Friday, 31 July 2009

Girls' Night!

The firemen came. By three o'clock the chip chip cheep had finally been replaced with a shiny new and blissfully silent smoke alarm (silent once tested; it's not totally silent all the time. This would be less useful). I have a better phone number to ring next time one of them plays up, and am reassured by the fact that it wasn't in fact supposed to do that, so it wasn't something I was doing wrong. Phew.

Tempers were getting a little frayed here by the time they had gone. Little Fish had experimented in making biscuits float in squash, seeing how many packets of lentils could be poured onto the kitchen floor before Mummy's head exploded, working out exactly how many "NO STOPPIT NOW"s could be safely ignored before Mummy managed to swim across the lentil sea to stem the tide, exploring how much paint could be removed by a powerchair being driven inside against the rules and against the discussions we'd had twenty-seven seconds earlier, and seeing how many cables can be pulled out of the computer cupboard before the printer fell on her legs. Fun times.

A new trick - when I pick her up out of her chair to plonk her down somewhere safe so I don't kill her whilst I tidy up, she has started lifting her arms above her head and relaxing her whole body, ensuring that she flows through my hands like, well, lentils out of an upended packet. Catching her before she falls is painful to both back and wrists. She's also taken to calling me by my first name, without even adding the "Mummy" as a prefix. This is surprisingly upsetting; I know she's not intending it to be so but it feels as though she's denying our relationship - and she's the only child who is able to call me Mummy; I waited ten years for that.

So her getting bored, frustrated, and obnoxious, me getting angry, furious, and tired, with Mog laughing at the pair of us, I loaded the bus and we drove out to pick up more supplies for our holiday. Screeches from the backseat driver; a tantrum about the seatbelt, many complaints about my choice of route, and finally three hundred and twelve "why?"s. Air conditioning blasting to cool hot heads, the girls' choice of music rumbling away and drowning out speech, and finally things were calm enough to plan the evening.

Bus unloaded - more tantrums about the order of unloading, fury about the idea of going to the toilet, but inspiration. Three of us all into pyjamas amidst ongoing screams and sobs and "No more pooeys" and "no tubie please no tubie" and "Argh no no cathing me my wee must absolutely stay inside", and then three of us all slumped onto my bed, with a tray of food and Mamma Mia; school having told me this was Mog's current favourite.

And the film began, and something happened. Mog grinned, and relaxed into my left armpit. Little Fish ate some food, and shouts turned to sniffles, a sleeve was sucked, and my right armpit suddenly had an occupant too. And then the music got louder and more insistant, and Little Fish and I bounced Mog on the bed to help her dance, and suddenly we were a family again, laughing at shared jokes, mushy peas smeared across three faces (and the pillows but hey ho) as we became Dancing Queens for the night. Holding hands and snuggling and cuddling, lap swapping and jumping and rolling, loving being together again.

And then the film finished, and two girls subsided, safe in my arms and at peace with the world. And Little Fish went to bed without a fuss, and was asleep before I'd got Mog off my bed and into hers. And Mog isn't asleep, but is lying in bed singing softly to her music. And it feels so late for all of us, but it was barely 7.30. We've had an evening together, and now I have a whole second evening just for me. Now that's what I call music!

And the Beep Goes On

No firemen yet. This is upsetting Little Fish, who is convinced they will turn up in what she insists on calling a "Nee Naw". It's upsetting me too; the beeping stopped at around 4PM yesterday, and I breathed a sigh of relief. I climbed into bed at a nice civilised 9.30, and as I turned off my light at 10, the alarm started its merry tune once more. And so it goes on. We escaped for a brief while this morning; our cleaner promised to open the door if they arrived, so we nipped out to do some of our necessaries. And now we're home, and tired here once again until they choose to turn up.

I do understand this isn't an emergency. Things on fire, people trapped, road traffic accidents, even cats up trees, far more important than one small smoke alarm chip chip chipping away in one little flat in one corner of the town. But the fire service insisted we had this rather than the battery replaceable one, and rather than a mains-wired one. They chose it, they supplied it, they fitted it. And if they don't send someone round to silence it soon, I might just be forced to set fire to it. Would that make it more of a priority, do you think?


Thursday, 30 July 2009

pip. pip. pip.

I lied. It isn't every thirty-seven seconds. It is every one minute and three seconds. This is, as it turns out, just enough time to begin to fall asleep, slipping softly into gentle slumber until suddenly PIP and I am awake again. Door shut, pillow over head, and the PIP reduces itself to a gentle peep, which would be ok except then I can't hear Mog if she needs me in the night.

I phoned the fire service this morning - they fitted it, and made sure it was one which cannot be fiddled with by anyone. They will "try to send someone out to fix it soon". Meanwhile, every one minute and three seconds, PIP!

More post this morning. A new referral for Mog; great. Except that it's not. A date when we're away, for a doctor who is the right speciality (spinal consultant) but not the man Little Fish sees. I do prefer them to have the same doctors where possible; makes combining appointments much easier. New date arranged but no change of doctor. Ho hum.

A parcel in the post again, more excitement. Except again, not really - the company who sent the Wahooligan's medical supplies here by mistake yesterday have sent the urgent replacement supplies here yet again. Not entirely impressive. What is quite impressive is the fact these are being posted from somewhere just a few minutes from his current address and yet they are still choosing to send them further rather than just around the corner...


Wednesday, 29 July 2009


Three parcels in the post this morning, hurrah. Except that the first was medical supplies for the Wahooligan, delivered to the wrong address. The second was a reprint of the photo books I made for Great Grannie's Birthday, with the same errors repeated on them. And the third was an iPod to replace the one which got wet, only it isn't the same model and won't work without headphones, so isn't any use to Mog.

