Because they're growing up too fast

tLP brought a doll to church today, a doll which was appropriated by the very delicious little boy sitting next to us, who spent the service delicately identifying the doll's various facial parts, and very sweetly playing "Round and round the garden" with the doll's hand (and then giving his mother heart failure by body-surfing the doll, which, under small child, looked far too similar to the very real baby who had been on that spot on the carpet a few minutes earlier).

tLP abandoned the doll in her quest to run around outside with church friends, so doll hitched a lift out of church and into the hall on the back of Mog's chair. To quote our esteemed service leader this morning "Tea and coffee are good, but worshipping God is better." I wonder if the worship might be better if the coffee came first? I guess the queues for the loos might be longer...

I digress.

Mog and I entered the hall, I picked up my coffee, and turned around to someone nodding at Mog and the doll perched behind her, passing comment that "You've got two babies today I see." Confused, I pointed out Mog was 11, hardly a baby, and we had a conversation, somewhat startled on his part, as he hadn't realised she was the same age as his son. Don't think he quite understood that she wasn't simply an 11 year old baby though.

She isn't. Even when she's asleep, peacefully and beautifully asleep (bar the sarcastic seizures which twitch to order whenever anyone points out how peaceful she is), she's very definitely not a baby any more.

And nor is her sister

I might still have thought of them as babies for a while

   

Because let's face it, that's adorably babylike.

And this is just silly.

But whilst she might still enjoy cuddles on my lap, and whilst she might still need certain care not dissimilar to that I might give to a baby, I know of no baby who can be as insultingly sarcastic as Miss Mog, without ever having to utter a word aloud.

Here's to the next eleven years!
Tia

The force is strong strange in these two.

Take one busy, active, intelligent six year old boy who lives, sleeps and breathes Star Wars. Add one determined eight year old girl who has no idea about anything Star Wars related, apart from the fact her friend really really likes it. I should probably rectify that. Maybe.

Anyway, it's not a particularly likely partnership. But somehow it works

 Biscuits and cakes get baked and sampled and smeared across the kitchen floor

 Neighbours and passersby are perturbed by the appearance of two Jedis; one who doubles as a Ninja without extra pay.

 The grass gets crushed into submission, to teach it to grow when the gardener is away.

 Miss Mog gets to sit and listen and giggle mightily all day long.

And I have the satisfaction of a small child fast asleep before half past six in the evening.

I'll spare the Ninja Jedi the photos of his stint as hairdresser, good as he is with a very girly purple comb.

And I'll spare the world the sight of the Doctors/Police/Ambulance/Hospital/Dark Side mission which seemed to involve bare toes, many arrests made with the aid of a bandage and a yoyo, and a largish box of pencils.

But a good time was definitely had by all. Friendship. Strange but true.

I'll leave tLP with the last words "Mummy, Mummy, he has left something behind. He really has left something behind, look Mummy, he has left behind ME."
Tia

Geoff Clark, UKIP, and my little girl.

I don't as a general rule bring politics to this blog. I'm not a party member; I do vote, and I haven't entirely lost confidence in the hope that somewhere under the spin there may well be some MPs with integrity. In all parties. However much or little I may agree with their world views.

But I can't ignore this.

Geoff Clark, a UKIP candidate, has suggested that abortion be made compulsory for foetuses found to have Down's Syndrome, Spina Bifida, and other syndromes which "would make them a burden on the state as well as on the family."

And according to the article linked above, a UKIP spokesman has defended his right  to hold these views (and other fairly unpleasant but not disability specific views), and suggested that he would make an excellent candidate.

Mr Clark has now, apparently, apologised.  If you can call it an apology. He "meant no offence" and he wishes us parents well. It seems writing something quickly, whilst being unaware of the views of the political party you represent is an acceptable excuse for advocating something one step beyond the eugenics of the Nazi party.

UKIP have now distanced themselves from his views and suspended his membership.

