Happy New Year

A quick swim this morning nearly finished us off. 2 hours to get ready, 1 hour of tantrums afterwards and a stack of soiled towels, and all for just 20 minutes in the water. But then the rest of the day spent doing nothing very much at all, dipping Pringles into custard (not me), reading (me), and just chilling out (all of us) meant the girls were up for a late night.

A text from my brother with the best possible news meaning we could go out to celebrate with light and thankful hearts.

All to one friends' holiday house for eats and drinks and watching many silly adults dancing with wiis. The girls lasted til 11, which is impressive given their usual fall-apart-if-not-in-bed-by-7 state of affairs. Even then, Little Fish conceded defeat with just a hint of "I tired", and held it all together until I told her she couldn't watch High School Musical before bed. Now she's fast asleep, Mog is in bed and singing quietly to herself, and I can hear the others gathering to see the New Year in.

A very happy New Year to everyone; may 2010 be everything you need it to be.
Tia and the girls.

Oh I do like to be beside the seaside

It's possible we chose the wrong time of year to come here. Still, in its own windswept and wet way, this is a pretty island and it's always good to be with friends.

Tia

Still happy

I do it!

"Not help me, I do it myself!"
pause
"Help me do it myself."

Clothes on, toast spreading, dolls dressing, teeth brushing, you name it, this is her refrain. Interrupted briefly for a quick round of "I want that/I not like that/you not eat that" whilst shopping today. Inbetween the mass frustration and mutual impatience though, it is deeply satisfying to have a child begging not for chocolate but for carrots and smoked salmon. And as for the rest, please keep reminding me independence is important.

Tia

Lazy days

The beds must have been comfier than they first appeared, because we all slept in til 8. Mog's wheelchair covers were still drippingly wet, giving us the perfect excuse to stay onsite - her buggy can't be clamped into the bus.

Grand plans were made for energetic walks into and around town. And abandoned. We sat around, visited with friends, and went for a swim.

Now it's nighttime and the girls are sleeping. Grownups are congregated in the flat opposite; the doors are propped open and I'm flitting between the two. Mulled cider in one apartment and the gentle snuffling breaths of sleeping children in the other. It's a winning combination.

Tia

A less than stellar start

Some interesting assistance from Little Fish; funny but distracting. One pump charger forgotten and returned home to collect. Frustrating, but also a sense of relief that we had only gone half a mile.

One ferry just missed and a 90 minute wait for the next.

One Mog, still full of giggles, but also turned into a one woman poo factory. Apparently ferry travel is the ultimate constipation cure; it shook out several days' worth.

One arrival at the very nice holiday apartment to discover "laundry facilities" which are not quite the same as a washing machine in the kitchen. Two very tired and smelly girls. One foully despoiled wheelchair. And the ever pleasing discovery that spare covers are still at home. As is the phone charger, meaning this update will be very brief as my phone is also my clock overnight.

Still; we got here safely as did our friends, and we'll join them tomorrow - too tired tonight
Tia

And the giggle goes on

A minor hiccup with some painful wriggling into awkward positions at silly o'clock in the morning, but after that a long day for Mog, filled with more giggles and laughs and chuckles and yells and other variations on general fizzing over glee. Gentle fizz as we walked to my parents, louder shouts through lunch, and hysterical shoulder-heaving laughter all afternoon. Utter mischief; two unruly legs which stayed still unless her little sister wheeled herself near enough to be kicked. Absolute triumph when she kicked her slippers off, and tears of laughter as she pedalled frantically against whoever tried to put them back on again.

And Little Fish? She lost her other wobbly tooth and has put it safely in a bottle for Grannie and Grandad to look after. I'm not sure what she expects them to do with it.

Meanwhile, witnessing my own grandmother (90)trying to explain the principles of webcams and skype to my uncle (younger) will stay with my cousins and I.

Another good day. And tomorrow we have a third and final family lunch before heading off on holiday. I should probably book that ferry.

Tia

Christmas Chez Nous

Started far too early; not with an overexcited child but with a humidifier running out of water. Do they make 1.2 litre bottles? So, 5.39, and a somewhat panicked Little Fish was decanted from her bed to mine where she snuggled up behind me, twisting my hair through her fingers and sighing contentedly. It was almost cute enough not to be annoying.

Christmas Day proper started around 6.30, when Mog woke up in fits of laughter. And so the day began; feeds and meds and breakfast and pretty dresses, cardigans located in a box of nappies and hairbands abandoned in favour of tinsel.

Supplies assembled ready to be taken to the grandparents. And, two hours after waking up properly, Little Fish looked thoughtfully at the assorted piles. "Mumma, I can open one present now?"

And so she did. And it turned out to be a bright pink plastic ironing board with iron and little cardboard boxes pretending to contain washing powder and spray starch. The feminist in me abhorred the cliché, whilst the more practical part of me watched her ironing her doll's ruffled dresses and wondered how soon I could train her up to wield the real thing.

Meanwhile Mog was kicking mightily, and adamant that she too should open something. She fell asleep during the opening but opened her eyes to approve the glow-in-the-dark stickers for her bedroom.

And then it was time for church, and we wound our way once again through a crowded congregation to another set of seats near the front. And we started singing, and Mog woke up. Really woke up, woke up more awake than she's been for months. And she started singing. And shouting, and singing, and kicking the person in front of us, and shouting ever louder until I finally had to remove her from the church. Which, in a family service full of children who have been feasting on chocolate since four o'clock in the morning, takes some volume!

Mog fizzed for the rest of the day. She fizzed and giggled as we walked home, and kicked her boots off happily. She rested as we skyped my brother in Tazania, and then she fizzed as we ate our goose, not wanting to taste any but howling with laughter whenever forks hit plates or glasses hit the table. Leaning into her face and whispering "presents" had her helpless with deep full-body chuckles. I've not seen her this happy and alert for the last 18 months; my grandmother has never met this Mog. Just beautiful.

And then we had coffee, and Little Fish had a pile of presents larger than herself, and Mog fizzed and bubbled and giggled and kicked and yet managed to keep her gifts safely on her lap incase they fell to the floor where her sister might appropriate them. For Mog, it was the year of the sock. Brown socks, blue socks, stripey socks, sparkly socks; so many different fluffy socks to cover her neck collar. And stacks of hair clips and bands and slides to coordinate. CDs and DVDs, enough to keep her singing for weeks. Thank you all. And for Little Fish it was the year of Charlie and Lola. Charlie and Lola apron, Charlie and Lola books, sticker books, extremely busy and special activity packs, completely amazing collage paper. Two very happy little girls.

Two little girls even happier when new visitors arrived and immediately got down to the important business of sharing Mog's giggles and helping Little Fish with her playdough. Coffee, then tea, then more coffee for the grown ups before wrapping up well and staggering home again.

Now Mog is tucked up in bed in new pyjamas, not quite asleep but heaving happy sighs as she watches her lights kaleidoscope their way across her ceiling. And Little Fish is also in bed; late to bed after an early start, and asleep before I had shut the door after a whispered "thank you, God for all my opening presents".