A lovely day with friends. Peaceful, despite at one point having nine children with just two adults. Cake and conversation; good times. Lots of coffee, and only after the 3rd or 4th cup did it register as uncaffeinated; no, it doesn't affect the taste but it certainly affects my energy levels. Another cup, and another, and the waking up just wasn't happening.

I blame the strange friends who manage to function adequately without the caffeine - including picking uncaffeinated diet coke for lunch - for what happened next. A short drive home through the rain, calling in at Homebase for socket covers, for tomorrow I have a fostering-related health and safety inspection, and all my sockets should be protected from prying little fingers. Found the socket covers eventually (ok - I didn't; but the helpful chap in uniform did. I think he worked there. I do hope so - but thinking back I'm sure their uniform was green last time I was there, and this chap was wearing navy. Oh well), queued, watched them scan, then realised I'd left my purse in the van. Oops. Mad dash through the rain back to the van, grabbed the money, requeued, finally managed to pay and exit.

Back home and one very tired Little Fish informed me that her friend P's Mummy had told her she needed a shower tonight. Thanks, friend! Ham sandwich and a biscuit for tea which makes three meals in a row.

Opening the door I was greeted by the cheerful piercing chip chip cheep of a smoke alarm with dying batteries. This would ordinarily be fine, except the fire service replaced my battery operated smoke alarms last year with ones with integral batteries. This is now glued to the ceiling and cannot be opened or removed. Good thinking, chaps. Every 37 seconds we get a new chirp from it. I've tried prying it from the ceiling, I've tried hitting it with a broom, I've tried muffling it with a towel. It is of course the smoke alarm by the bedrooms, not the one in the playroom...

I'm shelving the problem for now; I have a babsitter tonight and she's due in 15 minutes. I'll hand her the broom and tell her to get poking - it's possible to reset it for about 20 minutes at a time but only by manually setting it to alarm properly. It'll be her choice which she prefers. Meeting old school friends tonight which should be fun; provided I can stay awake with my caffeine levels at dangerously low levels. Perhaps I should order an espresso aperitif.


Tuesday, 28 July 2009

Little Fishisms

"Mum, Mum, Mummy, Mummy, um excuse me, Mum? Can I borrow your teatowel I can?"
"Acos I need to be sick in it."
Manners and self control; what more can a parent ask for?

"Mummy, my pretty hat is extremely beautiful"
Yes, sweetheart it is, and now you need to stop watching quite so much Charlie and Lola... Thankfully this will be easily accomplished; the DVD player did not appreciate last night's offering of strawberry yoghurt.

Halfway to our appointment, calmly and in an observational manner rather than any kind of panic or urgency - "Mummy, you not got my wheelchair, you not did."

Still made it to the appointment in plenty of time, not too long to wait at xray, a regular herd of other parents to talk to. Lunch on the hoof and then Tesco, and suddenly an 11AM appointment has lasted all day long. Home now and just time for a ham sandwich and a bout of Norah Jones for Mog, and then our carer will be here and the day will be over. I like days like this.


Monday, 27 July 2009

Google Roundup

Haven't done one for a while.

Can a child wear a hensinger collar when sleeping? Mog does; she doesn't wear it when she's sleeping in bed though. If you find the answer, can you let me know? I'm sure it would help on nights when she's obstructing badly.

Politically correct word for chicken pox. Chicken pox is non-pc these days? You learn something new every day. Chickens, I'm sorry if I offended you. Still no spots here, if anyone was wondering. Mog's coughing and Little Fish is tired, but Mog's had the pox so whatever's bothering her, it isn't that.

collapsed in a heap. Who? Where? When? Why and how? If it's you, then glad you recovered enough to google it - you might find "faint" a better term to search in future. Please get yourself checked out if it happens again. If you've just found someone else in this state then unless you know they're drunk and sleeping it off, I suggest you find more immediate help than my blog. A first aid course might be a useful thing to consider...

Been an odd day here. Respite this afternoon; three hours which I squandered on finding a new padlock for our garage; the old one having rusted fast. I now have a lovely new high security one, which I will fit just as soon as I can work out how to remove the old one; key not working and it's supposed to be bolt-cropper-proof. How long do you think I could work at it with a hacksaw before someone called the police? Answer is actually no time at all; all my tools are neatly stored inside the inpenetrable garage...

We had a therapist visit this morning. She told us that, unfortunately, we probably won't get any more therapy visits this summer, as the therapists have all been seconded to staff the Tamiflu Depot. There's a good idea, take the therapists who have Monday to Friday, term time only, contracts, and require them to provide rotating cover handing out drugs to the close family and friends of those suffering from the porcine plague. Then send them back out into the community, to work with some of the most vulnerable people in the county, having been in close contact with those who are caring for people with the swine flu. I did tell her I was more than happy for them to keep away in that case.

I did acheive something today though - I found my bedroom floor! Hurrah for me; it only took all day.


Sunday, 26 July 2009

Take the shackles off my feet so I can dance

A beautiful sight in church this morning. Summer is here, so all age worship is the order of the month. Seats are turned around to face each other, children sit on a carpet up at the front, and there is an energy brought to the service. It's the energy brought by small people, wriggling and jumping and putting their whole hearts into the singing, putting those of us who prefer to sing quite loud with a dignified clap* to shame. It's the energy created by the people leading, knowing that rather than leading relatively docile sheep their morning's task is more akin to herding kangaroos, knowing that any minute one may break free. It's a restless enthusiasm mixed with a modicum of disapproval, hope and nervous anticipation of parents with children just out of reach, and roof raising, rattling good tunes with a reasonably large measure of God thrown in there too. Oh, and sweets or chocolates and quizzes handed out by the cannier ministers.

