Two years on

We buried my Goldie two years ago today.

The collage I made for her funeral is still hanging on its temporary nail in our hallway; I should probably either decide that's really where it needs to be and hang it properly, or else decide what else to do with it and do it. I think it needs to stay really; it holds so many memories.

I can still hear her, you know. Shopping sometimes, I am sure she's squealing in the next aisle and then I remember she can't be. I dreamed the other night we were all running dreadfully late for something (not a rare occurence), and that we'd forgotten to pick her up. Things were getting impossibly tangled, and we were getting further and further away from collecting her. And then I woke up, and realised we weren't late for the appointment at all, and I still had plenty of time to call her carers and arrange things. And then I picked up the telephone and scrolled down to her number, and then I realised I didn't need to make that phone call after all...

Her phone number is still in my telephone. I thought I'd lose it when I switched phones, but somehow it travelled on the SIM card and is still there. How do you delete it? How do you not?

Today the Health and Safety Executive officer who investigated the circumstances surrounding Goldie's death phoned me with a date for the final part of the investigation. It'll be two and a half years since the accident, and the very last official part of her story.

It might be time to take down the order of service from its resting point on the kitchen window sill. Then again...

I wish, I wish Little Fish had had more time to get to know her biggest sister. I wish I had a decent photograph of all three girls together. I wish so many things about her last few months. Do I wish I'd known? An impossible question; if I'd known we would have so little time I'd not have agreed to her moving out; if she hadn't moved out she wouldn't have had the accident and so then she'd still be here.

Doesn't matter what I wish though; she did move out; I pushed hard for her move for so many reasons, and then she died. And then we all sat around and waited, and waited, and eventually we were allowed to have a funeral and then we buried her.

And in the three months between her death and her funeral I sat and hoped that having the funeral might help bring some kind of relief. And it did, sort of, but the pain and loss and separation was of course still there. And then I hoped the inquest might help. And then I hoped the court case might feel like some kind of an ending. And now this last piece of the official process, and I can't imagine that'll change things either.

It isn't all doom and gloom. I can't imagine Goldie being terribly happy amongst doom and gloom. In fact I know she'd have hated that; she didn't like people being upset around her, it frightened her. And I can't imagine her sitting quietly whilst people talked of her in hushed voices; she'd get the giggles and squeak, and shout out lines from her favourite stories.

Echoes in my mind - "That was absoLUTEly perfect, and Baby Beer SQUEAKED...Time to go home, come on, AMEN!"

I hope she's having fun today.
Tia

The rest is silence

Bliss.

Yesterday the firemen phoned back and set up an appointment for 3.15 today. Perfect timing; home time for both girls so no chance whatsoever of me forgetting to be at home. Always useful.

A domestically busy day today - new cleaner, so a couple of hours of frantic tidying so she could see the floors I needed her to mop, and find the toilets beyond the towels. As I gathered up the tattered remains of a Charlie and Lola magazine, and stuffed it behind the toaster, I found myself surveying the kitchen scene and thinking, with a sense of satisfaction "that's not too bad". Which begs the question, at what point did "it isn't terrible" become the housekeeping standard to which I aspire?

A phone call, and I went to meet our newest cleaner at the bus stop. Having left a nicely pleasantly scented not terrible house behind me, it was somewhat disappointing to step back into a house reeking with the acrid odour of feline urine. Gotcha's got the hang of things now, but Grolly prefers to look at the litter tray and pee elsewhere whilst staring closely at it - presumably to check it doesn't move, I'm not quite sure on the finer points of her logic.

I cleaned the wee, apologised to the cleaner, and introduced her to the delights of our cleaning cupboard. Last month's cleaner requested a new mop and endless disposable wipes. This new cleaner prefers our old dusters and the more natural cleaning fluids in our range. If we keep swapping cleaners at this rate, and if they keep requesting alternative cleaning products, it is entirely possible that by the New Year I'll be building a shed just to store the supplies. I suppose we could leave the supplies in the house and move into the shed; there'd be less to clean and it would probably be very clean. Apart from the spiders.

The cleaner settled in, and spent the next hour scrubbing the bathroom. I have shiny taps! And the next hour polishing my stove - I have shiny hobs too! And then she ran out of time, and I have a crumb-ridden floor and a dust-strewn hall, but I have a gleaming and glistening bathtub and so I don't actually care.

Meanwhile I spent her hours making a start on cardigan number two. Two hours, two inches. This could take a while.

Next stop Waitrose; spaghetti and supplies for the Guides. A failed quest for some black food colouring; hopefully plain chocolate will be an acceptable alternative. Driving home listening to an unbearably poignant episode of the Archers, and then unload the shopping and admire the clean and fresh smells emanating from the bathroom.

Very clean and fresh smelling, and a clear hour before the girls get home from school. I could knit another inch, I could check emails, or I could climb into the bath and make the most of it. Readers; I took a bath.

And a very nice one it was too, and I soaked and I soaped and I scrubbed, and I shampooed my hair, and just as I was completely covered head to toe in bubbles, there was a mighty hammering on the door, and then the doorbell rang several times. Not the postman; I'd had a parcel earlier. Not the chemist; we only put the prescription request in on Saturday. Too early for the end of school, and we haven't ordered pizza. So, I dragged on my dressing gown and squeezed out the worst of the soap, and poked half my head around the front door.

To be greeted by two firemen.

"Sorry we're a little early" apologised the first, offering to go away and come back another day. As he spoke, the alarm warbled it's CHIRP, and I hastily invited them both in.

"What the @!$@£$%^ did you do to your hair?" asked the second, which didn't earn him many brownie points. Pointing them towards the noisy alarm, I fled to the bathroom where I threw on the only clothes in the room; my Guiders' Uniform. No matter; it's Guides tonight. I don't usually put the uniform on until just before I leave, but it's got to be better than a dressing gown. Oh, and I rinse the shampoo out too.

The two firemen disassemble the first smoke alarm, but fail to stop it chirping. I ask them about the 3rd one (the 1st having done the same thing six months ago), and they decide to change that one for me too, and leave me, hoping that we don't need to meet again for another ten years. Neither of them can meet me in the eye at this point; I suspect it's not just the dodgy smoke alarms they're having difficulty with at this point.

