Behind The Child

Stuff

2012-02-15T22:13:00.002Z

Dear outpatients department,

When a small child is vomiting, the phrase you're looking for is "How can I help?" and not "well they shouldn't have sent her down if she was going to do that.

Dear paediatrician,

"What is she doing?" really? You've not seen a child vomit before? Another time, grab a handful of paper towels for the parent catching it in her fingers before running out of the room to find someone who can help.

Dear Little Princess,

Stop vomiting.

Dear doctors back on the ward,

"Really bad bugs in her blood" doesn't cut it.

Dear everyone who has been involved in sorting out safe places for miss Mog, cuddling cats, taking in post, bringing me sneaky flasks of coffee and replacement knitting needles and playing games with the princess,

Thank you,

Dear Pseudomonas,

Bugger off

Tia

Happiness is

2012-02-10T11:59:00.000Z

Midazzled!

2012-02-09T16:57:00.002Z

Today's post sponsored by the creators of midazolam. Or if not, it ought to be.

Today's plan: to remove two stents and a drain. My plea: sedation. This agreed by any of the staff who have had anything to do with The Little Princess over the past few days, queried by those who have only seen her unconscious, but fully endorsed thankfully by the dr who had the thankless task of trying to cannulate her on Sunday.

And so, Midazolam. And a very quickly loopy and ultra chilled LP, who suffered having stents (which would later turn out to have been stitched into place) pulled out; coped with one snapping and needing to be fished for with a sharp and poky knife, and managed to have a drain removed with nary a "Stinky!" being shouted. They couldn't get it out; we'll have to go back at some point in the next six months and have it properly fished for.

But huge sighs of relief from all on duty as tLP has all day being asking for people to come in and see her, wanting to hold hands and paint and generally been sweetly sleepily loopy. She is now asleep and snoring (and oddly, despite not being hooked up to her nippy, has substantially better sats than she had last night with it).

We did push it a little by attempting to shampoo a week's worth of blood and bile out of her hair, and I think it's safe to say she objected to that quite a lot despite the sedation, but even so the fighting was less than it is at home. I wonder if we could have a prescription for every hair wash? Probably not, but I think I shall be pushing for it for blood tests and other big time stresses for her in future.

So, what could have been the worst day so far definitely transformed into the most peaceful. And excellent news from Helen House who have sorted a seamless transition from respite to hospice for Mog on Sunday; our last worry this week out of the way.

Cats appear to be surviving nicely without us although I think Sarah needs some seriously good chocolate for clearing up after an unfortunate cat trapped in a bedroom incident!

Now if we could just get this bowel working again, then we could start looking at home

Thank you, Livvy's Smile!

2012-02-08T11:44:00.001Z

Bit of a rough morning - bloods needed, big green vomits, things not going quite the way they are supposed to be going.

Cuddles a comfort but not a cure. Visitors welcome but liable to be snarled at. Or possibly pressed into service for their skills in bed changing and back washing (thanks K!)

And then, a big mysterious box turned up on the ward. Scissors being used not to snip bandages or stitches, but to unseal the Sellotape, and out popped a big purple get well soon balloon! And a lovely cuddly teddy bear, and don't tell tLP but a rather nice box of chocolates for Mummy too.

And then the nurse came in, and instead of "go away, stinky", she heard "look at my balloon". And the surgeon turned up to say he is really pleased with her progress, and he got a smile and a balloon flapping in his face instead of a screech.

And the teacher, and the play lady, and myself have all been treated to the sight of tLP voluntarily moving her arm to flap the balloon and finger the teddy bear's skirt. And ok, the smile was a bit forced, but it's there, and Thank You Sara and www.livvyssmile.co.uk

Tia

By order of Her Royal Highness

2012-02-06T22:54:00.000Z

The Little Princess asked me to take this picture to show everyone how brave she is. She tells me "aving operation is easy peasy lemon squeezy" although I'm not sure the anaesthetist was altogether in agreement. She has been counting tubes and we think she currently has eleven. Although right now, I can only locate ten of those in my head. We'll have a recount tomorrow.

Anaesthetist said he'd try a different cocktail this time and warned me she'd "be like a teenager on a Sunday morning" for a couple of days when she woke up. I have a feeling he doesn't know the teenagers we see on Sunday mornings - unless they spend their time grunting and telling radiographers they are naughty pixies, nurses they are stinky and doctors they are just plain horrible.

I think it's safe to say she's not best pleased with any of them right now. But, she's not in pain, they managed the full op, everything which is supposed to be draining is doing so nicely. The chin strap for her Nippy can be placed so it doesn't block the central line, she can move gee head and betubed arm even if she doesn't think she can, and HDU have a Charlie and Lola story she hasn't heard before.

Here's to the bravest Princess I know.
Tia

Waiting

2012-02-06T18:25:00.001Z

The Little Princess has had her operation. Irreversible replumbing - mitrofanoff, bladder augmentation and ACE for those of a medical bent (or with the will to google).

Waved her to sleep at 9.30 this morning, had a frantic call from HDU about 15 minutes ago asking for her Nippy, got to the ward to find the Nippy gone.

And so it is that I know she is through the surgery - will be landing on HDU in around 15 minutes, and they'll be calling me once she's fit to be seen.

And I wonder why it is that the hour we had to wait this morning before she went to theatre was longer than the nine hours I've waited all day, and why this next 15 minutes are longer yet?

And I also wonder why this waiting room reeks of smoke.

Waiting,
Tia

Ps. Pic is view from my room upstairs in the Ronald McDonald house; my home until she's back on the ward.

Because it is, ultimately, all about me.

2012-02-03T20:58:00.003Z

A new kitten is a great way to occupy a week or two. Throw in a poorly child; nothing majorly wrong but just "Not Right", and there's a beautiful distraction from the fairly major surgery planned for child number two.

But there does come a time when, no matter how cute the kitten, the headline news on the radio is that patients admitted to hospital on a Sunday are 16% more likely to die than if they are admitted on a Wednesday, including planned admissions, and the "la la la I'm busy, can't hear you" stops working, and you realise you are in fact heading that way in just two days' time (and yes, going in on the Sunday). It is, however, significantly better than the outlook this morning, when I misheard 16% for 60, and was considering calling the whole thing off.

I could drive myself mad wondering whether there really will be a statistically significant difference for the Little Princess between our Sunday admission and our originally planned Monday admission, but ultimately it's out of my hands, and I either trust the staff (and God) or I don't. We're going in.

But, in the meantime, if the sight of a very confused little kitten trying to suckle an equally confused neutered adult cat isn't distracting enough, then I have a lovely bag of yumminess to explore.

It occurred to me, in one of those pre-dawn-ugh-I'm-not-awake-back-off-world moments that there may well be a considerable amount of down time over the next week. We'll be aiming to keep the Little Princess nicely comfortable, and that should hopefully mean a fair bit of her being asleep. And then of course there's the op itself on Monday when I'm absolutely certain she'll be unconscious and there won't be a great deal for me to do, since for some reason they don't seem to like parents to be involved in the surgery.

And, with a new kitten in the house, crafty type stuff is having to be on the back seat - pretty photos aside, cats and knitting just aren't a natural combination. Hmm, a cat free week; what can I do with that? Legitimate knitting googling; hurrah!

I found myself here (warning: link could be hazardous to anyone keen on rather splendid wool). Free patterns, marvellous! Free patterns for some extremely delicious fair trade hand dyed gorgeously textured ~~ouchily pricey~~ wool. Hey, it's Fair Trade - buying it is a Good Thing, yes?

Just one problem; hospital admission on Sunday, and today is Friday. Our local wool shop doesn't stock the right wool for the pattern I've chosen (although it does stock the silk and lace yarns, check them out!). I call an internet supplier. No problem; they can arrange a delivery for Saturday. Small problem; they don't have the colours I want in stock. I take a look at another site and decide I don't actually have time to arrange a second mortgage. I check a third; equally ouch. I call another supplier, Yarn Box. Handily, Nicola is about to sort out the day's post, and will pick and pack my wools as she does. Even more handily, Yarn Box turns out to be based very locally, and she will drop the yarn round herself - now that's definitely service! And here it is:

Pattern downloaded and printed, needles ready and waiting, and it is only the kitten lying on my lap playing with my hair which is preventing me from making a start already. Roll on Monday; I'm almost looking forwards to it now!

Tia

by special request

2012-02-01T10:25:00.002Z

It seems that the recent cute overload is causing mild ructions in places where the almighty cat is not universally worshipped.

If that's you, then here are some reasons why parts of your family may not be over enamoured of the fluffy little beastlings.
Unneutered, they may at times spray the walls.

they like to scratch their claws, rejecting the very special cat tree you have purchased for the purpose, and instead choosing your child's toy box. and their ideas of suitable gifts are not always graciously accepted.
But still, how can you resist this?

Tia

Mostly Good

2012-01-27T19:14:00.002Z

Everyone up and off in time for school; two girls into chairs with no fussing and two cats sniffing each other instead of hissing.

A long deep bath, interrupted only by the occasional pair of blue eyes peering over the side, querying why on earth I'd want to mess up a good waterbowl by climbing in with bubbles.

A minor panic at the realisation I'd left myself just four minutes to get dressed, and then an inevitable interruption - this time from school saying Miss Mog was all "white and spiteful" and Just Not Right. I did however still manage to be clothed and decent before being picked up; I'm sure my friend was grateful for that.

A diversion to collect a fairly limp and pale Mog from school, and then on to the important business of the day - coffee with the ROSY ladies (and George). Where else can you go, be introduced to someone for the first time, and find people uttering the warning "there's a lot of poo talk, just so you know"? And there aren't many places where you can sort out an evening out, babysitters for that same evening out, and the loan of a changing bench for three weeks in the summer all without having to put your coffee cup down or pick up a phone. Nor are there many circumstances where you can be sniffling over the death of a friend's child whilst simultaneously discussing the creation or arrival of each others' children - conception, birth, death, poo and parties; we cover it all in just a couple of hours.

Move from coffee on to lunch; more chat, more laughs, more yummy food and a good prowl around the antique shop. Must. Resist.

Fortunes safely unspent, and home to the post. No much awaited parcel, just a speeding notice and offer to attend a Speeding Awareness Course or else take points and a fine. Grump.

A Grannie visit, and a photo of my precious newest nephew, born on the 25th. Congratulations to the Scottish contingent! And well done on finding a name which is truly unique and sounds well beside his sister.

And then the best news of all (because new baby news I've had for a couple of days now), two cats sniffing and finally kissing before settling down in different corners of the same room.

Fluffy Stuff

2012-01-24T20:51:00.004Z

Grolly is not best pleased with life right now.

There's a house invader. And he seems to be filling this house just as much as he fills the doll's house.

He's a lap surfer,
A child-fisher (it's possible she's a kitten-fisher, but it seems to be about equal),
phone hogger,

and power napper.

And her nose is seriously out of joint.

That said; it's not going too badly. They've met each other and had the odd hissy stand-off, but nothing more. Overnight, Benjamin has the sitting room and his beloved computer table, and Grolly has the rest of the house and the whole wide world. During the day, they both have most of the house, Grolly has exclusive access to my bedroom and the cat flap . And I'm only feeling a little bit like neutral territory when I have kitten on my shoulder peering down and cat at my knee, determinedly not looking up.

There is more to life than cats right now, but they do seem to be a fairly huge part of it.
Tia

New Arrival

2012-01-20T20:19:00.004Z

No, not the one family are waiting for (but all the best with that, Y!) Nor yet a temporary fosling. But please meet Mr Benjamin Boots.

Please also ignore any typos, as he's standing on the keyboard trying to help me type.
Unlike Grolly and Gotcha when they came, he shows no fear.
Meep. Please come and play.

Excuse me.
Normal service may be resumed at some point when he deigns to slee.p. (extra full stop delicately inserted by one white paw).
Tia0000 (those OOs too)

Randomness

2012-01-19T20:52:00.001Z

Photo from a cobblers we found on holiday.

Bump!

2012-01-17T19:08:00.003Z

This letter arrived for Miss Mog the other day.
It's come from the same hospital which has repeatedly sent out letters cancelling an appointment and rearranging it for exactly the same time and date, so when I read the new appointment I initially thought this was the same thing. And then I checked the original date again, and realised that no, this was a genuine shift of date and time,

So why, then, did this appointment time ring so many bells?

All was made very clear when I opened the Little Princess' post
Sorry, tLP; your sister's stolen your appointment.

Shame; for a brief moment it appeared that I would have two children having appointments on the same day with the same consultant. It was very nearly joined up thinking...

Tia

On a lighter note...

2012-01-16T20:52:00.000Z

Because things aren't all grim here, and we do actually have quite a nice jolly time most of the time,

A missed photo opportunity - Grolly Beast playing with Mog's switch. Apparently, a toggle switch is just the right shape to really get behind those ears when you're moulting. Apparently, a cat using a switch to say "Hello" repeatedly is the Funniest Thing Ever if you're a girl under ten and living in this house.

And, in other news, did you know, I am the Mother of God? There's promotion for you! Who cut her back aside, the Little Princess' other big query is "Why I not got a Daddy?" And yes, we talk about her life story, we talk about her birth father, we talk about how there's just me so if she wants to keep me as a Mummy, she has to manage without a Daddy. And then we talk about how no one has to be without a Daddy because we all have a Father/Daddy God in Heaven who will be our Father if we love Him. And we talk about how Jesus loves us, and how if we love him and ask him in, he will always be with us, so we will never ever be alone, not even if it's night time and the lights are out and everyone else is asleep in different bedrooms.

We find bits of the Bible where Jesus says anyone who loves him is his brother or sister. And tLP is delighted. She has a Daddy God in Heaven, and now she has a Brother Jesus too. A Daddy and a Brother who love her, and who will always be with her, and who are always ready to listen and to keep her safe. But wait, see, because I am her Mummy. So if Jesus is her brother, well, you see where this is going? My middle name is Mary, after all.

The world can be a very confusing place when you're six. And possibly even more confusing when you're the mother of a six year old.

Oh, question for the wise readers. Anyone got any recommendations for a nice friendly "where do I come from?" type book which is preferably literal enough not to go down confusing side alleys regarding aliens or the laying of eggs, no special sneezes, and ideally one I can adapt to include cesarean sections and adoption too? Failing that, anyone fancy writing one?

Many and varied are the conversations I never thought I'd have. One of the bonuses of having a neuropathic bladder is that you're very familiar with medical names for various body parts. Explaining that no, you don't squeeze babies out of your urethra and they won't block the catheter has to be one of the more unusual things I've done this week.

Tia

Identity

2012-01-15T20:10:00.003Z

Sometimes, I can be startlingly slow on the uptake.

For four years, I have rubbed creams into this back. Removed and replaced vests and swapped t-shirts for pyjamas ~~and got cross when she wont do it herself~~, traced the march of her spine from vagely midline to its current very off-kilter position.
And it only occurred to me a few days ago that the Little Princess has never seen it herself. She rubs it, runs her fingers over the squishy bit and says it hurts, patters delicately down exploring the change in sensation from full feeling to anaesthetic, and occasionally finding a rougher spot. She asks me, and I tell her it is her lesion, her myelomeningocele, her spina bifida. The spot where her nerves came out of her body, and the reason why her legs and various other bits don't work so well. She nods, we talk about the difference between her Spina Bifida and Mog's Cerebral Palsy, and we talk about everything she can do and how whizzy she is in her wheelchair and how much I love her and how precious and special she is to me.

And then she snuggles down to sleep, and I pat myself on the back with how efficient I am at explaining these things, and life goes on.

So this time when she asked, I took a photo. I showed her. "That's not my back. Who cut me?" I explain, once again, that this is her lesion, her Spina Bifida, the bit where there was a bag of nerves hanging out of her back. That no one cut her, but the scar is from where the doctors put everything back inside.

She remains adamant. This is Not Her Back. And I think, should I have shown her earlier? I haven't been hiding it from her; I just never thought about the fact she hadn't seen it. And I realise we haven't discussed scarring from her upcoming surgery.

My little girl has a scar on her stomach from where her VP shunt was inserted, and a weepy oozy hole where her gastrostomy lurks. We've counted up the tubes, and she knows roughly where each one of them will be, but I never thought to ask whether they will need to cut her open too. I assume you can't chop a bladder in half without making an incision to insert the knife at least. This time next month, she will have a pattern of holes and tubes on her front, as well as this new-to-her long scar and birthmark on her back. War Wounds from the battle against her broken body. How do I give her a good body image when we're throwing so much time and effort into, and putting her through so much pain in order to patch up and improve that same body?

She has a zip at the back of her neck, a bald patch behind her ear, a permanent record of previous surgeries. Her forehead has a neat white scar - her fringe hides it, but people have been known to ask if she was shot in the head. Nope, it's another battle injury - the pressure sore formed by prolonged use of the only mask suitable for Non-Invasive-Ventilation when she was much smaller. Smaller, more delicate scars cover her ankles; an unsuccessful attempt to straighten her feet. And a long fat scar winds its way down one hip, the hip which is now firmly attached to the leg which has been surgically shortened in order to reduce the risk of it dislocating again.

All these, she knows and accepts. She sees them and does not question them; occasionally likes to hear the story attached to them, but they are just a part of her. They will, no doubt, be added to over the years. Already we have another major surgery lined up for when she recovers from this forthcoming major surgery. But these she can watch growing. She sees the dressing, spots the stitches, screeches as they are removed, and supervises the scabbing over and the new skin forming.

And now suddenly she has been presented with a new picture. The back she strokes so carefully, stretches gently and twists out of achey postures and into newer ones which can't be comfortable, the pudgy squidgy bits with no bone where bone should be, and the fluffy hair bit where no hair should be growing. All this has been known to her fingertips for as long as she has been able to reach behind her. But seeing it has been a shock. We talk about those other children she knows, or knows about, who have Spina Bifida. We talk, once again, about the job nerves have and how her nerves can't send messages properly. And we look at the picture of her back, o I can talk about her nerves and trace a pattern on her back and on the photo at the same time. But "That not my back. Who cut me?" remains her response. And as she sleeps, the nightmares are back, and she wakes up complaining her back hurts.