Time for me to relax perhaps? Well no, not quite; opening the front door to let Goway in, Grolly took the opportunity to run out. Normally the kittens race out of the door, hit the frozen ramp, gasp in shock, do a 180 degree turn midair and hare back into the house again. Not this time. She headed out and under a neighbour's car before finding her way into the only garden nearby with 8 foot high hedge around it. And then sat the other side of the hedge, crying. Gotcha stood in the doorway calling for her, Goway raced up and down the ramp, through the hedge to rub her nose and then back into the house, over and over, until I was convinced she had been caught in some kind of a trap and was immobile. About to knock on the neighbour's door, I turned and saw her stalk up the ramp, tail held high. She reached the top, was about to enter the house but suddenly flipped out and raced off to the side instead. Meanwhile Gotcha decided outside was fun, and started dancing with Goway on the drive. He's a big hefty beast and can't run as fast as Grolly; I caught him and heaved him back into the kitchen. Where he scratched at the door and cried until Grolly finally relented and decided to return to him. I'm thinking it could be time to sort out the catflap again. Meanwhile, standing outside in the cold and the ice must burn some of the Christmas calories mustn't it? Even if I wasn't running around after them but just standing there whispering rude things at the furry fluffer?

Anyway, two cats are back inside and Goway knows where he lives; if he's choosing to stay out that's his problem. Two girls are tucked up in bed, and I have finished off the last of the chestnut fool. I realise this probably negates any potential benefit from standing outside in the freezing cold, but I'm sure it's vaguely medicinal. And to gain the full effects I should probably be horizontal, so I'm off to bed.

Merry Christmas to all, and to all a good night!
Tia

'Twas the night before Christmas

We didn't get run over or held hostage at Waitrose. We did get ridiculously busy though.

Today was going to be a gentler day. One Christingle service, one family meal, one pair of pleasantly tired children. Little Fish and I had an argument over when the ancient relatives were coming; she thought it was for lunch, I thought it was for tea. We phoned; she was right and I was wrong.

OK, so bring our timetable for the day forwards a little; we need to be ready for 1 not 3. Not a problem. One cold pudding made last night (Chestnut fool for anyone interested), one soup converted to pate to reduce the cooking time (Mushroom), one pie planned out and ready to be made in the morning.

A sudden realisation it is not just Christmas Eve, but also Thursday. Which means our cleaner will be here at 11. Perfect; the house should be beautiful by the time the olds get her. But less perfect; I need to have tidied by the time the cleaner arrives so she can reach the floor. And then the phone rings, can a different relative just pop in for half an hour at around 12 please? Sure why not? The day is going to be chaos anyway; might as well get a feel for how we actually live.

I go into hyperdrive. Little Fish grates chocolate and stuffs dates (inside out, it will later transpire) whilst Mog conserves her energy by sleeping peacefully. I start to clear the sunroom - our laundry room - to make space for the table, and make the ever-pleasant discovery that one of the cats has been using piles of clean washing as a litter tray.

Abandoning the cooking, I start sorting washing; anything vaguely damp or yellow gets thrown back into the machine, everything else gets sifted roughly according to wearer and dumped on beds. Our cleaner arrives to discover a kitchen covered in icing sugar, marzipan, and mushrooms. And we spend a frantic hour between us somehow restoring the house to some kind of order, whilst persuading Little Fish into a pretty dress, and catching Mog's coughs so her dress stays pretty too.

Visitor number one arrives; a relative of Mog. She ignores him, Little Fish flirts mightily with him, and I attempt to remove chestnut puree from my forehead. Appearance is so important, don't you think? He hands out presents, I am thankful that I did actually remember to supply a gift for him, he says his farewells and is off just minutes before the ancients stroll in.

Little Fish decides she is starving. I dish out sherry and peanuts, and after handing the nuts around discover they are past their sell-by date and taste it. Nice. Abandoning the nuts we have a rather jolly fantastic meal; one which I may well have to remember and reuse in the future.

Coffee, and I have just poured out the last of it when our friend and ex-carer arrives, unexpectedly, with huge gifts for the girls. I hurriedly show my mother one of the photographs I'd planned to give to her for Christmas, ask her to remember what it looks like and promise a replacement in January, before rewrapping it for P. Subtle.

The ancients disappear to grit and salt the church carpark, whilst we load ourselves up and head off in a more leisurely manner. Too leisurely; by the time we get to the church it is packed out, and the space which has been reserved for us is at the front. Getting there is a mammoth task (and L, if you're reading this, K's jumper is muddy because we ran it over; it's not her fault and she might not even have noticed!), but one we manage in the end, and settle for the Christingle service. Lovely. Mog gets a fit of the giggles halfway through; shoulders heaving, mouth open wide, setting off everyone within her line of sight. Even lovelier.

And then home; Little Fish having grabbed a cuddle with her favourite Troy lookalike. LF is apparently "Darving" again, so a quite tea for her followed by a nice soothing calming shower and evening routine. Except that "My tooth is very wobbly" suddenly became choke choke hiss spit hawk ack ack, and her tooth was out. The second front tooth is nearly out too; so now both girls are missing front teeth for Christmas. Do we know a song about that?

Grannie had to be rung, and has confused Little Fish mightily with tales of tooth fairies and Father Christmas. Little Fish has put her tooth safely on the windowsill, not wanting a strange creature to fly into her bedroom at night, and has gone to bed without a stocking, not much fancying the idea of a strange man in her bedroom either. In any case, Little Fish is not much bothered by Father Christmas; we met him at a party two weeks ago and he gave her a box of chocolates. Ever since then when people ask her if Santa is coming she tells them "No, 'e been already, I seen 'im".

Into bed at last, having evicted the cat, and shortly followed by Mog, who does appear to be a little bit excited by all the Christmassy stuff happening. New pyjamas, an early Christmas present.

Both girls asleep, I settled down to do some serious wrapping up. It was at this point I realised that, in addition to not having managed to sort the presents for the friends we saw earlier this week (and the friend earlier today), I had opened Mog's present (a DVD) several weeks ago intending to replace it but forgotten. Oops. And as I eked out the last of the wrapping paper (the roll having unexpectedly turned out to be largely cardboard) I realised that Grannies gift (pyjamas) had been appropriated by me when I took Mog to hospital, and I'd failed to replace those too. Double oops.

So, for anyone still wondering how I do it all, please know that I don't! It's Christmas Eve, and I don't have Christmas presents for quite a few of the people who really should have them. I don't have enough wrapping paper for those presents I do have, I have no idea where the beautiful handknitted cardigans I sweated blood over earlier this month have hidden themselves so the girls may end up not wearing them after all, the salt and cat litter grit I used to de-ice the ramp has translated itself into a grey slurry which is now coating the floor, and Mog's feed pump is running so slowly I'm going to be waiting up for a good few hours yet until it's all run through.

But you know what? I have two beautiful girls who are both home, happy, and relatively healthy. I've family and friends around me who are happy with our presence even if we come without presents (I hope!), we've a roof over our heads, food in the 'fridge, and money in the bank. And if a barn full of animals, with a pitch invasion by angels and shepherds was good enough at the beginning, I reckon a bit of chaos and confusion two thousand years on is probably fairly acceptable too.

Happy Christmas, everyone.
Love
Tia and the girls.

An Awfully Big Adventure

Today was unnecessarily epic. And it's all my fault.

I just happened to mention yesterday that we appeared to be living in the only place in the country not to be experiencing snow. Two minutes later, large, fat, soggy flakes started falling outside the window. Not enough to toboggan in, not enough for snowballs or snowmen or anything fun. Just enough to partially melt then freeze into a lethal glassy coating over everything.

Walking down the ramp to the green bin was the first indication there might be a problem. I stepped out of the door and onto the ice, and watched the ramp get gradually closer and closer as my legs slowly (but sadly not gracefully) slid into the closest approximation of the splits I've done for years. Stopping a mere three inches from the ground, I crawled back up and searched for something to help with the grip. Having used most of our salt to deal with the slugs earlier this summer, the only substance in the house which looked anything like promising was the cat litter. Don't try this at home. The granular cat litter acted, not as grit, but as ballbearings, effectively greasing the ice to add an entirely new level of lethality. Consoling myself with the thought that if the neighbourhood cats decided to use the ramp as their own personal litter tray, at least that might dissolve the ice, I stepped off the ramp and landed with a bump on the driveway.

