We wants your moneys please

A nicely peaceful uneventful day. We tried tipping Mog right back in her chair this morning and she seemed to cope with the transition from her bed much better - perhaps moving to upright is contributing to her discomfort. Started to make macaroni cheese for lunch, and then realised we had no cheese. Or butter, or eggs, or flour. So took a quick trip to Budgens and then bad a slightly later lunch than planned.

Our cleaner came after lunch, and Little Fish decided to be her little helper. So as Mog and I relaxed in peace, LF and Alice polished the house for me. A damp cloth and a listening ear, and LF was enthralled. Bliss all round, except possibly for Alice.

Alice's time up, Little Fish trundles back into the sitting room. "We are all finished being the cleaners now and we wants your moneys now please" was her intriguingly phrased request. So, two paper moneys for Alice and ten copper moneys for LF, definitely moneys well spent. And then Little Fish at the door "Bye, Mumma, we are the cleaners for another house now."

I should have let her go - they would probably pay more than I do!
Tia

It's not all about the afterlife

I was having a conversation with a friend a while back, and it got derailed halfway through, as all too often happens when there are children in the room. An interruption, a side track, and then twenty three other bits of conversational thread get picked up, and somehow the bigger point got left behind.

We were talking about faith, about beliefs, about being a Christian.

I'm not sure what I understand about Heaven, except that I'm pretty sure I don't understand. The thought of meeting up with friends, children, loved ones; the idea that death isn't final, that is a comfort. But it's not the hope of Heaven which gets me through the day. It's chocolate. Heaven's great; I quite fancy the idea of a new body myself if it works out that way, although I can't really picture Mog walking and talking, and I'm not at all sure she needs to be able to walk and talk in order to be any more of a person than the person she is right now. So I'm happy to sit back and not worry too much about trying to understand how this whole afterlife thing might work.

And I'm happy to do that, because for me, the whole faith thing isn't so much about what happens next. It's about what is happening now. It's about never ever being alone. It's about a constant dialogue - in which my voice is all too often drowning out the other half of the conversation - but the replies are there, when I'm ready to listen.

Faith is not about being a saint, and it's not about being perfect or even good enough, and it's not about some kind of cosmic balance. It gets a bit messy when I mix it with trust; do I trust God with my girls' futures? Absolutely. But do I trust that His will and my will are going to be perfectly meshed in this matter? Not right now. Do I trust Him to keep the girls safe overnight? Definitely - but I'll keep the monitors and the breathing machines please. Just in case.

And yet, time after time I've been woken just in time, even without them. "Something" woke me and made me go down and check on a fosling in the early hours of the morning, a fosling I never disturbed once he was asleep as I knew he'd wake and need entertaining. I walked in; he was having a totally silent seizure. "Something" prodded me to go in and check on Goldie one morning on my way downstairs, when my usual habit at the time was to bypass her bedroom, make a cup of coffee and her breakfast, and come back upstairs with it. And as I walked into her room I watched her, pinned on her back by a medieval torture device sleep system, vomit totally silently and whilst totally unable to turn onto her side.

As I write the above sentence, I'm sitting here wondering why that same God Prompt did not intervene to save Goldie from a scalding soak, seven years later. And I'm reminded that there were many many different factors involved in her death, many hands all playing their own tiny part. If the bath had been correctly fitted, she would not have died. If the bath had left the factory with the thermostat set to cold, she would not have died. If the carers had had a thermometer, she would not have died. If Goldie had moved to a Care Home not Supported Living, she would not have died. If I had said she could stay with me, she would not have died. If we'd had her home for that bank holiday weekend, if there had been more training, more time,if, if if...

So many different factors - and an apparently blindingly clear hindsight. We all have free will, we can all choose to do the wrong thing, and we can all make choices which have a negative impact on others. Give me a God who intervenes to prevent us making the bad choices, and ultimately God's people become robots, slaves, with no freedom and therefore no ability to make the right choice either. If I accept that we should all be free to make our own choices, then I have to be willing to accept that some people, probably not the right people, will face the consequences of those decisions.

