Fish belonging elsewhere, and this child, so strange and yet so familiar, belonging to me. Would LF be who she is now if she'd lived elsewhere this past two years? Would she be herself? Would this other child have the quirks and foibles there displayed (nothing negative incidentally; I am simply avoiding specifics as this other life is not my story to tell) if I had been the parent? What if someone entirely different had been chosen? Would Little Fish be Little Fish at all?

And now I'm being called away by the girl herself, "Mummy, I'd like a dodgy biscuit please?" Oh, digestive biscuit? "Yes, and some cake, and a piece of bread and some ham. Is that a good idea, Mummy? Let's do that shall we?"

I'm definitely not interested in doing a swap.
Tia

Sunday, 9 August 2009

Slowing down for summer?

Tomorrow we have nothing planned. We have a carer coming at the usual time, 7AM, which will be somewhat of a shock to the system after this past week. Little Fish has been sleeping in until past 9,; even Mog has been letting me snooze until 7.30. So she'll be gone by 8, and we'll be left, dressed and awake, with a day ahead of us and no plans. School finished for the girls on July the 17th. And tomorrow, August the 10th, will be only the second day this summer where we have nothing planned. Sadly, I think there are only another two days unplanned until the girls start school again in September. Not that every day is packed full, just that we have at least one appointment every day between now and the end of the holidays.

A week away from our plans last week; a week with a fair bit of rest built in for a tired Little Fish. And a Little Fish who seems to have slowed down a fair bit. Not verbally; she's still averaging 17 "why?"s to the minute, but in every other way. She wants to sit in her bee chair not her manual wheelchair. She's sleeping in til 9, and then taking until 11 to eat her breakfast. She's grazing for lunch, then asking for a nap in the afternoon, taking another two hours to eat her tea and then going to sleep. Add in a few essential episodes of Charlie and Lola, and whatever appointment we have for the day, and that's another day gone.

It's a pace which seems to be suiting Mog nicely too - she suddenly tuned in to Charlie and Lola herself this afternoon and started laughing appropriately at some of the situations Lola was getting herself into. Interesting; it takes LF several viewings to work out what's going on, and her enjoyment then comes from the predictability of the familiar scenes. But Mog got the joke on first viewing. And then her eyes flickered again, and the curtains came down again, and her gentle seizures took hold for the rest of the evening. But for an episode or two, she was there, she was with us, she was sharing the joke. Great.

It's hot here which certainly slows me down. Walking from the door to the bus, and then loading the girls, and I'm ready to go back inside and drink buckets of squash. The thermometer tells me it's just 24 (75F); nothing much I guess but certainly on the hot side of comfortable for us. Little Fish breaks out in a constant sheen of sweat, wanting cuddles but hating the fact she sticks to me when we touch. And Mog relaxes, basking in the warmth, her muscles loosening, tight fists uncurling, ankles bending. And then she overheat, and fits, and that's the end of that - but she does love the warmth. I sometimes think we need indicidually climate controlled rooms in this house. Like the Living Rainforest, different rooms in our house would be set to different climates. I'll take something arctic for my bedroom please; give me thick duvets and warm, heavy, blankets, and I'll sleep like a log. Give Little Fish a nice handy "room temperature" temperature, and she'll doze under a light blanket; who knows, she might even learn how to turn herself over if not weighed down with covers? And Mog can have something slightly sub-sauna; nothing to cause her to overheat but warm enough for her to unknot herself, again without the pressure of too many layers. In our sitting room we'll have a nice cooling breeze we can all enjoy, with a sun trap where Mog and Goway can soak up the heat together. A nice neutral temperature for the kitchen please; cool enough that turning the oven on isn't a form of torture, but warm enough not to flatten my cakes whenever I open the door to check on their progress. And the bathroom, well, the bathroom needs to fluctuate. Neutral to warm I think most of the time, with whole body hot air blowers for the girls when they get out of the shower. I wonder if the savings in towels would be worth the costs of having one installed?