And it doesn't matter that I think she's amazing, it doesn't matter that God thinks she's brilliant, it doesn't matter that there are hundreds of things she can do. Because there on her back is a giant great scar, commemorating the quirk of development which led to her disabilities. And she'd like to know who cut it.

Tia

Having a Laugh?

2012-01-12T11:39:00.003Z

It's just a bit of fun, that's all. Knock on the door, ring the bell, rattle the letterbox then run like fury. Stop at the corner, watch the face of the woman who gets to the door, laugh loudly so she knows it was you, then run some more. All good fun right? Never hurt anyone, right?

Well, let me tell you a bit about what happens here in this house when you do that. See, thre's one girl in this house who is hypervigilant. Any noise when she's going to sleep causes her to bolt awake again, panicking, in case Mummy is about to disappear. She's adopted. Whilst she was never abused or neglected, I am her third Mummy. The first one grew her well, nurtured her in her womb for nine months, probably dreamed of her precious new baby. But my daughter didn't go hoe with her. She spent a few months in hospital, then went home with a new Mummy, one who loved her and cared for her, and kept her safe until her forever Mummy could be found. And then she came home with me. And it doesn't matter that all three of those Mummies loved and love her; deep in her soul there's an injury; an abandonment, the conviction that I will one day walk away and she will be on her own.

Every time the door opens - and she can hear the handle turn in her deepest sleep, so deep rooted is this fear - she thinks that's it. She wakes up, scared, needing reassurance. She hears the voice of our visitor, recognises a friend or carer, smells the takeaway I may have ordered, and accepts that this time, it is ok. I am going nowhere, and she can sleep again.

But then you knocked. Who is there? No one. She doesn't understand that. Two boys playing a silly game. She definitely doesn't understand that. She is suspicious; this must be a trick. This time, this really was the time when I was going to walk out, only she has caught me out by waking up. She'd better stay awake all night, in case I try again. And she'd better call out regularly, just checking I am still there.

And then I have an other girl. This one has epilepsy. Loud noises give her fits. Friends, family, carers, they all know to let themselves in quietly if she's gone to bed. So your fusillade was hugely unsettling. Seizures, electrical discharges misfiring through the chaotic caverns of her brain. A stack of fireworks being set off in a small box. Killing off random braincells - and she doesn't have all that many to spare. Epilepsy kills. There's a chance one day that she won't come out of one of these seizures.

And so as I stand at the door, and I see your laughing faces, before you turn around and run off, I don't give you the satisfaction of even thinking about giving chase. I close the door, quietly, and try to reassure one child whilst moving things out of the way of the other, calling out to one girl so that she knows I haven't disappeared whilst piling pillows up against the hard sides of the other's bed, giving her space as her limbs thrash uncontrollably. And then, noting the time, in case I have to give emergency medications or tell a paramedic later, I leave her in her seizure and go to calm the hysteria.

Do you get a bigger laugh out of that?
Tia

Soundtrack to my life

2012-01-11T21:09:00.004Z

Because Miss Mog has found her groove again, this is what we're hearing from after school until the Tizanidine terminates all thought, and from midnight until the Tizanidine does its thing again at 5am.

Don't try to interpret the Little Princess - they both think gobbledygook is funnier.

And, because life is just that interesting, I (hopefully) include links to two of my regular evening noises with no prize other than infinite kudos to whoever correctly identifies them both. Alternatively, this will be yet another blank post with baffling references to invisible links. Bear with me; I can't upload videos any more for some reason so am trying audio files instead.

Edit: because I am not technically literate, this is not something which is going to be happening tonight. Or any time soon. In the meantime, hopefully, here is the video which I couldn't get to upload earlier. Sometimes my life is unnecessarily complex.

Oh, and does anyone know how to convert voice memos from the iPhone into a more transportable audio file?

Tia

Beechenhill Farm

2012-01-03T20:46:00.000Z

It's a family tradition now that we go away for a few days after Christmas and before school begins. Well; mostly before school begins. The company varies, the location changes, but the constant seems to be that we leave extended family behind, gather friends, and find somewhere peaceful ~~then spend the next few days destroying the peace~~.

A lovely week in Shropshire last New Year; but with a fairly significant disadvantage of a non-accessible cottage. Two steps down to get in, and a picturesque but not pretty precarious steep wooden staircase to get to the bedrooms.

Beechenhill Farm made up for all of that.

Their Cottage by the Pond is an accessible, 3 bedroom cottage converted from an old cowshed. It's beautiful. Big, wide, sliding doors. A bathroom approximately three times the size of ours (although a hoist over the bath would have made it perfect), shower chair and mobile hoist and profiling (though not height adjustable) bed. Two downstairs bedrooms, so neither Friend C nor myself had to be noble and volunteer to carry children upstairs.

Plenty of space for all three wheelchairs (unless one of the three is a six year old who drives a tank and insists on sitting in doorways in it), and a very beautiful wood burning stove in the sitting room.

And views like these from the windows. Well, mostly views like the one at the top on the left there, or huge great walls of cloud, the High Peaks apparently having their own little mini micro climate mostly consisting of thick blinding rain. But with views like this on the one day it didn't rain, we'll not complain about the rest. Even in the rain, it was a spectacularly beautiful place to be. Soul food.

Stomach food too; we were able to buy milk straight from the milk tank, and had eggs, sausages, bacon, so-fresh-it-was-still-warm bread and a nice pile of readymeals all waiting for us when we arrived.

We tried to persuade the chickens waddling wide-legged around the yard to lay extra fresh eggs, but sadly they didn't oblige. The Little Princess did get to go on a mini expedition to meet the calves and refill the milk jug though; it probably doesn't come much fresher than that.

We will be back; a thick folder full of ideas for accessible outings and even rating accessible pubs and restaurants (we decided to avoid the one where only the crisps were recommended) and we didn't begin to scratch the surface of it. I think we may need to see this place in all its various seasons.

And then a nightmare of a run home, with a poorly Mog who decided the vibrations of the van were the perfect percussive chest physio. This would have been helpful, if it didn't mean we needed to pull in every 15 minutes or so to suction the loosened gunk, turning a predicted 2.5-3 hour journey into an epic 6 hour marathon. She's looking great now though; it was clearly exactly what she needed.

Oh - and how could I forget? A new first for us; enough electrical sockets in the bedrooms that we could hook up CPAP, ventilator, humidifier, 2 feed pumps, sats monitor, video monitor, and still have a spare socket for reading lamp without having to use a single extension cable. We can't do that at home!

We will be back.
Tia

Happiness is...

2012-01-02T19:33:00.001Z

Think we're going to like it here!

2011-12-29T15:21:00.000Z

It's definitely a touch more rural (for which read: miles down winding single track roads with sheep grazing (unsuccessfully) in the middle) than we've done for a while. It's warm, cosy, the company promises to be excellent, and it's home for the next few days. Oh, and the views aren't bad either!
Tia

Christmas, it's Christmas, it;s Christmas once again

2011-12-24T19:52:00.002Z

and if you've been at Christchurch for a while you're now singing along. If not, then just for all you lovely people who don't have the pleasure...

Christmas, it's Christmas,
It's Christmas once again.
The Birthday of Jesus,
Born in Bethlehem.

The Lord, who was that tiny baby
Existed long before the birth
He laid aside his heavenly glory
To be Jesus, Saviour of the Earth!

Christmas, it's Christmas....

The Lord, who was that tiny baby
Grew up to show the Father's love.
He laid aside his life to bring us back to God
Raised to life, he's back in Heaven above.

Christmas, it's Christmas...

I'd insert a video here but apparently we and Cupar Old Parish Church are the only people who ever sing it. In the gospel according to Google, anyway. I am truly sorry I can't share the earworm. Tried to find something equally ~~irritating~~ catchy for you, but failed.

So am sharing this again because it still makes me grin.

I'm finding myself wondering at the moment. Nativity stories love to include the innkeeper. The Little Princess has been Inky the Wife more than once (I guess innkeepers' wives spend a lot of time sitting down). But, you know, there's no mention of an Innkeeper graciously or begrudgingly allowing Mary and Joseph to sleep in their stable. Just the fact that they did. And I can't help picturing them waiting until the middle of the night, and slipping in amongst the animals, dragging themselves up early again the following morning before they were discovered. Or wondering how many other people were already crowded in with the animals in some kind of temporary refugee camp. I wonder how many nights they'd been there before Mary gave birth. And how many nights it took them to get there from Nazareth. And what they did for nappies. I'm thinking that a Heavenly Host of angels and a flock of shepherds probably blew their cover if they were hiding out.

And then, warned by angels, Mary and Joseph took the baby and fled to Egypt. Shortly before Herod killed all the male babies in Bethlehem. I wonder how much stigma they suffered there - a potentially illegitimate child, certainly one conceived before a betrothal became a marriage. Refugees, who somehow mysteriously managed to escape a mass infanticide no one else knew was coming. How long had they been in Bethlehem before that? How many of those mourning mothers had been Mary's friends, supporting her as a stranger in a strange town around Jesus' birth?

And I wonder what it was like growing up as Jesus' little brother or sister? We know the oldest in the family is always the perfect one (nb: I am the oldest in our family), but how must it be, realising your older brother really IS the Perfect Son? What must it have been like for Mary, having an average child or even an exceptionally wonderful child, after having the perfect, sinless one?

What happened when they finally went home from Egypt? What happened to Joseph? Did Mary save that Myrrh and use it on that fateful Friday 30 years or so later? Or was it sold, used for other relatives? Did that gold fund their exile in Egypt? And at what point did Mary realise her son's Kingship would kill him? How about Joseph? What was it like, being God's Stepfather?

Christmas; it's a time for children. The magic of a tiny little baby with cute fluffy animals, and kings and angels and fairy princesses, fat jolly men who provide endless wish fulfillment (or provoke a deep terror and tears at bedtime, because either you don't let Father Christmas in because he's scary and then you won't be scared but then you might not get presents either, or else you do let him in but then he's scary, and the suggestion he might not in fact be real is even scarier yet). Pantomimes and cinemas and "specials" for every tv programme. Whilst we the adults wish a longer labour on Mary as we wrap and shop and wrap and bake and clean and decorate and prepare and, well, and maybe, just maybe, manage to spend a bit of time forgetting the trimmings and cutting back to the meat of the story. Emmanuel, God with us, God humbling himself, pouring his might and majesty into a frail human body. Fully human and fully divine; a mystery still dividing the world two thousand years later.

Happy ~~Christmas~~ Birthday.
Tia

Sign 26137 that you may have a medically complex child

2011-12-20T20:41:00.002Z

When you go to the Theatre Direct Admissions Unit, and the day's patients' notes are all set out neatly on the top of the nursing station.
And you can tell, instantly, what number you're going to be, because your child's notes are not just a neat pink folder but a giant, sellotaped together because it's falling apart because it is so heavy green and white box full of big fat pink folders.

No surgery today, incidentally, just sorting through photos. No surgery next month either, which is nice, ish - been delayed until Feb but should still be over by Easter.

On a not entirely unrelated note, if giving your child a suppository shortly before a carer is due to come and give her a lovely shower, it is probably best to check said carer is actually coming and is not in fact at home making mince pies having completely forgotten about the shower.

On the plus side; I now have no need to share the Chocolate Nutella Sea Salt Fudge I made earlier. Although I'm not sure that a whole batch is necessarily the best thing. I would share it with the girls, but the Little Princess turned her nose up earlier, preferring broccoli. These are the times which remind me she is adopted.

Tia

Cuts to support for Children with Disabilities

2011-12-19T09:59:00.000Z

This is one for those of us living in the UK. You might not have a disabled child yourself, but I urge you to respond anyway, please. According to Every Disabled Child Matters and Mencap, the government is proposing that the premium added to Child Tax Credits for a disabled child (currently £53.62 per week) should be halved to just £26.75 as a part of the new Universal Credit. That's a cut of £1400 per year, or £22,000 over a disabled child's childhood.

The Joseph Rowntree Foundation calculate that a disabled child can cost between 3 and 10 times as much as a non-disabled child over the course of their childhood. Disability Living Allowance covers some of these extra costs, and for families on lower incomes, disability premiums on Child Tax Credits help with some others.

£26.75 a week doesn't sound like much perhaps. For us, that's slightly less than the cost for one session for one child at the only local playscheme which will take both my girls occasionally in the holidays. For a friend, that's the cost of replacing her son's coat because he's chewed through the sleeves on the school bus yet again. For some local families, that's the cost of the additional incontinence pads they are now forced to buy, the PCT having decided to ration children to just 4 "products" per day. For another friend, that's the cost of having someone meet her daughter after school occasionally, in order that she can give attention to other children - her Local Authority having decided their need is only severe, not critical. It's the cost of being able to keep the heating on and high enough to keep a fragile child out of hospital. It's out of season soft fruit, high fibre brown rice instead of Tesco Value, all the dietary supplements needed to keep immobile bowels moving and avoid the complications of constipation. It's taking that duvet to the launderette again, or replacing the washing machine when it dies, yet again.

The recent decision that the mobility component of DLA should be removed for people living in care homes has been overturned, the government apparently not having realised (really?) that people living in care do actually still need to get out and about and lead meaningful lives, and that yes they do in fact need vehicles in order to do that. Full credit to them for deciding not to implement that; please now help to encourage them to think again about the impacts of this decision.

Here's a link to the Every Disabled Child Matters form for emailing David Cameron and asking him to rethink this decision. Personally, we'll be alright here. But that's because we have adoption allowances, and by definition, birth families don't have that luxury. And nor do every adoptive family. And I know too many families who are turning every penny twice before they spend it. Cutting their income like this, whilst food and fuel and everything else continues to go up in price could well be the difference between coping and not coping. And not coping is going to cost the gov't an awful lot more than £26.75 per week, if that child ends up in hospital or foster care.

Tia

Co-operation.

2011-12-18T19:52:00.002Z

I've been trying to get a video uploaded for the past couple of days, but Blogger isn't working. So, here's the still version instead.

The active version is louder. With a little more enthusiasm from Mog, and a hint of outrage from the Little Princess. It amuses me.

Tia

Little Princess, Big Prowess

2011-12-16T15:46:00.002Z

It's a rare event that the Little Princess condescends to tell me anything at all about what happens at school. Today though, she couldn't wait to tell me that she'd been declared "Writer of the week."
The rest of the certificate explains that it is for excellent independent writing.

Now, at home, tLP's independent writing tends to be illegible scribbles all over the walls, new toilet chairs, tiles, keyboards, my books, and anywhere else which will accept whichever pen she finds.

So finding, tucked behind the certificate, this little book, was fairly impressively outstandingly excellent and an altogether brilliant way to end the term.
I love the sheep.

It's starting to feel a lot like Christmas

2011-12-16T06:23:00.000Z

There's magic happening in the windows of the cake shop
Little Princess climbed up on Mog's lap to get a closer view.

Father Christmasses being created from tubes of icing
Christmas pudding cakes getting a covering of custardly icing.
And an edible Albert Hall. Yum.

At home things are smelling a little seasonal, with gingersnaps and pears and Christmas candles.
Fresh pine, so much fresher when it's genuine from a tree and not masking the toilet bleach.
Last night we had one of those magical moments where I want to stop the clock and freeze time. A lovingly if not beautifully decorated tree, the Nativity finding this year's home safely on top of the piano, the playroom lit by twinkly lights and our Advent Candle, and both girls singing together - Little Princess with the words, Mog with the harmonies, and myself on the endearingly (ish) out of tune piano. Away in a Manger "Sing the Lord Jesus again, Mummy please" roundly endorsed by Mog with a big "Ahhhhh" of agreement. And so we did. And again, and again, with brief and mostly unsuccessful forays into Once in Royal or In the Bleak Midwinter but mostly coming back to the children's carol and rejoicing in its combined familiarity and wonder.

And I can't freeze time, and bedtime has to happen, and morning comes and the days go on. But if I can't freeze it, then perhaps recording it will serve to remind me of its sweetness.
Tia

Reviews - your thoughts please

2011-12-15T03:37:00.000Z

I occasionally write reviews for BookSneeze. It's a nice system; I choose a book from their site, they send it to me either electronically or in print. I read it, review it on my blog and on one other site (Amazon, ChristianBooks, wherever else I fancy), I send BookSneeze the links to my blog review and to the review on another site, and then I can choose another book. There's no obligation for me to write a positive review; there's no obligation actually to write any review at all - except that I won't get another book until I've reviewed the last one. Suits me; I don't get into our local Christian bookshop very often, and so I get to see books I wouldn't normally notice. Plus, I like reading. Lots.

Now I've had an offer from Thomas Nelson, offering me a similar set up and the chance to review their new Bibles etcetera as they come out. And I'm thinking this sounds good, but what do you lot think? Does it bother you if I review things on the blog? Do you like them, think they detract from things, don't care what I post as long as I post something?

From time to time I get offers from people wanting me to review things which really aren't a part of who I am - a very nice site for silver jewelery offered me a pair of earrings, but I didn't really fancy getting them pierced again. People suggest I might be interested in balloons, or mechanical gadgetry, or various bits and pieces which seem to be vaguely linked to one post I maybe wrote a few years ago, and I generally decline. Lots really isn't relevant to me or mine as an English family living in the UK. But, I've just had a nice (I think) offer from a digital scrapbooking site, offering to send me a copy of their software for review, and one for a giveaway. I know I've got some scrapbooky people out there; would you be interested if I did this? Or are these reviews just a slightly subtler way of sticking adverts on the blog?