Another derailed conversation, and I can't blame the girls this time as they're both in bed.

Back to Faith. Faith is remembering that the same God who woke me to clear Goldie's airway seven years earlier was right there with us as the rest of her body packed up. Faith is knowing that He was with her in her suffering and with me in my mourning. Faith is choosing to believe that God probably does have Mog's future in His Hands, even if I can't see it myself. Faith is knowing that God loves my girls so much more, and more perfectly, than I ever can or will. Faith is knowing, without understanding how or why, that Goldie is and was and will be safely held. Faith is knowing that, no matter what happens, no matter how it happens or when or why or where, that neither I nor the girls will ever be facing it alone.

Faith is believing that no matter how horrible I've been, there's no way in which I can fail which will ever cause God to stop loving me. Faith is believing, without necessarily rationally understanding, that it will all be alright in the end. And that it is all alright right now, even when it isn't. Faith is being sure of what we hope for, and certain of what we do not see. And faith is what gets me through the day.

I'm pretty sure what's more or less what I wanted to say to my friend.
Tia

Spots and blots

Here are the splots
And this is the blot
Last time this happened, we assumed she'd burnt her foot on a red hot footplate on a blisteringly (literally!) hot summers' day. That's definitely not what happened this time. It wasn't there in the morning, we put her (very close fitting and never marked before) socks and splints on in the morning, and her foot was fine. Took them off in the afternoon and her foot was still fine; ten minutes later her heel looked like this.

Any ideas?

Tia

BureauCrazy

I'm still pondering this one.

Mog had a majorly bad spasm this morning; really very far beyond painful, everything locked and twisted. I gave her a shot of diazepam and as it took effect she looked hugely relieved and promptly passed out on us.

So, Mog on the floor, clearly not going to school today, we send her bus off without her and with apologies. It's time for Little Fish to go to school too, and Mog is still passed out on the floor, breathing fairly heavily as everything unlocks and relaxes.

Our carer offers to stay with Mog as I walk Little Fish to school. It's a kind offer, but she isn't trained with suction, so I turn it down. She then offers to take Little Fish herself - it's a ten minute walk, LF knows the way (out of our house, turn left, keep going straight and you can't miss it, follow the other 400 children in red uniforms). Little Fish is very excited about this idea, it seems to be a great solution, and we are just getting ready when I decide we ought to call the office, just to make sure the carer won't get into any trouble for helping us out.

Hmmmm, says the office. And then after a few minutes' thought when they want to know why the carer can't just stay with Mog whilst I run Little Fish to school, they decide this can't be permitted as it is too much of a risk. But "Please tell Tia to call us if she needs any help."

So, I gather the comatose Mog up and fasten her into her wheelchair. I bump her along the road to school with Little Fish; the movement disturbs her peaceful slumber and she goes into a seizure instead - which I can't treat, as I've already given her diazepam for the spasm. Bump bump, motorbike and noisy bus, children shouting and bump bump bump, every noise and every bump another small seizure, off to school and back again and then finally she is free to rest and sleep off a miserable morning.

I'm still puzzled though. For a grown woman, with children and grandchildren, with a CRB form and references and, one assumes, a decent amount of experience in walking in a straight line, to walk a small child to school is considered too much of a risk. But to allow that same woman, despite not having the relevant training, to stay with an unstable child whilst I walk to school and back again (so doubling the time spent alone with the child) is not too great a risk. And for me to have to risk fairly impressively big seizures (as well as a return of the spasm) by dragging Mog with me to get Little Fish to school is not considered too much of a risk either. Or is it simply that it would be my risk, not theirs?