Safely back into the house, coffee, and a plan of action. The ramp ice softened by the remainder of our extremely nice rock salt (note to self: more salt on the shopping list), the girls and I skated our way around the corner of the house and took the long way around to where our van was parked. We loaded up, clamped up, warmed up, de-iced, and I threw the van into reverse. Where it swam around for a few hairy minutes, skittering dangerously close to the three foot drop to the footpath on one side, before getting rather too friendly with the car parked on the other side. I switched the engine off, and exited, looking around for inspiration.

The builder working on the flat opposite decided I was clearly a little woman in need of rescue, and offered to do the deed himself. I handed over the keys, and threw myself against the garage as he too took the van for a swimming lesson. He then stepped out of the van looking about as grey as his uniform tshirt, and passed the keys back to me,

New plan; forget everything we needed to do in town, swap Mog's chair for her buggy, nip back inside for Little Fish's charger (powerchair running dangeously low), and walk over to our friends' house. Realise one of the jobs we needed to do in town was collect the girls' incontinence supplies, not something we could afford to do without and definitely not something we could carry home ourselves (or fit into a taxi). Arrive, glowing, at our friends' house and throw ourselves on other friends' mercy to collect the pads.

Complicated arrangements for dropping various children off at respite, leaving a minimum of two adults with a maximum of eight children, and ensuring at least one of those two was able to suction where necessary. Not bad though really; it can't be very many places you can go where children who are cathed outnumber those who are not. We ate too much of friends' food, leaving them thankful they were off to other family members for Christmas Dinner and not reliant on the scraps we left them. And I'm sure the next couple of days will help them work up an appetite.

We did, briefly, manage to sit down as four friends (plus extras) and catch up on the past few weeks. Nice. Briefly abandoning all children, I hitched a lift to the surgery to collect the pads. Weaving my way through the in-the-process-of-being-redecorated health room I managed to leave our mark on the beautiful cream wall. It's a good job the paint was still in the room (and you'll be relieved to know I resisted the urge to retouch it myself). Home and back up the deathtrap ramp to fight with the front door. And to witness Grolly shoot out of it, skitter down the ramp and disappear into a neighbour's garden.

Bribing the other cats with succulent Felix tender chunks, I left my friend to finish emptying her van of our pads, and went in search of the feline fiend. Who deigned to turn up as soon as she realised the other two were eating and she was not.

A sunny afternoon, and a thankfully empty (apart from our van) carpark, so I tried to escape once again and this time was successful. Just time for coffee with friends before loading tired girls into the van and home via the second most urgent of our in-town jobs.

Tomorrow we get to brave the supermarket, the day before Christmas Eve. If you don't hear from me again, please know that I've loved knowing you.
Tia

Challenging the Status Quo

And you thought this was going to be a well-thought-out, serious post didn't you?



They got used to this bed being unoccupied last week and are extremely unhappy to have been evicted. It's a hard life. They're now contemplating revolution, wondering how to convince Mog she ought to be happy with a blanket on the floor, even offering up their favourite windowsill and top of the filing cabinet in exchange.

She remains unconvinced.

Tia

Twenty One

Today would have been my Goldie's twenty-first birthday. I don't have to wonder how we'd have celebrated; I know there would have been pizza, chocolate cake, candles and nursery rhymes. From her first birthday with us to her last, this is how she chose to celebrate.

Presents weren't really relevant to her, although if they had shiny paper or were exact duplicates of things she already had then they'd probably go down ok. People were important to her; her best present was your presence.

Well, now we're here and she's not, but her favourite pizza place still is, and so we had pizza for lunch on her behalf.

Happy Birthday, my beloved Pizza-Eater.
Tia

The original plan for Monday

Didn't go quite as planned either.





But leaving much tinsel on the floor all week does seem to have paid off; they've left it alone and it isn't nearly as exciting any more. The Christmas Tree has survived their depredations, and the only casualty appears to have been the poinsettia
I can live with that.
Tia

Red Letter Day

A beautiful day

We are home!
And if that weren't enough, the post brought a letter stating that the local education authority have finally agreed that Little Fish needs all the help we've been saying she needs, and will from now on fund 38 hours 45 minutes individual assistance each week (mathematicians may realise that's more than the total hours of the school week, but it will include the times where she needs two staff for various reasons.

Happy Christmas to all of you; I can start feeling festive now!
Tia

Day 5

One girl very definitely not poorly any more. Lots of singing, a fair bit of shouting, and a wicked grin when movicol and augmentin made their combined presence felt. Observant viewers will notice the lack of any kind of face furniture; she's been off the oxygen since 3.30, and we're now just waiting to see what happens when she goes to sleep.

I'd like to get home for Little Fish as much for ourselves. But I'd like to get Mog sleeping safely too. So, we'll see. Meanwhile this ward is starting to feel like home. Little Fish has found a playmate her own age, and they have been entertaining the play staff today. Mog has found an admirer too, and we have a steady procession of poorly babies arrive on the bed opposite, calm down and make rapid recoveries in time for the next child to arrive. Keeps our own life from getting monotonous.

Tia

Day 4

More of the same. Mog remains on oxygen, fractionally less than she was on this morning, considerably less than she was on this afternoon and a little more than she was on at one point. She is tired but seems otherwise wellin herself; coughing and needing suction but then that's been normal for her since August.

Little Fish says she is poorly too and should stay with me. She wants me to stay with her, but then decides at the last minute I should stay with Mog. She had a wobble at school today, and when I collected her early we decided she should skip the last day of term tomorrow. Either she is actually ill, in which case she should not be at school, or she's really worried about being apart from Mog and myself, in which case she should not be at school. I think part of her wobble factor is the change in school routine too; lots of goodbyes and special treats and wild excitement which she doesn't really understand. LF met Father Christmas at a party last week, and he gave her a selection box. As far as she's concerned, that's it now; so when people ask her what FC might be bringing, she just looks confused and tells them "I seen 'im already".

No idea when Mog'll be out of here. Everyone keeps saying she'll do it when she's ready. And I know that's true; I just wish she were ready now! We do have nice staff - experienced staff too - and I've upset one of the student nurses but I suspect she might have more of an idea about children with Mog's level of disability now. That or she'll remain forever terrified of children "like that" and their scary parents.

Well, aside from the bipbop of monitors not attached to my child, and the cries of children not my own (both, therefore, sounds which I can happily tune out), the ward is silent. Mog is due a nebuliser in half an hour, and I am going to enjoy a brief nap before that happens.

Night all
Tia

Dear parents of children who are not mine

I'm sorry your child has had to be in hospital. And I'm really sorry they've had to have an operation. I know how hard that is on them and on you. I'm also sorry that we disturbed your sleep last night. But you know what? I'm not sorry the nurses didn't listen to you. You see, that noise you were complaining about was my daughter's sats monitor alarming to warn the nurses she was getting insufficient oxygen. That really loud insistent bleep? That was when she was going rather blue. I know it's loud - it's supposed to be. It's designed to make a nurse come running, which is what they were doing. I'm also not sorry that their first priority was to help my daughter, not necessarily to shut off the alarm. Your suggestion that they turn it down so it didn't wake you up could have killed my daughter. Was your night's sleep really that important?

