Wednesday, 31 October 2012

Happy day highs

Mog's definitely back on form.

New clothes today, quite a bit of shopping actually. She turned down the chance to shop with our nearly 17 year old friend, opting instead to stick with me - giggling because she thought I had more money. She laughed as tLP puked her lunch (lots of choking these past 2 days, not quite sure why), she grinned as she kicked everyone under the table tonight, and howled with laughter when she managed to insult our friends. It's amazing how rude a non-verbal child can be when she tries!

No painkillers, no anti spasms, no extra meds at all, just lots of happiness and generally seizing the chance to have a really Good Day.

Epcot tomorrow
Tia

Tuesday, 30 October 2012

We Ride the I-ride

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

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

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

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

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

Tia

Sea World.

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

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

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

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

A properly Good Day.
Tia

Sunday, 28 October 2012

Disney

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

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

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

Tia

Longer Letter - Lessons Learned

This will be our third family trip to Florida; tLP's second, much to her confusion and disgust. She finds the concept that we existed before she did to be bizarre beyond belief.

We learned last time that whilst staying in Lake Buena Vista may well be cheaper than staying on International Drive, you can't really do it without a car.

We learned the first time that a week is never long enough.

And this time, we have learned positive lessons.

It is worth spending the night near the airport for an early flight, rather than getting up at silly o'clock in the morning, fretting throughout the drive there about the time it's taking and what might have been forgotten, and finally arriving more fit for bed than a mammothly long journey.

It is definitely worth doing a spot of research in advance, rather than rusting to the breezy assurances of the hotel receptionist, if you need a taxi large enough for two wheelchair users and a lot of luggage.

Flying from Gatwick as a group requiring special assistance is a dream. From the chap who hailed us as we got out of our taxi, to the pager we were given so we didn't have to sit in a corner waiting for our escorts, to the security staff who kept the girls and myself together even during pat downs, and who only made me taste the nicer of Mog's blends, the whole experience was much calmer and gentler than at bigger airports.

Sadly, suitcases containing miscellaneous articles including, but not limited to, wheelchair chargers, boxes of catheters, and small packets of saline are always going to attract attention, and they probably should.

Virgin Atlantic staff - medical engineering staff stuck on a neverending loop about the ventilator battery aside - have been absolutely outstanding. I think they've probably spent nearly as many man hours preparing for this holidays as we shall be spending on it!

Special appreciation goes to the cabin crew who repeatedly reinflated Mog's Burnett Support. We thought it was deflating itself, but I think the toddler sitting behind us may have contributed a little!

Mog managed the flight superbly. I'm sure the fact that we spent the night at the airport helped considerably. But I had come armed with pain killers, sedatives, muscle relaxants and assorted emergency meds, and she needed none of them. Perched on the very edge of her seat, wedged in by a wobbly Burnett and a stack of pillows, she kicked and grinned and enjoyed herself mightily.

Lesson learned - the financial pain of a direct flight is very very definitely worth paying.

The chap who greeted us at Orlando posted us to the front of the customs queue then disappeared to find our luggage. No queues no delays, and our friends who had been upstairs on the plane caught up with us in time to catch a monorail over to our shuttle and on to the hotel.

And the hotel had sorted rooms so we and our friends are close enough for the children to visit, but far enough apart that they can't hear the girl's early morning strops. It's all good, as is the make-your-own waffle breakfast.

Our more energetic friends disappeared off to take Jedi Knight training lessons this morning whilst we pottered around, picking up supplies and generally getting a feel for our location (ok, ok, by going for a long walk in the wrong direction before finding the short cut back to the hotel).

And in the afternoon, time spent finally meeting a family who have been net friends for a decade or more; the lovely Alesha and co. I'm writing this on my phone so can't link, but you'll find Alesha at Obtaining Mercy on the links over here--------->. Unless you're reading this on a phone, in which case you won't. But she's lovely, and her blog is worth reading, and she makes beautiful jewellery.

Lesson reinforced; the Internet is in itself neither good nor bad, but we can use it as we choose. And I choose to use it to connect to friends, and it turns out those friends are friends no matter what distance there may be physically.

I could put that more succinctly but it's late, I've been awake since 2.30, and I'm now typing as much to keep myself awake as to share anything useful with anyone.