And, given the refusal to allow the carer to help, exactly what help did they have in mind when inviting me to call them and request it? Meanwhile, I'm researching lie-flat chairs which would at least make the journey bearable for Mog. Anyone got any suggestions? I think it's going to need to be a buggy rather than a wheelchair as the handles on the wheelchair tend to disappear when you recline it.
Tia

Woeful Wednesday

A woeful start when Little Fish woke ridiculously early, and tried to place the blame on Monty, the class monkey, who had come home with her last night. A wobblily woeful breakfast and plod to school, with a thankfully lightning switch to happiness on spotting classmates and having time to chase them around the playground.

A spot of woe is me back at home with confirmation that the hospice will not be increasing our respite provision, despite recognising the increased need. And the rueful realisation that my freehand embroidery skills are sadly as lacking as the ivories on my piano keys. I would not make a very good Austen herione. Then again, I suspect being a single parent would rule me out of her cast list anyway.

A woeful shoal of fish, sixty of them now in a sixty litre tank - is there really no one out there who wants some baby mollies? Free. Breed them yourself, feed them to your loaches, I don't care...

Suddenly the day is mostly over, and time to collect Little Fish. She runs her chair over my foot and into my ankle seven times on the walk home. I start with a gentle "watch where you're going, sweetie", moving on up through "OW!" and "please focus on what you're doing" to my final "WILL you watch what you are doing that REALLY HURTS and YOU HAVE TO STOP IT NOW" delivered at top volume right at the corner of the road; I turn away from Little Fish and limp stomp briskly ahead of her, promptly bumping into our Vicar. Bang go this week's good Christian parent points then.

We cross the road, we cuddle, we watch out for Grolly who has taken to waiting for us in a driveway and joining us for the last part of our walk home. She is not there, and a woeful Little Fish has to be persuaded to walk on without her before Mog's bus beats us home.

We have a nice gently giggly couple of hours before we do the bedtime thing, and we all feel all the better for it. Mog continues to giggle for the next few hours, until her own bedtime arrives; on landing on her bed she promptly locks into a full body spasm, and lies, rigid and screaming, fingers frantically hunting for something to hold onto and scratch, for the next hour and a half. Our sitter segues into washerwoman, hander-out-of-medications and cleaner, whilst I transform myself from Woman On Her Way to Housegroup into Stay at Home Mum. I'm not sure where that leaves me in the whole Christian Parent thing.

Peace eventually returns; diazepam and painkillers eventually force Mog's body to relax and she falls into an exhausted sleep. The CPAP is now fighting losing battle with the diazepam's ability to relax everything; it's a quieter snore I suppose than before, but I wouldn't suggest it's completely better. We increase the settings tomorrow; I hope that helps.

I've just turned Little Fish so hopefully that's her for the night. I've just repositioned Mog for the fourth time and she's still managing to obstruct, so now I have the choice to either sit and hold her jaw for the next we while or roll her onto the hip which seems to be the cause of much of her spasm and hope she's in a deep enough sleep that she won't notice. Something tells me it could be a long night.

Tia

Dear Carer,

A spot quiz for you.

These are oxygen cylinders.This is a box full of sterile medical supplies.
This is the basin in our bathroom.
And this is the nappy bin.
Where do you think soiled incontinence pads should be placed?

Hint - only one of these answers is correct. Additional incorrect answers would include on top of the nebulizer, on the floor, tucked down the side of the bed, on top of the SATs monitor or CPAP, behind the bedroom door, or on the kitchen work surface next to the feed pump charger.
Tia

Biscuit tin baking

So, what do you do when you plan an evening cooking with the Guides, only to be asked to vacate the church hall in order that the church can interview potential staff? Use one of the other outbuildings in the church, naturally. But then what do you do when other church people ask you very nicely if you'd mind actually not using that one either, as they need to set up for a special lunch the following day?

You could cancel Guides. Or change the programme, meet elsewhere, go for a hike, be flexible.

Or, you could just carry on regardless, swapping the kitchen for the carpark and the ovens for a handful of biscuit tins.