But, they close the door leaving me with two new smoke alarms. And the rest IS silence. Beautiful, blissful, restful silence. For around ten minutes until the girls get home from school, the cats start fighting, the washing machine dings, a feed pump beeps, and life resumes its normal chaotic beat. But a beat no longer measured by the smoke alarm chirping every sixtyseven seconds. I can live with that.

Tia

Christmas Bonus

Mog's Christmas bonus came through today. A gift from the government for her to have a happy Christmas. I expect I'll get letters about Little Fish's and my own shortly. It's a nice idea - and in 1972 when it was first set up, £10 had quite a lot of buying power. Today I suspect the logistics of getting it out to everyone, including sending the inevitable separate letter to each qualifying member of a household, quite possibly costs about the same as the bonus itself.

There's always a heady debate about what we should spend it on. A pizza, for those of us who can eat? A couple of pairs of socks? A bunch of flowers?

It doesn't stretch quite as far now as it did in 1972. But there is a way it could stretch further; we could send it somewhere where the cost of living is quite a bit cheaper. I've mentioned Sarah before. She's just got word another 40 children are arriving for her next week. What might buy us a couple of nice takeaways or an alternative to the Sound of Music could go quite a bit further in India. It wouldn't come close to meeting her immediate needs, but what if lots of us did the same thing? If 24 of of us sent our Christmas bonuses to Sarah, that would cover the $400 she is wanting for Christmas presents for all the new children. If 14 of us did, that would cover pyjamas for them all. 8 of us could buy a new physio table. Just 3 of us could cover all the towels they need.

If it weren't for the letter announcing its arrival, I'm not sure I'd notice the extra £10 in the bank. I suspect there are quite a few of us in the same situation. Anyone else up for making it count?
Tia

BEEP

So, back in July, I thought Wednesday to Friday was rather a long time to have to listen to a smoke alarm beep every 63 seconds.

How little I knew.

Our second smoke alarm started chirping on Tuesday. I made the call, the fire service said they'd get out here soon. I asked them to hurry; it's the one outside Mog's bedroom so every 63 seconds I get a PIP from the alarm followed by a FIT from the child. They said they would call to arrange a time.

It's now late Friday night and no contact has been made.

I did offer to hit it with a mallet; they offered to let me know just how much I'd be putting lives at risk. I wonder if they know how much their lives are at risk if they don't come soon?

We're out most of tomorrow; the Guides are having a sleepover and whilst officially we're ducking out of the actual sleeping over bit I may just decide a shed full of pre-teen girls is less offensive than the chip chip pip fit.

Swine 'flu jabs tomorrowv morning; that, a peeping alarm and 2 dozen overexcited girls; this may just be the best weekend ever. Or very possibly not...
Tia

Plackard Caps

I may not have been blogging, but I've still been having thoughts (it happens sometimes, take that surprised look off your face). And I've come up with an invention. Those LED signs which seem to be everywhere now, flashing helpful messages:

Your doctor's clinic is
currently running
45 minutes late we
apologise for the
delay which is due
to large numbers
of patients need
PETER SMITH
TO DR JONES
ing to be seen.
Coughs and sneezes
spread diseases
wash your hands
if you have 'flu
go away. If you
don't why are
you here?

That sort of thing. I need a personalised one, one I can wear over my head. It'll have an assortment of messages to suit every occasion. For example:

I am not staring
at your son. I am
looking at his
wheelchair and
wondering if it
might work for
my daughter. If
she were here you'd
know that but
because I'm alone
I probably look
like I'm staring
at your son.
Sorry.

Or, coming from the other side of the divide

If you keep
staring at my
daughter you
will walk into
a lamppost and
I will laugh.
Thank you.

and

No she isn't
asleep and she
isn't dead she
just likes to
close her eyes.

This hat wouldn't just have our life specific messages though, there would be general every day ones too. Health:

No I don't
have swine 'flu
it's just a
sneeze.

Hey you!
Don't spit
in the street
it's disgusting.

Traffic:

You in the big car
beeping the old
lady as she pushes
her trolley slowly
across the road.
Think about it -
would you really
prefer her to go
back to driving
again?

and teenagers:

I know it's been
a whole 12 hours
since you saw
your friends last
and lots has
happened and
you need to share
it all all at once.
But
This is my
pavement too
please
move over.
You won't die
if you have to
walk in groups
of less than 5
aside you know.

So that's my invention. Pat Pending. Interested investors please form an orderly queue.
Tia

I'm back

(Did you miss me?)

Three days, two dresses, one cardigan and one suction catheter holder. Very very little sleep. One cardigan finished at 3.03PM today. One small child returned from school at 3.02PM and immediately shuffled out of uniform and into pretty dress and cardigan. One child raging and screaming and tantrumming about not liking pretty dresses, not wanting her picture taken, not wanting to go outside. One child sick all down pretty dress and cardigan - entirely deliberately - at 3.08PM.

Incandescent woman walked again.

3.17PM second child returned from school, shuffled into pretty dress and different top (anyone want to knit up the next cardigan? If I never see any more burgundy wool it will be too soon).

3.23PM everyone out of the house and heading towards the photography studio.

3.55PM arrive with one dishevelled mother, who is definitely not looking her best after three days non-stop knitting, one child with a vomit-strewn dress and one who proceeded to dribble mightily demonstrating my lack of wisdom in choosing cream fabric for the dresses.

It sounded more sensible on Monday when we booked the photographer. Two dresses in three days, not even a little bit of a problem. Same photographer we used a few years ago; I was thinking similar shots to reflect our current family. And then he uttered the words "by the way, I shoot against a white background now, so make sure they are wearing dark clothes".

With quite ridiculous optimism I grabbed enough wool for two burgundy cardigans. Beautiful wool, a beautiful match for the dresses. And a very very simple pattern. And then I completely forgot that if you're a slow knitter, it doesn't matter how simple the pattern; double knit on 4mm needles is going to take a while to work up.