But I can't help wondering, do they really genuinely distance themselves from his views, or were they surprised by the outcry his manifesto has produced, and have they had to move on swiftly from backing him as an excellent candidate despite his rather unfortunate views?

And, in case you're thinking he might have a point regarding out of control budgets, answer me this. Is my daughter a burden? Or a blessing? 


True, she's one expensive chick. She's pretty high-maintenance. She's just spent the morning in hospital, having a minor procedure under general anaesthetic, and I don't like to think about how much that might have cost.

It's also true that when she was born, and when the full extent of her disabilities became apparent, the doctors around her didn't think she would survive. She left hospital, not because she was better, but in order that she might experience love, ordinary things like the wind on her face and raindrops against a window, rather than spend her remaining days in SCBU's basement broom cupboardlike side rooms.

But those doctors were wrong, and Geoff Clark is wrong - how can you see her as just a bundle of debt?

Whatever your opinion on abortion as a woman's choice, compulsory abortion can surely never be acceptable? And if it is, I don't want to live on this planet any more.

Tia

Growing Up

I have just dropped the Little Princess off at her Brownie Sleepover. She had a practice run back in the summer, staying until bedtime and then coming home. At 11PM, still full of joy and enthusiasm and thinking that she might want to stay next time.

So when this next sleepover came, tLP was quite excited. And then worried, and then excited again. And then we started making plans.

Our aim was to be free from overnight tubes by this point. We haven't quite managed that, but she is able to direct one of the Brownie Guiders well enough that hooking her up won't be a problem.

She didn't want the Brownies to see her on her Nippy (ventilator). And she was worried that it might be too noisy. So she spoke to the respiratory nurse herself, to ask if she could leave it off for one night. And received permission to do so.

She has gone without her gastrostomy extension tube, and so will be taking all her meds orally. Even the ones which don't taste nice. She has chosen to avoid the leg bag option, and will therefore have to take responsibility for noticing when she needs to cath. She has stripped down her morning and evening routines to the bare minimum, and is confident enough that I know she will either manage herself, or manage to direct others to help her with all the bits she really can't avoid doing.

And she has remembered her torch, her apron, her pencil case with sharpened pencils, two pints of milk, and her craft tubs.

Not bad for seven!
Tia

Service with a ?

The cute, and the not so cute.

First, Grolly. Those of a sensitive nature, or perhaps unused to the less pretty parts of complex medical needs may perhaps wish to focus on Grolly and then move on swiftly, without reading the rest of this post. Don't say she didn't warn you.

Next, weirdness. Mog's had a gastrostomy for about eight years, and I worked with children who had them for a good five years before that. That's a lot of feeds and meds, a lot of plunging syringes, making connections, blocking and unblocking. But I've never had this happen before.

 For those not sure what they are seeing, I am pushing some feed into Mog's tummy via her gastrostomy. The yellowish tube is connected to a syringe (out of shot, ran out of hands!), and I am pushing stuff through it. It runs through the button (white and clear plastic bit) and directly into her stomach. 

So far, so normal. 

What's definitely not normal is the purplish goo (her food) dripping out of the side of the button. That hole should have no direct connection to her stomach; it goes into a little balloon which we fill with water. The balloon holds the button against the side of the stomach and stops it falling out, like an earring stopper. 

So I'm pushing food in, it is somehow going into that water-filled balloon and then forcing its way out of the balloon port valve. Every day a new adventure. 

And then finally the gross post.Don't say I didn't warn you.

Here's what happens if you use mepitel on a burst blister, and the skin decides to go mad with healing itself, and grows through the mesh in the twelve hours the dressing is on. It's looking much better today, I'm pleased to say, although somehow the toenail has peeled off. How did I not notice the loss of a toenail? 

Both girls are falling apart a little. Mog's gastrostomy is still nastily sore, and she has another patch of soreness which isn't healing up. And the roof of her mouth appears to be leaking yellow goo, as of this evening. tLP is now toenail-less, whilst both her buttons are leaking, and her Mitrofanoff (artificial thingy whereby her bladder is linked to her tummy button via her appendix) is a little shocked too, after she attempted to insert a pencil into it to stop it from leaking. It's a good job we've got respite this week!