The trouble with being in hospital is that you do unfortunately sometimes come across children who are really quite poorly. this is a hospital, not a hotel. The NHS buys you peace of mind, not peaceful sleep. I'm quite tired too as it happens; I was rather busy trying to help my child breathe for much of the night. But I'm not complaining about that; I'm just glad she's breathing more easily today. If you can't be glad about that, how about settling for being glad you were merely inconvenienced by this rather than having to live it.

We've moved wards now. The vindictive part of me hope the next occupant of our spot is louder and in more distress. But since that sort of hope tends to land us with grouchy toddlers for roommates, I'll settle for hoping your daughter is well enough to go home soon. Incidentally, your complaints about the lack of facilities for parents on that ward? I'll agree with you there. But I've moved wards now, and there's a parents' shower just opposite. So instead of writing in to moan, I'm off to wsh my hair.

Goodnight, sweet dreams.
Tia

Siblings

This post is not about my brother in Scotland, who is nearly a father now. And it isn't about my other brother, although after reading what he's been going through this week, it probably should be. Scary stuff.

This post is about Little Fish. LF, my own Clingon child who wobbles at the thought of me going out for the evening, even when she knows I will only be five minutes away, even when she knows the sitter. Little Fish, who after many tears and tantrums last night whilst I was helping Mog and packing for hospital, decided that the best way for us to say goodbye was for me to put her into bed as the ambulance turned around, say our goodnight prayers and have a big kiss, and then sleep peacefully knowing I was taking Mog to see the doctors.

Little Fish, who, whilst pleased to see me when I collected her from school, was more concerned about checking up on Mog. Little Fish who busily informed all the staff that her sister had "A 'fection", and who sat beside me as I cuddled Mog, asking everyone when we could take Mog home.

Little Fish who was pleased to see Grannie, and excited about riding in Grannie's car. And Little Fish who, when Grannie gave her a stuffed toy reindeer, immediately said "My sister like that, we give her a present", who turned to me and kissed me, and then sent me back off upstairs to deliver a reindeer.

I do love that girl!
Tia

This was not in the plan

"She's fitting; four minutes" shouted the escort, bursting through our front door with Mog and then running back to the bus. One smallish girl, eyes wide, gasping for breath, yes I can see how it might look like a seizure, but no, this was a child in serious need of some suctioning. Slurp slurp gurgle gurgle and the panicked look subsided, leaving one very hot and gurgly little girl. More suction, saline nebs, major amounts of fever relievers, and 90 minutes later the realisation we weren't actually managing to calm her breathing.

Call for reinforcements and a call for an ambulance; cover for Little Fish, and two crews debating the best way to get Mog, the "I will sit upright or stop breathing" child into hospital together with all her gear. Oxygen for Mog, who takes three breaths through the mask and relaxes totally, all panic gone. Apnoea in the ambulance isn't great, but better than at home, and it does ensure a dr or two ready and waiting when we arrive.

Salbutamol, then bloods and an x-ray, and Mog has a beautiful lower right sided chest infection. According to her book, she was absolutely fine at school apart from needing some extra suction. I'm trying not to think this could have been avoided if the escorts were able to suction, but this is now the second time she's come off the bus in distress and ended up being bluelighted to hospital.

Oral antibiotics, wean her off the o2 overnight and home this morning was the plan. Down from 10litres to 8, switch masks and down to room air by 4am. Great. Except that at 7 she decided she really quite liked the oxygen, and since then she's been alarming steadily until the nurses gave up on wafting it and she's now back on a steady 5litres. So I'm thinking probably not home this morning. We're up at the top of the hospital at the moment; very pretty views out over the main entrance. There have been mutterings about moving us down to the medical ward; but as this is the busiest time of year, who knows?

Tia

Sleep in Heavenly Peace?

It's been a bit of a mad weekend here. Yesterday the great Christmas Tree hunt; disappointingly no small trees at our first stop so we had to travel to the more expensive place where, after I'd handed over wodges of cash, the chap manning the needle netting machine informed me the tree needed an inch sawing off the bottom in order to survive the next two weeks but that his saw was broken. Joy.

Home, lunch, and then we went postal. 91 leaflets to deliver to the 91 houses in our road - disconcerting as the highest number is 110. A mixture of memories; as a teenager I had the paper round for this road (and for another 300 houses. For the 390 houses I was paid £3 a week. A few years later my brother took over the round; his round was half the size of mine and he was paid double. But I'm not bitter. Not at all), and some of the letter boxes greeted me as old friends.See now this letter box is, to my mind, the perfect one (just as well really, since it's my own). It's medium height, the right way up, on a gentle spring so easy to push leaflets through but closes itself without leaving nasty draughts. Oh, and there's a ramp up to it so Little Fish could post the leaflet through - the only leaflet she delivered herself.

And so I remembered my letterbox classification system. There are the boringly normal letterboxes like this one. Kind, compassionate householders, clearly doing their best to make post delivery as easy as possible.

Then there are the sadists and those who like to amuse themselves at others' expense. In its mildest form, this creates a letterbox with a flap which opens outwards rather than inwards, making posting leaflets a two handed job. It can manifest in a letterbox cunningly disguised as a pillar or door panel, causing the poster to hunt fruitlessly until the owner of the house walks past and points. Or, more viciously, it means a letterbox with a spring so violent it skins your knuckles and requires the occasional sacrifice of a nail.

Then there are the mathematically challenged. These householders provide a letter box not more than three inches long, necessitating a gentle roll and fold maneuver in order to insert a leaflet. I remember these letterboxes from my papergirl experiences; with a bit of practice the free paper could be folded into 4 and rammed through, but only if the householders had no interest in the headlines or classifieds. Always a relief when the "no free papers here" sign appeared.

Next, householders overly interested in your own personal habits. This will generally be demonstrated by a clear glass panelled front door, and a letter box sited at the very top of the door. For a short papergirl to reach the slot, she must press herself up against the glass and raise her arms to the fullest extent. In winter these were the ripped underarm sleeve checkers; in summer they became the RightGuard police.

And finally, those with illusions of grandeur. The "I kiss thy feet, oh master of this house" letterboxes. These you will find a mere 2 inches off the ground, and generally with an extremely stiff spring to ensure you remain kneeling until you have gained a proper sense of humility.

Mixed in with the old friends was a new one; a Swiss Post mailbox mounted on the wall. Now if only I'd noticed that before battling my way through the several gates barring my access to the front door...

Home, and a deadline - chocolate truffles to be made for a Christmas Party. So, as the girls defrosted themselves nicely watching Mary Poppins I stood over a large mixing bowl in the kitchen, grating cake and mashing butter, and forgetting that the above recipe is already doubled from the original recipe, so doubling it again and providing quite ridiculous numbers of truffles.

Back to the girls and the always wonderful discovery that Little Fish had found the glitter and sequins and created rainbow snow in the sitting room.

Bedtime.

Awake early this morning, with a nagging sensation of something forgotten. I ironed the girls' party dresses, located tights and even found something vaguely smarter than usual for myself. Wrestled with the cats, debated doing more ironing before sanity prevailed, and then remembered I needed to find the girls' Angel outfits for the Carol Service. No problem, they're definitely in Mog's wardrobe.

Except of course that they aren't. And as she sleeps on, I ferret through every shelf in the wardrobe, turning the place upside down. I find our Christmas decorations, much tinsel, a rather nasty sticky patch of ancient kitten urine, approximately 147 disposable aprons, and eventually just one angel outfit. Searching through the scattered remains of the wardrobe I locate a white skirt, and then another, and several white tops, and as I muse that Mog has too many clothes I try to work out which one will be most acceptable to Little Fish. And then I remember the second tabard is in the sewing room and tear that apart in an attempt to find it.