Annoyingly, Tescos have some beautiful wine coloured cardigans which would have been a perfect match. I'd already bought the wool by then though. The sensible thing to do would have been to put them in different clothes, or alternatively make a later appointment for their photos. But why be sensible when you can instead sit up til 1.30AM, fall asleep in your clothes, drag yourself out of bed early to continue, and produce at the end of it something which looks as though it was knitted by the four year old wearing it? We weave our own yoghurt here...

I have no pictures for you; the proper ones won't be ready for a while and the girls were most definitely not in the mood for any more posing afterwards. Plus, who wants to see pictures of vomit and dribble stained crumpled and creased things anyway? I hope the photographer can work some magic on them for us.

We came home, fed the cats, fed the littlest girl, processed her through to bed and repeated the process for the older one. And then two kittens vomited in unison, clearly feeling I hadn't paid them enough attention over the last few days. Have you any idea how irritating a kitten can be when you're trying to knit? I cleared up the vomit and they vomited again, but swapped and ate each other's vomit before I could get to it. My life is full of glamour. And then they vomited again, and now they're feeling better and chasing each other around the house, destroying hairbands as they go.

Is it bedtime yet?

Deadlines

A little bit of this

and quite a lot of thatand not very much time at all

means there may not be very much of this over the next few days.
Sorry folks
Tia

Mighty to Save

Sometimes I look around and all I can see is the need. So many friends, so many families, crying out for help. Three families facing their own mountains this week and all I can do is pray - Saviour, move these mountains too.


On a lighter note, prompted by a near miss this morning; if the person next to you shoots up their arms in worship and knocks you flying as they do, does this mean you've been slain in the Spirit?

Tia

Thank you for the (Sound of) Music

We've been harried all week, just about having girls ready by the time Mog's bus makes it appearance, just about squeaking into school as the whistle goes. So, naturally, this morning both girls were up and medded and ready for the day by 6.30AM. I don't like 6.30AM on a Saturday; it's unnatural.

We made porridge, we ate porridge, and the cats ate the bowl of porridge which somehow ended up on the floor. We watched the Sound of Music (again). One of us drank coffee.

Mog made use of her entirely deliberate stridor, starting it up whenever the music stopped, stopping it the instant there was singing again. I accept it's a little unreasonable to be annoyed by your child breathing (it is, after all, better than the alternative), but oh my - it's infuriating!

Little Fish meanwhile was in full-on "Why?" mode, combined with a desperate need to glue and stick and paste and cut and shred and mainly scatter.

It isn't murder if they drove me to it, is it?

By 9.21 AM Little Fish was requesting that we go to the chip shop. Back history; every night this week she's come home from school asking for chip shop chips and sausages. Every night I've told her we'll have some for lunch on Saturday. By 10, she had asked me so many times I set an alarm on my phone and told her we'd leave when it went off but not before. Peace.

And then the alarm went, and we coated up. And "I don't want chips, Mummy". OK, fine, take your coat off, come back inside, we'll have sandwiches. "I want chips, Mummy". Repeat ad nauseam. Screams in the house, refusal to move outside; eventually I overrode everything and loaded us all into the van (more screaming involved but with the girls tied down and me belted in I thought possibly safer all round). Pleas from Little Fish to be allowed to go to bed for a "Likkle rest". Giggles from Mog. And an acceptable compromise that even if she wasn't hungry, I was, and that I would be buying something for my lunch before coming home, at which point she could go to bed.

And suddenly happiness and no more tantrums and "I know, Mummy, you go to that shop on the roundabout, they give you food in the car you drive" (McDonald's). And a very polite request to get out of the car there and sit inside to eat. Suddenly a rational human being again, even when no space inside meant eating in the car after all. A fact only discovered after parking, unloading both girls, queueing...

She didn't eat the chips though.
Tia

Posh for Pudsey

Introducing
Princess Mog of the beautiful hair*
And Lady Pechette
with the velvet dancing shoes.

The hair took our carer an extra half hour to do before Mog was satisfied. And Mog had to be completely dressed before Little Fish would condescend to wear a pretty dress. And amazingly, by the time we got to school, she was surrounded by so many Princesses in Tiaras and ballgowns she actually looked underdressed. But definitely classier!

Tia

Random cuteness

Tia

Eeeevil Mog!

It's been a while. But she's back!Starting yesterday, with her determination to kick the orthotist. Continuing with her determination to kick her way across her bed until her face was firmly planted in the Perspex. A couple of full body spasms to prevent carers doing up her lap strap. Deep joy at kicking the shower head last night. Giggles all night long as she had yet again worked her head into a position where all she can do is cough. Deliberate stridor. Kicking her boots off in the middle of the road. Utter delight at being called a smelly beast. Belly laughs at her sister's tantrums.

Eeevil eeeeeeeeeevil child. And I love it!
Tia

Is it bedtime yet?

Yesterday morning, I dropped our van off at a bodyshop to have a paint job. It all worked brilliantly; Mum came here to sit with the girls, Dad picked me up from the garage and dropped me back home. Mum and Dad were both at work in good time, the girls were happy to see Grannie albeit briefly, and I had the hope of a car without scratch marks and a dented rear door.

A peaceful day yesterday - sick children needing lots of cuddles, and plenty of time to sit and do just that.

This morning I woke up and realised Little Fish had an appointment at our orthopaedic hospital. What's wrong with this picture?

(hint - two children off school, and no van).

Ever resourceful, I called our local reliable taxi service. They have no wheelchair accessible taxi available at the time we really need, but can provide one 15 minutes later; we should just squeak in on time as no need to worry about parking. Our carer turns up late, the taxi turns up early, and somehow we all tumble out of the house and land more or less the right way up and definitely heading in the right direction.

We arrive at the hospital 15 minutes early for our appointment. I cast a brief glance at the cafe, but decide to be good and head on in, thinking we'll have time for breakfast after X-ray.

We get sent from reception to X-ray, we arrive in X-ray to find the world's fullest waiting room. Two rooms overflowing, and some very harried looking receptionists. And so we find a corner and sit. And sit. And sit. And watch as the waiting room empties and refills. We find three of Mog's schoolmates, all of whom arrive after us and get seen before us. Mog decides the waiting room is overcrowded and overheated, and decides to start fitting. 1 hour into our wait, 25 minutes into Mog's seizure run, 45 minutes after our appointment time, I decide to go and check we have been booked in correctly. We have - but apparently there was a problem with the sticky label on the X-ray request so we have been delayed longer than everyone else. I get a bit wobbly about the unfairness of this, and wobblier still when the senior radiographer (radiologist?) attempts to move us out of the corridor and back into the overcrowded festering pit waiting area. Picking up on my distress, she somehow manages to sort things and we are suddenly standing inside the X-ray area no longer waiting.