Tia

Miss Malaysia 2012

In my youf days, I travelled a bit. Scout Jamboree in Korea, hospitality in Japan, a year in California with my family, countless camping trips to France, and then just before I started fostering, three weeks backpacking around India, again with family. occasional forays into Other bits of Europe scarcely counting as travel. It was a good childhood.

I'm not as brave as Mum and Dad. Three weeks under canvas, moving every two to three days just isn't for me. And I can't see myself taking the girls to any far flung corner of the world. True, we've done Florida a few times, but I'm reasonably confident that the health system there would handle anything the girls might throw at it. So we stay mostly within the confines of Europe, knowing that an EHIC and a spot of open wallet surgery will get us out of most emergencies in more or less one piece.

Mum and Dad meanwhile continue to shrink the globe, visiting family and ex- post grad students and old friends, attending conferences, weddings and whatever else comes their way. And continue to build up our international dress stores; forever useful for Baden Powell evenings and overdue homework.

Except I've now spotted the flaw in the plan.

It's relatively easy to drape a Sari around an immobile child, safety pin it to the wheelchair, and not have to worry too much about the actual fit. But when your more mobile child needs an international outfit for the end of World Week, and it needs to hold together when swapping wheelchairs, and for self propelling as well as steering the tank, you can't really staple the Kimono in place. And the Han Bok hangs off, and the shalwar kameez looks like a sleeping bag.

Time to simplify. Happily, there is one style of dress which adjusts for all heights and widths. Enter Miss Malaysia!

Tia

Ps - the Scots have their Kilts and the Welsh their lovely bonnetty things - what do we English have?

Perception.

We took tLP's powerchair to Florida. And I'm forever thankful that we did. Freedom and independence, and the ability to help rather than hinder (doorway hovering aside). How much better to be able to push a wheeled suitcase yourself rather than having to be pushed alongside the suitcases? We would have struggled without her assistance.

And when the choices are powered chair, standard issue NHS manual chair, or buggy, the powered chair suggest a child who is in control, able to make their own decisions, and who is used to wheeled mobility.

The NHS chair seems to suggest child with a broken leg, child with a temporary disability. And for tLP, it suggests child incapable of doing anything for herself, who should have everything brought to her rather than making the effort to propel herself. I'll ignore the super whizzy manual option, because we don't currently have one which does everything she needs it to do properly.

Put tLP in a buggy and she pulls her sleeve over her hand, sucks her thumb through it, and reverts to babyhood. And the general public ignore her size and see an overlarge toddler, occasionally suggesting she is lazy and should get up and walk.

Happily, with functional arms, decent vision, and a reasonably symmetrical(ish) body, lots of options are available to her, and she and we can choose according to the needs of the moment or the day.

Being a little afraid of personal liability issues, we went for the smaller slightly lighterweight chair rather than the tank; a good decision as space might otherwise have been a little tight in both taxi and hotel rooms. And the inevitable foot-squashing is only very painful, not land-you-in-hospital-and-limp-for-weeks painful. But still, she had her little yellow zippy thing, and we had a happy girl.

We have fewer choices for Mog. Whilst I know there are technologies out there that would enable her to drive a powered chair, even with minimal vision and maximal seizures, it's not something we've pursued since she outgrew her BIME buggy. Her energy is limited; she tends to doze as we push her around and then wake up when we stop moving, to check whether what's happening is interesting or not.


So we have supportive, comfortable, wheelchair, slightly outgrown (new one hopefully coming next week!). Infinitely repositionable buggy. Or three wheeler. Not expecting much snow in Florida, we went for the wheelchair option. It's a biggish beast for a not-that-big-really girl. She's ten, she wears clothes a couple of sizes larger, mainly to accommodate stiff limbs and extra padding. The chair though is just ever so slightly too wide to fit through standard doorways with ease, once her switch has been added. And it's long and tall and deep, and if she's cold then she needs a full-sized blanket (or three) to snuggle in.