Hurrah for Camp Doughnuts!Butter the outside of two slices of bread, slap a load of jam in the middle, and wrap in foil.
Toss onto a fire. Extract somewhere after this point and before incineration is reached.
Dip in a plate of sugar (but we forgot this bit, don't tell the Guides).

Enjoy. Eat. Pick the burnt bits of and burn them further. Burn your fingertips on hot tinfoil, scrape your knees on gravel, beg for another one, negotiate for a flaming marshmallow, drink cold fresh water by the pint, leap walls into the field at the back to gather more sticks, then finally dowse the embers, bury the remains, gather up the rubbish, and leave a neatly sluiced carpark.

Tia

Necessity

The mother of invention.

A little manual wheelchair for inside, and a larger powerchair for outside. Visiting friends and family, we either drive and bring the manual in the bus, or walk (with the powerchair) and then Little Fish lap-surfs or commando crawls once we get there.

She's getting increasingly unhappy about this.

So, what do you do, when going to Grannie and Grandad's house, on the hottest day of the year, when the air conditioning in the bus has packed up? Strap the lesser chair onto the back of the bigger beast.
And then spend the day outside where you can't use the little chair anyway!

In related news, anyone know why our van's air conditioning is blasting out hot air?

Tia

A terribly boring post today.

Today we woke up at 6.30. We got up. We got dressed. We ate breakfast. Not necessarily in that order. And then somehow it was 11.30, and we left the house.

We went to the pet shop. They didn't want our baby fish - not even for free. They did sell us some ammonia remover, water conditioner, and bacteria booster for the tank, and allowed us to exchange a faulty gravel washer/siphon. Woohoo.

We went to the flower shop. We bought lots of pretty bedding plants and a ridiculously heavy bag of compost, which is now firmly ensconced on my passenger seat and looks set to stay.

We went to an Argos shop and bought a new clothes horse.

We recycled about a quarter of our outstanding cardboard. No one shouted at me for bringing too much of it, or not folding it properly, and no one leapt out with a clipboard to inform me that my van is too big and I need to get a commercial license for it. Progress.

We went to a sandwich shop, and Little Fish surprised me by choosing chicken over ham. And then surprised me again by eating the crusts. And not wanting the chocolate biscuit. Healthy eating at its finest.

We drove home, unloaded the car, and Little fish got her knickers in a twist about hearing a lawn mower and then a motorbike outside, and then retwisted them inside when she saw an ant followed by a fly and then a spider. This could be a long summer. I gather being shunted for hydrocephalus can actually make loud engine noises painful, something I didn't know until fairly recently, so I should probably start being more sympathetic about that. But I'm not sure how we're going to manage life generally if she goes into meltdown over every little insect and arachnid she sees from now on.

We watered the grass, and Little Fish tried to squirt our neighbours. Our neighbours don't want baby Mollies either. Not even as food for their loaches. Mog opted out today and lounged around except when forced into her chair for our shopping expedition.

We came back inside, and I attempted to sit down for a few minutes with a book but Little Fish decided that whilst she couldn't make me put the book down, she could in fact destroy the house and get my attention that way.

We cooked potatoes for tea, hung out washing, hung out more washing, fed the cats, fed the cats again, refilled their water bowl as Little Fish had sent it flying, and realised we forgot to buy dried food at the pet shop.

We ate tea, the girls shared a shower, and then Mog stretched out on the bench whilst Little Fish sat on the potty. They listened to the iPod together and I sat in the sitting room catching up on emails.

The girls went to bed. I closed the back doors, stroked the cats, briefly considered tidying up before heading back to the computer. And now it's three hours later, I'm sorting out some printing stuff and waiting for Mog's feed to finally beep. And getting annoyed with the waiting, as it's been running since 7 this morning. So much for a reliable rate of delivery - I put 1400mls in this morning and it claims to have delivered 1763 so far and still is not quite finished.

CPAP seems to be working better tonight which is good. Mog's mask is rubbing on one side of her face. Little Fish's mask rubs on the other side. Two different dressings to try.