One member of staff volunteers to sit with Mog in the waiting room, changing her mind when she watches Mog stop breathing, and deciding instead that Mog will indeed be fine behind the big screen with the other staff. And Little Fish is stripped ready for her X-rays. I offer her legs, they request her spine. I am confused, check my diary and realise I haven't written down which clinic she is attending, so assume it is spine and not hips.

1 hour and 20 minutes after our appointment time, we make it back to outpatient's, where I see that there are no spinal doctors in clinic today, and so we must be seeing our hip man instead. I debate double checking the X-ray but the thought of another 90 minutes' delay is somehow less than appealing.

We sit, we wait, we sit. And then the magic moment; Little Fish's name is called. A new chap; I steel myself for the inevitable medical history questions, gather our bits together, and follow him through to the consulting rooms. And find myself at a loss; he has vanished. Eventually we locate him; for some reason he didn't wait for us but just went straight back to his little room. And when I say little, I mean so small that there was no way of closing the door once Mog's wheelchair (with Mog in it) was inside the room. I realise space is at a premium, but given the fact that this is an orthopaedic hospital, where, presumably, a largish number of people with physical disabilities may be patients, it shows a certain lack of forethought (nb - this is a new building).

Anyway, our doctor says hello, checks which child is his patient, and clicks onto the computer to find the X-ray pictures. 10 minutes later, he summons a nurse in, who manages to log him into the system. He then fails to find Little Fish's notes - apparently she doesn't exist. Since the file with her notes in is still marked prominently with her birth name, and since there was a sticky label error earlier in the day, I'm not overly surprised. When I see that he has put her date of birth down as the 18th of August this year, I'm even less surprised.

We discuss the x-rays as we wait for the computer to load. I explain we are not here about her spine; he insists we are. I point out she has a spinal consultant and that this is a post-op follow up on her hips. He reads the notes again and agrees this is the fact, and then apologises for ordering the wrong x-rays.

The doctor shuffles out of the consulting room - a manouvre which involves me folding my legs up under me, Mog resting one arm on the clinical waste bin, and Little Fish being stepped over. He finds another computer, locates the files, and looks at the x-rays. And returns.

Apparently the metalwork is all in the right place.

This is good. The doctor then attempts to discharge us; I ask about the remainder of the appointment, the debate about her feet, the appointment with orthotics. He asks to look at Little Fish. Always a good start - shame it's taken about half an hour to get there. And then decides, once she is stripped and on the bench, that LF is "too complex" for him, so shuffles out again to find the consultant.

We spend the next twenty minutes with Little Fish in her underwear, in a room with a door we cannot close. The registrar lurks in the corridor, waving nervously at consultants as they breeze past with varioius patients. I hear LF's medical history repeated several times as he asks passing doctors for advice. He pops back in, squeezes past us all, asks about LF's eating and drinking. I say she eats fine and has a gastrostomy for flouids. He apologises, and disappears again.

Finally the consultant walks in. He glances at LF's feet and says no op yet. This is good news. I ask about an orthotics appointment. He says there is a clinic today; I ask for an appointment at some point in the future, but am persuaded to attend this one.

And so, three hours after our 10AM appointment, we cross over the road to the orthotics clinic. Where, despite being ridiculously busy, we are taken back immediately. We sit in one room, the orthotist examines LF's feet, and decides to recast her splints. Good. We are shuffled through to a room without a carpet. The orthotist disappears. And reappears to apologise for forthcoming delay. We decide to return to the waiting room, where LF makes the most of the toys, and Mog coughs loud and long to the disgust and terror of the other patients. It isn't swine 'flu people, just Mog.

Finally we get to the plaster room proper. LF chooses a new design for her splints, and the orthotist begins his work. Mog wakes up at this point, and kicks him repeatedly until I mover her out of the way. She then decides to need suction instead. Little Fish watches and bosses us all around. Eventually she is cast, we clean her legs, replace her shoes, and head back across the road for a very belated lunch.

And then we go to call a taxi for the return journey. I ask at reception for a phone number, and am pointed around the corner to the freephone taxi phone. I pick up the phone, the man at the other end tells me I should have booked the accessible taxi and that they have no others, and hangs up. We head back to reception. I can see a Yellow Pages, and ask for it. A man waiting at reception hears what the taxi controller told us, and says he will "feed that back" before disappearing and looking important. Instead of handing over the Yellow Pages, the receptionist phones the original taxi company asking them for competitors' numbers. They claim to have a wheelchair taxi available right now. She books it in our name, we head outside to wait for it.

We wait. A very small taxi pulls up, looks us over, and runs away. Ten minutes later, a big beastie bus from the same company turns up. We load up, and finally arrive home six hours after we left it, 5 hours after our appointment, and 3 hours after the girls should have had their lunchtime meds.

Little Fish has managed the day really well; I phone her school to let them know she will beback in romorrow. Mog has had seizure after seizure after seizure; I decide she needs another day at home and do not call her school.And then LF has a very long and fierce meltdown, much screaming and sobbing and utter exhaustion. And Mog finds the sense of humour she's been missing over the past wee while hand has an eeevil laughing fit, throwing herself into the edge of her bed and laughing some more, kicking her cushions over and laughing even more.

And I leave you with my thought for the evening - which is worse; Amoxycillin poo in a pad or co-amoxiclav poo without a pad?

Tia

I am not a nurse

Nor am I a technician.

And yet, I have the pleasure of looking after all this
without the luxury of an instruction manual.

The feed pumps have them, the Nippy itself has a huge one, the nebuliser, suction pump, powered wheelchair and beds all came with them. I still use my manual to set the delay function on my cooker. And yet this beastie (it's a humidifier) comes with just one photocopied A5 sheet telling me how to clean the electric probes (don't throw them away, don't boil them, don't immerse them in water, just wipe them and not with alcohol).