One small child in small yellow wheelchair; it's too small for her really but we'll hang onto it as a back up for as long as we can. And one leggy girl in long black wheelchair; no longer a feed pump but with communication switch and various bits of kit hanging off every possible hanging point.

People respond to tLP. She's a very chatty person; she likes to know the ins and outs of everything, and assumes everyone wants to know all about whatever it is we might have been doing. We're working on a filter. It hasn't worked yet. And people are drawn to small child zipping along in a chair which at first glance looks like a junior mobility scooter, until she demonstrates the rise and fall and extreme maneuverability. Mostly, they smile, make a positive comment (or one they think is positive), and then get to listen as she pours out whatever's currently on her mind. She's very keen to include Mog in all this, will draw people over to her sister, make sure they know Mog's on holiday too, talk about how unfair it is that Mog got to go on Thunder Mountain and she had to watch; we try to get her not to tell people all about Mog's latest poo, but, as I said, no filter and a big assumption that everyone things things are as interesting as she does.

Still, I wasn't quite prepared for the comment from the lady behind the desk. A nice chat; tLP demonstrating the chair's finer points. "And how old are you, honey?" "Seven." "And how old is your baby?"

Rewind... Yes, Mog's sleeping, she's reclined in her chair, and she's all snuggled up because the air conditioning makes her feel all cold. But side by side, how can you really think Mog's the younger of the two, let alone a baby?

Tia

All-American Girl!

Minnie Mouse watch, T-shirt and water bottle. New top and trousers. And very very best of all, trainers which light up when she kicks.

Oh - and went to bed at 6.30 UK time, woke up 16 hours later at about our normal US getting up time last week.

And now to buy sausages because she's not that American and wants some home comforts!

Zzzz

Is it bedtime yet?

Blurry but good

We had lunch with Pooh today. And ROSY friends; not that kind of poo...

It's a bit of a tradition for us. When we came out here with Goldie, a little while before her 18th Birthday, we knew we'd have to get her to meet Winnie The Pooh and friends. One of her favourite stories - but only if read by Grandma - was about the big plot to unbounce Tigger. Tigger Bounced, and Goldie laughed.

But we knew Goldie wouldn't be interested in queueing in the heat for a quick cuddle; much better to fill her full of food and hope she'd be relaxed enough to enjoy meeting the Real Thing.

We went on the Winnie The Pooh ride, where she had extra opportunity to prepare by getting stuck in front of an extra bouncy Tigger for half an hour or so during essential maintenance works.

And then we went to eat. Yummy food, and lots of it, and Goldie was ready to face anything.

And then it happened, and someone managed to catch it on the camera. Goldie saw Piglet. And Piglet saw Goldie. But what makes this most favourite photo of mine so special us that it's not just Goldie smiling at Piglet. She isn't looking at him at all, actually. She's looking over at me, grabbing my shoulder, pulling me over to share her joy at seeing Piglet.

And that was a huge, huge step for Goldie. She wasn't just enjoying this, she wanted me to share her joy. Lovely.

And when everything bad happened just a few short months later, we were all even more glad that we had managed to bring Goldie over here, and that she had so clearly enjoyed it.

Fast forwards six years, and two small and not-so-small girls have enjoyed it just as much. Mog was dozing, as she often does when the rest of us eat, until she caught sight of Winnie coming towards our table. Giggles and glee and general happy happy joy joy.

Utter bliss as he came towards her - never mind the other children (and adults) at the table; Mog's face showed a dream come true. She tells me Yes she likes Winnie the Pooh, Yes she likes the others too and Yes she likes their stories. I didn't know that - I should have done; yesterday she decided she wanted Winnie the Pooh badges to decorate her new chair, and we now have all except Piglet. I spot a theme coming on; might make for some different Christmas presents this year.

I'm not sure we'll ever get back here. The girls are getting bigger; Mog's getting twistier and tLP is about to be rodded and straightened, and I don't think either of them will enjoy the flight very much.