That's just setting the scene. Today was something special. Two sisters sat on the carpet together with the other children. One in a summer's sundress, a floaty twirly dress, with hair in bunches and bundles of energy. And the other, younger, smaller, slower, practicing her sitting skills and loving being with her bigger sister. The music started, and the sisters danced. Little sister moving to the rhythm of the beat, arms raised, head held high and loving it. And big sister twirling and hopping, jumping and spinning, grabbing her sister's hands and then taking off again to dance.

And the other children, mostly older, simply made way for these girls to dance their joy. A circle formed around them, giving both girls the room their dance commanded. Not joining in, not condemning or laughing at them, simy moving across and forming a circle around them, letting the two twist and spin and praise and celebrate. And then the music stopped, and we all sat down, and the little sister twisted around to plonk her baby-pudding self onto her big sister's lap, and everyone was ready for the next part of the service. Love, joy, and acceptance. Beautiful.

*I had here planned to put up Adrian Plass' Anglican Rap
(Let's kneel, let's stand, let's be terribly bland,
Let's sing quite loud with a dignified clap,
Let's process around the church in a victory lap,
From the Isle of Wight to the Watford Gap
Everybody's doing it, the Anglican Rap)
but I couldn't find it so you'll have to settle for the chorus and my apologies if I've got it wrong.

EDIT: for anyone not automatically hearing the chorus when they read the title of this, L sent me this link - now you can all share the earworm!

Saturday, 25 July 2009

You do keep them lovely

said my neighbour, as we passed her on our way into town this morning. I'm just pleased she met us before we had lunch, where Little Fish had an unfortunate incident with a cherry tomato.
Mog chose to stay lovely and avoid even tasting the food by sleeping through our meal.
And then we meandered our way home. We do attract a fair bit of attention wherever we go; today one man assumed I had a remote control for Little Fish's wheelchair and was utterly overwhelmed when he realised she was driving it herself. Small boys crashing into lampposts whilst staring at us is par for the course; adults usually have things slightly better coordinated but still weave around a little.

Today Little Fish added traffic mayhem to her list of achievements. I tend to beckon to her with my hand when I want her to come to me, and reinforce my "ARGH STAY STILL THERE WILL BE MAJOR DISASTER IF YOU MOVE ANOTHER INCH OFF THE PAVEMENT" type squawks with a big handwaving STOP sign. Little Fish has clearly not been oblivious to these signs, despite the impression which might be gained by her persistant ignoring of them. Clearly, she has learnt these and picked up other Carry On/After you/no after you, I insist signs dear to the heart of the considerate English driver. It is unfortunate she chose to utilise her "please do pass in front of us" sign in waving to the driver of the large parked 4x4 just as I was stepping off the kerb in front of him with Mog. But what driver accepts hand signals from a four year old over the actions of a madwoman mother?

Disaster averted, we continued our trek until a tall and somewhat elegant woman meandered purposefully towards us, missing the edge of the path and landing painfully on the road in front of us. Disdaining my help, she tottered upright again, made it towards the kerb before collapsing in a sprawling heap on the road once more, confiding to us that she was late for a wedding (hers? She was wearing a white hat and miniskirt so I suppose it was possible. But unlikely I hope). I reached over to help her up, but she insisted she needed to stay in the road to be out of the way of my girls. So I stood and diverted traffic for a minute whilst an increasingly hysterical Little Fish wobbled around on the pavement looking for a dropped kerb (which, thankfully, she couldn't find).

A woman stopped and leapt out of a car to help us. Thinking we were together, she attempted to reunite miniskirt woman with Little Fish, who reacted with predictable hysteria to the suggestion that this stranger was her mother. We managed to get things sorted out with our first helper, at which more passersby began to help, also assuming the woman was with us. Eventually a woman from our housegroup stopped and persuaded the stranger into her car to give her a lift to the wedding venue. I do hope she appreciated this woman wasn't originally with us before making our offer. And that the woman didn't pass out in her car. I should ring and find out really. I didn't stick around once we'd been separated; too many people were trying to make us into a foursome and whilst Mog was quietly entertained by it all, Little Fish was growing ever more purple. And the woman herself was somewhat confused and keen to help us out; I had visions of her deciding to skip the wedding and insist on helping to push one of the girls home.

So we made our way towards home, taking a short cut through one of the housing estates which separates our own estate from the town centre. And got ridiculously lost, at one point walking around in circles until we bumped into (although not literally, this time, just for a change) friends from church who pointed us towards a cut through. Actually they pointed us towards two, and we took the wrong one, which dumped us out again on the mainroad just a hundred yards or so up from where we had abandoned weaving woman, but at least we could then start again and finally trek our way properly home.
Little Fish went on strike at this point, having had enough differences for one day. And here she is refusing absolutely to move from the side of the road, simply because I chose to cross at this crossing and not the one ten yards closer to home. She's becoming very rigid about the right and only way to get to places, and now gets hysterical in the back of the bus if I take what she deems to be the "wrong way" home from anywhere. Fun times.

So then we finally eventually got inside, unloaded our by now somewhat warm shopping, and collapsed in a heap for an hour or so. And that was our Saturday - how was yours?