Let me know
Tia

BookSneeze Review - Stumbling Into Grace, by Lisa Harper

2011-12-14T18:09:00.000Z

Stumbling into Grace: confessions of a Sometimes Spiritually Clumsy Woman is a book I knew I'd be able to identify with as soon as I read the title. I manage to open my mouth only to change feet far too often, and I had a feeling this might be the story of someone similar. With chapter titles like "The Very Real Problem With Pantyhose", I was expecting this to be a good read.

What I was not expecting was for this to take me a month. Not because it was a difficult read, certainly not because it was boring, but because this is less "Confessions" and more "Bible Study and Life Application Guide." Every chapter comes with a series of questions for group discussion or personal study, Bible passages to read through, and the suggestion to make a journal entry starting with for example "So Jesus, today I've been thinking about , and..." Meatier spiritual food than I was expecting, but good nevertheless.

From the beginning "God doesn't just see us; He gazes adoringly at us. He doesn't simply notice us; He moves heaven and earth on our behalf" via quotes collected from others - Mark Twain's "Forgiveness is the fragrance the violet sheds on the heel that has crushed it." and Anne Lamott's "You can safely assume you've created God in your own image when it turns out that God hates all the same people you do," to the vindictively absurd "I think people who peddle pornography for a living should be forced to share cramped, windowless apartments with camels who have irritable bowel syndrome." This is a book full of one liners and longer passages I shall be re-reading.

Disclosure of Material Connection: I received this book free from the publisher through the BookSneeze®.com <http://BookSneeze®.com> book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own.

Tia

More from the palace

2011-12-12T20:46:00.000Z

"Curtsey while you're thinking what to say, it saves time."

Do I look smart enough?

You look fine, how about us?

Really? Really really a princess?

He looks good and strong, bet he could hoik me up in my chair when I need it.

Every Christmas Tree decorator needs a sword for those hard to reach branches.

He probably pruned it into shape too

It's hard work, all this tree decorating, may I help you to some chocolates?

I want Ham Sandwiches, please

Certainly dear.

Making Memories.

2011-12-06T21:09:00.004Z

They're changing Guard at ~~Buckingham Palace~~ Clarence House
tLP and Mog went down with ~~Alice~~ Mummy and Grannie and a pile of children from Helen HouseDo you think the ~~King~~ Duchess of Cornwall knows all about me?
Sure to dear, but it's time for teaSaid ~~Alice~~ Tia.

Better photos, proper photos, big fat "I have a camera so vast it takes three people to hold it" type photos in the links underneath.

Spot the Mog

Spot the Little Princess shaking hands with the proper Princess. "Is she really a Princess, Mummy? A real one?"

It isn't every day you get to help the future Queen of England decorate her Christmas Tree. Better photos on Grannie's camera, but Grannie's camera has gone off with Grannie to her next meal out, and I know people were waiting to see things here.

We drove. Something involving lots of police and flashy lights slowed us down considerably on Edgeware Road. I remain tremendously grateful that I get to visit London less than once a year, and that I don't live there. Huge admiration for those of you who do. And I say we drove; I drove to Helen House, two very nice Helen House volunteers drove us the rest of the way.

We arrived. Policemen climbed into our bus to check we were who we said we were, soldiers paraded up and down outside the bus, and eventually we were allowed through the gates, under the archway and into Clarence House.

We took our coats off and had them squirreled away into a cloakroom. I too would be tidy if I had a fully staffed cloakroom with several people just itching to take my coat and fold it for me every time I took it off.

Room number one; many press-type people, a regiment of London Cab Drivers bringing local Underprivileged Children, Sister Frances and Tom from Helen House, a smaller team of Royal staff, and a smaller but very present group of children.

Room two; a giant Christmas Tree, a real live toy soldier with a sword, and many decorations. Lots of opportunities to help HRH hang the decorations on the tree. It goes much more easily when one has a soldier with a sword to hang the highest decorations. And a super small boy to adjust the lower ones until they are just right.

Room number three; a beautiful dining room with Christmasly party foods. A Duchess, inviting tLP to partake of the chocolate stars. And a Little Princess insisting instead on steadily munching her way through the ham sandwiches. A very giggly Mog making the most of the atmosphere and definitely NOT kicking the Duchess, although she did kick her switch very nicely to say hello. Hello. Hello. Hello. And Hello. Ah, the limitations of a single switch.

And then back into the bus, and a cold drive home. Two girls full of Christmas food and Christmas spirit, with Buckingham Palace Gift Bags and immense chocolate pennies. More presents inside the bags which the girls were too tired to explore. And a long drive.

Back to Helen House carpark, into our bus, home, and into bed, slightly splashily after a long day out.

For Mum and I, the memory of tLP refusing Her Royal Highness' chocolate in favour of what I assume was Duchy Ham. Of Mog, helpless with giggles, grinning up at the living Toy Soldier standing behind her. For tLP, perhaps the memory of hanging a decoration onto the soldier's sword, and watching him hoist it high into the branches of the tree. Or having a flag fight with the toddler in the chair next to her. Or eating Smarties on the way home. And for Mog, lights. Smiles, faces, lots of admiration of her dress, and the chance to meet a real live Princess. For the Duchess? I don't know, but I hope she enjoyed our company.

Thanks to all who arranged it and especially for thinking to invite us.
Tia

Stanker

2011-11-30T20:06:00.003Z

Tonight, I am, once again, a STANK. I am stanky for opting for evening routines and bedtimes instead of unlimited Cbeebies, and Stanky for banning another repeat of Justin's House, and very very stanky for insisting that hands are more or less wiped with a flannel to at least attempt to remove some of the glitter paint used at Rainbows. And I am a stanker stanky stinkstank for wanting Mog to be able to enter the sitting room instead of being parked blocking the front door. But I am also apparently a lovely precious Mummy and MY Mummy and I need endless kisses.

Turbulent times. I'm not looking forwards to the teen years.

Happily, Mog finds this entertaining. Which is good, because she'd otherwise get lost in the battle. I am after all the biggest stank of all for taking "GO AWAY AND LEAVE ME ALONE" as a cue to go and get Mog sorted and into bed. How unreasonable of me.

It's been one of those afternoons. And I can't help thinking that actually, I probably am a bit of a stank, even if not necessarily a stanky stinkstank. Because most of the stankiness could have been avoided. tLP was expecting to come home to a sausage sandwich. I didn't make (or buy) bread, so she had sausage and potato instead. Change bad. Sweet potato even badder. If I'd moved a little faster on the way back from Rainbows, she wouldn't have run into the backs of my legs, and I wouldn't have shouted. If I hadn't been grumping about having just been run over, I would have been able to pre-warn tLP that her next move was to park her chair and hop into the bathroom. She needs warning of imminent lack of Cbeebies. Change, as I may have mentioned, bad.

And if I'd spent the day differently there would have been nicer things waiting for her. If I'd spent the hour she was at Rainbows differently, then at least evening drugs would have been drawn up, evening feeds set up properly, and the long distance Take your jumper off/YOU ARE A STANK cycle could have been swapped for a friendlier, more cooperative getting ready for bed closeness. But instead I mooched around and made "waiting in for deliveries" into an activity in itself rather than doing anything vaguely useful whilst waiting. And Mog had a music and bubbles day - pleasant for her, but perhaps a waste of a nice awake without attention-grabbing sibling day?

And now the girls are in bed, and the stankiness of the day was relieved somewhat by the snuggliness of the evening, and huge and vast sighs of relief all round at jobs done, routines over, and the gentle hum and whirr which passes for silence in this house. And I'm sitting here stewing over my own inner stankiness, frustrated that one of the deliveries didn't turn up, and annoyed that I think I've recycled one of the smaller deliveries without actually removing the delivered item from the packaging first. Is that stanky or just stupidity?

And I'm thinking that four years ago today we buried Goldy today. And we've tried to commemorate her life in various ways. Friends bought us a tree - it died. We bought some cats which linked to other parts of Goldy's life - and one of them died, and one of them is now not stanky but decidedly stumpy. And there wasn't even time or thought tonight to eat a Goldy Pizza. And I know she wouldn't care - if she wasn't eating it herself then there wasn't much point to it. My purple-headed pizza eater, we have for the past few years enjoyed troughing doughy slabs in her memory. I think perhaps forgetting her funeral pizza might count towards further stanky behaviour. It's also just possible that deciding to move her out of our house and into the supported living placement which ultimately caused her death is pretty stanking too.

So there you have it. A few of the reasons why I am in fact a Stanky stinkstank. Mog could, I am sure, add to the list. I'm reasonably certain she think's it's very stanky of me to object to her midnight singing. I think tLP is right. I am a stanky stinkstank, a stanker and a stank.

Which is precisely why I am so thankful for this

Stankfully yours,
Tia

Oh dear...

2011-11-30T13:31:00.000Z

Hello

2011-11-27T21:24:00.003Z

I had a biggish post planned here. Several, actually.

An update on Mog, who has had big seizures, big sleepiness, big misery and now much giggling and happiness.

An update on the Little Princess, who is alternately finding suggestions for ways to avoid future surgery (planned for January), finding things to look forwards to about having had the op, and attempting to convince me we need four baby kittens. We don't.

An update on Grolly, who is now combining her new role of lap cat with a revival of her role of intrepid leaf-hunter. This, in Autumn, is causing damp wet tired cat to flop on my chest at every available opportunity, having previously carpeted the kitchen floor with mouldy horse chestnut leaves. These leaves are particularly attractive at five o'clock in the morning, and each one is supposed to be welcomed with much praise and adulation. It isn't.

Mildly humorous descriptions of all too brief excursions into the real world had been planned, including a promise to avoid any shop larger than Budgens for the next five weeks, and a reasonably irate rant about the placement of Christmas products combined with "new and improved" queuing systems which have now made it virtually impossible for the girls to get to the tills in most shops in town. But it was more infuriating than entertaining, and the vitriol bored me. So we'll skip that one too.

Smug "aha look at me, I've finished my Christmas shopping (or most of it) before Advent Sunday" post has been delayed due to the non-availability of certain items, the omission of certain persons from the list of people to shop for, and the sudden determination of one small child that only a particular piece of electronic gadgetry will do. It's probably just as well - it would only have been smugly irritating.

A post on the wonders of salted-pretzel-crusted chocolate chip cookie bars was stymied by the discovery that they were in fact fairly disgusting and not worth the effort of blogging about. Salted Fudge Brownies needed to be made in order to redress the balance.

There was comedy value last weekend; a friend with her own two somewhat wonky girls came to visit. And we did for a longer-than-it-should-have-been moment each have one small child screeching in bed and one less small child screaming uncontrollably across our laps. Visiting each other is such fun. Sounds like hell from the outside; from the inside, well, at least we had company. Misery shared and all that. Children irritating, and all that too.

And this weekend I'd planned something mildly edifying to do with our church's 50th Birthday. A bit of gentle grumping about a mother who would volunteer the Guides to help serve coffee then promptly disappear on holiday for a week leaving yours truly. But no need to grump really as it turns out we were only a very minor cog in the whole coffee-and-cake wheel. A comment on the Bishop's Birthday sermon, but I haven't heard it yet as I was busy putting out tablecloths and pinning balloons onto screens. A trip down memory lane; not that I've been at church for the whole fifty years, but that felt a little boring too.

I'll settle for saying, Christchurch is fifty. Young enough for the founders to be a part of the celebrations. In a building old enough to count as a "proper" Anglican church (having originally been Tithe Barn for the medieval abbey dissolved by Henry 8th). Following a God who is old enough to see the several hundred years between the building of the barn and the commissioning of the church in the blink of an eye, and young enough to relate to all of us, however old we are.
Happy Birthday, and here's to the next fifty.

And there you have a potted summary of what would I am sure have been some truly insightful posts. Alternatively, there you have just sufficient to confirm the fact a summary was the most sensible option.

I'm off to look at kittens later this week. Don't tell the Little Princess.
Tia

Cat Attack

2011-11-21T17:02:00.000Z

Heat seeking furrpile collects another victim.
Tia

Creative Writing

2011-11-16T19:11:00.002Z

Tell me a story.

I writed it myself

All the way to the bottom of the page.
Do you like my beautiful writing?

Princess Proclamations

2011-11-12T20:06:00.002Z

She - "Hello my fatty Mummy!"
Me - "That's not a very nice thing to say."
She - "I know Mummy, I'm sorry, but..."
Me, thinking, "Ouch!"

Later,

She - "Mummy, Mog and I we was thinking. You are very beautiful and precious and lovely and I love you and can I please have some sweeties now please?"

Later still

"ARGH Mummy you are a STANK and a STANK and you are very stanky and stanky and GRRRRRRRRRRR and I hate you and this is a STANK and you are a stanky stanky stanky HEY MUMMY WHY are you turning off CBeebies?"

I like stank as an insult. It's her current favourite, and it has force. It's a great word to shout. And it has the joy of being a word which isn't going to bother me at all, rendering most of her current tantrums fairly reactionless. Apart from turning into the meany Mummy who will turn off the television that is.

Meanwhile Miss Mog decided today was a staying in bed day. A "take my duvet off and I'll go blue all over" kind of a day. Until I told her we needed to go and visit her friend in hospital. At which point her fingernails pinked up, her cheeks went from mauve to bright red, and her temperature picked up from 35 to 37. I'm reasonably sure she doesn't actually have that much control over it, but it was still impressive.

We got to hospital to find her friend fast asleep having had a rough night. So sat down quietly beside him. Little Princess was beautifully silent, voice hushed, finding quiet things to do. Mog decided he needed to wake up and shouted and kicked and sang and sang until he did eventually wake with a cry and a spasm and a sob. At which point she silenced herself until we sang him calm again and he settled into sleep. And then she decided he needed waking up again...we went for coffee and she giggled all the way down in the lift. Toad.

A more peaceful visit to him again, and we left him in the capable hands of one of his carers. Back into the bus and the Little Princess broke her silence. "Mummy, if you, if you, if you don't give me some chicken for my tea then I won't have any chicken for my tea." Very true, child. It's been that kind of a day.

Tia

Costing Care

2011-11-11T19:51:00.002Z

I wrote this a few years ago, a friend asked me to find it and so I'm posting it here so I don't lose it again.

I got up this morning, left my bed (£150), and walked down one flight of stairs. Had a shower (£100)and went in to my daughter.

I hoisted (£1000) my daughter out of her her bed (£800) using a sling (£100)into her wheelchair (£2000), then used the overhead hoist in the bathroom (£2000) to put her on the shower bench (£600) to give her a shower.She then sat on the toilet seat (£200). Put her in the lift (£3000) to go down to the sitting room. Most of these costs were borne by social services.

I had a bowl (49p) of cereal which I ate with a spoon (inherited). My daughter had a bowl (£8.95) of cereal which she ate with a spoon (£4.95), She wore a bib (£12) and used a special mat (£4). Added to her cereal were dietary supplements to increase fibre content (£2). These costs all come back to me.

Later on today I will get into the car and drive to school. For my daughter to sit in the car, I either need a £6000 conversion, a £20,000 new vehicle, a £2000 hoist for her and a £1000 hoist for the wheelchair, or as at present, I use my own back (free but longterm costs probably very high). Oh, I also use a special wheelchair (£500) as hers is too heavy. All costs met by me.

I am writing this at my computer using a keyboard (£8ish). I am sitting on a chair (£50). When my daughter uses the computer she needs a touchscreen (£300 minimum), and her specialist comfy armchair (£800). Special word processor with symbols and speech, (£200).

I might go for a bike ride later. My bike, value nothing, but for a decent bike, £200-£400?. My daughter's trike with additional straps and supports, £1000.

I will finish writing this and then stand up. For my daughter to stand up requires a standing frame, £3000. I might go for a walk. A walking frame for my daughter? £1000. We don't have one yet.

Fancy a ball game? Plastic ball, presently £1.29 at the corner shop. £12.95 for a musical ball so my daughter can hear where you are throwing it to.

Go to the cinema? Local one's inaccessible so that'll be an 80 mile round trip, thanks. Or go by myself, finding a specialist babysitter. Cheaper to wait and buy it on DVD.

A swim? That'll be entrance money for my daughter and 2 carers to lift her. Or £17.50 to hire the local hydrotherapy pool, provided no one else has already booked it.

Fly a kite? That'll be another £800 for the off-road wheelchair. Yes, she does have 3 wheelchairs, all for different purposes. If the baby stays she'll be getting a fourth; one to seat both of them. And the government only pays for one of those chairs. None of these chairs give her independent mobility; she'd need a powerchair (£2000) for that and we don't have it yet.

Put up a swingset in the garden? £60-200 in the catalogue. Wheelchair accessible? multiply that by ten. And forget about trying the ones in the local park instead...

Go on holiday? Can't fly cheapair; they (illegally) won't take the wheelchair. Regular air will charge more for the excess baggage.Wheelchair accessible cabins on ferry only sleep 2, so need
2 cabins for 4 of us, twice the price. Wheelchair accessible TravelInn only sleeps 2 (regular rooms up to 4) so need 2 rooms for 4 of us, twice the price. Wheelchair accessible accomodation in many hotels not available at lowest room rate, more cost. So we mainly camp instead.
Remember to allow costs for extra staff.

Public transport? Buses are inaccessible. Trains better (if you don't mind other passengers using wheelchair slot to store baggage) but local train station inaccessible so have to drive further away first and pay to park all day. Underground? Forget it. So realistically when car unavailable taxis are the only option. Providing you can find accessible ones that is. And are willing to educate the drivers on the importance of bothering with all the ties and clamps. And pay the waiting charge whilst they clamp the chair down.