It's "intelligent"; it doesn't just alarm, it flashes a light telling you which bit of it has the problem. Of course that's not much help if you don't know what kind of problem each bit might have. An online search found me a service tech's manual, but I'm pretty certain I don't need to know where to clamp the wires to ground it for it's annual electrical safety inspection.

The manual did eventually give up the information that the other night's problem was to do with the water supply; hanging the water bag rather than leaving it on the side resolved that one nicely. Today I had the pleasure of changing the hosing on it; a weekly task and this the first week.

Step by step, remove probes from old tubing and replace immediately in new. Clip tubing, unclip tubing, wrestle to unclip probe which appears to be welded to the tubing, refasten in new tubing. Repeat until it at least looks similar to before.

Hang new water bag. Why, incidentally, is the water labelled "Non-pyrogenic"? Surely this isn't something we need to be told?

Hook whole thing up to the Nippy and then to Little Fish. Say goodnight, turn out the light, sit down. Bip bop boop peep peep, bip bop boop pip pip. Leap up, with Little Fish sobbing, and hit the silence alarm button. A new light flashing - says there is a problem with the lungs. This is intriguing; I didn't know I'd got a probe inside LF. I assume this symbolises something else, and head back to Google for the answer.

Probe issues. I push the probes more firmly into their holes, and retire again. Five minutes later, Bip bop boop peep peep, bip bop boop pip pip, and more screeches for Little Fish. I tighten up the next probe along and hope for the best. Five minutes later...

At this point I sit and retrace the entire thing, and find a third probe which for some reason is still plugged into the old circuit. Extract it, plug it into the new, and watch the temperature rise nicely. Little Fish sighs, eyes closing, and gives herself over to the comfort of something else breathing for her.

Is it worth it? Alarms, ridiculous amounts of plastics, the need now to cart litres of non-pyrogenic sterile water with us in addition to all our other supplies, a new alarm and a whole lot of fiddling, and a shorter hose so less mobility for Little Fish when she's in bed. Oh, and no battery back up so not usable in power cuts or on the move. All pretty powerful reasons to give up on it. Add in the expense - not borne by us, but someone's still paying fairly heftily both for the machine itself and the supplies (hmmm and I suppose we are paying slightly, if only for the additional electricity used). Oh, and the condensation and general rainfall now present in Little Fish's bedroom.

But, seven nights with is, and seven nights with no nosebleeds. Eyes clear and bright in the morning not bloodshot and crusty. And she seems to be sleeping slightly less but waking up more cheerful and less croaky. The jury's out.

Tia

Mum proposes, child disposes...

Having missed church last week due to Little Fish's Big Sleep, and the two weeks before that due to 'flu, and the week before that in order to do my duty by the Sunday School rota, I was quite looking forwards to getting there this morning.

With this in mind, I settled two girls into bed last night in good time, and settled myself down for an early night too. A 3 hour phonecall with a friend turned my early night into a somewhat later one. A frantic bellow from Little Fish turned it later yet, as she lay twisting in her bed with a raging temperature.

Medicines and a cool sponge, and a small girl with eyes closing gently drifting back to sleep, winter duvet swapped for a thin blanket, and Nippy hosing adjusted so she could move her head whilst sleeping.

Back to bed, head on pillow, lights out, glasses off, and then the gentler sounds of Mog gasping for air. Out of my bed, grope my way across to hers, and attempt to straighten her out a little. Repeat process twice at 20 minute intervals before giving in and putting her back in her collar for what remained of the night.

Snuggle down in wonderfully comfortable bed and then hear ScrEEEEEEEE noise. It's either Mog having a major mega seizure, or Little Fish somehow fallen under her bed and wrestling with the tent poles. I stagger up, and the noise stops. Lie down; it starts up again. Stagger up, it stops. I sit quietly and wait. And two kittens reveal themselves to be viciously attacking the bathtub.

Extract kittens, close bathroom door. Blissful silence. And then more subdued scritch scratching, and some plaintive mewing. I open the bathroom door again, and one cat leaps out, rubs noses with the cat trying to dig his way under the bathroom door, and they both run off to empty the litter tray.

Sleep.

Morning, and Little Fish's temperature has put paid to thoughts of church. She wakes up, happy and hungry, but with a ludicrously low temperature which refuses to rise to normal. So we settle for a quiet cuddly day, The Sound of Music, Macaroni Cheese, and not very much of anything else. A small rash of tiny spots starts to spread across Little Fish's stomach, and a friend's long-distance diagnosis has me thinking I probably ought to get things checked out. We obtain an out of hours doctor appointment, and settle back to more cuddles and fruit purees.

At last the hour approaches, and we load the van. Arriving at the hospital, the receptionist informs us the clinic is running late. I check that we will be seen before our evening carer is due, and am reassured there are only three patients in front of us.

And so we sit. And we wait. And we wait, and we sit. Little Fish tells everyone she is not poorly and she does not have any germs. And Mog coughs quietly and grows gradually pinker and her breathing gets louder until the receptionist is looking quite alarmed.

We watch as a doctor suits up with apron, mask and gloves and goes out to a patient who is waiting in the carpark. And then watch as the doctor walks back through the waiting room in the same apron, mask and gloves, bringing with him a patient's friend who has presumably been sitting in the car with the patient for the last however long. And we wonder what the point of the protective clothing was, if it's going to be walked back through into the main hospital anyway.

A small boy walks in with his mother, vomits at our feet, and is vanished by a nurse into the treatment rooms at the back. Little Fish is very interested, and Mog coughs on.

We are eventually called back just as we should have been opening our front door to our carer, an hour after Little Fish's bedtime.

Mog rasps and gurgles, and I point out that she is not the patient; Little Fish is sitting happily playing with the iPod and finding Lola's germs to look at. I explain last night's high temperature, the day's exceptionally low temperature, and wrestle with Little Fish in an attempt to show off the spots. The doctor takes LF's temperature which has now soared again, attempts to peel the spots off her stomach with a sharp fingernail, and asks me whether she was born via Cesarean or naturally. I'm not entirely sure what bearing this has on anything, but attempt to share what information I have. Diagnosis: infected gastrostomy, treatment: one bottle of co-Amoxiclav.