Two hours later, our carer is just about due, Little Fish is calling to get dressed, the iron is overheating, and I just about have some clothes on. I have cleaned up copious quantities of kitten poo and am preparing to do the same for a flucloxacillined child.

The carol service is, as always, excellent. Hordes of angels and shepherds on the carpet abiding; there's something about being lined up facing the many adults in the congregation which seemed to somewhat silence the general chat and mayhem which accompanies our family services. Although whoever decided sticking large pointy stars onto long pointy sticks and handing them out to the children too young to sit on the carpet needs to spend 30 minutes sitting surrounded by children thus armed.

And then we rush to the Special Kids Christmas Party. Slightly too rushed perhaps; I turn the corner onto the main road and the beautifully arranged truffles leave the tray and leave their casings and pitter patter pitter patter themselves elsewhere. They're still beautiful, just no longer quite so delicately arranged. Good times.

I am in the middle of complacently telling a friend that no, my girls aren't particularly bothered about Father Christmas, when in he walks, and Little Fish is silent, tugging on my arm and pointing in utter disbelief. Mog too saves her only spontaneous smile of the afternoon for the big man in the red suit. Laura, your bright yellow socks double nicely as a slightly slipped halo; we didn't bother changing out of angel outfits for the party but decided we'd be nicely festive.

More food than we could conceivably consume, so we gather a doggy bag to keep us going on the long journey home. I exit the carpark, brake, and crisps, sandwiches, sausage rolls and chocolate biscuits hit the windscreen. Oops. I decide against the super expensive Surrey garage prices, and regret this when a new (to me) orange light shines on the dashboard begging me please to find Deisel anywhere, any price. £80 later the tank is full and I wonder just how empty it was. Little Fish memorises the route home and persists in checking whether we are now on the M40 or the A40. I wish she wouldn't; every time she asks I have to check myself.

And then we are home, and I open the front door. And am hit by the stench of stale cat urine. Pushing the girls into the sitting room I mop puddles, empty overflowing litter trays, and scrape turns from under chairs. A blast of air freshener and we're no longer breathing ammonia, but it's safe to say the party spirit has evaporated. The cats have stripped my poinsettia bare; I wonder whether it is poisonous to them and then find myself wondering whether I'd prefer it was as at least I'd not come back to quite such devastation. They've also taken the contents of Mog's wardrobe and generously redistributed them around the house, gathered the rainbow snow and chased it into crevices, and performed long and complicated stress tests (I can only assume) on my clean laundry.

It is at this point I remember Little Fish is supposed to be bringing six homemade fairy cakes to school with her tomorrow for her Christmas party. No time to buy them in the morning and pass them off as homemade; I will just have to set to and bake them. I have a kit; bought for Little Fish to do with a carer one afternoon but marginally quicker than assembling the necessaries myself, so I rip open the sachet of powder and discover I should be mixing it with oil. My only oil extra virgin olive oil, I add 6 tablespoonsful and watch as the mix turns a delicate green shade. Tasty. Next up, one egg; I open the 'fridge and remember we have run out. Consoling myself with the thought that no one ever actually eats the cakes at a child's party (and why would you when you could simply lick off the icing and leave the rest), I add water instead of egg and hope for the best. One last stir before putting the batter into cake cases, and with a gentle slip of the fingers I pour half the mixture down my jeans and across the floor. Muttering quite loudly now I scrape the remaining mix into the cases and shove them into the oven, where in due time they do indeed turn a beautiful pale golden brown, although they are distinctly flatter than the average fairy cake. Once cooled they turn out to be rather crisper and heavier too, but hey ho. Much icing to compensate for the inevitable taste and texture deficiencies, chocolate buttons as a further apology, and finally six biscuitty cakes are assembled and placed on top of the 'fridge - hopefully a cat proof location.

I toss the bowl and spoon into the sink, gather the rest of the washing up and then decide in the sink is just about as good as washed up and shiny, and retreat to the sitting room to try to blitz it.
It appears to be the case that an epic battle has been fought for posession of this cardboard box. Now you might think that Gotcha above here has won the battle. But closer investigation reveals that he is merely sitting on Grolly's head, and , once she has gathered strength, he is duly evicted.
And after a short wash, Grolly decides the box is no longer to her taste either, and insists I remove it from her hot water pipe. All three cats now approach, wishing to discuss the catering arrangements and keen to implement a better system for any future days when room service will be absent.

I open another couple of sachets of the good food, squeeze it out into newly cleaned cat bowls, and retire, defeated, to my armchair in the sitting room. And then I remember Little Fish needs to take a packed lunch in the morning as the kitchen is busy cooking Christmas Dinner for the senior pupils.

Stale bread, no eggs, and healthy eating in school rules meaning no crisps, chocolate or drinks other than water. That'll be ham, banana and a yoghurt then. I truly am a domestic goddess.

And now it must be bedtime.
Tia

Little Fish Talk

I burnt my finger yesterday. Deeply traumatic; it's my texting finger. Little Fish saw that all was not well and leaned across, grabbed my hand, daintily inspected my finger, and said "Aww Mumma, what you do that for?"

I can't think where she gets her sympathy from.

We went for a longer than planned drive yesterday - detouring to drop off the cardboard boxes and then to collect more cat litter. As we navigated the not insignificant traffic, which included the inevitably suicidal lorry drivers, Little Fish noticed the signs written on the sides of most of the vans we passed. Tick, tick; I could hear her mind turning over.

"Why we not have writing on our bus, Mumma?"

I explain that we just don't (intelligent debate, always good). We drive on in silence for a while, and I am curious, and ask her what she'd like to have written on our bus, if we did have something.

She thinks for a bit before replying. And I like her idea. It's catchy, a message which works so well in so many different situations. And again, I can't think where the phrase came from. So, if you happen to be driving around, and you spot a large red bus with two beautiful girls in it and an increasingly wonky lift at the back, just check the graffiti for final confirmation that you have in fact found us.

The message?

"Stop that NOW!"
Tia

Halleluia!

Thanks to Becca and Laura

Remember this?
Becca found us the stripey ones, and oh my they're beautifully soft. And they came with another pair which I might just have to keep for myself. Thanks, Becca! And then yesterday there was a parcel in the post with lots of interesting letters on the front, and the pair on the left inside. All the way from Japan, together with some toys for the girls. Thanks, Laura! All the more amazing when you know that Laura managed to find these socks, parcel them up and post them out to us whilst packing for her family holiday, a major part of which will be flying solo with three of her children, one of whom is profoundly disabled, from Japan across America.
And by the time Laura reads this she will I hope be safely settled seeing family she's not seen for years and friends she's only met on line, and I hope the pain involved in the travel preparation has been all worthwhile.

Tia

Reality

The perfect mother rises before dawn to ensure her duties are done, bathes and dresses herself and annoints herself with fine oils, prepares a deliciously nutritious breakfast before gently rousing her precious children, greeting them with a cheery and beautiful face, and patiently helping them into their clothes.

The real mother grabs an extra ten minutes in bed, then spends another ten minutes trying to find something, anything, vaguely clean to wear, throws it on haphazardly whilst tripping over the cats who are fighting each other through the dressing gown she is still wearing. And then sits down again thinking about starting the day until realising just how late it is and racing through to check if over-sleeping small child has in fact suffocated overnight.

Score one for the real mother; she did make porridge.

Now the perfect child would be grateful for the porridge and eat it rapidly leaving time to get dressed before being too horribly late for school.

The real child goes on strike and is adamant only toast will do, and will even consent to the last slice of bread which is inevitably a crust; but only if the crusts around the edges are still cut off.