Clothing. With 2 disabled children (even though one is a baby) I average 4 loads of washing per day for the 3 of us. So clothes wear out faster, as do sheets. as do the washing machine and the drier. 6 sets of school uniform to allow for accidents. Clothing gets stained faster, night splints tear holes in pyjamas. If baby has proposed op, she will need specially made/adapted clothing afterwards. Goldie chews sleeves and collars so they need replacing regularly. Shoes don't wear out at the bottom but splints wear holes at the back, and shoes built to accommodate splints are very hard to find and very expensive when you do find them. Goldie has 2 sets of clothing - one to accommodate her brace, one for wearing without it.

The NHS supply 5 pads (nappies) per day for my teenager. I have to pay for any extra (£1.20 per nappy) and also for the liners she uses to increase absorbency (5 per day at 20p each).

Food. Both kids on special diets meaning additional grocery bills. High Fibre diet for one of them, so brown rice 87p not tesco value rice 12p. Healthy eating baked beans 67p not value beans 7p. The other one dairy free so soya baby milk £8.30 not standard £5.20.

The baby can't cope with pram or buggy very well so special mini wheelchair being applied for. She's already collected 2 special seats, both secondhand on loan but eventually she'll be having
similar expenses to the older one in that respect.

Both girls have visual impairments. Lighting and other equipment to stimulate vision gets very costly, even if you go for the Argos version rather than the disability equipment catalogues.Toys need to stand up to having a teenager chew on them, and to being thrown around. Specialist play equipment (for stimulating the senses, fine motor control, switching, cause and effect, etc., is VERY expensive, baby toys are cheaper but less appropriate for a teenager (although since her favourite toy at present is the baby's teething ring I am not complaining).

Household equipment. Washing machine and drier as mentioned previously. I have worn out 4 hoovers (including one Dyson) in the last 4 years. I also have a steam cleaner and have had to replace most carpets with hard flooring. My daughter chews her way through cables regularly, so averages a new walkman every month (once a week in holidays), she dribbles in the mouthpiece of the telephone which then also needs regular replacements. Televisions and videos have been pulled to the floor; she smashed a £1000 touch monitor before we ever got to use it. She is not wantonly destructive, just sees things and tries to reach for them. Her bedroom needs regular redecoration as she picks the wallpaper off the walls (amongst other reasons).

Other costs? to make it possible for Goldie to enter our kitchen (and so learn about where food comes from and why I disappear regularly to fetch it) would mean completely rebuilding it I think - £5-10K. Not going to happen. Similarly finding storage space for all Y's equipment would mean building a garage somewhere (no space) - realistically to meet both girls' needs, we need to move house. As it is, for 12 weeks each year (school holidays) we lose any reasonable breathing space downstairs and thread our way through a minefield of equipment.

Costs to me - for specialist training not covered by the LA, £3000 per year. For wrist splints £50 per year. To pay various staff for non childcare related tasks freeing me to do the childcare, variable but can be up to £75 per week. Both girls have frequent medical appointments and hospital trips; I need to find and fund staff to care for the girl not in hospital. Entertainment expenses as we nearly always have to be the hosts - far too many houses are inaccessible.

My phones aren't coded; I don't have malicious teenagers hacking them. I do have many hours of daytime calls to specialists, to birth family living overseas, and to my own friends when trapped at home by sick children. And, it has been known for fosterchild to make phonecalls accidentally when I fail to notice them playing with the keys (friend had a 4 hour call to sweden courtesy of her disabled 4 year old).

My daughters can't say where they've left things, and between home and school many things are dropped, lost, broken, mislaid, munched by other pupils, chewed by Goldie, etc., I'd suggest that lost equipment is at least as costly. Goldie hasn't damaged neighbours' property but she defaces ours regularly, and wear and tear on paint and wood from angular wheelchair mounts up. And neighbouring children take delight in damaging our own property; ok so usually only destroying the washing line, throwing bottles if we go to the playground and stealing the odd bike, but again, it all adds up.

That's just the costs for us. They are relatively low at the moment; they will mount as baby I gets older and starts outgrowing baby supplies. They will mount again as her disability develops, and she will need carers with nursing skills.

I wrote that when miss Mog was a baby. I hadn't seen it for a few years; it is interesting to see what has and has not changed. Clearly, the biggest difference is that we no longer have Goldie chewing and finger painting her way through toys and walls and bedding. I'm not sure her absence is anything to be happy about though. We never did get her a walking frame.

Mog, no longer a baby, is no longer eating orally. Not that she ever did, really. She now has a special medical formula at £18 a tin, 4 tins a week. Not at my cost, thankfully. However, an increasing number of my friends are moving over to providing their tube fed children with a blended diet - real food whizzed finely enough to pass through the gastrostomy tubing. And I'm considering it. However, the blender most families say is necessary in order to guarantee no lumps and bumps is £410. Which, compared to the £10 stick blender I use to make soup is a fairly hefty investment.

When I wrote that, Mog must have been very new. No wheelchair, so she was less than a year old (in fact, WySoy infant milk, so she was much less than a year old - she switched to a specialist formula fairly shortly after that). She now has three wheelchairs. One fabulous NHS wheelchair service provided one (several thousand pounds) which tilts, reclines, bounces with her spasm and is moulded to her body to be an exact and comfortable fit. One private buggy which lies flat for when she can't sit up(£1,000, plus £500 for the mouldable liner), and as a back up for times when her wheelchair is in the workshop. And one offroad wheelchair for beaches, mudslides and snow (£700). She has also had, and discarded, a starter type power chair BIME Buggy (£400 from Ebay very secondhand), a Trike (£1000), and a whole collection of different double buggies either to sit with Goldie or to try and work with Little Princess.

She's had a Leckey Advance chair, a Jenx Bee, a Special Tomato MPS, and a Spa armchair. The first three from Social Services, reissued to other children once she had outgrown them. The last a private purchase from a friend whose child had outgrown it. A Monkey Standing frame on loan from the physios, and various assorted sleep systems designed to keep her body vaguely symmetrical overnight (they didn't work).

We did move house a year or so after I wrote the piece above. These days, instead of walking down the stairs (with Mog on my shoulder), I walk around the corner in my ground floor flat. I've upgraded my bed and now have the world's comfiest memory foam mattress. It still cost a fraction of the £3000 Mog's enclosed, ultra safe, profiling bed with super soft and comfy pressure relieving mattress . Thankfully not a cost to me directly, but we all pay for the NHS. I switch off her SATs monitor (£Lots, don't want to think about it, except it's vastly superior to the £800 I spent on our back up more portable one so I'm thinking it's probably vastly more expensive too), and switch off her CPAP (again, no idea of cost except it can't be cheap because we've now been waiting two years for her to have her own machine rather than an old one on loan which we pray never breaks down because no one will be responsible for repairing it).

I now hoist (£1000) Mog from her bed to her wheelchair, making use of the wider folding doors courtesy of our latest Disabled Facilities Grant (total grant £8,000 I think, including a new wider driveway and more functional ramp to the front door).

We have carers every morning but Saturdays, and if they are hoisting Mog into her chair then I am hoisting the Little Princess (or should be, and do some days, I promise) out of her bed (which is the same £800 bed Goldie used to sleep in) and into her £10,400 wheelchair (private purchase topping up a £2,700 voucher from the Wheelchair Service). Having first switched off her ventilator, humidifier and feed pump, and detached her from various tubes and drainage bags. More costs for the NHS.

The heating is set at a cosy 23 degrees C. Partly that's due to the fact that the boiler switches off when I turn it down, partly it's due to the fact that Mog now has difficulty regulating her own body temperature and so it is important that the temperature of the house stays consistently warm. Either way, it's expensive with rising costs of gas. And electricity costs with both girls' medical equipment running day and night aren't the cheapest either.

Mog no longer gets her pad changed first thing in the morning as a matter of course; if she has been dry overnight then the overnight pad gets put back on - our generous allocation of five per day has recently been cut to four. That's just about manageable for Mog but hopeless for the Little Princess who was receiving more than the standard allocation of five before the cuts.

Our car was replaced with a £6,000 minibus, with just about enough tracking to clamp down two wheelchairs. We've since outgrown that minibus and now drive a Mercedes Sprinter with tracking for three chairs, or enough space for both girls and all the equipment we need whenever we go away overnight. £10,000, six years old. Reasonably efficient fuel costs but still significantly more expensive to run than the small family car (or the Little Princess' longed for Mini) which would be all we needed if we three came without the equipment.

The Little Princess has her own private collection of wheelchairs. She shares Mog's offroader; if it's too snowy for tLP's powerchair it's too snowy for Mog to be outside. The Wheelchair Service provide her with a basic folding manual wheelchair. She's just outgrown her £3,000 ultra lightweight Minny wheelchair; we're now looking around to see what might be the next best model for her. But will hold off until she's had all her surgeries and see what mobility she has left once her spine has been fused. Then there's the wheeled shower chair, and her wheeled standing frame (£3,000, private purchase).

On through the day, and most things haven't changed. tLP now has similar nutritional needs to Goldie, for similar reasons, and so please adjust the food prices to reflect today's figures.

Improvements to public transport - our buses are now all wheelchair accessible. Which is excellent, except they only have space for one wheelchair on each bus. So I can't take both girls on public transport unless I'm prepared to have tLP on my shoulders all day. Curiously enough, I'm not. Cheapair do now take wheelchairs; however they charge every passenger a wheelchair tax thus making actual wheelchair users even more unpopular with the average passenger than they were before.

Goldie's not here to paint the walls and pick at the wallpaper. But tLP's ~~tank~~ powerchair does an excellent job of carrying on her good works. Walls, doorframes and radiators have all taken a serious beating in the past few months. We have an iPAd with a broken screen (dropped onto the hard floor we have in place of carpets to cope with muddy wheels) and an iPhone with a broken screen (run over by a wheelchair once too often), and anything left on the floor will be flattened or shattered, depending on flexibility.

We do still go camping; we don't now camp without carers. We do still holiday with friends and family rather than always taking hired staff with us, but the time is coming when we won't be able to do that.

I see I predicted that Mog would need staff with nursing skills - considering I wrote that before she had her first surgery even, I'm impressed with my ability to see into our future.

I'm not writing this because we need money. We don't. I have adoption allowances, the girls receive Disability Living Allowances and I get a Carer's Allowance on top. These are all costs we can meet. But, there are many many families who have these costs and don't have the adoption allowances to meet them. There are families who have adopted and fostered children since infancy who are now discovering that adult care costs even more and that their income will be halved. And this despite knowing how many thousands of pounds residential care would cost, and how much the families are saving the NHS and SS by continuing to provide the bulk of the care themselves. And there are people under the impression that in hard times, the welfare state should shrink and we should all tighten our belts. I'll tighten my belt if I have to, of course I will. But the additional costs of living with disabilities don't just disappear, however hard we try. At the moment, I can cover it. But friends can't, and that's scary. And as resources (e.g. pads) provided by statutory authorities get scarce, the families are forced to provide more themselves. Without actually having any more ability to do so.

As I was updating this list, a friend was sending me suggestions for other increased costs. I think I've included some, I know I've forgotten more. So, friend (and other friends, and anyone else), do please feel free to add in extras in the comments.

Tia

My Grannie

2011-11-02T21:06:00.000Z

My Grannie is the youngest of four children, from a nice family, and claims that growing up "we were the lowest of the low...we only had two live-in girls." And a Nanny, and a Governess, and the ubiquitous Groom who was also the handyman and milked the cows. My Grannie, as a girl, went into Boston in the Governess Cart. But can't remember what Groom did with the pony once they got there.

My Grannie went to a boarding school, and was taught that when she met boys, including relatives, from the neighbouring boy's boarding school, she should "Smile, Bow, and Pass On." It is possible she was not always a model pupil; at one point the head girls of the respective houses had a meeting to discuss which house could best cope with her.

My Grannie was Not Allowed to Stay In London during The War, despite the fact her older sister was running a tea shop, then a worker's canteen, before becoming the cook for the nursing home which would later become Burrswood when it eventually moved out of London.

Instead, my Grannie was a VAD working on a TB ward in Boston Hospital, before Joining Up, and eventually becoming a Filter Officer.

My Grannie got lost driving home in The Blackout, and called the operator from a telephone box, to ask her where she was. Her Mother was not amused, especially when she had to spend the night in a pub rather than drive any further through rural Lincolnshire in the dark.

And then my Grannie married, and had a boy, two girls, and a boy again. And her husband could not cook - one day she left him instructions when she had to go into hospital, and he complained the mashed potatoes were a little runny - the instructions had not included "drain before mashing."

Scattered Cinefilm recorded onto DVD shows snippets of married life. A rowing boat on a honeymoon in Tenby. Four children and a giant rubber inflatable duck on a beach in Cornwall. Billing Aquadrome. Photos of boys in boarding school, girls in Guide uniforms. Knees and elbows and woollen swimming costumes. A copy of Heidi Grows Up and Heidi's Children, inscribed "to the dear girlies." Snapshots into my Mother's childhood, my Grannie's parenthood and early widowhood.

My Grannie looked after my brother and I for a month when we were little, and I went to the village school, where I had to share an exercise book with another girl in the class. She wrote in the front with her right hand, and I wrote in the back with my left. In the afternoons, we walked to a flooded field by the mill, and made rafts out of bits of old wood. They sank. Then we walked home via the village shop for ice lollies.

My Grannie came to stay with us when I was ill, and my baby brother was newborn. She made me wake up and have a wash before the doctor came to visit. But she also made biscuits and kept me company. I showed her how to fill the baby bath from the shower. My Grannie used to make the most disgusting hot lemon and honey drinks for us whenever we had colds. My Mother let me pour them down the sink.

My Grannie kept bees, and eating the honeycombs was an extra special treat. The honey, Rapeseed honey, was so firmly set you needed a chisel to prize it out of the jar. But spinning the centrifuge to separate it from the combs was very nearly worth the risk of being stung whenever you went out into the back garden.

My Grannie's big sister taught me how to do a backwards roll at my baby brother's Christening. And my Grannie's next biggest sister taught me how to bake bread when she visited us the year we lived in California. And my Grannie stayed awake all night, the time they visited us in California, poking her sister with her walking stick to stop her snoring and waking the family. Who happily slept through it anyway.

My Grannie took up the 'Cello again when her fingers started getting a bit stiff for the piano.

My Grannie came on holiday with us last week, and she fell over, and it took two of us to get her back on her feet. And I wonder who would have picked her up if she had been at home. My Grannie stood up a bit fast, and impaled her leg on her knitting needle. And it missed the vein, and was only a shallow cut, but I wonder who would have bandaged it if we hadn't been there.

My Grannie has a new wheelchair, and it has brakes which don't stay on by themselves. So my Grannie had an interesting trip out of the carpark and across the field at Scolton Manor when we failed to park her next to a tree. And as my girls and I looked at the displays, my Grannie found something to tell about each of them. Like the fact that not until she was at college did she ever have to clean her own shoes - leave them out by the boiler overnight and Groom would have them done by morning, despite not actually living in but having a house in the village. Like watching her Mother separating cream in the settling room. Like the team of threshers who came visiting each harvest. And the time a small legion of army officers comandeered the front of the house and the telephone line, explaining the next day that they had been expecting the Invasion of Britain that night. Churning butter, and going to visit the Land Army girls with her Mother, and consoling one girl who "Didn't like them lions" - a circus billetted on one farm for the duration.

My Grannie used to eat great slices of Bread and Dripping after scrubbing down the walls in Theatre, and then moving all the TB patients outside for the day. And last week, my Grannie claimed she shouldn't eat another thing, and then snuck extra spoonsful of sugar into her coffee when she thought we didn't notice. And said she wasn't hungry, and then ate all the ginger biscuits.

My Grannie was taught never to ask to be passed an item at the table, but instead to offer the item to someone else, in an attempt to remind that person to offer it to her. And my Grannie was taught to "Bend at the hips, not at the waist" when drinking soup from a spoon. But now my Grannie is getting smaller every day, and can reach the soup bowl without lifting the spoon at all. And is permanently bent somewhere between the waist and the neck, in a perfect position to catch sneaky cat naps during lulls in the conversation.

My Grannie won at Scrabble. And got all seven letters out on the very first go. But wouldn't let me use hordes or thews, despite allowing jo and romeos. And my Grannie spent lots of time bickering with my daughter over the rules to Happy Families, and reading sad stories about toys abandoned on Boxing Day to her, and watching the tide come in and go out and inventing stories about the fishing boats with her. And my Grannie and my Little Princess both spent large parts of the week standing (or sitting) in doorways, not wanting to miss out on anything happening, but making it impossible for anyone else to make anything happen.

And I try to imagine a life where four or five servants was just barely the minimum acceptable level of staff. And where my Grannie's mother had to remake my Grannie's outgrown clothes into clothes for herself, in order to be able to afford to buy clothes for my Grannie - but where it was still necessary to keep on the maids and Groom. Where Groom was paid a weekly amount which was significantly less than the weekly cost of the boarding schools the children attended, and yet managed to create a living for himself and his sisters out of it.

And I cannot imagine how it was, to be working as a Filter Officer, to get to know the pilots doing their ground duty, and then to know that they were flying the planes which were not being plotted and filtered during the next shift.

And I don't know how it must have been, to be caring for three children under two, with a back which had been broken by a fall from a horse, and having to do all the work herself having grown up with significant numbers of staff helping out.

And it is worlds away from living in a bungalow, and driving a mobility scooter. From seeing Grandchildren and Great Grandchildren on Skype. My Grannie had a Box Brownie, and did trick photography by not advancing the film between shots. And now she watches her Great Granddaughter clicking away on a digital camera, reviewing and deleting the pictures instantly.

My Grannie was born at the end of the Great War, the War to End All Wars, and then went to work in the next one. In the great cold winter, she went ice skating with her sisters at another local farm. Cinefilm shows scattered and scratchy coverage of Grannie and my Great Aunt jumping daintily over branches and weaving their way along the river. And now she watches Wimbledon at home and wants digital television so she can switch views to suit herself.