I was waiting for the feed to finish before jumping into the bath, but think it's too late to do that now. So I shall fiddle around a little more with layouts and designs. And then jump into bed without that squeaky clean feel.

I told you it was boring!
Tia

CPAP

Without CPAP
With CPAP
She is fitting less, sleeping less during the day, and waking up giggling in the mornings.

She's also still very very stiff, having a lot of pain and spasm, having days (like today) when she cannot bend enough to get into her wheelchair for anything longer than a quick dash to get her sister to school. It's not a miracle cure. But, she's tolerating it well, and it seems to be doing nice things for her.

Or rather, it did, for the first four nights. And since then she seems to have worked out how to continue to obstruct even with air being pushed down her throat to keep her airway open. Which isn't quite so good. But, we're down to just one bigger obstruction (where she drops low enough for the monitor to alarm) each night, which is much better than six plus. I'd like to get back to the figures in that second picture. Meanwhile, I'm feeling all energised and bouncy from actually getting a reasonable amount of sleep most nights. I even cleared off the sitting room windowsill this morning - it must be Spring.

Tia

Car Wash

Hey, Mumma!No, Mumma, listen! I got an idea.

Pleeeeeeeeeeeeeeeeese?
Listen, Mumma, I know what we can do.
Can we give Gotcha a car wash?
NOOOO!!!!!!!

Tia

Insults and Indignities

Incontinence does not have to be an indignity. And we've seen big improvements in provision in the past decade - after inviting one incontinence "advisor" to leave after she told me my teenage daughter had no right to expect anything better than she was being given, and that anything more absorbent would be too bulky between the legs, and that wet patches and puddles on the floor were indeed more age appropriate than a bit of extra padding; well, after that, you'd hope things could only get better.

And they seem to be. We have lovely paper-backed, rustle free incontinence pads. We have catheters smaller than tampons. Shopping centres are slowly starting to put in adult sized changing benches; the indignity of stripping down in the back of a van in the carpark is reducing but not altogether gone. We can choose between nappy style pads, pull-ups, waterproof backed liners for regular underwear, or a combination of all these.

The indignity of having to pick them up from the doctor's surgery, cart them through the crowded waiting room and then across a busy part of town to the carpark persist; I try to ensure the child's name is hidden and the child is not with me at the time. Not always possible in the summer holidays.

The indignity of having someone administer catheters and suppositories regularly persists, but with age (and possibly with surgery too) will come independence. The indignity for another child in being told the only way to manage constipation is to give that child frequent attacks of what others might consider to be diarrhoea persists - brown smelly sludgy puddles are not pleasant and not discreet. The indignity of carrying "nappy rash ointment" to school persists - come on Sudocreme, please consider providing some alternative packaging for older clients.

The indignity of wearing especially designed swimwear, covering layers of rubber and wadding persists too - but possibly better than the indignity of swimming in a brown cloud.

And, when you're a smaller child with incontinence, there's the added indignity of having to wear not just "nappy-style incontinence pads" but actual baby nappies. Now, if you buy pull-ups or dry night type stuff yourself, for your older child who just happens to be taking his own time in managing to stay dry overnight, you'll get something reasonably discrete, slimline, with a juvenile not infantile pattern (or completely plain), designed to fit under pyjamas and be invisible at sleepovers.

Lovely. Important actually; manufacturers and parents recognise that having other children thinking you wear nappies like a baby is probably not good for the ego. But, be incontinent and be tiny, and you'll be given baby nappies. With baby prints on them. They're cute prints when your baby is one or two, they're fine when that baby becomes a toddler and just needs something reasonably cute and ridiculously watertight overnight. They're not ok when you're swinging in the playground or getting changed for PE or just leaning over in the classroom.

So we were really very pleased when our supplies had a "new improved" design which proved to be plain unprinted white and boring. Fantastic. Just like her big sister's pads. Grown up incontinence supplies for the smaller bottom.