The perfect mother is deeply sympathetic to the older child who is clearly unwell, makes alternative arrangements to enable the child to stay warm and comfortable in bed, and creates a loving and soothing environment in which they can recover slowly.

The real mother gets her dressed in school uniform just in case she should manage to feel better in an hour's time. Once this is evidently not going to happen, she bundles her up in a blanket, grabs a handful of suction catheters, and trundles her to the youngest child's school muttering about fresh air and bumpy roads doing her chest good. Or something.

The perfect mother manages to push one wheelchair whilst holding the hand of the other child and never once causing a collision or getting tangled wheels. She waits patiently for the green man at the crossings, is enthusiastic about all the many sights on the way to school, and unflustered because she isn't running late in the first place, and, if she is, it's the first time ever.

The real mother spends half the trip trying to catch the catheters which won't stay put whilst shrieking at the younger child to keep up and keep moving. And whereas the perfect mother would have praised the child for stopping and waiting instead of crossing the carpark in front of the giant lorry, and taken the time to explain that it wasn't going to move, the real mother shouts so loudly that the child is more scared of the mother than of the impending death by giant lorry and scurries past at speed.

On arrival at school, the perfect child puckers up her lips for a kiss goodbye, gives her mother a hug, waves to her sister, and wheels herself over to the classroom.

The real child? Well, in this case, the real child is the perfect child and does just exactly that, leaving the real mother rather ashamed of her lack of perfection and not terribly comforted by the thought that a day at school probably seems more attractive than a day spent with the harridan who seems to have replaced the parent this morning.

Tia

Red Letter Day

It probably doesn't come as a surprise to those of you who don't know us in person that Little Fish's Christian name is not, in fact, Little Fish. Maintaining the illusion of some kind of privacy, I'll reveal it begins with an A. Which makes this rather jolly precious:
She came home from school today, asked for paper and pen, and practiced her writing on the back of an envelope. Normally the only differentiation between her writing and her drawing is that her writing is a long jagged line whereas her drawing is a big wide scribble. Would it be wrong to frame the tatty envelope?

Gotcha looked on approvinglybefore having a very loopy half hour. He's got a thing about feet; if I walk around barefoot he'll munch my toes, running behind and in front and between my legs (generally all at the same time) chewing toes and nipping my ankles until I give up and either feed him or put shoes on. This evening he decided toes weren't exciting enough and went for the fly of my jeans instead. Repeatedly. Ouch!

It's nice he's getting friendlier I suppose...
Tia

I was right - I don't like Mondays

Our cleaner came, did her absolutely marvellous thing where she transforms our house to a shiny, gleaming, paradise, and then went away again. And I looked around at the glistening surfaces and decided to have a mini celebration. Digging through the freezer I found a rather tasty looking wild rice, lentil, chestnut and mushroom bakey thing, so threw it into the oven, and 20 minutes later, it, and a dollop of creme fraiche were ready for my undivided attention.

And then the phone rang, could I collect Little Fish from school please? Not immediately, but at the end of the day as her escort was poorly. No problem. Returning to my meal, I loaded up the fork, opened my mouth wide, and then the phone rang. Mog had had a 28 minute seizure and a lot of green gunk, he was now asleep and fine but could I be prepared for her to be ill please? No problem. And I loaded up my fork, opened my mouth, prepared for a taste of bliss, bit down, and chipped a tooth on a particularly hard bit of wild rice.

The dentist offered me an appointment for this morning; perfect. Just the little matter of rearranging several other appointments to make it, but broken tooth = sensitive tooth = pain = priority. Except of course that this morning, Mog is off school unwell, and the dentist's office is upstairs. The last time I took her to my dentist she was two; in fact I think that may be the last time I took myself to the dentist (which potentially explains the chippyness of the tooth). Here's hoping there are some nicely strong men with appointments at a similar time to mine...

Tia

I don't like Mondays

Except that actually, I do. But the title fits this photo better, don't you think?

Little Fish refused a shower last night "I 'ad one last week, Mumma". I'm sure that more than one shower each week wouldn't kill her, but it wasn't the time for grand arguments. This morning she woke up and decided "I not want to be a smelly poo poo head, Mumma", so she rushed through a very fast shower and emerged smelling of Panthene, Teatree and Lime. Lovely. The grumpiness was due to the speed of the shower, but if you don't wake up until 7.30 and have to leave for school at 8.30, and it takes some time to eat and get dressed, showers have to fairly fast. Perhaps she'll decide a bedtime shower might be better next time.
Not a hint of the weekend's distress - lots of chatter about how her TA might be getting dressed too and how her teacher might be in the classroom getting everything ready and how her best boys might be eating toast just like her. Much keenness to get to school and "I kiss you we say goodbye I see you later", and she was in the door and I was out of it again and that was that.

And then three minutes ago the school rang, and I thought that was probably it, and she'd wobbled and needed picking up. But it wasn't; instead the head wants a meeting to talk about her support levels. I'm not sure if that's good or bad. Either way, she's in school and much happier about it - perhaps she just needs school seven days a week?

Tia

Fishtales

More clingy Fishy today. Little Fish woke at eight and begged not to to go to Scramblers (Sunday School). All through breakfast, all through getting dressed, all through a tantrum about not wanting tights and pants just trousers, the constant refrain of "I stay with you in church today, Mumma, please". And eventually a compromise, and even some excitement about this being her last ever time at Scramblers, and lots of talk about how I'd pick her up again afterwards and she'd have lots of fun.

She consented to being pushed to church, again on the understanding it would be the last time she couldn't take her powerchair, and with lots of fretting about not being pushed on the grass or the bumps or the slope. And with me finally connecting the dots and realising something somewhere might be hurting. Little Fish isn't terribly helpful when it comes to identifying pain - she tends to grab her toes and knees and tell me they are sore, but since she doesn't actually have any feeling in them I'm not convinced. And she'll deny pain in places which obviously do hurt sometimes as she's worried I'll want to touch them to see how much they hurt. Not that I spent my life poking her sore bits with a stick, but when sore bits are also mankily disgusting discharging bits I do spend a fair bit of her life poking around cleaning them up. Not pleasant.

So we get to church, and we drop Mog off, and collect a junior friend to help push Little Fish. And then the door opens, we all go to walk through it, and a lady on the other side rushes in, fails to observe Little Fish in her wheelchair, and does a beautiful somersault over the top of her. With three of us catching her to slow her landing I'm thinking human bowling might catch on - more children in knee-high wheelchairs is all it would take. The lady is, thankfully, fine - just annoyed and embarrassed. Little Fish however is unhurt but disintegrating. We make it halfway to Scramblers and have to abandon wheelchair to junior friend and carry her back into church. Where she spends the service sitting beautifully quietly on my lap and on friend's lap, making eyes at everyone in our row, and evilly tickling me during the prayers. Monstrous child.

Very cuddly, very snuggly, and very quiet - she's always a cuddle monster but the quiet bit is definitely unusual.

Home then, and a quiet girl making loudish demands for lunch. Which she then promptly refused to eat. A run into Oxford to return the Sleep Study kit to hospital. A grump at the hospital when all the free parking was filled, mostly with taxis and non-disabled-badge-displaying cars. And then another grump when the out of order lift was still out of order. A third grump when no one responded to our requests to be let onto the ward (finally let in by a parent from a different ward), another when we then stood outside the second locked door buzzing politely; several staff visible at the desk but not apparently able to click the "open door" button beside them. More grumpiness as we walked through the first ward onto the respiratory ward, and then stood at the desk waiting to be acknowledged by the nurse sitting on the other side of the desk. Note to anyone who does sit the other side of the nurse's station/hotel reception/customer services/anything else frontline - I don't expect your full attention instantly, but a little tiny bit of eye contact or a "could you hang on a sec please?", anything you like as long as you acknowledge our existence whilst you finish your task would be greatly appreciated. Offering to help open the doors as I pushed two girls back out of the ward would've been appreciated too, but I know how busy you were so I'll let that one go.