The doctor offers to take a look at Mog; her temperature is now soaring too, having been normal all day. A rattly chest and a worried doctor: one bottle of Amoxycillin.

Home via the late night chemist to three very annoyed cats and one very absent carer. Two bottles in the 'fridge, two girls in bed and at some point in the morning two phonecalls to two schools to explain two absences. It is a lot easier dealing with sick children when I don't feel like death warmed up myself though.

Tia

The Making of a Migraine Quilt

My God Daughter had a birthday, and being the wonderful God Mother that I am, I totally failed to get her birthday present to her on time.

I could blame 'flu, I could blame tiredness, but truthfully, I just hadn't made it. So, I sat down and started sewing. And my eyes started jumping about in different directions.
Hoping it would get better once it was finished, I struggled on manfully*, until I decided the thing was big enough, at which point I started laying out the backing. This took some time.
But eventually I managed to bribe the beasties with a bowl of tuna, and got the quilt spread out over the fleece. And then the tuna bowl was empty, and two kittens had more energy than ever before.
And no, the eye-bleeding pain I got from looking at the strips did not settle at all. Note to self: strips of batik look very pretty when in a jelly roll but very evil when sewn side by side in a semi random fashion.

Still, eventually the kittens wore themselves out, and I was able to join the two together. No picture of the finished article, the girls and I were too busy stroking the fleecy inside and admiring its softness.

It did, eventually, get posted yesterday.

And this morning this arrived on my phone.
I think she likes it! And look, the backing fleece matches her wheelchair perfectly. It's definitely nicer inside out.

I think she might be sleeping to get away from the stripes here...
Happy Belated Birthday, sweetie!
Love,
Tia


*man struggle: I did it but paused regularly to text a friend about how awful it all was and to collect much praise for doing it.

It started so well.

It really did start so well.

Awake early, two children sleeping peacefully so a nice bath, and a nice clean refreshed and alert me, ready to start the day. It got better; two girls up, one carer getting things organised, and a pan of porridge bubbling on the hob, time even for Little Fish and I to sit down and eat together.

And then...

One parcel to be posted; throw it into a plastic bag and get the girls coated up and ready for school. Remember physio coming to school to sort out standing frame; ransack house for Allen keys, screwdriver, and instruction manual. Check time, panic slightly, grab school bags and scrawl in books, locate door keys and realise parcel has vanished.

Double check time, realise school bus now ten minutes late, consider walking Mog to school with Little Fish but thankfully bus turns up. Push her into the arms of the bus escorts, chase Little Fish out of the house and ask her to start walking to school whilst I relocate my doorkeys and phone. Give up on parcel.

Walk Little Fish to school, past the post office. Squeak into the classroom seconds before the door is locked, drop her off and walk home, past the post office. Search house for parcel, fail to find it, but lose sanity spare doorkeys in process. Walk back to school, past the post office.

Spend the next hour and a half trying to reassemble Little Fish's Rabbit.

She's grown a little since she first had it


Remove chest piece, hip piece, brakes, knee blocks. Lower foot plates. Realise footplates were in lowest position, reassemble foot plates. Replace knee blocks. Replace brakes. Realise now no space for hip piece. Remove brakes. Remove knee blocks, invert knee blocks, replace knee blocks. Replace brakes. Attempt to replace hip piece. Realise small but crucial metal block has slipped down inside the frame and is now under the knee blocks. Remove brakes. Remove knee blocks. Remove small blocks. Replace knee blocks. Replace brakes. Replace hip piece. Invert chest piece, replace chest piece. Widen hip and chest pieces. Insert small child. Watch as child leans into a backwards banana to avoid touching chest piece with gastrostomy. Tweak chest piece. Decide to contact R82 rep.

Walk home, past the post office. Wash up, turn house upside down and still fail to relocate parcel. Check bins and washing machine. Give up, sit down. Discover parcel. Consider dashing to the post office, but receive text that friend on her way. Put parcel into shopping bag, grab handbag, realise keys no longer in bag. Tear through house hunting for keys. Find keys, grab bags just as friend appears. Exit house. Sit in friend's car. Realise telephone not in bag. Race back into house, fail to find phone. Call phone from landline, watch as friend locates telephone in her car, and finally leave. Decide to find pub for lunch rather than go into town.

Breathe.

Have fantastic lunch - steak sandwich for anyone interested - and put the world to rights, formulating plans for radical overhaul of various services and institutions. We really should be in charge, we'd do so much better. Honest.

Realise lunch has taken too long, race home late. Collect equipment from kind nurse who has been waiting in car park. Realise cleaner is now due in twenty minutes, and the house looks as though it has been ransacked several times in search of keys, phone, parcel, and so on. Tear around house picking up whatever isn't screwed down, and throwing most of it into my bedroom. Realise finally have time to post parcel.

Walk to post office. Queue in one shop to buy cardboard box for parcel. Pay. Queue at post office. Ask for parcel to be delivered as soon as possible, and have lengthy and unhelpful conversation about whether Saturday comes before Monday or not. Should this really have to be debated? Eventually pay, then return to main shop to buy macaroni. Race home.

Sit down for three minutes before Little Fish arrives home, slightly early to avoid imminent rain. spend an hour chasing Little Fish who is chasing the cleaner, before deciding LF must be tired and starting her bedtime routine instead.

And finally, time to sit down. Mog sitting here watching Mamma Mia and coughing. And laughing whenever I grab the suction. Is it bedtime yet? Oh, and where are my keys now?
Tia

More from Little Fish

This morning:

Mummy, Is Mog a person?
Yes dear.
You is a person?
Yes dear.
And me?
Yes. We are all people.
Mog is a people?
She is a person, I am a person, you are a person. Together, we are people*
I am NOT a person.
Oh?
I am a lady.
Yes dear.

Tia

*note to self: grammar lesson not helpful at the breakfast table.

Songs from Little Fish

Little Fish has lots of little tunes these days.

Last night:
"Bob the builder, can we fix it?
Bob the builder, yes we can.
Bob the builder, can we fix it?
Bob the builder, no actually he can't."