This was supposed to be our last big holiday - uncertain health meant our travel insurance just for the week cost more than a thousand pounds. Add in flights etc., and we certainly won't be coming back any time soon.

And yet - that smile, that joy - how can we not try to make that happen again at some point?

We shall see.
A good day though; memories of Goldie linking with memories of other friends, not friends I'd associate with Disney necessarily, but on our minds today. And an army of too-soon-absent children very present with us as we watched parades and rode boats through a Small World, and wished this world a little smaller just now as the distances are definitely too far apart.

Tia

Epcot

A gentler kind of a day today. England feels a long way away when friends have had the worst kind of a day and we can't be there, not to comfort necessarily but just to be there.

But small children need entertaining no matter what, and I'm sure our friends wouldn't have wanted us to stop everything. So, Epcot.

Clam rides with Nemo and boat rides to hydroponics factories and a quick trek around the world including arguments with trolls.

A lost child; tLP ran off, and you'd think she'd be easy to spot but she wasn't. I think she scared herself nearly as much as she scared me though.

Pizza for tea and a bottle of wine and toasts to absent friends, never out of our thoughts even as the warm balmy sun eased stiff muscles. The kind of day when you can feel the vitamin D seeping in through the skin, and when fresh Florida oranges (thank you, Alesha and Doug) drip vitamin C Togo with it and health and vitality jars with the news from home.

Tomorrow, back to the Magic Kingdom, and tonight, sleep. And thoughts and prayers with our friend's - I thank God that 4,000 miles is nothing to Him, and He can hear our prayers from here whilst being with our friends there. Or, as tLP put it "I think my Daddy God is very busy at work today"

Tia

We Ride the I-ride

I can't say how nice it is to be able to turn up without any kind of appointment or prearrangement, to know that within the next twenty minutes a bus will turn up, and that it will have space for two girls and their wheelchairs.

To know that the driver will have no hesitation in getting people to shift down the bus out of the wheelchair spots, and that there will be not just space, but four point tie downs, on each and every bus, is impressive.

Add in the fact children travel for free, adults travel for not a lot, and no one else on the bus huffs and puffs about the time it takes to clamp the girls in, and you have a transportation system which really works. Provided you ignore the fact that some of the drivers don't know how to operate the lift, that is. Thankfully, their radio link person seems to have clear instructions, and on the one occasion the lift wouldn't cooperate at all, the supervisor turned up in an empty bus within minutes, and beat it back into submission.

We like. It makes it possible not to drive, it means we don't need taxis everywhere we go; we can in fact be tourists just like everyone else.

Of course, when the ahem charming child behind me decides to use my admittedly well padded rear end as a foot rest, I think the taxi option might not be such a bad option after all...

Tia

Sea World.

One of our most favouritest places in the whole wide world.

One super happy Mog, singing away for all the shows.

One slightly terrified Little Princess, very disconcerted by a 3-D movie shot from the perspective of a baby sea turtle.

One awfully big adventure, when the lift on the I-Ride trolley broke and it looked like both girls would have to stay on board forever. Until the supervisor came and did the magic turn it off and on again manoeuvre;at which point tLP led the bus in around of cheers and applause.

A properly Good Day.
Tia

Disney

Much fun in the Magic Kingdom. Mostly. Mog sadly was very uncomfortable most of the day, but stopped crying long enough to enjoy Thunder Mountain, Pirates on the Caribbean, and a twirl on the Teacups.

The Little Princess enjoyed the lot, and I'm hoping to steal our friends' photos of her and the other smalls waiting for the parade.

Lots of fun, minimal whinging (Mog aside), and a gentle baking sun. Lovely. Tomorrow we are off to Seaworld, where I hope the manatees and dolphins might help put her into a better mood.

Tia

Longer Letter Later

Or earlier. Or at some point.

We got to the hotel. It was a leetle cramped, but fine. Our taxi arrived in plenty of time, we had fantastic assistance at Gatwick, the flight was a little delayed but fine, and the wheelchairs survived the flight.