Back down to the bus, tantrums from Little Fish as I took the parking ticked out of the machine and didn't wait for her to do it herself. More screams as I strapped her into her car seat, and then a big shout from me as she attempted to pull Mog's wheelchair over sitting beside her.

And then a click of the mood switch, and all smiles and cuteness again as we drove off looking for a recycling point. Four big cardboard boxes full of smaller boxes. We had a deal with one of our carers who lived in an area which did take card but wouldn't take glass or batteries. It worked well until she left, and now cardboard is taking over my life.

Big recycling bit closed on Sunday. Three smaller places have banks for bottles, cans, clothes, even tetra packs (must remember where that one is for future reference) but no skips for cardboard. We leave Oxford, drive past our house to Tesco, where there is a cardboard skip. Three actually. All full to overflowing. We drive home, cardboard still filling the bus, and Little Fish throws a tantrum when I refuse to unload the cardboard and store it in our damp garage.

Into our house and she's all smiles again, but needing cuddle cuddle cuddle until bedtime. The girls watch High School Musical, and Little Fish decides Troy looks like a friend's teenage son. Apparently she likes this boy "acos he very nice". I have visions of T and LF doing some kind of High School Musical wheelchair dance, which leads me to picture LF in future school productions, and then onto a picture of her still glued to my hip age 16, so I stop that line of thought and wonder if T can dance instead.

Bedtime, and Little Fish starts fretting about not wanting to go to school tomorrow. And at the same time telling me all about what she thinks her friends are doing and her TAs are doing and how school is waiting for her and how yummy her school dinners are. And then again reminding me that she doesn't want to go.

She doesn't look ill, she doesn't feel ill. She may be in pain - she did seem to brighten up a little after taking some paracetamol - but then she brightened up about 2 minutes after taking it, and I'm pretty sure it doesn't work that fast. She says she needs to see the doctor but only when we talk about her going to school or Scramblers or somewhere else. She wants to be out and in, busy and calm, and whatever's going on it's clearly bothering her a lot. I'd just like to know whether it's a lurgy, a general end of term tiredness, or something more emotionally draining.

She sat on the potty tonight and drilled holes in her knees with a bolt from the armrest. No feeling in her knees, so nothing there to tell her not to do so. When she was younger I used to have to keep her in tights or she would scratch away at her thighs to make pretty patterns with the blood. "I got to make spots on my knees acos I poorly." Hmm - does she mean illness is more convincing if there are spots, or does making spots make her feel better?

Tia

Huggle Time

Today I spent about eight hours cuddling Little Fish, with her curled into my lap and my arms around her in a manner designed for her comfort and not my own. Very nice, but very unusual - I can't help wondering what's up.

We did break for fresh air; after an hour of pleading to go shopping (pre-huggles) we wrapped up and headed out of the door. and by the time we had reached the bottom of the drive, Little Fish was crying and begging to go back inside again. But refusing to turn around, adamant that we needed more ham and chocolate spread. So she cried her way around the shops, cried her way home, insisted she didn't want any kind of lunch at all and then equally insistent she wanted to eat mine. And then we sat and cuddled.

And cuddled, and cuddled, and huggled and snuggled and cuddled. And Mog looked on a little, and mostly slept, and occasionally coughed. And we watched DVDs and snuggled some more, had some weeps at bedtime and then into bed with a happy sigh and asleep before I had closed the door.

Not coughing, not hot, not visibly lurgied, not complaining of feeling poorly or tired. SHalfway back from the shops she told me she was very sad, but couldn't say why.

I hope tomorrow's happier.
Tia

Thursday

Grand plans for a nicely nothing kind of a day. Lunch with friends in the middle and a sort of peaceful floating around the edges.

Well, the lunch with friends happened and was lovely, but the peaceful floating was chipped and chipped away. Starting at 4.31 when Little Fish threw a Little Wobbly and had to be de-Nippy'd in a hurry.

She then settled back into bed, but I was then fairly awake. Time to potter about sorting laundry and emptying bins, taking advantage of the pre-dawn gloom to add embarrassing amounts of rubbish to the commual heap (our dustbin men collect all the rubbish from our street from a large pile at the end of our driveway. This is awkward when people need to come onto our drive but rather jolly handy when there are defunct hoovers and festering nappy sacks to be added to the pile). Coffee and emails and last night's washing up, and meds drawn up for the girls, and enjoying the quietness, deciding not to wake Little Fish until Mog's carer arrives; racing Mog to get dressed is a good motivator and cuts out some of the four year old faffiness we have to live with otherwise. And then the phone rings, and I realise it is now 7.36, and it is The Office informing me that our carer, the one due at 7.30, is off sick.

Panic mode: on. Mog is whisked into her clothes with almost burtal efficiency, and finds herself sitting in her wheelchair before she has realised she is awake. Little Fish is planted on a stool and finds herself having a large fruit smoothie via gastrostomy as she nibbles delicately on a piece of toast; no time to cajole her into eating more. A hairbrush is waved in the general direction of three heads, faces are de-crusted and somehow shoes are located. Mog's bus does not help matters by being early; I scramble her school kit together as they load her on and manage to produce it before they drive off. Little Fish plods on with her toast, refusing to be infected by her mother's hurry, and slowly, deliberately, she chews and swallows and consents to feet being splinted and be-shoed as she does so. And finally she is in her powerchair, wrapped up warmly, and we are inching our way to school, the last bit of toast in her mouth as we leave the house and somehow still being chewed as we squeak into school at the end of the queue and before the doors have been locked.

The photographer had a slot early in the morning, the only slot we could both make this week, so with Little Fish finally at school, I galloped home and then raced into town to go and look at pretty photographs. And as I left, the phone rang informing me the gasman was coming to quote for a new boiler as soon as I got home. Parked the bus, remembered I had no children with me so actually had to pay for parking, shocking. Burst into the photographer's studio, to find him looking at me in a slightly puzzled fashion, before consulting his diary, taking the last mouthful of a bacon sandwich and apologising for it not being Wednesday. Could I give him 15 minutes to set up please?

No problem, into the co-op and buy yummies for lunch, decide baking definitely not going to happen this morning and find a coffee cake, grab some ham for LF, and back around to the photographer.

Interlude. 60 photos whittled down to 25, then 11, and then a second mortgage raised to pay for the few we decided were best. They'll be ready "definitely by Christmas but possibly only just. Sorry."

Back home, via a new and enticing patisserie. A blueberry and raspberry torte (query: why is torte instantly more delicious sounding than tart? And what's the difference? Tart is margarine and almond essence and oranges, torte is butter and ground almonds and grand marnier? And is a sweet tart an oxymoron?), and I resist the many many variations on almond and sweet bread (not sweetbreads).

Dump food in kitchen Put the shopping away carefully, and I am halfway through finding the floor again when our cleaner arrives and, gently edging me out of the door, finds far more of it than has been visible for weeks, appearing at regular intervals with handfuls of clutter for me to redistribute put away.