Except that was last month. This month, they've improved the design again. And, perhaps I'm over-picky, but would you want to go around with this as a slogan pasted across your rear end?
"Think Big"

Charming.
Tia

The trouble with Tribbles Mollies

We started with four. Just four, one fat but only four. And a community tank, not much chance for the babies but hey, one or two might survive, right?

First thing this morning I noticed our pregnant molly was fat no more. With an elasticity many new mothers would be proud of, she had snapped back to pre-baby tub-like fish shape*. I hunted around the tank with bleary, pre-coffee eyes, and found three little fishies hiding under a pot. I debated hoicking out the nursery net we'd obtained for just this purpose, and then decided they weren't that diddy and would probably be fine.

Our carer arrived, and she and I spent valuable minutes hunting for baby fish -none to be found. Ooops. Oh well. Lesson learnt and into the nursery net the next lot will go.

I take a look at the top of the tank, to check all the food has disappeared, and find twelve small mollies hoovering up the last little crumbs. Hmm.

I call our carer back, for she has nothing better to do in the mornings than count fish with me, and we up our count to twenty-five. All about a centimetre long; not bad when their mother must be five centimetres nose to tail fin. I sprinkle some extra food and we start the day properly.

A busy day, two hospitals and the doctors' surgery (and if anyone else looks at me staggering through town pulling a luggage cart with ten bags on it and juggling another eight packs under one arm, and comments "that's a lot of nappies!" I may just have to relieve myself of some of the load).

And then home, and time to check the tank for survivors - the danios have been chasing babies, the water quality in the tank cannot possibly be great, population having increased rather rapidly. And I count forty-three baby mollies bobbing about merrily.

I'm scared!
Anyone want some fish? Very pretty. School project? Cat food?
Tia

*not that new mothers wish to be a tublike fish shape. Even if that's an improvement. I'll stop digging.

Mollies

After taking 157 photos

out of which, believe it or not,

these are the best,

I decided to try to video them!

The mollies are the black and white ones cunningly camouflaged as fast-moving lumps of gravel. The very fattest of them is pregnant, the next fattest may be, and the longest leanest one is the male. Oh - and the other fish in the tank are harlequin rasbora, golden danio and the solitary survivor, originally billed as a harlequin too - but very clearly not!

Tia

Garlic Custard.

For future reference, pouring milk over somewhat stale garlic bread and then baking it does not result in magically refreshed garlic bread. Some culinary adventures are doomed before they start.

In other news, we have pregnant Mollies! Whilst I suspect the babies will be eaten, if anyone fancies going on Molly-watch and rescuing them, they're very welcome.

Two girls all hooked up, both grumbling about it. I'm tempted to move them into a bedroom together and let them get on with it. Of course, that would mean I'd have a spare room... It would also mean our latest DFG was wasted money (removing one of the walls in Mog's timy bedroom so we can fit bed and wheelchair in at the same time), so perhaps not the best plan.

Excuse me; I need to find something to replace the garlicky custard.
Tia

Sometimes

Sometimes, just sometimes, we can forget all the medical bits and pieces, put the disability stuff aside, and just do the same sorts of things that every other family does on a Sunny Saturday afternoon.Of course, when we do it, other families decide we need far more space than we actually do, and migrate their children to the other end of the playground. Which means no queueing for equipment holding heavy children. Bonus!

And then we chase the other children into the bit of the playground with the swings, and the children are too busy swinging to be shepherded away, and they turn out to be at least 50% children we know anyway, and so I get to stand and push LF on a sling, and she gets to whitter away at chat to the father pushing a little girl next to us, and I can tune out. Double bonus!

Of course, then we get stuck in the swing - she's really too big for the baby swings now and it's hard pulling her out when her AFOs stop her feet from bending, and she can't use the bigger swings because they're made out of lorry tyres, and lorry tyres apparently have latex in them - and then we try the park's newest attraction, a strange kind of plastic hoop like a roundabout set at an angle, and I sit beside her, and we both fall off going downhill, me underneath. But we brush the bark off (mostly), and head to the shop for an icecream, picking extra bits of bark out of my hair as we go, and I think it's not such a bad life really.