And I can't help thinking it's no wonder she calls staff in shops "you, boy!" and comes out with some excruciatingly awkward phrases every so often, and considers that she has the right to approve or disapprove of her adult daughters' apparel, and dispose of their time in the way she attempts to do. I wonder what it is like, to watch your adult children not just grow up and become parents, and then grandparents, but also to watch them retire and begin to grow old themselves.

My Grannie is pretty ordinarily extraordinary. I wonder if she feels like living history, or considers that many museum pieces are younger than she is? And I wonder how much longer she will be able to keep up with her bungalow, and how much longer she will want to? I wonder if she knows how exasperating she can be, and whether old age earns the right to drive the younger generations mad, or whether that is an inevitable part of the generation gap? But I look back and see how the world has changed beyond all recognition in her lifetime, and I look at my six year old, and wonder if there will be similar leaps in technology, in lifestyles, in everything - and what that will look like if so.

Most of all though, my Grannie is my Grannie. She is my Grannie who used to like to have us come to stay at half term. She is the Grannie who would borrow her friend's dogs, and let us take them for walks around Wicksteed Park. She's the Grannie who had endless books and ancient games in the middle bedroom and the garage. She's my Croquet Grannie and the Grannie who had the caravan in the garden where we Grandchildren could camp out on visits. The Grannie who made the best ever Lemon 'Fridge Cake, the Grannie who seasoned her vegetarian pies with pheasant stock because they didn't taste of anything without it, the Grannie who has threatened to shoot my Friend should I ever take up smoking (although that sneaky Cinefilm revealed that she did infact smoke herself as a much younger woman), the Grannie who knitted my beautiful Willow Pattern Plate jumper, and who is now knitting for her Great Grandchildren.

She's My Grannie.

Proclamation

2011-11-01T19:46:00.002Z

Dear Mog,

You are going to Helen House tomorrow for respite. It is not necessary for you to become ill in order to go. Pleased as I am that you enjoy it there, I would prefer it if you could cease and desist from the sudden lurgies.

I tidied today. Your efforts to redecorate were not appreciated.
Whilst we're at it, how can you sound that rattly, be in that much distress, but not give me any decent goo to slurp? And how can you go from outstandingly bouncy at Brownies to cough rattle and roll in the 2 minute walk home? We have central heating, you don't need to become your own furnace either. And if this is going to be a repeat of Sunday, could you either make as quick a recovery with no recurrence or else give us a clue as to what's going on tomorrow when we get to see a doctor?

Dear Little Princess. This is not a competition. Screaming until you vomit because you want me to stop Mog's nebuliser is unnecessary. Oh, and how come you can go a week on holiday with no leaks, but have three separate leaks last night? Neither this nor the puking is proper princessly behaviour. And the choking on a lump of cheese earlier was unappreciated - if you want me to swing you upside down please just ask next time.

Which brings me to my proclamation. You are both going into Helen House tomorrow. This is for respite, not for illness. I am going away. You both need to be well. So just stop it now.

Also; I am tired. And did I mention that I'm going away, for the first time in I think four years? Sickness is banned.
Tia

Playing with photos

2011-10-31T14:31:00.004Z

It's Monday. The girls are back at school, Great Grannie is back at home, and I have the house to myself and no special agenda beyond making bread for 25 before we go to Helen House. And I have 130 photos from our week away.

I have been playing.

And, after several hours of tweaking, I have finally beaten the printer into submission, forced it to talk properly to the computer, and persuaded the pair of them not to auto-crop my photos into the shapes they wanted to make them.

Hurray for quiet days.

Thinking though of friends whose days are not so quiet at the moment; ill health in themselves, their children, their parents, complicated legal stuff around the world and closer to home, and I wish I could send them all to a quietly empty autumnal coastline for some rest and refreshment.

Tia

Now and Then

2011-10-29T20:53:00.004+01:00

Then
And now
Now
And then
Then
And now
Then
And now
Tia

My kind of secondhand bookshop

2011-10-26T12:21:00.000+01:00

Small problem using this phone!

2011-10-26T12:20:00.000+01:00

Monday Morning Musings

2011-10-24T19:13:00.000+01:00

"Owie owie owie, Mummy, owie all over my body." At just past midnight, and again at half past one. Bing ding bong beepbeep at just after five from the humidifier, and then the ultimate insult "Mummy, this is too loud I want to sleep alone." Me too, and so far the noise has all been down to you,little one.

Silence.

And then seven o'clock, and "is it morningtime yet Mummy?" Incoherent snarl. And she lies back and chats to herself instead.

"Monday, Tuesday, Wednesday, Friday. Monday, Tuesday, Wednesday, Friday. Monday, Tuesday, Wednesday, Friday." On and on. Cunning torture, or genuine error? Either way, it is effective. THURSDAY, I find myself growling, and I can't pretend to be asleep any more, and the day proper begins.

It does get better.

A full day of rain but some lovely cowl, a nice Manor, a fine collection of flat irons and many memories from Great Grannie. "We were to bottom of the scale really; we only had two live-in maids and Groom." I suggest that possibly the live-in maids and Groom were lower in the social scale, and the blank look reminds me that such people were not on the scale at all a century or so ago.

Groom, who also did the milking, drove the Governess Cart, polished all the shoes and saw to the boiler, was paid £1.13.03 a week, on which he supported his two maiden sisters. I can't help but wonder how this compared to the school fees for Malvern.

These are memories worth recording somewhere.

And I realise it's now Monday evening, but it's been that kind of a day. And now we can't eat until we solve the last crossword clue "Cotton Twill" A_I__. Any ideas? I'm hungry.

Tia

View from my sitting room window

2011-10-23T18:44:00.000+01:00

Ah Tenby, I love you.
Tia

Shiny!

2011-10-20T19:56:00.004+01:00

Eight years ago, we moved house. We had a very simple plan; pack up, drive across town, unpack, be reasonably sorted, then take Mog to Helen House for a couple of nights, get Goldie to hospital for a minor op, and have both girls out of the house so I could get things straight.

Things didn't quite go to plan. The mortgage money didn't reach the relevant bank accounts until late afternoon, and without it, the estate agents weren't going to hand over any kind of key. Eventually we had the key, and I had just long enough to tell assorted people which bedroom belonged to which of us and remind people that under no circumstances were the removal men to be allowed to assemble Goldie's bed (complicated profiling hospital bed, we had a spare bed for her to sleep on that night, and the medical company were coming in the morning to put it back together again), before I had to run with Mog and introduce her to the hospice staff.

Mog duly settled, I left her in good hands and returned home to find that everyone had interpreted "do not assemble the bed" to mean "we'll do Tia a favour and assemble the bed", incorrectly and invalidating the service contract on it. But I'm not bitter. They'd also helpfully unpacked the kitchen, sorted beds and bedding for everyone for the night and beyond, begun to unpack all the rest of the boxes but ensured we had a wheelchair spot all the way through the house. Organised chaos.

Friend went home, family went home, and Goldie and I settled down for the night. In the morning, we escaped the house just as the workmen arrived to dig up the drive and build a ramp to the front door. Mog being reasonably happy at the hospice (it was her first ever visit), Goldie and I went off to hospital. Where we sat. And waited. And sat around some more. And waited some more. And eventually they found a bed which did have bed sides, and someone came to clerk us in, and then she went down for her surgery.

It occurred to me then that my plan may not have been entirely sensible - rather than having time and space to unpack without the distractions of the girls, I had in fact committed myself to being at home to unpack and sort workmen, being in hospital with Goldie, and being at the hospice with Mog. Not my finest plan.

But still, we survived, and we all came home. And then the fun really began. Goldie's minor op turned into three months on bedrest. And so she lay in her bed, giggling, as the hoist engineers came to fit a hoist in her bedroom. And she giggled for the whole eight hours it took to drill giant holes in concrete blocks to fix the hoist to the ceiling, finding the whole thing hugely entertaining as they attempted to barricade her off with her wardrobe, protecting her bed and her television from the worst of the dust, and shuffling her around the room as they attempted to find the best spots for the hoist.

And slowly, we unpacked. We moved from a three storey Victorian terrace to a '60's flat. We swapped huge bedrooms for more useable living space. So nothing quite fitted where it was intended to go. And the spare boxes ended up in the corner of my bedroom, and in the cupboard in Goldie's room. And the house began to feel reasonably assembled.

Fast forwards a few years, and Little Princess is moving in. At 22 months, she moved with her entire life to date in cardboard and plastic boxes. And it all got wedged into the bedroom we were now sharing, in the cupboard in Goldie's room, and in odd corners wherever we could find the space.

Fast forwards again, and Goldie has moved out. We are having all our floors taken up, covered in latex-free screeding, and then latex-free flooring being laid on top. The house needs packing into boxes, we need to move out, and when we move back in again, Little Princess moves into her own room. We unpack the necessaries, and the "might be useful one days" get stuffed into the corner of my room, and the cupboard in what was Goldie's room and now belongs to the Little Princess.

A few years later, and I am in the process of super-cleaning the house. I have a system, it's actually very effective, especially for the first few rooms. As I sort, everything which does not belong in the room I'm sorting gets put in the room where it should be. If that's a room which is already sorted, I put it away, otherwise it gets dumped on the floor/windowsill/bed/wherever. The first room gets sorted in 5 minutes which is a nice motivator to carry on. Second room takes a little longer, as anything belonging in the first room needs putting away. Third room takes longer yet, and so on. My bedroom, as the worst room in the house, I tend to leave until last.

And then just as I have finished the rest of the house, an emergency foster placement has me setting up a cotbed in my room for the Wahooligan. He stays with us for just a few weeks; the cotbed remains a fixture for the next three years. It becomes my wardrobe, my actual wardrobe being increasingly inaccessible due to the ever-increasing tidal wave of general cruddage, seeping slowly across the floor and leaving me with stepping stones from door to bed. Boxes are stacked, 3 foot high, in front of my drawers, and loose papers and other stuff heaped up and around the chair and onto the wardrobe.

Redecorating the bathroom left a large builder's trug full of bathroom equipment filling the gap between cotbed and my own bed, and more clutter found its natural home under the cot.

Enter Grolly. We are going away next week. She can't come with us. She can't go to our regular cattery as the vet thinks she isn't ready for her boosters yet. I'm not willing to put her in a cattery which accepts cats without vaccinations. And she is so clingy post shed escapade that I don't think she will cope with just a daily visit to feed and water.

And so a friend willing to come and house sit for the week we are away is hugely appreciated. Except that, unlike an odd night here and there, it feels a bit mean to say "Hi, thank you for rescuing us, please camp out on the sofabed." So sorting out the room, at least enough that it was possible to reach the bed without jumping, open the door properly, and have some floor space to put a bag down suddenly became a priority.

Several hours in, it occurred to me that I should have taken a before picture to ~~scare me into never letting it get this bad again~~ record for posterity. Not wishing to go back to utter chaos, I took this mid sort pic. Actually seeing the armrests on the chair mean the big pile-o-stuff has been reduced by several feet.
Two days in I was seriously convinced this would never ever get done.

But, today, after 5 bags have gone to the Helen and Douglas House shop, with another 3 bags waiting to go, with four boxes ready for the tip, a recycling bin filled 8 days before it's due to be collected, a rubbish bin also full but due to go out tomorrow, and a small forest's worth of reasonably confidential documents shredded (and, worryingly, just a small handful of documents actually worth keeping), I can see my floor.
And it is shiny!It isn't perfect. But oo look at all that floorspace! Add that to the three wheelchairs and two specialist armchairs Demand took off my hands earlier this month, the various boxes of "use it once a year" stuff which has made it back to the garage, the major clearing out of the cupboard in the Little Princess' bedroom, and I am pleased to say that not only is the last house-move box finally unpacked, but that the house itself appears to have grown by several feet in each direction.

And the best bit? We're going away for a week, home for a few days then away again, so by my reckoning, I can't possibly mess it all back up again until at least mid-November!

Tia

Ruby Wedding, the remix

2011-10-16T20:08:00.005+01:00

Aimer, ce n'est pas se regarder l'un l'autre, c'est regarder ensemble dans la même direction
This quotation from Saint Exupéry has been hanging on my parents' kitchen wall since we were children.

Family legend has it that when my Father wrote to his brother, asking him to be best man, my uncle wrote back accepting but on condition Dad was his best man the week before. I wonder what the rest of the family thought, spending two weekends in a row attending twin brothers' weddings in different family-of-the-bride dependent locations? Perhaps it's best left consigned to history - big year for my Grandparents, certainly, and I suspect they were thankful to be parents of the grooms and not the brides!So a wedding happened, and a marriage began. And several children, much travelling (anyone else camped (under canvas) for three months straight from California to Canada, down to Mexico and back again? With three children under 11?), lots of growing older and sharing the same vision, and

seems appropriate really.

Forty Years on, and the two Ruby Wedding Celebrations were spread out a little farther (to allow for a rather jolly trip (not by me) to Zanzibar in the middle). My Uncle and Aunt's party in August, and Mum and Dad's yesterday.Lots of preparation involved in turning the church hall into something suitably Rubily festive, without hiding the Guide and Scout noticeboards since Guiding and Scouting is how Mum and Dad met, and since Dad's old Scout Leaders were able to attend. Importing the youngest and newest Guiders as washer-uppers and drinks-servers seemed quite appropriate too, really.

Friends and family filled the hall
Four generations , plus friends including some not seen since the wedding. Warmth and laughter and conversation, scones and sausage rolls and sleeping babies.
Toddlers on trikes
and an attempt to summarize a marriage in 50 photos or less.
And then toasts, and more friends whipping through the clearing up in record timing, and more food and home with two tired grandchildren, knowing that the other Beales Junior were either present in Zanzibar or are preparing for Grandparent invasion in Scotland next month. We thought of you all. We're thinking of you still actually; wishing you were here to help plough through the piles of mini pizzas and chocolate brownies, and wondering if you have any ideas to use up champagne which was poured out and then not drunk.

Big thanks to everyone who helped out, and bigger thanks to Mum and Dad, for making the decision to get married and to go on being married; for putting up with everything we put you through and to keep on being our parents anyway; for giving us a stable loving home, and giving your children and now your grandchildren an example of what it takes to grow a good marriage.

Happy Anniversary! And I'm so pleased that finally there were no other family Graduations, Weddings, Dedications or other events to get in the way of actually managing to celebrate with you.

Much love,
Tania

ps - Dad - we really did have a party for Grandma and Grandad - anyone else in the family care to prove me right on this?

Artwork

2011-10-13T21:39:00.000+01:00

This picture belongs to the blog entry immediately below it. But either my computer or else the entire world is playing up, and I can't post it there. So here it is; enjoy.

Tia

Sweetness

2011-10-13T20:29:00.002+01:00

Sweetness is:

a small child, waking up every morning and calling out "You are my favourite person in the whole wide world and in the universe."
the same small person, wanting something; "Axcuse me, if you possibly, could I have maybe a piece of paper?" Or a wipe, a pencil, a cuddle.
half-stirring, as I give her her late night meds "Aahhhhh. MY Mummy...." and drifting off gently again.
or at midnight "I sorry I waking you, Mummy, but please may I have a turn over? I am not comfy in my hips."

And she is mine. Discharged from hospital when she was as well as the medics ever thought she would be, and placed with foster carers who loved her and kept her safe as the search for a permanent family went on. And with a long and complicated set of gloomy prognoses she waited, and I waited, and the courts and social services did their bits, and then finally she was mine, and I was hers.

And now every morning I have a daughter who needs "ten kisses" to store on her fingers in case she needs them during the school day. And I have a daughter who hugs the bus escort and thanks her for looking after her on the drive home. And I have a daughter who makes friends with everyone she sees, or at least everyone who will slow down long enough to respond to her hello. A girl who brings me dandelions and pages and pages of illustrated stories only she can tell me. A child who loves to sneak up quietly, and rest her head on my arm, or slide her hand inside my cardigan and hold on gently; she has a hundred different ways to snuggle in.

And she's here through adoption. And it did take a while - she was two years and nine months when the adoption order was heard in court. Twenty two months when she moved in with me. Eighteen months when she first visited our house, fifteen months when I first met her, and nine months when I first heard of her existence.

With hindsight, some of those delays should have been avoidable. Christmas slowed things down for a month. There were two separate panel meetings, one to approve me as an adopter, and one to approve me as her adopter. Three months could have been saved if they had both happened at the same time. August and summer holidays slowed things down again.

But, she came when the time was right. If she'd come earlier, I would not have been in a position to foster a child who has since become quite special to us. She would not have had her familiar foster carers to support her through adjusting to overnight non-invasive ventilation, but would have had to have learnt to cope with that whilst also learning to live without them. I would have had a year or more juggling three extremely complex children, rather than just a few months. Social Workers would not have had time to sufficiently examine other prospective parents. Sometimes, adoption needs to be slow.

And four years on (not that today is any kind of anniversary; just that adoption has been in the news, on Women's Hour, on You and Yours, and therefore on my mind these past few days), the delays don't matter a bit. True, I missed her baby days; I didn't get to see her first birthday, her first Christmas, her first taste of real food. But I got her first drink, her first non-pureed food, her first words, her first reading and writing. And I get all those things I listed at the top of the page too. They're mine, because she is mine and I am hers.

It isn't easy, it isn't perfect, and adoption doesn't create a new birth family. There are issues to do with adoption, as any adoptive family knows. There's loss, such a lot of loss. My daughter had just one extremely loving and experienced set of foster carers from when she left hospital until she came to me. But that means that on that day when I finally picked her up and drove off with her, knowing I didn't have to bring her back again, she lost her second set of parents. She loves me, I love her, but that loss takes its toll. The fear that I might disappear on her one day is always there, however deep down it gets buried in the good times. And there are questions. Some I can answer, some I can't. All difficult.