The girls were on top form for the visit; tLP happy and chatty and keen to tell her jokes. One day she'll find a real punch line, but in the meantime laughter over the random surreality convinces her she's a master entertainer. And Mog decided to get very chatty, named her new toy money after Alesha, gazed long and hard at the handsome Isaac (but don't worry, L, you remain her favourite!), and told us all how much she wants to go to see Mickey and go shopping for a new dress.

Both girls fast asleep beside me here in our room now, as I blind type this; the light from the screen being too much of a contrast to the dark room for my eyes to proofread. Which is a rubbish excuse, but still, my apologies.

And now I must join them; I woke up at 2.30 Florida time and it's now 2.30 UK time and although I know I haven't, my body is adamant I've stayed up 24 hours.

A lovely restful day, and tomorrow we need to find a Small World, some Pirates, Winnie the Pooh, some spinning teacups, and a set of princesses. It's all good.
Tia

Saturday, 27 October 2012

Longer Letter Later

Or earlier. Or at some point.

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

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

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

Thursday, 25 October 2012

Getting Ready

On today's to-do list


  1. Shower girls, prune and trim and generally make tidy before school.
  2. Breakfasts and meds and everything else we normally need to do.
  3. Finish packing.
  4. Cats to cattery.
  5. Washing.
  6. Washing up.
  7. Update girls' medical information books and pack them too.
  8. Load bus.
  9. Empty bins.
  10. Talk to neighbours.
  11. Deal with overflow of fruit and veg.
  12. double check passports, tickets, etc.
  • Make luggage labels and write them.
  • check everything cancelled which needs to be cancelled.
  • Leave notes for them wot needs notes.
  • Not on today's to-do list
    1. Nip into school and shave my daughter.
     And here would follow a thoughtful post about children growing up, except that this was needed in order to tape her arms to help her muscle tone, rather than any teen girl crisis. And I'd still be inclined to muse about how this wasn't how I'd envisaged buying her her own razor (if I had ever planned these things), but the school bus has just turned up, and so I must unload girls from there and load them onto our own. Let the holidays begin!

    Tia

    Wednesday, 24 October 2012

    No, please no!

    I occasionally take a hunt through blogger stats to see what people look for when coming to this blog.

    And I'd like to take issue with the first searcher. "A pint weighs a pound the world around." No it doesn't; here in Merrie England "A pint of pure water weighs a pound and a quarter." Yus folks; perhaps it's the only thing bigger in England than in America, but our pints are a very satisfying 20oz.

    But to the searcher hunting for "movicol cats" I'd just like to say no, please no! I can't imagine how you'd get it into them and I sincerely hope to stop imagining the results fairly shortly. There must be a better way - glycerine suppositories?

    In other news, our bags are packed, the girls are excited, and, thanks to a friend phoning at the perfect moment, my kitchen is shiningly clean. The cats are not yet rounded up, but a nice cold night should keep them tucked up behind my knees, Mog has properly stopped coughing (note to self: empty suction pump before security) and is back to being chilly rather than warm, and this time tomorrow, we shall be in a hotel in Gatwick!

    Tia

    Monday, 22 October 2012

    October

    I think Autumn is my favourite season. September and the joys of harvest, the relief which comes with the start of term and the knowledge that I am no longer the only person responsible for keeping the girls stimulated and happy. I am so not cut out for any kind of homeschooling! But oh, new pencils and clean notebooks go hand in hand with the promise of the first frost, with cold clean rain and snapping twigs and glorious piles of leaves to kick and shuffle through.

    Conkers and craft fairs; the faintest whiff of Cristmas as plans begin to come together, presents begin to be accumulated, but no worries and pressures as anything final is months away.

    Nights draw in, and small children accept earlier bedtimes and later waking times, and are all the better for it. Soup is in season, and apples and blackberries; it is a time for gathering in provisions, for making jam and applesauce, and filling the house with the heady scents of harvest bakes. Bread rises at its best, encouraged by the new warmth in the airing cupboard, and absorbing the wild yeasts carried in with the fruit.