Oh, and for those more interested in the medical bits, once Mog succumbed to sleep last night she slept all night, the mask stayed in place all night, and I had an unnervingly peaceful night. Turns out, the CPAP is quieter than Mog's usual snoring. Who knew?

Tia

Notes to self

Movicol explosion (hers), summer school uniform dress (also hers), and long and loose hair (mine), do not make for a good combination.

It is always worth checking the hose end of the siphon is firmly in the bucket before pumping water from the fish tank.

Never assume you'll find time to do the washing up later.

Hell hath no fury like a small Mog being inducted into a CPAP mask. Turns out, last night was a good night. I had no idea she had this much voluntary movement - not only did she manage to kick the machine off the bed twice, she simultaneously managed to use both her arms to bat my hands away from the straps whilst wriggling her head to remove the bonnet. After wrestling her into it, and staying with her long enough to calm her down and reassure her she really could still breathe, I walked out of the room to deal with the fish tank. And came back to find her sleeping beautifully - having somehow wiggled the mask off her face entirely. Not bad for a child who can't usually move anything much apart from her feet.

Always believe the small child who shouts "I not finished yet!" even if she's been on the commode for over an hour.

Tia

CPAP

ThisPlus this

equals this.

It doesn't equal sleep just yet though; this could be a lengthy night.

Tia

Gastrostomy Tubes

For Christie
Here's Mog;
She is hooked up to a pump which feeds her through it most of the day.
It runs on a battery, and lasts all day.
Very neat!

Here's Little Fish
She is nearly independent with hers now.
And just uses it to have a drink several times a day.

Tia

I am loved

Sometimes too much.
The cats have all brought me love gifts. I thought they were unusually active last night; one settling beside me in bed which is unheard of. The other two scuffling around on the floor, scattering leaves and chasing odd socks and underwear under the bed.

Or so I thought.

And then I got out of bed and found one jealously guarding a not-quite-dead baby rat, and the other guarding the scattered and tattered remains of a baby crow. My bedroom floor awash with severed limbs and feathers, guts and bits of skin.

They're very pleased with themselves, and busy winding themselves around me, dragging their prizes around to drop at my feet. I have bare feet.My gratitude is limited.
I'll spare you the photos.
Be thankful!

Tia

That was the weekend that was

The cake
The guests
The Birthday Girl receiving her Birthday Bumps
The cakes we stored in our hotel room overnight - too tempting by farAnd the table decorations reflecting the beauty of the day.
Happy Birthday, Rosie!
Happy Baptism, Christina!
Happy Anniversary, Tina and David!
A happy extended family and happy guests from all over the country (and one flying in from Berlin, thus neatly trumping friends and family trekking cross country from Cornwall and Newcastle).

A busy week beforehand for the Birthday Family, and a busy week ahead with the first appointment just a couple of hours away now. But all that paused for a couple of days, and whilst it cannot possibly have been in any way shape or form restful (except potentially for the smallest sister, who slept beautifully under a table in the food room), I am sure they feel the effort was worthwhile, to gather so many people who love them, to celebrate something really positive.

Tia

Three in a bed

There were three in the bed,
And Little Fish said,
"Roll over, roll over!"
So they all rolled over
And Tia got out
And she looked at the bed
And she gave a shout
"Please remember,
So tie a knot in your pyjamas
She who pays the bills should get the bed."

And then she looked at the girls, sleeping so peacefully, and she sized up the triangle at the foot of the bed, and she grabbed the spare blankets from the back of the bus and said "Humph!"

Tia

What's wrong with this picture?

Welcome to our "disabled chalet".
Hmmmm.

Nice hotel, rubbish access. About to bump ourselves out of our room and across the courtyard, hoping there will be someone to help us with the two steps up to the dining room. Still, comfy bed and fair trade tea so not all bad.