We had great help again at Orlando, found our friends who seemed to be as pleased to see us as we were to see them, have a nice hotel and have just had a meal at Denny's.

And now it's either 9.30 or 2.30, depending whose clock we're following. But either way, the walls are swaying and it's bedtime. Least stressful flight ever and both girls have coped outstandingly! And I'll probably find something more interesting to say tomorrow, but for now, goodnight.
Tia

Insert suitably witty title here when less tired.

I had a certain feeling about today when it started, not in a peaceful and gentle realisation that the night was over and the morning was here, nor yet in the summons from a needy child, but by the insistent sound of one (possibly two) cats sharpening their claws on my headboard; a technique they have perfected in recent days and one guaranteed to have me sitting up before I've opened my eyes.

Miss Mog is now halfway through a course of flucloxacillin, following on immediately from a week of amoxycillin, which follows swiftly on from a batch of co-amoxiclav, all of which is being washed down by her regular azithromycin. I think she may be sterile. Certainly, there's no hint of green anywhere near her copious secretions, the large pink throbbing circle surrounding her gastrostomy has shrunk significantly and is showing signs of returning to normal. Her bowels are possibly the sprightliest they've been in a good long while, and any vaguely hormonal spots appear to have packed up and headed south for the winter.

Two days dairy free have done a lot to improve her antibiotic discomfort though; so it was a shock to discover her silently screaming under her mask this morning. A scream which became significantly less silent when we removed the mask, but resolved itself fairly soon. She wasn't interested in explaining, so I settled for being happy that it wasn't an issue any more.

Meanwhile the Little Princess woke up in an "I"m not going to church so you can't either, HAH" mood. Resisting the urge to retort with "Well I'm going and you're too young to stay home alone so you have to come with me HAH DOUBLE HAH" (although I'll admit the temptation was almost overwhelming), I settled for a reasonably rational "Never mind, I'm sure you'll enjoy it when we get there." I do occasionally get to play the adult. It's rare enough that I feel I should record it when it happens.

Not the most auspicious starts to the day though. I did however manage a very nice warm shower all by myself and reasonably early on, meaning that I was for once fully dressed and very nearly polished (or as polished as I get) before our carer turned up. Shame about the kitchen, but then the cats had had great fun with the two-years-out-of-date coley fillets I'd found and ejected from the back of the freezer last night. At least they weren't totally wasted; the cats really had had quite a lot of fun punting them around the floor most of the night.

Still, clean clothes, clean hair, straight parting; it doesn't come much better than that around here. A shame then, that an explosive bowel incident (not my own!) coated not just three walls of the bathroom but also hit rather closer to home.

OK, cleaned up, two girls somehow dressed and polished, neither coughing or showing any signs of illness - bowels being more disability related than anything new and interesting. One ham sandwich cut into heart shapes (how did this get started), one tasty home-made-almond-milk* based smoothie smushed rather more hastily than usual, one carer harried out of the house, and we were in fact off to church in decent time. Albeit with a reasonably large trail of devastation ranging throughout the house.

To church then, and Miss Mog opted to stay with the adults rather than heading for the mayhem Godzone children's stuff. And behaved very nicely, and enjoyed the worship, and I don't think people objected too strongly to her delayed joining in. She voiced her enthusiasm for the sermon quite thoroughly, and then decided to drown nicely towards the end, forcing us to leave to calm things down a little and to enable the rest of the congregation to hear at least some of what was being said.

Little Miss Innocent all through coffee; "Who me? I wouldn't make a sound", and then home where a nicely bland and dairy free chicken casserole was waiting to be blended for Mog and flavoured up a little for the rest of us. An equally bland and kind on the stomach fish pie also blended, music CDs burnt for staff who can't work an iPod, a bag packed, (and if it takes me three hours per bag for Florida then I should have started last week, oops) and equipment gathered together for a trip to respite, and we were just about out of the door after a reasonably hurried lunch.