Friday, 24 July 2009

24 hours

11PM: Mummy, I need to roll over.
11.36PM: Mummy, this side now.
1AM: Mummy, I need a roll over
2.21AM: Mummy, I need a roll over, I need a kiss, I need a cuddle, I waking up now please?
3AM: Mummy, I need a roll over, I have Charlie and Lola now? Oh why I need sleep?
5AM: Mummy, this side now please oh pleeeeeeeese
5:39AM: Mummy I need roll over again.

6:30AM: My alarm
7AM: Mog's morning carer.

And then silence. And the rolly over monster slept. And slept. And slept. Mog's carer left, and Little Fish slept on. The cat knocked over a pile of dishes, and Little Fish slept on. The phone rang, the mobile phone pinged and beeped and dinged and clicked, and Little Fish slept on. The cleaner arrived and began the bashing and clattering which is an essential part of any good clean. And Little Fish slept on.

10.45AM and finally my revenge - "Time to wake up". Five minutes to wean her from her Nippy, ten minutes to get her dressed, five to pour some milk and meds into her and ten to load the bus, and only half an hour late to meet friends.

Fourteen of us apparently effortlessly absorbed into one friend's house, adults and wheelies in one room, older children disappearing to bedrooms and a younger child trekking through the downstairs in a mission to find fruit and create chaos. Lots of coffee, lots of food, lots of laughter and somehow suddenly it was 5.30.

And now the girls are in bed (late but happy), the house is clean as we've not been in it all day, and the many and varied one liners friends suggested for another "you know you have a disabled child when" type post have all floated away from me. So since I know they read this, I challenge them to post them in the comments section if they happen to remember them themselves (the ones which are repeatable anyway!); meanwhile I am going to make the most of a quiet house and try to catch up on some of last night's sleep.

Thursday, 23 July 2009

Mirror Fish and More

Little Fish with her new best friend. I'm loving it. Today Mirror Fish was instructed in the fine art of selecting the right hat, holding hands when dancing, our future holiday plans (some of which were definitely news to me), and why one should refrain from drawing on the bedsheets (answer: because Mumma gets cross). Apparently Mirror Fish was a very naugty girl today; and then she was a very tired girl so we had to leave her alone to let her rest. Ours not to reason why, etc.

A different kind of fish; a friend moving house has restocked our tank with the fish she can't take with her. Our lone platy not entirely sure what to make of these invaders, and the new ones not quite sure about the tank either. But 24 hours in, no deaths yet, and perhaps that's all we should be looking for right now. The new fish are oddly fascinating; I keep getting distracted on the way to fetch meds and only move when I realise I've been hovering long enough to stiffen up.

Blogging from my phone again; having had beautiful Internet for a day and a half, this afternoon the line went down and wouldn't come back again. Frustrating.

Wednesday, 22 July 2009

Pox Watch

So we're officially on Pox Watch. My niece, who is staying with my parents (and the rest of her immediate family; she hasn't been abandoned), has come out in a richly beautiful chicken pox rash. This isn't my niece but Mog when she was poxy. Niece Minnow and Little Fish spent the day together on Sunday, so we're now watching and waiting to see whether she caught it then or not. Would be nice if she got it out of the way before school proper, but less nice if it scuppers New Wine for us. Time will tell.

Meanwhile niece is feeling very sorry for herself, and Grannie was despatched here this morning for emergency supplies; medications and DVDs and anything else we could think of. Little Fish was very pleased to be trusted to show Grannie the way to the chemist to pick up some anti-itch remedy.

Later, Little Fish recounted the whole adventure to her friend in the mirror. I love her mirror friend; she is endlessly patient and loves listening to all LF's stories. Oddly enough, Mirror Fish seems to have similar stories to tell. The monoduologue is fascinating; full of the monotony of daily life with snippets of pure fantasy, sadness as she relates the story of how her cat died, and worry as she practices a rote apology for something she didn't do "so we be friends again". Each apology requires a cuddle and a kiss and must be carried out just so, including listing the offense as well as the apology; I think she has been affected by a certain other child's poor behaviour in the run up to the school holidays. Mirror Fish seems to be helping her work through it which is handy.

Fun times; a babysitter tonight but with no arrangement to do anything. Housegroup not meeting, other plans rained off. So I did something I haven't done spontaneously in the evening for seven years now, called in to give a message to a friend and stayed for a cup of coffee. Nothing major, nothing likely to shake the world, but big enough for us.

I snuck out of the house quietly, leaving two girls almost asleep and not having had the usual conversation with them about our sitter arriving. LF likes to know where I'm going and that I'm definitely coming back. She was just about asleep though so I didn't disturb her. And apparently once I'd left she called our sitter in, and instructed the sitter that she needed a bedtime story. She then read said story to our sitter before telling her she needed to sleep now, goodbye. Definite progress. And possibly worth keeping the sitter coming through the holidays in order to keep the routine (any excuse).

Coffee with a friend, and with babysitting hours still spare, I ran through Tescos, where I inexplicably managed to pick up not just the binliners I needed, but six packs of breaded scampi I definitely did not need, two packets of peas in their pods (one of which inevitably burst as I attempted to put it onto the checkout belt), and a packet of sliced tongue which needed to be eaten on the way home. These things happen.


Tuesday, 21 July 2009


Mum, Mummy, Mum, Mummy Tia, Mum, Why we going out?
Why we going shopping?
Why we need food?
Why we get hungry?
Why we need to eat?
Why we eat to grow?
Why we...oooo Mummy, you a bit shouty.
And one member of the household who is jolly pleased I have had no laptop for the last couple of weeks.
The first time he's sat on my lap properly since he moved in I think. Great.