But despite all that (and the tantrums, and the challenges, the crayon on my walls and pencil on my furniture, the destruction which comes with driving a tank), the Little Princess is my Little Princess. And that makes me one of the most favoured ladies in the land. Teams of people weighed things up and decided I was the Little Princesses best option. And they handed her over, and let me get on with it.

The statistics say adoption levels are reaching new lows here. I know that, to an extent, Special Guardianship is taking over. And that's all good too - my Mog is mine through Special Guardianship and it is absolutely right for all of us involved. But if you're considering adoption, then why not investigate it further? You can't have the Little Princess; she's mine, I found her first. But take a look here at some of the other children in the country waiting for new families. You don't need to be married (I'm not), you don't need to own your own home (I didn't back when my first children came), you don't need to be employed or earning vast sums of money (financial support can be made available if you are adopting a "harder to place" child). Do you have the time, space, or energy to find a /Little Prince or Princess of your own? My life is immeasurably deeper for it.

Tia

Spot the difference

2011-10-09T19:07:00.000+01:00

Really?
Tia

Finding a place in the world for a Little Princess

2011-10-04T21:15:00.004+01:00

I was on the computer when the Little Princess and Mog came home from school this afternoon. the Little Princess graciously allowed me to finish reading before demanding CBeebies. Which is good, as I was scrolling back through this post over at the Henn House.

tLP was fascinated with little E-F. She has Spina Bifida, just like me. She has a wheelchair, just like me. She has jelly on her back (ultrasound), just like me. She has to go to hospital, and wait, and sit, and see doctors, just like me. She has catheters, just like me. She has to have operations sometimes, just like me.

And then we clicked to the previous post. Such beautiful photography. But what are those? Why can I not stand up like that? My splints are stupid and I actually do hate them. Meltdown.

There's only a couple of inches in it. If her lesion had been a couple of inches lower, chances are she'd be able to walk, like every other child and adult she knows with Spina Bifida. Then again, if her lesion had been a couple of inches higher, she'd probably be either dead or totally ventilator dependent and without the use of her arms. But that's small compensation when you're six.

tLP knows she has Spina Bifida. And she knows that's why her legs don't work. And why she gets to spend so much of her life at hospital, at appointments, with therapists. It's why she needs catheters, and why she can't balance well enough to do them herself. It's why she needs spinal surgery, and it's why she can't have the operation which would fix things up the most effectively, and will have to go for a more complicated and less successful patch up job instead.*

Most of the time, she thinks of herself as pretty able (or possibly, pretty and able). At school, at Godzone and at Rainbows she has friends who include her just as she is, and she would identify herself far more with her able-bodied friends than with Mog and Mog's peers. She's used to people envying her wheelchair - and only gets upset when small boys attempt to take over steering or button pressing. If she's in her manual chair she'll push it herself or gladly commandeer a friend to push it for her - and so far, her friends will happily line up to give her a boost when needed.

And then she sees someone who might really be "just like me", and realises they can do that bit more. And I know she doesn't see the fact that for E-F, walking isn't the simple ballet her classmates dance, but the huge achievement rolling across the floor is for tLP. She just sees "that girl like me" suddenly "not like me" after all. And I see how much walking does mean to her, even though she doesn't really talk about it much. And the best and most evenly cut little squares of cheese with matching squares of ham, and a raisin and a cube of white bread with no crusts can't compensate for that.

But then she wants to know more. And she isn't envious, she's impressed and excited for little E-F, this little girl she's never met, but who is mostly "like me". And she shelves it, and we watch some CBeebies instead. Which is, as it turns out, a wise choice. Because right there, right then, on Mighty Mites, there is a little girl sitting on the floor "like me". Who is then in her big power chair "Like my old chair" and showing the world how to do ten pin bowling with a big ramp to roll the balls down. And our own Little Princess is an equal again; she can bowl and she can she can drive her own chair, and there are other children out there like her and they are having fun, and she can have fun like that too.

GiggleBiz comes on next, and there's a little girl with a naso-gastric tube, and "that was like I was having that one day", and hurrah for CBeebies and for blogging parents who are willing to throw open a window onto their lives. So we move on towards bedtime, and I wonder whether tLP realises how different her bedtime routine is to most of her friends, but decide to shelve that for another day. And we read Charlie and Lola, and she does some excellent sounding out ~~and I don't kill her, although I quite want to, for insisting that g o o d spells DOG~~, and I leave her on the pot for a minute as I go to fetch her drugs.

And then I hear muffled thumps from the bathroom, and stand in the doorway watching as she picks each leg up in turn with both hands, dropping her foot back onto the floor then twisting to reach down for the next. Lift, drop, repeat, lift, drop, repeat. "Look Mum, I am walking."

And it matters.
Tia

*Complicated, but boils down to the fact that she can't have rods to the base of her spine as the base of her spine is split and frayed rather than being one solid lump, and can't go through her back to get to her spine as the myelomeningocele has left too much scar tissue and wodges of spinal cord. Deeply untechnical explanation.

Hello Grolly

2011-09-25T19:49:00.002+01:00

We got home from church this morning, and the Little Princess asked "if you possible, could it we have a tray for out lunch with some things to choose on it?" Correctly interpreting this as a desire for sandwicches and nibbles and a bit of a picj your own rather than "I put it on your plate, now just eat it", and deciding it sounded far ~~easier~~ nicer than fiddling around and actually cooking something, I agreed. So, happily pottering around in the kitchen (apparently cheese tastes much nicer when cut into small squares, bread is tastier with the crusts cut off before they are even seen, and peppers are never going to be eaten but look pretty all neatly sliced), I heard a little rustle at the cat flap. Wondering which of our feline friends had decided to pay a visit, I looked down as a familiar, if somewhat faint meep sounded. And a very small, very thin, very scruffy Grolly staggered around the corner, looking outraged at the lack of food on tap. Having remedied this as quickly as possible (it is, after all, a mere 27 days since we saw her last - how very dare I pack the bowls away so soon?), she hoovered up a few cat biscuits and fell onto my lap for a cuddle.And has followed me around the house for the rest of the day. I walk to the kitchen, she takes another dab of food or a dainty lap of water. I sit down, she half jumps, half crawls up onto the chair beside me. I sit for too long, she stands in the doorway and calls me to accompany her back to the food bowl. I go to do something with one of the girls, she leaps up to assist. Or to ensure she's still the centre of attention, anyway.
She's exhausted. Skin and bones and weighs less than at least one of the birds she's dropped at my feet in the past. She doesn't know it yet, but she'll be taking a trip to the vets tomorrow morning for a thorough going over. But, to my untrained eye, she looks like a cat who has had access to water but not a lot of food for the past few weeks, and who now needs lots of small meals and lots of rest.

It's good to have her back. I'm now researching GPS cat collars, nut at the moment I think they'd weigh more than she does.
Tia

Alina

2011-09-23T19:23:00.004+01:00

You know, we're pretty lucky here. Or blessed, if you prefer, although I myself dislike the implication that people not born here are therefore somehow less blessed. But hey, either way, no matter what you think of the fairly swingeing cuts in support for some of the country's most vulnerable families, we're actually still pretty lucky here.

Life might not be full of luxury, and for a lot of people basic necessities are a struggle. The safety net has bigger holes than it's had for many years, and for some, the struggle to straddle the gaps are getting harder and harder.

But it doesn't compare.

This is Alina*
No one knows exactly how old she is, but the experts think she is probably between 2 and 3 years old. She was found, a few months ago, abandoned in some bushes.

Alina has Hypoxic Ischaemic Encephalopathy (HIE). Long words, but essentially, she has brain damage which is likely to have happened at or around birth. My Mog also has HIE. Mog's birth parents couldn't cope with the challenge of caring for Mog day in, day out. They were lucky, and so was she. They were able to leave her in hospital, our National Health Service and Social Services provided for Mog, and now she and I have each other. I'm definitely very lucky - I get paid actual real money to parent Mog, and how awesome is that?

But, without access to social services, without access to anything like the amount of free healthcare we have the luxury to complain about, Alina's parents managed to keep her alive for two years. What then caused them to abandon her? Why in the bushes? Where were these bushes? Did they know she would be found? Did they watch as she was rescued, and hope that now she would have a chance at a better future? Do they now have any way of knowing where she is and what has happened to her, or did the burden of knowing that they simply could not meet her needs break them completely?

Aline, unlike Mog, was born in India. I guess she is lucky too - she was found in these bushes, and taken into a government orphanage, where she was cared for, was able to receive medication for her seizures (common with HIE). And now she is in the care of Sarah, and her life is going to go on getting better and better.

This picture is deceptive. Alina cannot sit unsupported, she is very weak, very tiny, and seriously malnourished. She urgently needs more medical help than the government orphanage have been able to give her. She needs food, clothes, physiotherapy, vaccinations. And she needs an Ayah (nanny) to love her, to cuddle her, to rock her and comfort her and teach her that she is in a good and safe environment.

We pay our taxes, and a proportion of that money (not enough according to some, too much according to others) goes towards meeting all Mog's needs. I know how much some of her needs costs, others I have no idea - I'm just thankful that they are provided for us. Sarah does not have that financial help. She estimates that meeting Alina's basic needs (care, food, nappies, clothing, medicine) will cost a little under £100 a month.

£100 to keep a child alive and show them they are loved. It's not much really, is it? Sarah is now looking for sponsors for Alina, and for the 22 other new children the government orphanage have just asked her to take responsibility for. Can you help? If not with the whole sum, then by sponsoring a portion of Alina's costs? A takeaway, a bottle of wine or even one less cup of Costa a week - most of us wouldn't notice the difference to us. But it might make all the difference to Alina, and I know it would make a huge difference to Sara.

You can find Sarah's blog here . A word of warning; since I started writing this post, Sarah has posted details of her very newest child, and some people may find the photos disturbing. Emma is very seriously unwell and in desperate need of prayers and medical help. And you know what? Emma has Spina Bifida - as does my Little Princess. But whereas my Little Princess was lucky enough to be born over here, and receive neurosurgery on her first day of life, little Emma was not so lucky. Let's just pray it's not too late for her, and that she too knows the love which is surrounding her now she has been found.

However badly off you may be at the moment, it doesn't begin to compare. Sarah said she couldn't take these newest children without raising the funds for the initial costs of taking them. Those funds came in within days - now she needs our help in making things work for the next weeks, months, years. If you visit her website (and for those who would rather not see pictures of such a desperately ill baby there's a link here which will take you directly to a page with all her newest children apart from Emma on it) then you can donate via paypal. Alternatively, email Sarah at sarahscovenanthomes@ymail.com and she will sort things out for you. Be aware she is arranging care for the 22 newest members of her extended family, sorting out urgent medical care for Emma and other acutely poorly children, juggling the needs of the other children already around, oh and pregnant with twins, so please be patient if you don't receive an immediate response!

Tia

*Not her real name. But she is a real child, and this is her real story, as far as we know it.

Somewhere in the Middle

2011-09-19T11:38:00.000+01:00

Mmmmm
Tia

Dear Callers

2011-09-13T13:24:00.002+01:00

Please note.

I have not been missold PPI. I have, in fact, never taken out PPI.

I have not had an accident in the last three years which was not my fault. Well, unless you count being run over by my daughter in her wheelchair, but as I supplied her with the ~~weapon of mass destruction~~ chair in the first place, I suspect I am probably to blame. All my accidents have been well and truly my own fault, and I have no interest in pursuing a compensation claim against myself. Although, I do think I probably owe myself a decent curry.

There is no problem with the windows on my computer. I have a Mac.

I would not, purely for research purposes, be interested in answering a few questions about why I do not wish to take you up on your marvellous, never to be repeated, offer of double glazing at a substantial discount.

I do not want loft insulation. I don't care if it is free; I have a ground floor flat and no loft.

I have no idea who I will be voting for in the next election.

I cancelled my pet insurance because my pet is dead. No, you can't sell me more pet insurance.

I'm very happy with my phone/television/broadband service. Well, mostly. I will not be changing to you.

And no, I don't wish to switch electricity or gas supplies either.

Conversely,
Dear supply company. I would have appreciated a phone call last week to let me know you are having difficulties getting hold of the Hunter 12s. Waiting until we only have one left is Not Helpful.

Dear Care Agency,
I need to know whether or not I will have care on Monday morning before Monday lunch time. I would appreciate having all our hours filled - perhaps instead of sending staff on endless shadowing visits, you could put them in at times when we have no care? I understand they need to learn the job, but why send them solo one day, and doubled up the next. And yes, you can put our carers in 10 minutes earlier in the morning, but your staff are still not going to get to Witney from here at rush hour in the time you have allocated to them.

Dear hospital, please explain why you appear to have discharged my daughter from your clinics?

So, to summarise,
Dear uninvited callers, telesales, opinion pollers and scammers, please go away. Dear people who should actually be calling, please do.
That is all.
Tia

Fun in the Park

2011-09-11T19:05:00.002+01:00

To the anonymous commenter who asked if I knew what a happy child with CP looks like, I give you one haapy child with CP, playing with her sister.

And to those who ask why a tiger, I refer you to Matt - he left a lasting impression.

The flower is inexplicable. But beautiful.
Tia

Summer Summary

2011-09-09T19:54:00.006+01:00

I've not been here very much this summer. One or two ~~thousand~~ things going on, small children falling into the habit of regarding the computer as their property during the day, a Kindle with unlimited reading material, and general lack of headspace has all led to minimal blogging.

I could write the missing twenty posts, some half written in my head, others with three photos lined up neatly in a row, and backdate them to fill the gaps. Or, I could post the edited version here and take up where I left up, now that the girls are finally back in school.

It's been a long summer.

Surgery for the Little Princess at the start of term six, meaning absolutely minimal school for her from May until this week. Illness for Mog at the same time, passing virtually unnoticed due to the competence of the team of friends and professionals who cared for her as I watched over tLP. Only once she was better did we all take stock and realise this was an illness, not a new normal.

I have a new routine I'm just about getting to grips with; late night meds for one child added to the early morning meds for the other mean sleep is less than it could be, especially since tLP does still wake at the moment needing either more pain relief (thankfully reducing) or just turning and unplaiting (drainage bag plus overnight feed plus legs with no feeling in them produce some interesting tangles).

So, some highlights.
tLP demonstrating the usefulness of her wheelchair when gardening - down low to weed, up high to prune, and whizz whizz across the newly mown grass (cutting nice divots out of it) to pass plants to the gardener.
Mog ~~choosing our Christmas Dinner~~ cuddling Turkeys at Peachcroft Farm on a trip with the Brownies.
tLP inventing a new version of skittles in the outdoor playground upstairs at the Children's Hospital. No need to stoop to pick up the ball, and minions will restack your skittles for you.

Mog's Birthday trip to France, only thirteen months late. Cut short due to problems with the Tunnel, so only time for Carrefour and lunch. Grannie made the most of it though!*

Camping, high tech style.
First at Guide Camp.With another trip to another farm.

And then New Wine.

The Migraine Toilet we found whilst taking Great-Grannie shopping in Witney. My eyes, my eyes!
And possibly the emptiest hospital disabled parking ever. Photographic taken as proof - just an ordinary Wednesday, not late, not early, just empty. Note to self: schedule as many future appointments as possible in the school holidays. Two Princesses, enjoying our apples. One up high
and one to catch. And a few more of us standing by with plastic bag and open arms.

A trip to Tring, to visit friends who don't live there
and to eat blackberries
and watch Chuggington.

And then back to school for the Little Princess one day, Mog the next. Or so I thought. An early night before the start of school interrupted (oh, so interrupted) by a very very unexpected foster placement. A quiet Mog-and Me day interrupted by entertaining said fosling then waving goodbye to our shortest placement ever. And then the news that Mog's classroom was not ready (building work), so best if she stayed away on Wednesday.

Then on Wednesday the news that there was no nurse, best if Mog could stay away on Thursday too. And finally on Thursday an agreement that we could go back to last term's agreement, namely that Mog could go to school but that I would stay very local to be on call for emergencies.

So today, a few days later and a whole lot tireder than expected, Mog finally went back to school.

It's not the best photo (phone pic of a computer printout of a blurry photo), but I think it's safe to say she was pleased to be back.

And I, I had an empty house. So many plans, mostly involving a lot of not having to go out anywhere, make conversation, or do anything at all. A long bath. Bliss. Unfortunately followed by a whole lot of life getting busy (no, nothing exciting), and a fairly unrelaxing day which ended with one very very overtired little girl learning the sad lesson that behaviours picked up in school aren't any more acceptable at home than I imagine they are at school. And if they are acceptable in school, that we still Don't Do That Here, Dear.

All cuddles at bedtime though. And tomorrow is Saturday, which means pancakes for breakfast and quite possibly pyjamas all day long. When school sent homework asking what our family traditions were, I wonder if that is the sort of thing they really meant?

So the summer is over, we all survived it. We had two good weeks away, both girls have started school fitter than they were at the end of last term, tLP has managed four full days at school - more than she's had since May, and there is just the faint possibility that my house might actually have a floor and clear surfaces one day in the not too distant future.

I say we all survived it. We didn't. Gotcha was run over mid July. Grolly has been missing for ten days now; I don't hold out much hope for seeing her again. Our little feline squatter (who lived around the corner but spent most nights on our piano) has not been seen for a similar amount of time. Goway, after an absence of several months, has now decided the house is his again, and has taken to popping in at midnight for food and a greeting, although he won't let me touch him.

And that's us, really. Conversations about the next round of surgery begin towards the end of the month, I think Mog may have outgrown her chair and need it tweaking, tLP's home manual chair has fallen apart so I need to sort out a replacement, and all the thousand and one things I'd shelved until the start of term are now starting to fall off the shelves (and how how the top of my head wishes that were merely metaphorical).

So, how have your summers been?
Tia

*OK so there's a chance she didn't drink it all.

Famine relief

2011-09-02T07:03:00.002+01:00

The World Food Programme will receive a donation sufficient for one child's meal, for every one who fills out this quiz. It isn't much; I'm sure they could do more with a direct donation, but if you have two minutes whilst you're eating your own breakfast, then why not?