Into the bus, and once again Mog demonstrated why exactly we really need our new bus with her spot up at the front next to me. It's never good to be driving down the dual carriage way, to hear  large cough and silence, and to have a small child say "Mummy, Mog's upside down in her chair." Coughing her way off the seat and down the side of the chair is really not a great new talent. And a three point harness doesn't stop it - roll on new chair as well as new bus. Now please. 

Back to Mog's second home - we missed a few nights for various reasons, so she's had extra respite this month; I miss her but two lie-ins a week has been really rather lovely. A quick run-through all her new meds and protocols (you wouldn't believe what's changed just since Thursday), a check of email address to email a copy of her talking book, as our very nice printed one seems to have gone AWOL - rewards may be offered for its swift return - a discussion about feeding and everything else under the sun and finally tLP and I were back in the bus and ready for home.

Detouring past various petrol stations in the vain hope one of them might have diesel at a cost not requiring a second mortgage (for my US readers; the cheapest I can find is $10.40/gallon), successfully avoiding McDonalds, tLP and I arrived home with only a camping saucepan full of wee (she's developing an obsession with self cathing in the car; I'm all for independence but I think she's taking it a little far) to commemorate our trip.

A request was made for chocolate Brownies. Not wishing to sabotage my last ditch plans for a week of healthy eating before we hit Florida (with all its Funnel Cakes and Blueberry Bagels and other yummy stuffs), I was rather pleased to find a recipe for just two Brownies. Found one which claims to make just one 95calorie Brownie too, but oh dear, I had no yoghurt, and so had to go for the double version instead. We mixed, we poured, we licked the bowl and baked the Brownie. We actually had a whole five minutes without any kind of frustration on either side. It was good. Chocolate is good.

And then we returned to the battle of wills over drinking, over how we don't throw things on the floor because then we run over them and they break, how we don't ever EVER pour water over iPads and computer keyboards, and how STOP means cease and desist immediately, not just when it happens to suit you, and how spitting is Never Allowed, and how bedtime really is going to be very soon and how tiredness is Not An Excuse, and on and on until I was tired of the sound of my own voice and certainly tired of the sound of "well I'm sorry, but...", and thankfully the Brownie was baked, or nearly, and so we split it in two and poured it out onto plates, and nibbled together. Food, the great healer. And we had switched the cocoa with drinking chocolate, since cocoa had we none, and tLP the gourmet tasted hers and declared it officially too sweet to be a proper Brownie (and she was right). I have great hopes for her cooking ability.

Our evening carer appeared and persuaded tLP into a bath. And tLP shouted long and loud about the wrong way to wash her hair, and the wrong way to wash her bowel and spoon, and the wrong way to be hoisted, and the wrong order to get into bed, and I considered trying on her ear muffs but settled for a baked potato and some pumpkin and cashew nut soup, and decided I'm unlikely to lose 2 stone in the next three days, so I may as well enjoy eating all the good things we have around us. And there are many such good things all around us at the moment.

And still she shouted on, and meanwhile I attempted to email respite a copy of Mog's talking book. And one hour after I first began the attempt, I think the sixth version of the email address has finally gone through without, so far, being rejected. A missing r, a missing ., a rogue k, a missing r and a rogue btconnect; a frozen mail server, a forced computer shutdown, and finally I think I have just about managed to send three attachments to the same place, where I hope they will be able to assemble them in something vaguely approaching the correct order, and Mog will have a voice again. And then of course the pink file will turn up again. Or at least it had better.

Meanwhile, tLP, wrestled into bed, suddenly morphed into the most charming and caring child on the planet. And begged please for a nice Bible Story and now won't you ask me questions about it to help me understand it and now I just want to check these little bits and HEY NO I'm not tired at all (but oh boy, I am!). And so we Snuggledy-Buggeldy-Ruggedly'd her up tight with Tummy Pig and Special Blanket, and she asked me very politely to close the bedroom door, and I did, and there was silence.

Until suddenly there wasn't, because Stealth Cat had decided to disguise herself as a pair of school trousers and so had been left behind in the bedroom, ready to leap at the first sign of a sleeping child.