But what's this? More than one picture? That can only mean one thing - I HAVE INTERNET ACCESS ONCE MORE!
Thank you, Mr Fixit! And Mrs Fixit for loaning him out. Oh, and Master Fixit for going to bed without Daddy's help.

Scared to go to bed now incase it all fades away again overnight...

Monday, 20 July 2009

Nor day nor night no net

As tedious to read about as to live I'm sure. Today I tried a third modem and various different hardware combinations. Pipex resolved one issue but left two different ones, unkindly advising me to google the solution to one of them. A router issue partially resolved and I'm now informed the rest of the problem is to do with Vista. The world tells me I have an Internet connection; the computer tells the world otherwise. Annoying.

Meanwhile August holidays and red tape would appear to be combining to make it unlikely Little Fish will have a wheelchair in school for September unless I pay for it myself, but if I do that the education department "has no mechanism to make a reimbursement". A compromise; I will place the order, finance will "get onto it" in September, and I will have to sue if they aren't forthcoming. Quite why everyone agrees this is the most sensible option I'm not entirely sure, but the alternative would appear to be LF chained to a plastic school seat whenever her powerchair is unsuitable. I am not overimpressed at having to explain to three different people all in the same room exactly why leaving LF without a wheelchair at home for six weeks was unacceptable. We can't transport her home chair daily; it wouldn't survive the trip.

Good news though; the chair she will be getting is Otto Bock's newest creation, the Bravo Racer. Sturdy but lightweight, sporty but actually approved for transport, low enough for her to reach the floor but room for growth. And only double the price of her Minny...

Mog showed her contempt by kicking the rep repeatedly whilst LF chose a red frame to match her new uniform.

And then another education meeting; the local ptb have decided we don't know what we're talking about and that LF does not really need 1:1 support throughout the school day. Those who do know LF have decided that yes, actually, she does, and will not be safe without it. And so it is unlikely that she will now start fulltime in September as planned; she'll have to come home once the funding runs out which will be an hour earlier than her peers. At least it'll shelve the problem of how to be both at home for Mog's bus and at school for LF at the same time for a while...


Sunday, 19 July 2009

Still here

Still here, barely. My brother came over yesterday with a new modem and tried to fix my Internet problems. No luck, it seems to be a
provider issue not a local one. So no access still, and my phone getting increasingly unhappy about its workload.

The house is very definitely tidier than normal. The to do list is running down. Our days are taking a different shape, the hours not spent online are free for other things. I tell myself this is good. I'm not convinced...

Today was very definitely good though; a ninetieth birthday party for Grannie, Great Grannie, Mum, Auntie Georgie or George depending on your position in the family. Rain scuppered our original plans, but everyone seems to have agreed that plan b was actually preferable. A BBQ at Grannie's new church, beautiful grounds and a lovely peaceful space inside with comfy chairs for those not so keen on sitting outside under gazebos listening to the rain. From Grannie's older brother down to the 4 month old great grandson with brothers and cousins and friends and neighbours and uncle tom cobley and all. Food and conversation, the fourth generation running around and over the second and third generations, a nice gentle sort of a day.

And now Little Fish has returned my camera to me, and both girls are tucked up peacefully dreaming of cousins and chocolate pudding. And I shall find myself a comfy chair and catch up on some more of my reading.


Saturday, 18 July 2009

Happiness is

Being back on two feet again. And having grown enough that there is a nice safe gap between chest and hip support so your gastrostomy button doesn't get caught.

Unhappiness on the other hand - well that's one of the many feelings I'm sure a recent decision has left my friend Trina feeling.

Please click on over to her blog and read her news.

I don't know how they will manage now - Jophie's needs can't just be shelved for a month or two, bills still need to be paid, and Trina does have to sleep occasionally, even if it is only for 30 minutes here and there as Jophie's needs permit. Trina has always worked as much as she can - her boutique clothing is unique, her jewelery (when she could afford to buy the silver) was imaginative, and now her recipe book is the result of at least a year of cooking, tasting, tweaking. All her efforts have gone towards meeting Jophie's costs over and above his allowance. And now that allowance has been discontinued. And suddenly I'm too aware of the distance between Ohio and here, especially now without proper access to the Internet. Please spare a thought and a prayer for Trina and Jophie, and if you have any ideas for ways she can earn money from home working around Jophie's care then I'm sure she would like to hear them.


EDIT: Triba's address is now correct, sorry folks.

Thursday, 16 July 2009


Because sometimes no one else will do. Whether it's first thing in the morning before the day begins, or in the middle of the school day when a party has thrown out the routines, or that magic time of day when the school bus lumbers its way up the drive, or last thing at night when sleep can't be fought off any longer. Any time, anywhere, a kiss from a sister makes the world a better place.


Wednesday, 15 July 2009

Little Miss Independence

What do you get if you cross a small child in a powerchair, a
hydraulic tail lift, and a high wind?

One rather deep dent in the bottom of the door, that's what.

The wind blew a cup away, I ran after it. Little Fish unfolded the lift and took it down to ground level. So far, so sensible. LF then
drove herself onto the lift and raised it back up again, not registering that the door had blown back over the lift.

She's still convinced I was just being mean when I grabbed the controls and lowered her down to start again.

It doesn't look like much of a dent, and so it isn't, except that it's rather inconveniently just enough of a ding to prevent the door from latching properly. This in turn makes it impossible to lock the door, and the joys of central locking make it impossible to lock any door at

Hurrah for Hemmings; a man with a hammer bashed the worst of the dent out and charged us exactly nothing for the privelige. But now I need to squeeze out a day when I can be car free so the panel can be fixed
properly and made rustproof again. Better the door than her legs
though I suppose.