Tia

Sisterly love

2011-08-31T14:46:00.000+01:00

The house is full of the scent of massage bars and the sounds of sisters enjoying themselves.

Eve

2011-08-30T17:06:00.000+01:00

Just a very brief post to ask for prayers for my Goddaughter Eve who has just been taken down to theatre for a tracheostomy. Eve's mother Tina is keeping her company in hospital, whilst daddy is holding the fort at home for the next month - please pray for all of them.

Tia

Today

2011-08-27T19:31:00.002+01:00

I am thankful for Rhinofloor, living in a flat town, and early bedtimes. Oh, and the fact there are only ten more sleeps until school begins again.

I am bored of repeating the phrase "Stop fiddling with it and drink it up before you ARGH!"

I am at a loss how to explain, in words and concepts my daughter will understand, why and how I can't magic up a "real Daddy" for her - Daddy God and Birth Daddy not apparently cutting it.

I would like to catch the dog owner who can't be bothered to clean up after his dog, and make him (or her) clean the stale but no less smelly faeces out from my daughter's wheels. I'd also like them to explain to my daughter why it is that she had to manage without her wheelchair since we only just managed to get home before the ridiculously heavy rain shower, and her chair was too vilely polluted to be allowed into the house.

I would also like to put the people who redesigned the checkout at Budgen's into my daughter's wheelchair and then get them to try to queue, pay, and get out of the queue without destroying the displays. Or perhaps I'd just like to destroy the displays.

I am tired of waiting, and would like to know why a pressure relieving mattress took less than a week to arrive for one daughter, whilst the same mattress, requested one week later (decision having been made to just order one initially, to check suitability), has now been 4 months in the requesting, with still no sign that it has actually been ordered. Meanwhile, I am sincerely hoping I never ever have to hear "Oh Mummy, this little body cannot get comfortable" ever again.

I am enjoying the fact that the heaviest rain shower dumped all the rain for the week seconds after we made it to the front door, and dried up quickly enough to enjoy the blue sky and newly scented flowers again.

I am loving my daughter's help in snapping beans and broccoli and stirring mince to make a yummy dinner, and hoping that one day she really will be more interested in eating the things she cooks.

I am hoping that the weather is the explanation for the bad headaches making a reappearance.

I am wondering how the girls will get on at school next year, trying to remember what has changed since last term and which school will need to know what, and hoping that our care hours will finally be met in full, preferably before another two of our carers have to take time off.

But mostly,
I am tired.
Tia

Ruby Wedding

2011-08-20T21:45:00.002+01:00

Happy Anniversary to Auntie Jacky and Uncle David. And thank you for a lovely day and fabulous cake!

Tia

BookSneeze Review - Thunder Dog, by Michael Hingson

2011-08-19T21:03:00.003+01:00

The True Story of a Blind Man, His Guide Dog, and the Triumph of Trust at Ground Zero.

I requested this book for review mainly because my friend's son had just received his first Guide Dog, and since I'm not going to get to see them for a while, reading felt like the next best thing.

One man and his dog, and a long walk downstairs on one of the most terrifying days of their lives. It's a story in itself, but this story is woven into the background of Michael's relationship with all his Guide Dogs, with his life before and after the events of September 11th, and with the story of his own childhood growing up blind living in a sighted world.

It did surprise me how much of this book was about events unconnected with the Twin Towers; that was not what I had expected from the title. But this did not detract from my enjoyment of the book; instead I found this to be a fascinating insight into Michael's life, and into the relationship he has developed with his dogs over the years. It has helped me to think about particular challenges my friend's son may be facing at this time, and I hope his own dog gives him as much independence as Michael has had himself. I also sincerely hope he never faces the battles Michael's family had to fight in order for the dog to be allowed on school transport!

Tia

Words from the Princess

2011-08-12T19:21:00.003+01:00

I've been very tired today; the Little Princess has been ministering to me by bringing cups of water for me to drink and revelling in unlimited control over the computer. She's also been pretty good at finding things for her and Mog to play with, spending at least an hour carefully covering a piece of paper with stickers to make a beautiful hat.

Lying down pretending to be asleep, I was a little worried by her claims to have a "Smash". Very insistent that she had a smash, but since I'd not heard the telltale crash tinkly crump "sorry, Mummy sorry" which usually accompanies overenthusiastic driving, I stayed still ~~waiting for her to go away~~. Eventually I opened my eyes to see her with a towel wrapped around the lower half of her face. "Look Mummy, I got a smash!" Oh, a Mustache!

Having finished her hat, I was then slightly surprised to hear her ask "Where I can defecate, Mummy?" Sophisticated request; I heaved myself up to find the commode. Only to find her waving a pile of stickers and freshly sharpened pencils at me "Mummy, I defecated my hat, now where I can defecate next?" No sweetheart, you mean decorate.

It's been that kind of a day really. We finished it all three of us cuddled together, watching an ancient Escape To The Country. tLP decided we should cut the house featured out of the ground and transplant it to our flat, so we could live there without leaving here. I like her logic.

Leaving her in the bathroom as I went to sort the meds, she called to me. "Goodbye, Mumma, I am moving house tomorrow. I will go and live with my Auntie." OK, I thought; which Aunt? Victoria in Tanzania, Yvonne in Scotland? Nope, the Auntie who lives in the same town as Grannie and Grandad (NB - we live in the same town as Grannie and Grandad). Hmm, Auntie Lou? Assorted Great Aunts, and one Great Great Aunt? Nope, "I will live with Auntie Lynn."

Last I heard, "Auntie" Lynn was clearing out the television room - I give it until the dog decides to say hello, but oo the peace is tempting!

Tia

New Wine

2011-08-07T21:13:00.003+01:00

Lots to think about, lots to process. Beautiful weather, lovely friends, speakers I could have listened to for hours except that one hours' speech was enough to think about for the rest of the day (and week and month).

For the first time ever, I am not at the annual Special Kids in the UK summer camp, the dates having clashed. So I'm even more pleased we were able to import some of our Special Kids friends, as well as making new ones.
I just love how these two can go months without seeing each other, and still be the very best of friends when they meet up.
And I love how much of a cool dude my Princess is getting to be.
but never too cool to do the washing up.

Good to spend time with God too; I do like it when He comes on holiday with us. Almost too much to think about; a very differently deep and rich week which I shall be feeding off for a while.

I'm seeing a different kind of a future now to the one I thought I had even a few weeks ago, and I'm very interested in seeing how it will all work out.

And, my potted thought for the week, "There are no distorted mirrors in God's House." So if we are all made in His image, and if He is beautiful...

Tia

Come, my beloved

2011-08-05T22:32:00.000+01:00

The Man called, "Come, my Beloved, and live with Me in My house forever."

And the woman replied, "I am not ready for You, I cannot come to You like this. Let me prepare myself first."

The Man said "I know you and I love you, for my Father created you, and He and I are one. I already know your deepest darkest secrets and I live you not despite them nor for them but through them and in them."

And the woman said "But if you know my secrets then I must run, for I am ashamed."

So the Man asked "Where can you go from My presence? If you go up to the heavens I am there, if you go down to the depths I am there too. If you settle on the far side of the sea, even there I am with you. For I am with you always, even to the very end."

And the woman said "But I need to learn how to love You. I am so very tired, and I need my sleep. I must care for my children and all these things which You have given me."

The Man said "Come. Just as you are, just who you are. You did not choose Me, but I chose you. I have called you out of the darkness and into My glorious light. My burden is easy and my yoke is light. My gifts to you will never weigh you down but beautify you for I delight in you and they reflect my love."

And still the woman hesitated, saying "This is not how I thought things would be."

The Man replied "Do not be concerned about other people's experiences, for this is not about them but you. Walk with me in the way I have chosen for you."

And the woman said "Come, Lord Jesus, Come."

About Turn

2011-07-26T21:17:00.000+01:00

This time three nights ago, I was sitting beside a hospital bed signing the consent forms to allow doctors to insert a line into my daughter's head to measure intracranial pressure. Tonight, I am sitting in our new tent mansion listening to the distant voices of Guides singing a rattling round of Tzena Tzena, watching my two girls sleeping peacefully in a nest of blankets and lilos, and my biggest current problem is where I left my thick blue fleece and whether my thinner blue sweatshirt will be warm enough tonight.

Life is, at times, extraordinarily good.

Tia

Essential bathroom accessories

2011-07-23T22:27:00.001+01:00

Title relates to photo and not rear of the post.

In other news, we are home. Out on parole; have to report in on Monday morning and let the powers that be make more decisions. Hopefully the latest batch of urine and swabs will show something we can fix quite easily without needing to be readmitted.

Meanwhile, the Little Princess continues to run a temperature. She's operating at around 90%, getting tired but full of enthusiasm and very pleased to be home. She's also absolutely adamant that all three of us must stay together, struggling lots with the idea that any one of us might do something apart from the other two.

We should be at Guide camp right now. Clearly, that's not on the cards right now. But we are running down to visit them for a few hours tomorrow. This is, it turns out, a good thing, since we are now taking with us two tents, one lilo, one bunch of song books, and three smelly cheeses. All of which were somehow left behind this morning. Guide parents panic not; the tents aren't the ones the girls should be sleeping in, and the lilo belongs to a leader.

And for now I'm enjoying another quiet (I hope) night in my own snuggly memory foam bed; clean sheets, and the only noises those attached to my own girls, not the vomits and screeches and monitor shrieks attached to the best of children's wards. No bickering parents under the impression curtains are soundproof, no small children in distress, no nurses trying to gather obs. And, no gentle breeze flapping through our new tent, no scents wafting through the canvas, no starlight and moonshine turning rough turf into mountains and valleys. My lovely bed compensates for some of that though.

Tia

Back in the jug agane

2011-07-22T08:23:00.001+01:00

So it turns out that the Little Princess' headaches are definitely not supposed to be happening. Another bad bout won us the dubious privilege of an admission to try to sort them out.

A second inconclusive CT scan now followed by a late night insertion of an intracranial pressure monitor. One decentish night's sleep with what looked to the laywoman to be fairly normal pressures.

One 39.5 temp at 6 am so a bit of a rude awakening. Everything else looking ok, so the dreaded bloods need to be taken at some point.

ICP monitor will stay on until she's had a headache. Probably an infection somewhere but intermittent nature of the problem doesn't shriek shunt infection, everything else seems fine so we may be here for a while trying to figure things out.

Meanwhile on the home front, Mog and our sitter were editors by a police raid on our neighbours in the wee small hours. She can't sit tonight; I wonder why?

Tia

Booksneeze Review - The Waiting Place, by Eileen Burton

2011-07-17T20:11:00.002+01:00

Learning to appreciate life's little delays is the subtitle of this book, and the reason why I chose it. I am waiting, waiting for life to slow down, waiting for my girls' health to stabilise, waiting for there to be 30 hours in every day, so that I can take some time for myself as well as scrambling around caring, cleaning, nursing, chauffering, PA-ing, entertaining. Waiting to have time to make plans.

All of which sounds fine, except that I am waiting for all this to stop, getting caught up in the "What I could do if only...?" rather than concentrating on the "What can I do right now?" Dreaming is good; if Martin Luther hadn't had a dream, how would life look now? But where dreaming interferes with living, it's less helpful.

It took me a few chapters to get into this book. Taking trips down someone else's Memory Lane wasn't what I was expecting from an author who claims "The Waiting Place is for people like me who get stuck in their precious, mundane, gorgeous, absurd lives. It is for those who work hard at the 'business of living' only to find that they seem to be caught in one long, boring meeting." But I persevered, taking my own side trip back into my own childhood home (much easier, since it's just around the corner, and my parents still live there), and found some treasures I know I will want to reread.

I can utterly identify with Eileen as she remembers waiting for her son to take another breath. The relief of knowing that there is actually something wrong, that what you are living is not, in fact, normal, and that the doctors are concerned too.

And then this "There are times when we are left only with what feels like the wrong ending. When we listen closely enough, we think we hear the angels cry." Beautiful.

This is a book to dip into rather than necessarily to read as a whole. With essays on childhood, family life, difficult times, and stepping out of the safety zone (and giving your car to a stranger because God told you to), I know that I will be revisiting different chapters at different times.

I'm not a Pastor's wife (or anybody's wife), I've not ever had to queue to qualify for WIC support (not something we have over here), my mother has never tried to buy me a wig. But whilst these experiences are what Eileen uses to demonstrate her points, I'm a woman in a busy and less than perfect world, and I can certainly identify her Waiting Places in my own life.

I received a copy of this book free from BookSneeze in exchange for writing a review. I was not obliged to write a good review.

Tia

Gotcha

2011-07-15T19:10:00.003+01:00

We had a carer this morning. She got Mog up for me, managed to brush the Little Princess' hair, and even found time to play a game of snap whilst I searched for the remnants of my sanity, still somewhat shredded from yesterday's activities.

And then she left, and five minutes later the phone rang. "Have you got both your cats with you? Because there's a very flat cat down here, I think it might be one of yours."

And so I spent this morning shovelling Gotcha off the pavement. Far too big a beastie for the bag I had brought with me, I posted his face into it and carried one very stiff, ridiculously heavy, ex-feline friend 300 yards to the vet. Apologies to anyone who may have been walking children to school at the same time, but I couldn't leave him there. He slipped his collar last week; would someone have called me if he'd been wearing it? I don't think it would have made any difference to the outcome, but who knows?

I can't say Goodbye, Old Friend; he was only two. I can say I bottled out of trying to explain cremation to a six year old, only to spend the afternoon trying to explain that no, he won't mind being buried because there's nothing left to mind.

And then this afternoon, his new collar arrived in the post.

I think it's safe to say today has not been a great day either.
Tia

Walkabout.

2011-07-14T18:51:00.003+01:00

It all seemed like a good plan at the time. The bus needed a new back door, thanks to losing an altercation with a gate post. The diary was actually empty for two days, so sending it to the garage wouldn't be too much of an inconvenience.

It started well. Despite having no carer, the girls and I were up and dressed in time for Mog's school bus. The Little Princess and I loaded ourselves into our bus, after a brief pause to empty it of tent, camping equipment, oxygen, ~~McDonald's Happy Meal boxes~~, etc. We drove to the garage, waving to Mog as her school is opposite the garage, and dropped the bus off. One very happy Little Princess and I walked into town to see if her new chair would fit onto the local buses, riding two stops before reversing off the bus to a chorus of cheers from thankfully good-natured passengers and driver. Hurrah.

We walk the rest of the way home, have a brief pause before setting off to walk to school. I hand tLP over to her TA, And my phone rings. It is Mog's school; Mog isn't well, will I go and take a look please? I walk back past our house and over to Mog's school, where one very happy grinny Mog is waiting to be taken home. We stay for a quick harness change at the wheelchair clinic, then grab her gear and I walk her home.

As I leave Mog's school, the phone rings. tLP is not well, will I come and take a look?

One brisk walk later, we are home, and thankfully tLP's TA agrees to walk her home to meet us.

And now I have at home one ridiculously well Mog, but a Mog whose suction pump is now plugged into the charger I had forgotten to send to school. Bad mother alert. And I have one Little Princess who is sweating buckets, in a lot of pain, and who just wants to lie on my lap and not move at all.

Lots of pain relief, we spend a couple of hours sorting out possible constipation issues, and as I try to work out the logistics of how to get both girls to hospital without our bus (which boils down to whose wheelchair should we leave behind and can I cram them both into a buggy somehow?), she settles a little and I decide it can wait for a while.

One horrible night, which she doesn't appear to remember, and one girl waking this morning alert and bright eyed, not needing any of the pain meds she has been living on for the past few days, and drawing a beautiful picture. And finding some scissors and cutting chunks out of her hair, but I'm trying to forget that bit.

But what has been happening just at night has now happened during the day (i.e. too much pain to cope with), so time to phone the hospital. Who, as expected, say to bring her in for a review. A quick warning call to Mog's school with an advance apology that any emergencies will mean calling an ambulance as I can't get there. A quick run down the list of people who might be able to meet Mog after school if necessary (note to self: list entirely too short, must cultivate non-working friends). And a long bus trip with a very happy Little Princess.

One happy and pain free LP up on the ward, examined and appears fine, but let's do a quick CT scan just in case. One fine CT scan and we are back to no problem showing. Which is not unexpected, since she is currently demonstrating handbrake turns in the corridor and building lego cities in the playroom. One prescription for slightly stronger pain relief, but only to be given as a one off, as it will mask potential problems. And then run for the bus, cancel the care and race Mog home.

So, we are home. Which is good news. Except that it's not, not really. Our current theory is that this is not to do with the operation, but is instead a sign that her VP Shunt is now working intermittently. It's still working too well to need changing, which is good. And it might sort itself out, which would be great. But it might very well not. And so we watch and wait and see. And have to bring her in next time the pain gets unbearable. Which sounds sensible, except that this seems to happen at 2AM. And whilst the garage have just returned the bus, I still don't relish the idea of getting both girls up in the middle of the night and transporting they and all their equipment, possibly repeatedly, until she has an episode which lasts long enough to be checked properly.

Oh, and did I mention that we got off the bus and she started crying, and has been complaining ever since that her head is sore. Until I say we'll have to go back to hospital, at which point she insists it is all better. And now I genuinely have no idea whether it is really sore, but she is able to hide it completely from the doctors, or whether it is all a big ploy for sympathy and to keep me by her side, and isn't anything like as bad as she is making out. Both are possibilities. I am tired.

Tia

Three dimensional living.

2011-07-08T20:19:00.003+01:00

Such a simple thing, something we all take for granted. We stretch up to reach that tall cupboard, or grab the apple straight from the tree. We reach down low to grub in the dirt, pick things up from the floor, do our shoelaces up. And then we stand/slouch/sit/take up any one of a hundred positions inbetween.