And this morning:

"Everybody do this, do this, do this
Everybody do this, just like me.
Everybody do this, do this, do this
Everybody do this HEY STOP COPYING ME!"

I'm assuming "Happy Birthday to you, smelly bogeys and poo" is just another version doing the rounds of the school playgrounds, but the first two are her own little tweaks I'm sure.

Meanwhile, another beautiful but useless school photograph. Hands wonderfully posed, an enchantingly wistful half smile on her face, hair and teeth immaculate and shining. And a great shiny flash bulb reflection across her glasses. I don't get it - why can I, untrained, with a cheap camera, take photos without catching the reflection, but those trained photographers can't? Or do they just not think it's important?

Internal Memo

When you check your diary for the week, and it says the respiratory nurse is doing a home visit on Monday morning, do not go back to bed after dropping your daughter at school on Monday morning. If you do go back to bed, when the doorbell rings unexpectedly, do not throw everything into Little Fish's bedroom on your way to answer it. True; this will indeed give the impression of a marginally tidier house than might otherwise be the case. However, when the respiratory nurse has come to fit a humidity circuit thingy* to Little Fish's Nippy, she will in fact need to enter the bedroom. Stepping over the clothes, tent poles, physio mats., etc. is possible, but a tidier room (and emptier bed) would've made a better impression.

The humidifying thingy is very impressive though - lots of blue hose and dangly circuitry, water which mysteriously fills itself, and a new three tone alarmy blip. It didn't impress Little Fish; although the only bit visibly different for her was the switch from grey hose to blue, she was adamantly against it until she actually tried it. At which point she decided it was quite nice actually, and snuggled in to fall deeply asleep before I had switched the light off. And it doesn't run off a battery, so we could do with no power cuts forever more now please.

If anyone other than myself has read this far, please spare a thought for my friend here. Selina needs to come home to be with her family; she's spent far too long already in this institution.

Tia

*technical term

Saturday Sillies

After a ridiculously long sleep (4.30PM - 11.30AM), Little Fish woke up full of giggles and ready for mischief. I asked her if she wanted chocolate spread on bread or chocolate spread on toast. She thought for a minute, giggling to herself, and said "Chocolate spread on ME." So I obliged!
Later, sitting and playing nicely, I heard a plaintive call, "Mumma, Mumma, I got a bogey. A Vewy Big Bogey, come, come quickly, please, Mumma"

So I did, and I found thisAnyone for playdough?

Tia

School Hard

Two weeks of 'flu
One week of school
Nine o'clock on a Saturday morning.

Tia

Remember

Remember, remember, the fifth of November
The Gunpowder Treason Plot
I see no reason why Gunpowder Treason
Should ever be forgot,
A stick or a stake for King James' sake
Won't you please to give us a faggot?
If you won't give us one then we'll take two
The better for us and the worse for you.

Childhood memories; wellies and hats and scarves and gloves, wading through the mud in a neighbour's garden holding red hot sausages and sipping scalding soup. Waving sparklers and watching Catherine Wheels fizzle and spurt, longing to be old enough to be the one to light the fireworks, but settling for throwing another stick on the fire and watching the Guy fry.

Staggering indoors to eat Parkin and Bonfire Cake, having tipped the soup surreptitiously into a flowerbed. Soggy gloves and ears scarlet with cold. Families from all along the road, squeezed in together, warming up and drying off before scampering home, and snuggling down under extra blankets to dream of rockets and fountains, and complicated maths topic work involving half a dozen matches, each of which will light three fireworks, how many of the box of twenty will be saved for next year.

Perhaps a bigger show at the weekend; wrapped up warmly we stand in a crowd, clearing space for sparklers and enjoying the high fireworks, standing on tiptoe and sitting on parents' shoulders to try to see the lower ones but settling for the scent of cordite and frosty noses.

And now? Two children the age my brother and I were, both tucked up in bed. One who loves the bangs and flashes, but who tends to drown when tipped back far enough to watch them. And one who is terrified, and lies under a duvet and blanket, the noise thankfully masked by the hiss and whirr of her ventilator, begging me please no fireworks Mumma, and tonight peacefully asleep before dark and avoiding them all. And me, dividing my time between this computer in the quieter moments, and standing in the garden, watching the show put on by the football club the rest of the time.

Next year, maybe.
Tia

Letterbox

Today I wrote a letter. A letter to someone who was close to one of my girls, once, but who never sees her now. A letter which is supposed to give an annual update on this child's doings.

How do you squeeze twelve months into a few short paragraphs and a handful of photographs? I could paint the picture of a sad miserable, dreadfully disabled child, or I could draw out a happy, carefree little sprite. I could fill the space available with descriptions of battles and clashes of wills, arguments and disagreements, or wax lyrical about all the lovely times.

I try to put a little of everything in, but then I wonder what this person wants to know. Do they want to know things are hard; would that help to know that seeing this child would be too hard for them? Do they want to think things are perfectly wonderful, that they aren't missed or needed? Am I sharing too much truth, will this person spend the next year worrying about the things I have mentioned? Or have I shared too little; am I short changing them?

And what of the child? What does the child think I should write? If that's too complicated a thought for now, will there be a time when the child wants to know what I have written, and what will the child think of it when they do? Am I writing this letter for me, for my child, for this other person? Am I causing them pain by writing it? Is a letter better than nothing, or does it keep the pain alive?

And in writing this letter, I have been looking back through the last year of this blog. So much in it - no wonder I'm tired. And so much which never found its way here - and again, no wonder I'm tired. A year in the life of two little girls. Progress, development, change. Illness, deterioration, pain. Holidays and hellishdays, hopes and history. The general just-about-see-a-path-through-most-of-the-chaos life we seem to live. I'm not complaining (well, not much); this is the life I chose, and I'd choose it again in a heartbeat. I'm just not sure it's necessarily the life I'd choose for the girls. But I'm reasonably certain that's not the message I want to get across in this letter.

The deed is done, the letter is written; I think it's reasonably honest and I hope it's well received. And the picture at the top has nothing to do with this; I just liked it.