Tuesday, 14 July 2009

Ups and downs.

Mog's new head and backrests arrived this morning. I think it's safe to assume she likes them. Instant growth for her; she sits three inches taller now; head gently cradled, shoulders supported, sides snuggled in no longer scrunched and twisted. A sign of comfort; she was asleep in her seat by the time we had finished tweaking the chest harness.

That's the up; the down would be for Little Fish. A phonecall to let us know the local education authority have refused to fund the full support she was promised (and needs) for school next year, leaving her short by one hour each school day.

A call from our nurse giving us a choice of antibiotics for her latest gastrostomy infection; both ups and downs here. Bad that she has an infection, good that it is not on this occasion MRSA. Good that it will respond to antibiotics, bad that she will therefore have an antibiotic tummy for the end of term. And then a late phonecall from the duty doctor; bad that the fax did not come through early enough to get treatment sorted out to start tonight, but good because I was able to request a bottle of oxybutinin at the same time, having realised too late that we have no spare bottle and the present one will run out in the morning.

And then an evening out for myself, an up. A barbecue in the pouring rain; probably a down. Some beautifully marinated chicken; definitely an up, but another late night, and the second of three nights in a row out of the house, probably a down as far as Little Fish is concerned.

One nice up though; training for the new school staff all going ahead as planned, the school still seem to be keen and willing to learn. And, in a neat piece of continuity, one of the staff trained today to meet LF's needs is the daughter of LF's present nursery nurse, and will be Mog's Brownie Guider in September.

More ups than downs I think; it has felt like a good day anyway.

Monday, 13 July 2009

Mog Time

Mog has had a really good day today. An early start, and a shout shout kick for coffee- first time she's wanted breakfast since Easter. Home from school later, and still offensively cheerful; singing and shouting and generally being rude in a way only truly possible when you are non-verbal and surrounded by people who can interpret your facial expressions. Kicking my shins (just as well she isn't wearing shoes these days) to ensure her share of our evening meal, and slurping and swallowing a tablespoon sized portion of mash and gravy. More food than she's wanted or managed since last summer I think.

A quiet flop onto the shower bench later, and unprotestibgly shuffled into her nightie. And then big fuss, big tears, howls of outrage at the bare thought of bed. Little Fish by this time tucked up and our sitter here, Mog's protests growing ever louder and more forceful. So we bundled her back into clothes, and into the bus, and I trundled off to Guides with her in tow.

A nice evening for her to reject bed; a campfire and wide game up at a little cottage in the woods. Park the car and push her buggy up the hill and through the nettles, follow the noise to find the girls, and then sit downwind and enjoy Eidelweiss and Campfire's Burning and Everywhere We Go. And embers just right for marshmallows, and the creak and groan of wooden shutters on the windows of the ancient cottage. And a sun slowly slipping from view, and the squeak of bats emerging from their boxes, and the gentle smack and splat of hands seeking revenge on midges. Giggles and woodsmoke and a gentle breeze, and Mog cooing quietly and taking it all in, preparing herself for a week of this at the end of August.

And then home again, and into bed. And suddenly the woodsmoke becomes not the gentle scent of summer but an overpowering smeech; alien and unwelcome within the four walls of home. Three hours past bedtime though, so too late for a shower. Instead as the smoke settles in hair and clothing, a small child now finally settles into bed, welcomes the same bed she rejected with such determination three hours ago, and settles down towards sleep with just a musical coo echoing her contribution earlier in the evening.

It's not a bad life.

Sunday, 12 July 2009

Resistance is futile

Mum, I wanna ast you something. Mum, Mum, Mummy Tia, I need to tell you something. Um, I would like a likkle pizza please. Please, Mummy, it would be very nice and I am a bit hungry. You order one, pleeeeeeeese, Mummy, a pizza with the man bringing it in a box and we can eat it. We could ave one Mummy, we could. I would like one it is my favourite and my best it is.

Anyone care to explain how one small child can eat her own bodyweight in pizza with no I'll effects and yet choke on pasta, gag at the sight of a bread crust, and refuse to allow anything green within three inches of her face? How can h
she retch on a banana milkshake (tubed) and have space for slice after slice of garlic bread? And why are cheese and ham on a plate something to cry about but cheese and ham on a pizza something to celebrate?

Do Dominos make cauliflour and courgette pizzas? Oh, and why is pizza in a box from a man at the door her favourite and her best, but pizza from my fair hands and pizza from the freezer both objectionable?

Readers, we ate the pizza.

Long day today. Up early, and for once LF consented to eat her breakfast (1/2 a slice of toast) in somewhat less than 30 minutes. Smart clothes all round; matching dresses for the girls to LF's delight and Mog's displeasure. All dressed, hair brushed without tears for once, polished shoes, ironed tops, and a reasonably clean house too.

Off to church where for once we managed to be early. Girls delivered to their various spots and I to my semi regular slot into the next-but-one-to-the-back-of-the-rows-in-front-of-the-door aisle seat. It's a comfortably safe spot. Close to the exit if needed by crying child. Or if the church should suddenly burn down; an unlikely prospect but important to be prepared and ahead of the Zimmer brigade . Within smiling distance of several housegroup friends, handshakeable distance from the earnest brigade, and shoulder polishing reach of woman whose name I am now resigned to never remembering. A safe distance from the drums and out of wincing range from the speakers; a spot nicely placed to give a good view of most of the rest of the church whilst still being able to read the words on the screen in front. And for once, feeling reasonably smug - not late, no toast crumbs or coffee stains, proper shoes and even a skirt- and a skirt which i had tied in several different ways in front of a mirror before leaving the house to ensure it was neither inside out nor at risk of unwrapping itself and revealing a pasty white leg during communion.