In the meantime, I'll stick with thick curtains to keep the sun out, a slow and steady pace, and warm blankets and radiators later on this year. I've been thinking about temperatures since a conversation this morning. I've been camping since I was 6 weeks old; my brothers younger than me I think. And it's never occurred to me that taking a small baby camping would be a problem. Talking to someone today, she wasn't sure about taking a 6 month old baby camping next year, as she was worried about the temperatures. My reply was that babies have actually been surviving quite well for centuries, even without central heating. And now I'm wondering whether that was unfeeling or unsympathetic or just downright foolhardy. I don't think it's the most sensible idea ever to take a very small baby, wrap them up in 17 layers and then leave them in the sun for hours, just as it probably isn't the best idea to strip them naked and let them play in the snow. But beyond those extremes, surely most babies do quite well most of the time? Or is this one of those areas where my philosophy regarding the girls (since their lives are expected to be significantly shorter than average, we go for depth and breadth of life experiences rather than length) doesn't translate to the rest of the world? I should probably work out the answer to that before I tell another mother her baby will be fine, just take a range of clothing...

Meanwhile, after a run of busies, tomorrow is an empty day. It's also the one day this week we're supposed to be getting rain. Cooler is nice; wetter can be a nuisance. Several hundred miles to the north, my brother and his wife are moving house tomorrow. Or at least, moving out of their house and enjoying (?) being of no fixed abode for the next few months. A lovely house I'm told; unfortunately chest infections and hip operations and other complications have meant we've never yet seen it. When they do have their new place it'll be in Tanzania; I'm not entirely certain I'm brave enough to take the girls on such an Awfully Big Adventure to go and visit them there - we shall have to wait and see. As it stands, we shall look forwards to spending time with them before they leave, and look forwards to reading their blog, when they get around to setting it up (hint, hint!). Oh, and incase anyone was wondering; yes, I've forgiven them for bringing the pox with them on their last trip south.

So I'll be thinking of them as they see the last of their posessions into the last of the cardboard boxes, and hand their house (and much of their security) over to new owners. But beyond that, we have no plans. Little Fish will want to spend the whole day watching DVDs which probably isn't the best idea ever, and Mog will want to spend most of the day listening to music, which is only slightly better (is it better at all? It feels better than being glued to the television screen, something about being free to use your eyes to do something else I suppose. But does this actually count when you're blind?). I know that we do not need to spend the day baking, we do not need to spend the whole day eating either. But beyond that, it's a mystery. And if I seem to be harping on about it a bit, it's because although this break from appointments is welcome; the thought of an entire day fielding Little Fish's whys without help from anyone else is also somewhat scary.

I should probably take myself off for some sleep in preparation.
Tia

Saturday, 8 August 2009

Porch Party

Visiting on each other's porches isn't somthing I'd be terribly likely to do in real life, not least because most porches in this country tend to be small things about 3 foot wide and 2 foot deep, just big enough to keep the worst of the rain pouring down the back of your neck and soaking your rucksack off as you wait for someone to answer their front door. But Lynette is having a virtual porch party this weekend, and, tempting as the prospect of staying at home and wallowing in self-pity is, I thought probably joining a different kind of party was probably a better use of my time.

I know a couple of you who hang out over on Lynette's virtual porch, but most of the rest of you are strangers - so here's me, stepping out from the bushes and putting the binoculars down ending a lurk and joining in. Hello!

In no particular order then, ten things about me. Regular readers who don't Lynette's blog can either ignore this or read on, go and read up on hers or do something else. But then you didn't need my permission to do that anyway. You'll notice I don't promise ten interesting things, just ten things. Read on at your own risk. Thank you.

1. I just bought two pairs of jeans, one size smaller than they've been for several years, despite a week of eating cake and takeaways. Go me!

2. I eat by feel more than by flavour. Malted milk biscuits, vanilla shortbread, Dairy Milk are all nice warm flavours. Mint, dark chocolate, lemon, and tomato are cold flavours. Cherry tomatoes are the worst, and remind me of bursting boils. I just know you're all delighted with me for sharing that last titbit.

3. I have two unfinished tapestries, one unfinished cross stitch, four unfinished pieces of knitting, three unfinished dresses and a long and useless piece of oddly shaped crochet. It is highly unlikely that any of these will ever be finished. I also have 30 yards (combined length) of shower curtaining and nursery mattress covering, none of which will ever be used. Anyone living locally wanting waterproof mattress covering or shower curtaining, please call in!