Our new cleaner, she who has restored my bathroom to glory I never knew it formerly had, came back - a two hour visit half an hour before friends due for lunch. And if you think I turned her away, you're crazy. But it did mean when they arrived, the sitting room furniture was all piled in the middle of the room, great teetering stacks of clutter around the edges as our wonderful new cleaner actually cleaned underneath everything and not just vaguely around it. She even took the cushions off and hoovered underneath them. The finds she didn't immediately bin included seven picture dominoes, two unopened packets of crisps, half a dozen pens and an unread magazine from August. Oops.

It is, of course, in the middle of this process that our first friends arrive. Swiftly followed by the gas man, and then by our other friends. Our cleaner remains unruffled even by the addition of a busily helpful two year old, and continues to restore my sitting room to a clean and delightful freshness. The gasman and I take up a station in the kitchen, whilst friends post themselves through to the playroom and perch uncomfortably on the piano stool wrapping a delicate child in many layers of blankets rather than turn on the radiator. I'm such a great hostess.

They do appreciate the coffee cake though, much munching ensues as the gasman and I discuss the practicalities of replacing our asbestos laden boiler with something new and shinily efficient. Am intrigued to note that even with the asbestos removal, the quotation is substantially cheaper than the quote we received from Big National Gas Company a few months ago pre-asbestos issues. Shan't be using them then.

Finally the gasman goes, and the cleaner decides the sitting room is more or less up to her standards. She spends approximately three minutes in the bathroom bringing back the gleam she achieved on Monday, and departs in his wake. We head back to comfortable chairs and glistening surfaces. Bookcases which take me weeks to tidy have been ruthlessly straightened, space has somehow been found for pictures to be displayed not merely stacked, and the contrast between the rest of the room and my computer table (which I asked her not to touch) is embarrassingly obvious now.

Lunch happens. Conversation happens. We think of friends who are ill, friends with ill children. Marvel at the ability of more than one child to prove the doctors wrong yet again, and refuse to die despite being discharged in order to do so. Push more food onto each others' plates and at the same time discuss the differences diet and medication and medical conditions can make to poo. Drink tea and debate different cathing techniques and the benefits of a bladder washout with Domestos. Eat grapes and mince pies and talk about the difficulties which follow when your child doesn't die.

The phone rings intermittently; more appointments being set up, crowding December days until the 25th is beginning to look like our quietest day this month. Pity the therapists too; with three of us in the room the phone gets passed around, and one appointment becomes two or three.

A surprising lack of cats during our chat, and as friends bundle up to go I track them down, trapped in a bedroom. No puddles though, no piles of poo, despite having been in the bedroom all day long. Definite progress there. Or it would be definite progress, if one hadn't immediately celebrated freedom by spraying the front door whilst the other tackled the bathtub. At least they are consistent in where they go; the areas of the house where I need to watch my step are now limited to a handful. Did you know though that cat urine if frequently reapplied can dissolve floor varnish? I wouldn't recommend it as a stripper though; the fumes are not pretty.

And so friends go, cats are fed, children return from school, Mary Poppins is played again, the Advent book has another chapter, and we the curtains are drawn against the darkening night. Two girls and then myself into bed, and I am asleep before Mog.

So it wasn't the quiet floaty sort of day I'd semi-planned. And I didn't knit a row of Mog's cardigan - which needs finishing by Tuesday evening, in an ideal world. But any day which includes lunch, and ends with three of us sleeping peacefully can't be a bad day, no matter what gets thrown at us in the middle.

Tia

All I want for Christmas

All I want for Christmas

is
my two front teeth!
A big fit at school yesterday, and then a big exciting late night made for one tired Mog this morning. One very very sleepy Mog who was definitely not up for a busy day at school.

One Mog who slept through our best efforts to entertain her this morning, who roused briefly at lunchtime before dozing again through most of the afternoon.

And one Mog who decided bedtime was party time, and is presently singing up a storm.

School tomorrow!
Tia

Twist me and turn me

And show me the elf,
I looked in the water,
And there saw...

myself.

Anyone else remember that?

"We're Brownie Guides, we're Brownie Guides, we're here to Lend a Hand"

A brown dress, a brown hat, a yellow tie. 10p for a phone call, a notebook, a pen, a rubber band and a stamp in your top pocket. Various assorted Owls for leaders, and games only ever played at Brownies, on a scarily polished church hall floor.

Well, the uniform's changed, the Motto has gone, the Promise has been altered somewhat too. It's about loving God, not duty towards Him, serving both queen and country now, but the essence is pretty similar. No toadstool and no mirror, and a big yellow brooch rather than a tiny brass pin which needed regular polishing.

Tonight, Mog made her Brownie Promise and joined my old Brownie Pack
Not the best photo; better ones had other girls in. Her Buddy marched her through the Brownie Arch, past the flag (I'm sure we had a strange leather triangular penant instead) and up to her Brownie Guider who held her fingers in a salute as she pressed her switch and repeated the promise recorded on it.

Head held high without her collar (anyone who sees fluffy brown and yellow socks please let me know; her regular stash definitely do not match), lined up between her Buddy and her Sixer, Promise badge gleaming and shiny new uniform worn with pride, Mog linked fingers to sing Brownie Bells. Mouth open wide, she sang as loudly as the rest of them, and came fizzing home again high on all the excitement.

And so, more than when she made her Rainbow Promise, Mog became a part of the World Association of Girl Guides and Girl Scouts. Perhaps that doesn't mean very much these days. But it does to me. When I was a Guide, we celebrated "75 in '85"; 75 years since the day a group of girls turned up to a Boy Scout rally. Now we're celebrating 100 years of Guiding , and Mog is just as much a part of that as I was and am.

It's been a very Guidey day today. I spent this morning booking tickets for our Guides to go on a Centenary Adventure; come April next year, we'll be camping on the lawns of Alton Towers before spending a day at the Theme Park. I saw we; although I've booked the tickets it'll be the other leaders camping with the Guides; the girls and I will be tucked up cosily in the AT hotel enjoying comfy beds and central heating.

It's a nice connection, this. Little Fish goes to my old school, and if she wants to, then I'm sure she'll also do the whole Brownie thing. But there are fewer places where Mog's childhood and my own can coincide.

And, although I don't especially enjoy being a Guider at the moment (mainly as I'd rather be here at home in the evenings than just about anywhere else), I wouldn't have missed my own Guiding and Scouting experiences for anything. I have abseiled off our church roof and down towers in Oxford, camped on mountains and in fields full of cows and sheep and slept in barns and gone pot-holing and canoeing and built great vast rope bridges, sung to Old People and with Young People and on stage in Gang Shows. I have seen sunrises in Korea and painted lanterns in Japan and learnt from people around the world, made instant friends in California and taken part in Thinking Day celebrations in London. I have seen shy girls put aside their timidity and belt out campfire songs, and I have seen overly sophisticated girls forget themselves and roll around laughing in the mud once there were no boys around and so no need to keep up the act. I've seen groups of pre-teens organise themselves and others into doing amazing things, and I've met adults who have given years to make things happen for the girls in their care. I have listened to older, wiser, retired Guiders talk about their experiences of inner-city Guiding in the 50s, and seen, over and over again, how although the outside appearance of the meetings and activities may change, the core values and core experiences for the girls remain the same, time and again.

I have a lot to be thankful for. I loved my own experiences as a Brownie, a Junior Girl Scout, a Guide, and a Venture Scout. Being chosen to carry the flag for church parade, marching through town on St George's Day, a neverending stream of experiences, both new and so comfortingly old and familiar. And of course, I owe my very existence to Guiding and Scouting, my parents having met at a Student Scout and Guide Club.

So here's to Mog the Brownie, and here's to the next hundred years of Guiding.
Tia

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