And then the service started, and I put my hand up to my collar, to loosen off my tshirt. And then my fingers found a label, and I realised my tshirt was on back to front. And then I wasn't feeling so smug any more.

I am not cut out for smart.

Saturday, 11 July 2009

Two years ago

Two years ago this week my Goldie moved out of our house and into her own, the first young adult to move into what would become a shared Supported Living house. Not a Group Home, but her own home, her own tenancy with her own staff to support her. Better than a Group Home, we were told - and still believe - more freedom, fewer regulations, and better funding leaving more money for holidays and general life enhancers rather than just the basics.

Two years ago this week, Little Fish and Mog and I were spending all day every day giving Goldie's new carers a crash course in Goldie. Goldie herself was wildly excited by all the attention, a little overwhelmed by the huge change in her routine, and totally lacking in understanding about the permenancy of the arrangement.

A brand new house with keen new staff, lots of kinks to work out but masses of enthusiasm to do so.

Somehow, just six weeks later, the unthinkable happened and my beautiful Goldie had her hideous accident. Two years later, I believe we now know as much as we ever will about the how and the what and the where and the when. And the why is something we'll never know. I'd like to tell her story. But still the legal process rumbles on; inquest over half a year ago and now the prospect of a criminal court case later on this year. And still the need to keep events fresh, to preserve my account to produce in court when needed.

I have no interest in this court case. My daughter died. I miss her. I chose to move her into her new home - or at least I chose to move her out of my home. I'm still reasonably sure it was the right decision. But the fact remains, if I had not, if she had stayed with me, she would probably still be alive today. My part in her death doesn't call for Legal proceedings to be taken against me; how can I be involved in prosecuting others who may have paid a part? And whether or not I play a part in this, once this is all over, she's still dead. So what's the point?


Friday, 10 July 2009

Preschool diploma

I'll leave it to the viewer to decide which of these three was the most important in the eyes of a Little Fish.

Lots of children all standing facing more or less the same direction and waiting for their name to be called, their sweetie sash to be fastened, and their book of photos and certificate to be handed over.

Two years of preschool condensed into an album tied with wool and ribbon. One tiny Little Fish wobbling in the floor, a more confident child waving a giant bubble wand, a very happy little girl playing on the swings and a very serious girl perched on a stool to do water play, with three pairs of adult arms outstretched to catch her just in case.

Not a bad summary of her time there really. Staff who supported her as she learnt to trust that I would always come back. Friends who accepted her with all her little quirks and who just enjoyed having her around. Her own determination to do everything the other children were doing, and her need to have an adult hand within reach to protect, to reassure, and to rescue on occasion.

Now just one more week of this school year (interrupted by a mere four appointments elsewhere), and then six weeks of what passes for English summer before September and the new challenges of Big School.


Wednesday, 8 July 2009

Back on the road again

I think it's reasonably safe to assume she's rather happy about being
mobile again.

The brace came off, she did many wheelies and spun round and round in
circles squeaking. And she has been on the move ever since, only
stopping to fall fast asleep once she can't move another muscle.

It's not all wonderful. The surgery has left one leg permanently three
inches shorter than the other. There are two deep fat scars running
down and around her hip. She's stiff and sore, and her sitting balance
has gone to pot. But she's mobile again and she's happy and
productively busy and she can pick her own things up off the floor
again. And we're all happy about that.

Excuse the tummy shot- her gastrostomy has exploded again and she
can't bear to have anything touching it.

Still no Internet here. I washed up three times today. And very nearly
hoovered. Scary!

Tuesday, 7 July 2009

So far so soggy

I'm not convinced the rice is helping. Meanwhile, the universe has
decided my life is not interesting enough, and my Internet connection
at home has been destroyed. New router needed. Happy happy joy joy. My
keyboard is now missing seven keys including most of the vowels, and I
poured half a pint of milk into my fridge door this morning. As well
as shattering the bottle.

Fun times.

Sunday, 5 July 2009


No not me personally.

Mog had an iPod for her birthday. An inspired present this; no more lugging around cases of CDs, she can have all her music on one small super smart little gadget. And she can lend it to her sister to doodle on and play with the calendar and calculator instead of causing mayhem on Mummy's iPhone.

We like it; nope, we love it. Mog gets to listen to her choice of music for hours on end. If she needs music on all night I can slip it under her pillowcase and quiet music will play into her ears and hers alone. The battery lasts for hours, the music capacity seems to be approaching infinite, or at least far more than Mog's current music selection, and one day I'll even figure out iTunes well enough to tweak the thing into even more intelligent behaviour.

That was the plan, anyway. Yesterday, after Mog's bath, we dressed her and padded her up and plonked her down on a beanbag so she could wiggle and kick and generally work herself into all sorts of non-physiotherapist-approved positions take the pressure off her backside. She had her music, Little Fish had her DVD player, I had my laptop and we all sat happily in some kind of space age technology-fest. Whatever; it worked.

And then it didn't work. The iPod was silenced. And Mog was laughing. And Mog had managed to wiggle until the iPod was underneath her, and then with fiendish good timing had managed a massive Movicol induced tidal wave which flooded the beanbag. Swimming is not, as it turns out, one of the iPod's strengths. It drowned.