Bedtime.
Tia

Truth hurts

Photo has nothing to do with the conversation but it makes me smile.
Conversation at bedtime:

Mumma, Mumma, I can take my top off all on my own. I am a very big girl now.
Yes you are.
Mumma, umm, today, at school, we have PE. All my children, they get dressed themselves. I can't do that, Mrs Skello, she helps me.
Does she?
Yes, but, I can nearly do it. When I get a bit bigger, I can do it by myself. I am learning. I am clever, am I?
Oh, very clever! You're learning such a lot. And yes of course you'll be able to get dressed all by yourself when you're a bit bigger.
It will get a bit easier when I a bit bigger, will it? Can I? Can I?
Yes, you'll learn how to pull yourself up a bit more and then you'll be able to get your trousers on.
And then, when I a bit more bigger, I can walk too.
Well, no. You won't be able to do that.
Why I not learn to walk? I will be big girl?
Yes, you'll be a big girl, but your legs still won't work because we can't make your legs work. But you'll be even faster in your chair and maybe you'll be able to crawl too - you can nearly do that now can't you?
Mumma, Mumma? Why are you sad? You like a big cuggle now?

Tia

Progress

Big Important Meeting about Little Fish today. And lots of smiles, lots of happy faces, she's doing really well, everyone's delighted with her progress and how well she's settled at school. All the children love her, all the staff think she's wonderful, she's having a great time.

Just a few minor problems... She's still not funded for all the help she needs. Although entitled to transport there's no one willing to provide it, and in the meantime she's missing the end of school so that someone can walk her home as a favour. We're trespassing on a lot of people's goodwill, and it won't last forever.

And then, post meeting, a short brief chat with the teacher "How do you move her past 'I don't know'?" I wish I knew. It's her latest get-out; if she can't be bothered, or doesn't want to think, then "I don't know" stalls any kind of conversation. A look at her schoolwork. Big grey scribbles. Which apparently puts her at the bottom of the 30 children in her class. Not a problem, and I know it's not a competition. But why does everyone keep saying "She's such a bright little thing", "she's as smart as a whip", etc., when on closer examination she's actually really quite hard of thinking? I don't care where she is in relation to her peers. I do care that her learning disabilities are being somewhat sidelined by her physical disabilities and complex health needs. It's a good school, and the welcome they've given to her and to all her therapists has been incredible; she's very happy and it's definitely the right plce for her. But still... she can't catch up when they run around in the playground; it'd be nice if she could catch up at least occasionally when they sit around a table.

And then home, and two girls happy to see me, less happy to do the bedtime thing. And a pile of letters, new appointments, more commitments, and one big fat annoyance I'm too cross to blog about and will instead go to bed and stew over.

Night.
Tia

Freedom?

If everything goes as planned (and how often does that happen?), I think I might just have survived my last ever Scramblers. A nice, ordinary, morning, only two Calebs this time and no interruptions. In fact, total, engrossed, silence as the story teller told her tale*. Some bewildered desolation when they realised that the changes from last week are going to stay changed -no more squash and biscuits but plenty of fruit and water. One small boy whispering weepily "oh where is my biscuit?" But, no longer my problem, I've finished my last sunday, and might actually be able to get back into church again. Between rota'd Sundays, Sundays where I've had too many extra children to be able to justify the dump and run approach, and Sundays when one or all of us have been ill, I think I've managed just one Sunday morning in church since the beginning of September. I'm quite looking forwards to being able to be a grown up again.

Home, managing to dodge the horizontal rain showers, but in doing so managing to roll Little Fish in her wheelchair, landing her face down in a puddle, her chair on top of her. Cue one fat lip and banged eye just in time for school tomorrow. Lovely.

And then no more rain, and a beautiful walk over to my parents' house for an equally beautiful lunch (and no washing up). Starting to think about Christmas presents, I cryptically suggested Snakes and Ladders as an option for Little Fish. Too cryptic; Mum promptly found a set she'd been saving for the right moment, and handed it over there and then. Oh well; it showed I was right; LF did indeed enjoy playing it and actually understood most of the rules (although not the point of keeping your counters on the board and not in your mouth...).

Back home again, via Budgens for some essentials, and via church to drop something off. Mog and I did the Budgens run, Mum and Little Fish did the church bit. And then Mum turned up without Little Fish, having left her at church gatecrashing a Light party. It would have worked wonderfully, except she was overdue a trip to the loo, so I had to extract her. A quick conversation, and both girls stayed at church leaving me free to saunter home and enjoy the freedom.

Until I got home, and realised my doorkeys were in Mog's bag.

Dumping the shopping by the front door, I sauntered equally slowly back to church, kicking through the leaves as I went, and pretending I was having a nice long healthy Autumnal walk. And then I realised I'd left my purse in the shopping bag, which I'd left by the front door, because who was likely to be interested in a packet of ham and some chocolate spread?

Picking up the pace, I crashed the party for the third time, extracted the keys, admired Little Fish's instant integration into the group and smiled at Mog with a pile of glitter. And quick-stepped it home to find bag safely on the ramp with purse neatly sticking out from the top. Sometimes my incompetence impresses even me. But I'll go for "don't we have an honest neighbourhood" instead, combined with minor impressedness with the fact I had for once failed to leave any easily accessible windows open.

After which, the free afternoon I thought I'd suddenly gained had somehow shrunk to half an hour, far too short to do anything sensible. So I sat down and did nothing, and revelled in the peace.

There's something about the silence of a house with no children in it which is utterly different from the silence of a house with sleeping children. The lack of snoring and ventilator sound effects could have something to do with it, I suppose, but it's more than that. It's the luxury of knowing I could be doing anything at all in these few minutes; I could leave the house without arranging for alternative care, I could put earplugs in or play music really loudly, I could cook and eat soemthing without having to share it. Or I could choose to just sit quietly, and be off duty for a while.

Bliss.

And from tomorrow, I should be getting a solid six hours of that on a regular basis again. Hurrah!
Tia

*Which leads me to wonder, why can the 3-5 year olds in Scramblers stay silent for a story, the 7-10 year olds in Brownies stay silent too, and yet we cannot get total silence for even 30 seconds from the 10-14 year old Guides? What happens when they move up, and why do they suddenly think muttering in an undertone isn't going to be heard by the Guider trying valiantly to make herself heard over the top?