4. I'd rather curl up with a good book than go out for an evening.

5. I have not been able to light a scented candle in the house since Mog made it very apparent that she doesn't like them. I miss this. I'd like to know why incense is a problem for her but air freshener spray is not.

6. I do not enjoy the fact that my iMac has no right click. I'd like to know how mac users do many of the things I use the right click for, and how long it'll take me to work out what to do instead.

7. I am bored of having to turn Little Fish over in bed; she didn't used to need help doing this and now it can be every ten minutes or so. I am not an endlessly patient mother under these circumstances.

8. I never know how to answer the question "how many children do you have?" Three is too intimate for casual questioning, and two feels like a betrayal every time I say it.

9. I am now officially actively fostering again, and whilst I'm not expecting any placements before September, I am now available for short term under twos. This is exciting for all three of us, and apparently deeply concerning to everyone else. Share my joy, please, people!

10. This blog (in general, not this particular post) is a curious mixture of personal and public stuff. So much I choose not to post, so much I am asked not to post, so much else I choose to post which some people think I shouldn't. I try not to offend, upset, or break confidences. Where I have, I'm sorry. I wonder how accurate a picture of our life it portrays.

That's it; I'm off to meet some of the rest of you now!
Tia

Friday, 7 August 2009

Ho Hum

We had a good day today. A really good day, actually; help to get up this morning, friends to eat lunch with, a beautifully sunny day and an air conditioned van to drive around in Two happy girls, a shiny new computer to play with when we got home again, and a lovely clean house thanks to our cleaner.

And yet...

We should be on holiday this week. Not just a holiday - we should be at Neew Wine; we should be spending the week floundering in the mud with friends from church and others from church who aren't quite friends yet but might become so, worshipping, praising, learning and just plain having fun.

We've had a good week - a great week really, considering how poorly Little Fish might have been. With C here both girls have had a busy time, lots of cuddles and attention, lots of chances for Mog to do things when LF hasn't been feeling so good, and lots of distractions to avoid getting too upset about the many spots.

Not just Courtney; we've had other friends visit, we've had family here (side note: a very cute phonecall from my niece Emma yesterday. "Hello. Sorry for giving LF spots..."), it's definitely been more comfortable here at home rather than sleeping under wet canvas. We've been hsopping, we've done cooking, we've watched DVDs and eaten chocolate and generally had fun.

And now C's gone, and the week's gone, and I'm sitting here feeling grumpy and gloomy for the week we didn't have.

It's not the first holiday we've missed - at one point we missed about three trips in a row because Mog had pneumonia. We've missed family events, friends birthdays, general fun times and holidays. We've cancelled flights and lost deposits and turned up late and left early. We've abandoned family members with friends and spent New Year's Eve in hospital. Changing plans is hardly new to us.

And this was an avoidable illness - I knew there was a chance Little Fish would catch it, and I decided seeing family was more important. And it was the right choice, and LF has now had the pox and I think, I think that's the last of the normal childhood nasties for us. So no need to worry about it when it's doing the rounds at school, it won't now interfere with surgeries or respite or anything else. Definitely the right time to get it.

And it's only one out of our four summer holidays we're missing, and I know that on Sunday I'll be glad I'm not having to think about packing up, striking the tent, and trying to get everything washed and dried and ready for our next holiday on Wednesday. I also know that I've really enjoyed not having to get up in time to let our carers in each morning, and also that this has been the absolute perfect week to have an infectious illness in the house - our regular carers would not have been allowed to come in, so if this hadn't been the week we'd hired Courtney, we'd have been without help all week. Perfect timing, really.

Just for tonight though, it doesn't feel like perfect timing. Just for tonight, it feels as though everyone else has been invited to God's party and we've been left outside, unclean for seven days.

I should probably step away from Deuteronomy.
Tia

Thursday, 6 August 2009

New 'Puter

One fried laptop, one ancient desktop, and a newfound love for my iPhone and Mog's iPod. Plus a carer here who has banned me from saying anything bad about her on this blog tonight, but who happens to be in love with all things Mac. So please forgive the brevity of this post; I'm trying to feel my way around a totally completely different kind of a computer. And forgive the awfulness of the picture; we got home and then Little Fish used it to watch Charlie and Lola, and then C used it to play on Facebook and then suddenly it was very late indeed.