I plugged it into the computer. Nothing. I left it alone for a few hours to dry out, and tried again. Nothing. I googled many things and tried most of them (avoided the "my iPod didn't work so I threw it across the room and then it did" one). Nothing. Just one smart shiny useless piece of metal. Tried again today and I think it's safe to say it's not a happy beastie.

OK, so an expensive mistake. Tomorrow I'll phone Apple and see what they have to say (I predict "we told you not to let it get wet, would you like to order a replacement?").

Today Little Fish's feed managed to soak my iPhone. My phone which is so much more than a phone, my phone which has photos and all my telephone numbers and my diary and all the girls' appointments for the next three years and just about every other piece of my life on it. And now it is not happy. And nor am I. I'm hoping that since it's just water not poo it might actually dry out. Meanwhile I know it's backed up; I'm sure there's a way of persuading iTunes to give me the information (and if there isn't, please don't tell me; I need to believe there might be). But one of its more minor features is going to cause me a bit of a headache - it is not only my phone (and my diary and my address book and my photo album etc etc etc), it is also my alarm clock. Tomorrow morning could be interesting.


Saturday, 4 July 2009

Mog's Morning

A lie in today; no carers until 8AM. Bliss. Mog woke up ready for the day somewhat earlier than that, but decided a good stretch and a kickabout in her bed sounded like fun. And it was, and as the carer and I soaped Little Fish's neck and wondered for the hundredth time how it could get so filthy as she slep, so Mog rattled her cot sides to the rhythm of her beat. And then it wasn't fun anymore, and a great purple-headed Fury replaced her. Sun up, and one superheated bed.

Carer having left, Little Fish and I stripped her off and dipped her superheated body into a beautifully tepid bath. I say LF and I; advocates for the emancipation of young carers need not write in; I stripped Mog and tossed her clothes on the floor, LF ran them over in her chair to ensure they really were ready for the washing machine. I carried Mog through to the bathroom, LF got herself tangled in the feed pump. I dunked Mog into the bath, LF dropped her DVD player on the floor and screamed. You get the picture.

Anyway, a nice bath, and a placated Little Fish gently pouring water over Mog's tummy and helping to spread the bubbles about her body. A window open to catch the faintest hint of a breeze, and wonderful calm over the household. Until I looked down and realised the tepid bath was now cold, and the mild breeze was now savage, the blazing sun outside had given way to menacing clouds, and Mog was blue and shivering. Pass the heated towels.

So in the space of ten minutes our day's plans moved from "mmm maybe a picnic" to "don't care where we go but it needs to be indoors andhave air conditioning", and from there to "actually I really quite like it just here, let's stay".

And so we did. And it was probably wise; three code browns and several refluxes and I think we did pretty well to achieve anything at all. The title says Mog's morning, and I really don't know where the afternoon went - Little Fish was still scraping the last of her lunchtime icecream from her dish when our evening carer arrived to put her to bed. Not that I mind late lunches, but she started this one at 11. Roll on Septemver and school dinners; she'll surely eat faster with the threat of missing play. Won't she?


Friday, 3 July 2009

It's all relative

All Ancestral, really. Am spending every spare half hour trying to create a big family album for a big family Birthday coming up later this month. It seemed like a good idea when my brother suggested it. And the Birthday seemed like a long way away. But now it's nearly here, the album is nowhere near completed, and all I can see in front of my eyes is little tiny pixellated photographs. Not good.

I can't share the album itself because a) it's not finished yet, b) I can't get the link to work which means family members can't send photos directly there but have to come via me - not great, and c) I think the Aged Ancestor ought to see it before the wider world. But here are some pictures which have made it out of my parents' albums and onto my computer. Whether or not they make it into the album will depend on how many other cousin photos I get in the next 48 hours; meanwhile, behold my youth! and marvel at its disappearance

Thursday, 2 July 2009


Too hot to blog.
Too hot to move.
Too hot to sit in any kind of position which causes skin to skin contact.
Too hot to sleep.
Too hot to do anything but sleep.

And then I look at Little Fish, who is in the same heat I am in, but wrapped tightly in a body brace and strapped into a plastic chair. And she is totally uncomplaining as the sweat pours off her.

And I think I don't have much to complain about really.


Wednesday, 1 July 2009

More signs you might have a disabled child

Your phone's predictive text auto-corrects AM to BM, bath to cath, and son to poo.

You receive an auto-reminder text stating "You have an appointment tomorrow at 10AM"; and when you fail to find any record of the appointment in your diary you have a choice of two different hospitals, two different children (with three different names), and ten different specialists to run past the several different appointments secretaries in order to narrow it down.

Your friend has pneumonia, and your first thought is not "oh dear, how awful, what can I do to help?" but "Oooo good, someone who can tell me how it feels".

You can't understand why a friend is so concerned about her child's refusal to drink, until you suddenly remember not every child has a gastrostomy.

You go out for lunch with a few friends, and you need four vans to carry just ten of you. At the coffee shop, all ten of you can fit around one small picnic table, because five of you have brought your own (wheel)chairs. During the meal, three children have at least one seizure each, two have coughing fits, and one screeches at eardrum bursting volume. You all agree it's been a lovely afternoon.

Conversation roams freely between holiday plans, the week ahead, equipment, and contrary to popular expectation, only touches very briefly on poo. Scones and the death of a child both feature, and both are given equal consideration. The extraordinary becomes commonplace; the humdrum everyday becomes a treasure to be savoured. An hour under a tree, a sandwich made by someone else. And friendship. It was a lovely afternoon.


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