We move forwards and backwards, side to side. And up and down.

Up until now, the Little Princess has lived life in two dimensions. She's beetled about backwards and forwards, side to side, but lived most of her life at a level more or less limited to somewhere between 30 and 60 cms off the ground - her seated height plus her ability to bend.

It's a decent, functional height, on the whole, for a child her age. Sitting, her head is on a level with her peers when they stand. And her knees are mostly able to fit under tables in restaurants and cafes, albeit at a slight angle to accommodate her joystick.
Plenty you can do at that height - her she is, helping the gardener using a long-handled something, to trim the edges of the lawn.

But.

Now she has other options. Raising her chair up high, she can reach the sink to wash up, and the cooker to melt butter. She can sit in the middle of the room and watch the windows for visitors ~~and give an embarrassingly loud commentary on all the neighbours' activities~~. She delights in coming up high so we can cuddle without me crouching down.

And then there's this. No longer limited to just what she can do with the long-handled tools. She watches, imitates, and is free to get down and join in, no need to be lifted out of her chair, no need to wait for someone to lift her back in. Just the freedom to squat down, dig a hole, find a worm and a woodlouse and five stripey snails, and help plant our new borders.
Life in three dimensions. Just living.
Tia

You know you're tired when

2011-07-07T18:44:00.004+01:00

You stand at the door, pressing the "unlock" button on the key fob, hearing the click clack of the lock, and can't figure out why you can't open the door. Until you realise the front door of your house does not in fact have remote central locking and put the car key down.

You get inside, and realise that even if it did have central locking (and what an outstanding idea that would be), it would not have locked the house, as you left the back door wide open.

And then you realise you are wearing your slippers.

Tia

Giggle Juice

2011-07-02T21:07:00.002+01:00

Miss Mog has managed 2.5 days in school so far this last term. She does have the unusual distinction of having beaten her sister's attendance rate, but then she does not have her sister's neurosurgery excuse.

But, starting a couple of days ago, Mistress Mog decided to make it clear that she might just be feeling better.

Wearing your new Birthday outfit always helps.
But most of the last three days have been more like this.

And I don't know what's been added to her milk, but I want some!

(I'd also like some antidote, since she's been laughing most of the night too)
Little Sister insisted on getting in on the action.

Tia

BookSneeze Review - A Reluctant Queen, by Joan Wolf

2011-06-30T20:59:00.004+01:00

Having read and enjoyed Francine River's Lineage of Grace, I was interested to see how Esther's story could be re-told. Just how did a Jewish girl end up in a harem auditioning for the role of Queen, and what did the King see in her? How did Esther come to save the Jewish nation, and what did she feel about it all?

Joan Wolf brings the Persian Court vividly to life, and uses it as a backdrop to tell the compelling story of one girl's obedience to God and to her elders. A love story, and a lesson in trusting God no matter where He leads.

I'll admit, when this book arrived, I put it aside for a while. It didn't feel like the light reading I thought I needed at the time. But, I ran out of other reading matter and I opened it up. And I fell into a world painted so beautifully that two weeks later, I am still at home in the Palace and in the market place, with the young Esther giggling with her friends, and with Queen Esther, taking her life in her hands to plead for her uncle and her nation. I'm pleased I had respite that day, because Esther's world was far more gripping than my own, even though I already knew how the story would play out.

Joan Wolf has written a compelling book, and I can't wait to see whose story she chooses to tell next.

Tia

Disclosure of Material Connection: I received this book free from the publisher through the BookSneeze®.com <http://BookSneeze®.com> book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 <http://www.access.gpo.gov/nara/cfr/waisidx_03/16cfr255_03.html> : “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

Miss Independence, 2011

2011-06-24T19:09:00.003+01:00

Freedom.

Tia

Conversation of the week.

2011-06-23T20:49:00.002+01:00

Somehow, my phone number seems to have been sent to a number of companies, despite me being a part of the telephone preference system. Which means that I now get a regular bundle of annoying and irrelevant phone calls, usually cunningly timed to interrupt bed times.

British Gas, despite being asked not to, continue to phone to beg me to return to them. I remind them that we cancelled our contract shortly after they left me without gas (so no cooker, no central heating) for six weeks one cold winter, despite knowing I had a very sick baby and two profoundly disabled older children at home. If they had no engineers available to repair our leak then, I remain unconvinced they'd manage any better now. Every time they ring, I go over this with them, they promise to remove my phone number from their records; every couple of weeks they phone back and we go over the whole thing again. Perhaps I should charge them for my time?

Then there's the company which has no-one at all a the other end, just silence and a hang up, and an 0845 number. Generally once an hour for a few days until someone is there and gets to hear all about my irateness. I'm not sure what they're selling yet; when I point out they've just irritated me to the point where I will be actively advising against them they suddenly decide to stop calling. For a while.

There's the large selection of people who insist I must have taken out a loan with payment protection insurance, and must be due for £3,000 compensation. Clearly they know better than I do; I'd quite like to know who did take this loan out in my name, and what they spent it on?

The callers who insist they have a grant from the government just for me, and that I must let them install loft insulation. Strange that the government is so adamant, considering that I live in a ground floor flat. Just as I beat them down, another lot pop up, begging to be allowed to fit double glazing, for a minimal fee, all I have to do is agree to let other people into my house regularly to look at it. Clearly, they've never visited. Or they'd realise that a) this is not the show home they would appreciate. And b) I already have double glazing.

Then there's the woman who rings every four months or so, really delighted to inform me that I have been specially selected to go on a free holiday; better than that, if I just go to the meeting she'll set up, I will be wined and dined and even receive a pearl necklace, just as a thank you for attending and listening to the information she has about the free holiday. My husband will receive a new wristwatch too. She's very nice, very persuasive. But when I point out that I have no husband, she tells me it is only suitable for couples, and rings off. It's probably for the best; I'm not sure what I'd do with the pearl necklace really.

For any potential callers out there; I am signed up to the telephone preference system. I don't want compensation for a non-existent injury, I'm sadly not in a position to spend £750 on a Carrbean Cruise, even if it is a price I'll never find anywhere else. I don't want a new credit card and certainly won't be signing up for one over the phone. I'm tied into my electricity and gas suppliers* for the next two years, I don't need more insurance and I'm not especially interested in any kind of lottery prize, not when I haven't actually entered any lottery. Now, if you can somehow break Virgin's monopoly and give me a good deal on broadband, tv and telephone, at the same price but preferably with a significantly more reliable level of internet access, please feel free to call. And if you can work out how to get the wireless wotsit working with the Mac, drop in! But apart from that, please just put the telephone down and back away slowly, for cranky woman walks the building.

I'm still shaking my head over Tuesday's caller though; I can only assume he was blindly following a script someone somewhere had devised to increase sales.

Voice at the end of the phone: Hello, this is Gowrings Mobility; I am trying to contact a Miss Goldie.

Me: Goldie died three years ago.

VATEOTP: Oh, I am sorry to hear that. So, would you be interested in a wheelchair accessible vehicle?

Me: Goodbye.

Tia

*OK, OK, I know you supply it and they are simply contracted to bill for it. Or whatever it is you are telling me. But I don't care. I have no interest in switching. Especially not at bedtime.

Nine.

2011-06-19T21:08:00.004+01:00

(Princess Mog all dressed up for the Royal Wedding)

Nine years ago, a little baby was born. Shortly after her birth, she started having seizures.

Today, Mog decided to celebrate her birthday by having another big run of seizures.

The rest of us celebrated in a slightly nicer manner, with scones and cream and strawberries and raspberries fresh from the garden, chocolate brownies and cakes and lots of singing and chatting.

Mog slept off the Midazolam - rather too well.

But tomorrow when she wakes up, she'll have a large stack of new clothes to choose from, a stash of new music to listen to (and if anyone here was the sender of the "Glee" CD, please identify yourselves; contrary to the label in the bag, I know she didn't order it herself!), some beautiful fluffy pink lights to look at, and an assortment of cheques and gift vouchers to enjoy spending.

Meanwhile I'm thinking back. I wasn't at that original Birth Day, but I remember her First Birthday; a teeny tiny Tumbleform chair and some bells and mirrors, chocolate cake smiles, and wine for the grownups. A second birthday, in our new house; Vtech toys in her standing frame, and sunny smiles with hair finally long enough for bunches. A third birthday, a new baby sister, and lots of splashing around in the paddling pool.

I don't remember her fourth birthday. Did we go to her other parents, rather than them coming to us? I have a picture of her birthday cake and candles and cuddles, but was that another time?

Birthday number five, and an invitation to the whole nursery class to join us at home, jump in her ball pool, check out her sensory lights, play with her new fountain in the garden. Bouncing classmates and guitar playing teacher, and all good fun.

Her sixth Birthday had vanished too, until I checked back through the blog - proof that keeping this record is useful to me if to no one else. A big, multiple day event, with Birthday breakfasts and days out, making a Rainbow promise and going to the circus.

A change of venue for her seventh Birthday; a week in Tenby with the Harriet Davis Trust. The Little Princess had just had surgery that time too.

And last year, big plans made small when Mog's ability to sit up shrank (thankfully temporarily, although it was a very long temporary), and a day in France exchanged for the great kite flying adventure.

So now Mog is nine, and definitely not little any more. And the combination of new medication and a new wheelchair have taken away most of last years' miseries. New needs have inevitably arisen to replace them, but she continues to make her feelings known, to surprise those around her at times with her opinions on life, and to add that little extra bit of interest whenever she possibly can.

At nine, Mog is a Brownie, and very proud to be one.
Mog goes to school, and has managed to increase her attendance rate from 40% to 60%. I think this past month's absence may be doing something to lower that again though.
Mog goes to Godzone at church, and comes home with drawings she has done herself, and craft projects she's had a little more help with. She is usually keen to go, and enjoys joining in the worship.
Mog is using a switch and a talking book in order to communicate her needs and wishes, and enjoys having something to tell us all. She's finally decided it is in her own interests to demonstrate her yes/no responses on request, and as a result, she can talk to people who have only met her once.
Mog has wild brown hair which has still never met a pair of scissors, and she still enjoys having it primped and played with. She has a huge wardrobe, and manages to look good in just about everything in it.
Since having her bar chimes for Christmas, Mog is increasingly using her right arm again to make them jingle (or, preferably, to push them over and make them crash. On second thoughts, perhaps she really hates hearing them jingle).
Mog is, once again, throwing new health issues at us, ensuring that she stayed the primary focus at her Birthday Tea, even if for all the wrong reasons.
Mog is a part of the local community, never short of people who will come over and say hello, surrounded by friends and family who enjoy having her around.
Mog is loved.
Tia

Skwirrelling about

2011-06-17T19:51:00.004+01:00

When the spinal surgeon said that the Little Princess would probably stay very short, he dismissed our concerns over this by mentioning the possibility of a powered chair with a seat raiser.

When the next surgeon mentioned that tLP's arms might get weaker, and that she might have more difficulty propelling her manual chair, we decided to look for a chair which had the ability to go down low and fit properly under primary school sized tables.

And we found three options. The K450 MX from Permobil, the SnapDragon from Dragon Mobility, and the Skwirrel, supplied in this country by Joncare. All slightly different, with very different price tags. Having taken a good look, we decided the Skwirrel was our best beastie; apart from anything else, Joncare are very local to us (so close, in fact, that the rep turns out to live at the house where our cats run off to when they have had enough of the food I offer them). There's a definite advantage to local suppliers. ~~Apart from when they steal your cats~~. Oh, and, they promised us that the chair could be with us just 4 weeks after placing the order.

So, four weeks ago, we signed on the dotted line, had a very important consultation as to colour (it is supposed to look like a friend's Mini, but unfortunately Ice Blue wasn't on the RAL chart), did some measurements, and handed over a large wodge of cash for a deposit.

I then spoke to Wheelchair Services, who had offered a pretty generous voucher towards it. They sent out the paperwork, giving me accidental kittens when the amount on the letter was for a manual rather than a powerchair, but correcting it quickly and paying Joncare their share by return of post. Hurrah for efficient practice.

And today was The Day. tLP woke up on top form and even consented to eat something for breakfast, in order to have enough energy for the Big Event. We drove round to Joncare, and were greeted with a large cardboard box, decorated with bows, ribbons, a special message to the Little Princess, and of course the signature Skwirrel.

Inside the box:

One rather stunning new wheelchair. The Little Princess decided to try to climb into it herself,

but was defeated, mainly through many of us telling her it wasn't quite ready yet, so took a brief break
before finally being lifted in and handed over ownership.

Note luggage rack for ~~her sister's suction pump~~ Very Important Things.

Most adjustments and tweaks and the inevitable sawing a couple of inches off the foot plates, and then we were free to head outside.
where tLP found herself temporarily interrupted again, as extra tweaks were made to the rather intelligent controller.

Finally, we handed over another large wodge of cash (well, a cheque, but it was a substantial cheque for all that), and were free to try to work out how to fit it into the van. Anyone know if Unwin make longer than standard front straps?

We cannibalised the spare rear straps and were off.

This afternoon, the Little Princess decided to take it for a walk.
I think it's going to take a little while for us to get used to front wheel drive (it's a bit like reversing whilst towing a trailer - turn left to go right, etc.), and a little while for her to get used to using her left hand rather than her right (the theory being this will free up her dominant hand to do all sorts of other things). And I know it'll take me a while to get used to walking the other side of her to hold hands.

But, she loves it. And, if at any time over the past two months, you had asked her why she needed a chair that goes up and down, she would tell you it was so that she could do this:
And now I can retire!

Tia

Whatever Happened to Mog?

2011-06-12T20:54:00.000+01:00

Because, however much she might wish it, the world does not in fact revolve around the Little Princess. She exists, not in isolation, but as a part of a family, and a wider community. And, despite her fairly complex medical issues, those around her are used to thinking of her as the more straightforwards child. She is, after all, reasonably independent (and utterly determined), she talks, she eats, she goes to mainstream school. Oh yes, she also needs mechanical assistance to breathe, wee, drink, and other minor things like that, but on the whole we tend to think of her as the healthy one. Comparatively.

So discovering that she now needs brain surgery before she can have the spinal surgery she needs to have before she can have the op she actually wants - the one(s) that will give her independence in the loo wasn't exactly the best of news.

And, naturally, the priority is to get her through the op and early recovery, and she needs Mummy by her side for that. Which brings us back to the whole not existing in isolation thing. Much as tLP may think it, leaving Mog in a cupboard somewhere isn't really an option. Not for a whole week, anyway.

And here's where it gets good. Helen House was always going to be our first option; Mog knows the place, the staff know Mog, and I can relax knowing she is safe and under the eyes of the whole medical team there.

But the op was brought forwards, and the hospice is very busy, and whilst they could offer us four nights wrapping around the op, Mog was homeless after Friday.

And our amazing Community Nurse (with a bit of help from some of the more senior staff in various statutory bodies) arranged for Mog to go to our local Barnados/SS/NHS respite care home for the weekend.

And, my previous decisions not to investigate it as an option even when we were dropping with fatigue a year or so ago had to be overturned, and friends with equally complex children reassured me how well their daughters were cared for there, and thinking it was probably better than sticking her in tLP's cupboard, and remembering that it was virtually in the hospital grounds, I was happy for her to go.

And then the op date was brought forwards even more, and instead of Mog being in HH two nights before the surgery, suddenly her stay did not begin until the day itself. And Mog decided to celebrate the news by starting a chest infection, with the interesting refinement of needing oxygen after around 3.30pm.

So here's where friends stepped in, with one friend giving up a Monday to come and care for Mog, and another racing back from work and swapping vehicles to taxi Mog and Grannie to the hospice, ensuring Mog was always with someone competent to suction (which is, as a rule, the best way to ensure she doesn't need it).

And friends stepped in again, to ferry Mog from hospice to hospital, with more friends bringing food and child friendly entertainment. And other friends refused to be insulted by having visits rejected, and continued to pray for a decent recovery.

And family stepped in to sit with whichever child I wasn't driving around to hospital or respite. And to visit tLP every day so I could grab coffee. And to feed the cats, sort the laundry, count the fish, fetch forgotten pieces of equipment (even carrying commodes on public transport).

And tonight, when respite is closed and hospice is full, Ronald McDonald has stepped up, and Mog and I have a bedroom just a 2 minute walk from the ward, and all three of us can be under the same roof for this last night before tLP is discharged.

And Mog informs me she has had a lovely tine and would like to go back to Viking House one day. And I don't think she feels as though she has been shuffled about for our convenience at all, more that she has had an exciting week.

And I am thankful to God for giving her such a lovely time, and surrounding her with carers and nurses not phased by the need for nebs at odd hours of the night, for keeping her stable even when ill, and out of hospital. For knitting tLP's head back together so quickly and for her amazing ability to shrug off major surgery. For all the friends and family and professionals (including some who may fall into two or three of the above categories) who have been helping us out and the others who have offered but so far been surplus to requirements.

And Mog is pleased to have had such fun, excited to see tLP again, and thinking that she would like some new music for her Birthday next week. I think we can manage that.

Tia

Happiness is

2011-06-11T21:58:00.000+01:00

Photo doesn't appear to be showing up so trying to send it again.

Happiness is

2011-06-11T20:52:00.000+01:00

A knitted Peppa Pig. Thank you, Great Auntie Felicity.

Peppa needed a tour of the hospital this morning. She found all the coffee shops, and tried a motorbike in the ward playground. She liked the motorbike so much that she decided to keep riding it even after tLP went back inside. But thankfully she agreed to come and take a nap when we tracked her down again.

After lunch, she had a set of neuro obs. The results were a little worrying (pupils fixed and unevenly dilated, no palpable pulse, blood pressure and sats through the floor). But we decided perhaps the physiology of the knitted pig is different to that of humans, and she certainly seemed happy enough. Bit quiet though.

Tia