I had a packing list recycled from our last trip. It is not quite specific enough. I wonder if there's a nightie and smart shoes shop nearby? Oops.

Tia

Normal

Little Fish had a friend to play after school today. We've had friends before, but this is the first time it's been something planned and arranged and requested by her and her friend, and the first time we've had a friend whose only connection is that they happen to be classmates.

Slightly different then from her friends who have known us for years, from her friends who have siblings with disabilities. And so I found myself clearing the house in preparation for the visit* and making a greater effort than usual. Finding the floor in Little Fish's bedroom, I found myself hiding away the incontinence supplies. So far, so sensible. And then the wipes, the catheters, various other medical devices. Wanting to make things as unthreatening as possible for our visitor, wanting to protect LF's privacy.

But where do you stop? Hiding the incontinence stuff is wise I'm sure. Hiding the ventilator feels like a step too far. And removing every trace of anything different, even if I wanted to, isn't possible when there's a Mog coming off the bus, and when Little Fish herself has run over her friend's toes half a dozen times on the way home.

So I settled for pulling the toys to the front and pushing the supplies to the back.

I'm not really sure why I bothered though!

Tia

*Yes, I am aware of the futility involved in cleaning before the 5 year old invites a friend to play. But even so...

If

If I had a shopIt would look
Just like thisBut I'd keep the doors closed and not want to let the customers in.

Tia

Hope

Hope's a funny thing. A goodish night, a smiling happy child, and the future is bright and full of hope. A long and sleepless night, an ill child, and the hope disappears, the future fades and all that remains is the now and the getting through it. Thinking through treacle, the only hope is that eventually the caffeine will kick in before the treacle sets solid.

Tonight, I'm hopeful again. It may well be that there's no quick fix here. Mog's general condition may not actually improve. But I'm confident that people are listening. Mog will not just be written off. I will not be doing this alone. Night care is coming. And, from next week, Mog will be able to try CPAP and see how she does with it.

Hope. Hope that this will work, will help Mog. Hope that this will bring better nights for both of us. Hope that better nights bring more energy to both of us, more of Mog's presence and less of her twitching absence.

Here's hoping.
Tia

Caught off (spoke)Guard

What you looking at, Mumma?Nearly got it.
Oh oops.
Now if I can just get it right...
Perfect! See, Mumma, I not need a sun hat now!

Tia

Totheloo...

On a mission this morning. Rumour has it there's a changing places toilet in Oxford. Whispers of its presence in the Westgate Centre. A rather pressing need this morning spurred us on to go and take a look. First stop, the regular toilets. Not here, and no signs suggesting where it might be. But a vague memory of hearing it linked with the Shopmobility centre was enough to send us off in search of that instead.
Follow the red line - easy enough, right?
Off we go.Helpful signs reinforcing the red line on the floor, until finally we get to the door.
Ah.

Still, February 2008, that's only two years ago; hardly worth taking the signs down just yet is it?

Never mind, retrace our steps, find the correct level, and hunt for orange signs.
Oh.

Closer investigation reveals a large blank wall with the all important Changing Places sign, and a doorbell. We ring it.

Silence.

And then the wall unfolds, and a woman greets us, and ushers in past several rows of Shopmobility scooters, and into the Changing Places loo.
Someone appears to be taking the "Changing place" in a slightly different way than originally intended.
But, move past the clothes and shoes and turn around and ooo
A bench! A hoist! Behind them, a loo and a large incontinence bin, a sink nearly low enough for Little Fish, and space for all three of us. Great. And it only took us half an hour to find it from first entering the Westgate Centre. Good job it had that large bin really.

Still, a really useful thing to have, and I'm sure a few more signs would make it even more useful for even more people. Although the caretakers might have to store their clothes somewhere else if more of us did use it.

Meanwhile, a stealth photograph - someone seems to have been borrowing my camera
Anyone know a small boy with new shoes?

Tia