So far so good though...
Tia

Wednesday, 5 August 2009

Easy like Wednesday mornings...



so today was the day we though we might just make it over to Shepton Mallet for the rest of New Wine '09. Wasn't to be. More pox yesterday, a disturbed night, and then Little Fish slept until 12noon, only waking extremely reluctantly after I had given her a feed and meds. Mog and Courtney made the most of a quiet morning too.

This afternoon we went to an extremely exciting and very special drive-thru, after which three of us sat in the carpark outside pc world having an extremely unusual in-the-car chip picnic whilst the remainder of us (i.e. me) took a fried laptop in and argued with the tech guys. Spot which family may have been actually watching a tiny bit too much Charlie and Lola.

I'm doing an assessment at the moment, part of my fostercare practice development stuff. I had to stop as too annoyed with the answers the thing was trying to get me to say. So quick poll for you - do you think it is necessary to make more choices on behalf of your disabled child than it would be if your child were not disabled?

Tia

Tuesday, 4 August 2009

Disjointed ramblings

Three visitors today, including one who brought his own drink, and one who made half a glass of lemonade last all day. Add in one of mine who doesn't drink, and one who shouldn't, and how come I washed up 21 coffee cups this evening? I'm thinking that makes it a good day. Well, if that didn't, iPhone light sabres helped (oh ok and conversation and giggles and silly children and a serf Courtney to keep the crews amused.

Less good; my laptop died. Completely fried and got to go back to the shop to be data-recoveried and replaced. More pox so definitely no New Wine this year. Mog bright-eyed and bushy-tailed this evening as I wait to go to bed myself. And far too much chocolate cake left to eat.

Cute; a phonecall from my niece "Hello, hello? Sorry for giving Little Fish spots". And a long ramble about imaginary kittens, birthday present Christmas crackers, and an old yoyo. I'm still trying to untangle it but thinking maybe it's better left surreal and random.

A discovery - one made more by Courtney and the under 8s than by myself - you can't glue pompoms to pipecleaners even if the instructions the box say you can. A second discovery - this will annoy the 19 year old far more than the 2, 4, and 6 year olds. A third discovery; add together the ages of all four children who were here today and you reach the age of Courtney. Does this mean C is worth 4 of them?

Tia

Monday, 3 August 2009

Poxy Lady!

Practicing her cheesy grin.
Poxes are still arriving. She's taken to telling us when another one is coming out "Look, look I brewing". Taking a huge interest in all her spots and very cross she isn't allowed to go to Tesco.

Someone else is cross too; Courtney Courtney would like me to mention the fact that she is here this week and was under the blanket tent with Little Fish yesterday. And now I'm ducking and closing this window and running far, far away, before she reads this!

Tia

Sunday, 2 August 2009

Making Do

So, when you aren't going camping and you can't bash a few tent pegs with a mallet to release your fury, what do you do?
Hammer away at some ginger snaps to make a pie crust, that's what!

And when you aren't in a field surrounded by other happy campers, what do you do for fun?Gather your non-poxy friends and camp out in your mother's bedroom, that's what. Mog makes a good tent pole.
Today's pox-watch pic.
Tia

Saturday, 1 August 2009

Who needs holidays anyway?

Quiz for you all. Which of the following was not on my official plan for today?
  • Cat to cattery
  • Retrieve tent from parents' garage and pack in our bus
  • Give parents boxes of books and other stuff for future car boot sale
  • Check that milk is absolutely positively definitely cancelled for next week
  • Double check passes, map, site information, weather forecast.
  • Wash every item of clothing we possess, ready for packing
  • Entertain Mog's Grandparents
  • Come out in Chicken Pox
  • Pack
At least she managed it before I started finished the packing. It was impressive actually; no spots at all first thing this morning; I stroked her back at 11.30 and found one, there were two there by 12, and she now has eight and a raging temperature. We have acyclovir which she started within 3 hours of the first spot appearing, so I hope it'll help. But even though it isn't Swine 'Flu, I don't think we'd be very popular at New Wine, so we're not off camping tomorrow.

Grump and humph.

Tia

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