Cat extracted, we said goodnight again as Mummy and daughter, and as friends, and if not letting the sun go down on your anger isn't quite as good as not letting yourself get that angry in the first place, it does I think come a close second.

And now she's asleep and the cats are asleep, and the kitchen no longer reeks of fish, but I've just remembered the load of ashing which has now been in the machine for 36 hours, so I had better go and extract it on the way to my own superbly comfy bed.

Tia

*brag alert

Proud Mummy

Reading for pleasure. Lovely.

Tia

Yo ho, yo ho,

A Pirate's life for me.

School assembly,
Whatever can we be?

The Little Princess/pirate had a line which she has been practicing diligently "We are often older pirates who are not skilled at cooking."

She had consistently refused to explain what the not-skilled-at-cooking pirates do on board ship. And now following a really rather fabulous assembly including dancing and singing and proper uninvasive inclusion, I have the answer.

No prizes, but copious smug points to anyone with the right guess!
Tia

On the move?

We've lived here for a while now. Nine years, almost to the day. This has been The Little Princess' address ever since she moved in with me, and it's been Miss Mog's since she was 15 months old.

We moved out of our old house because, beautiful though it was, it was not suited to the needs to two wheelchair users. Into our old house moved a family whose previous house was not suitable for their disabled daughter. And into that family's previous house moved another family, whose former house was not suited to the needs of children with disabilities. All change. And all, as far as I know, happy in our new homes - certainly, none of us have moved out just yet.

One of the first things to happen when we moved here was the installation of overhead hoists in what was then Goldie's bedroom. In what would turn out to be an interesting sequence of events, Goldie had been scheduled for a minor op the day after we moved in. This minor op had the unintended consequence of landing her in bed for more than a few weeks, as her healing was somewhat slower than anticipated. And so it was that the installers had to work around a bedbound Goldie, creating a den for her in her own bedroom, barricading her into a corner with her wardrobe and chest of drawers, draping a canopy of dust sheets over the bed as they drilled and hammered, and took eight hours to pound their way through a significantly more complicated than anticipated ceiling track installation.

She loved it - mammoth amounts of noise and chaos and confusion, and a captive audience for her retelling of the Three Little Pigs and "Gordilocks and the Three Beers."

I'm not sure they were quite so enamoured of the experience.

But still, eventually it was done, the hoist was installed, and over the next few years we would gain further hoists in the bathroom, Mog's bedroom, and playroom.  Each of these hoists would be serviced every five to six months, and so over the years we've had a number of different hoist engineers bringing slips to sign to prove their presence. Goldie's room became the Little Princess' room, green and gold moved via an underwater phase to its present extreme pinkness, the names on the forms changed, but the engineers have stayed largely the same.

And now, to facilitate tLP's independence, the hoist in her bedroom needed to be swapped from the standard button for up, button for down, pull it along the tracking to slide left and right type of hoist to one with four buttons, so she can slide herself left and right. I'm not entirely certain I like the idea of her being able to get out of bed by herself, but I suppose we can't put it off forever.

I had a letter a few days ago, informing me that the hoist would be swapped shortly. I had a phone call yesterday, confirming that the work would happen today. And then today, I had a phone call from the engineer, claiming to be standing outside our house waiting to be let in. Except that he wasn't; he was standing outside our old house, the one we moved from nine years ago.

Somehow, despite the letter having been sent to this address, the company have my old address listed as tLP's current address. I'd think this was simply outdated records, except that tLP has never lived there, so someone must have manually inserted that address into her file.

And then let's add Miss Mog's current address confusion; one branch of the hospital appears to believe that she lives at her respite centre. Medical records claim the only way we can change this is for Mog herself to write in with her correct address. Again, this is not an address which has ever been Mog's address, meaning that someone has taken the time to update the records, incorrectly.

Somehow, independently of each other and myself, both girls now have alternative addresses. I wonder if someone is trying to tell me something?
Tia