    Not this year; my apple tree stands in solemn melancholy; a few wizened fruits rotting on the branches, or falling, hard and sour and green, to the earth where thankful insects and slugs are enjoying their own harvest. I have apple envy; my neighbours have no oxen, but I covet their fruit. They have the best harvest in years, but appear content to leave it where it falls. Sadly, it doesn't fall my way.

    Inside, I feel the need to nest. Spring cleaning doesn't appeal to me, but an annual Autumnal shedding of the excesses, pruning the clutter, and generally putting the rest to rights satisfies something deep within my soul.

    And then there is the urge to escape, to take a last run towards the sun before welcoming my velvet curtains and flickering candlelight. And so we head off; to Tenby as last year and several years before that, or to Florida as we shall next week, and did six years ago; an early 18th Birthday celebration for Goldie.

    September is salvation; sighs of relief, a settling back into routine. October is the preparation for Winter; looking forward with pleasure for the good things to come, and looking back with thanksgiving for all which has been.

    January always seems to me to be the wrong time to start a new year. September would perhaps be more logical, but it takes me a month or so to get myself together after the summer. Perhaps because October always includes tLP's letterbox, perhaps because it is when I finally find myself with thinking space, October is usually when I can sit down and start to think about the year ahead. It's the month when I might actually begin to know what I am doing more than up to the end of the week. And it is, sadly, usually the time when I realise I have once again left it too late to start an Autumn runner for the table. Thankfully, Autumnal soup and gingerbread and pumpkins require no such decoration.

    So October is a month where I can take stock of things around me. A time where I see the cobwebs and the cracks, and resolve to redecorate and reorganise. I found a house to do list last week from October 2008. I have, finally, replaced the boiler. But the other items remain untouched. Taking stock does not, sadly, automatically equate to taking action.

    Beautiful sunsets and crackly mornings. And all too often crackly Mog too - it's not generally her best month. But I can't help feeling its a month when everything around us is holding its collective breath, waiting for the winter that is to come.

    Tia

    Sunday, 21 October 2012

    Insert suitably witty title here when less tired.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    Tia

    *brag alert

    Saturday, 20 October 2012

    For the beauty of the earth

    And the beauty of the skies
    Lord, unto Thee we raise
    This our anthem of praise.

    Mog's currently into a cappella hymn singings. We've been immersed in Mennonite Youth Choirs, thanks to YouTube. She's particularly did of joining in with anything which has been recorded outside and sung simply.

    Unfortunately, the vagaries of Yourube, or perhaps my own incompetence, mean I can only get one song for her at a time unless she's at our main computer. One hymn isn't quite enough to lull her to sleep, and getting up every three minutes to hit the replay button (or worse, find another decent track) isn't my idea of fun.

    So in the interests of her enjoyment and my continued sanity, does anyone have any suggestions for a nice iTunes album? She's not impressed with the previews we've found do far and definitely doesn't want Chamber Choirs.

    Tia

    7

    Seven sleeps til Florida, six sleeps til Gatwick; much excitement from the Little Princess. Less excitement from Mog, who now appears to have an upset tummy from the antibiotics she's on to treat her manky gastrostomy; following on immediately from a different set for her most recent chest infection, she is now feeling pretty worn out.

    6 more sleeps until she has to be well enough to cope with the travel.

    And therefore 5 more sleeps for me to keep on noticing little things like the lack of a transformer on the charger for tLP's wheelchair, oops. Thankfully we can I hope pick one up in the morning. Powerchairs are great bits of kit but not much use without their charge.

    I say sleeps because for some reason tLP understands that better than days or nights. Which is odd, because if I were her I'd be counting a night when she wakes up in the middle as two separate sleeps. By which logic, she ought to be flying tomorrow or Sunday at the latest, and Mog should already be there.

    It's not been the most peaceful of nights.

    Tia

    Thursday, 18 October 2012

    Annual Review

    No, not the school one. It's that time of year when I once again sift through our lives to come up with a few highlights, some gentle lowlights, and the best of the photographs, piece it all together and post it to the Little Princess' previous parents.

    It's where I'm thankful for this blog; even when the content is low there's something that will jog a memory or two. And it's when I read back through the previous years' reports, and get to whizz through a condensed Life of TLP.

    I see those endearing missing teeth. That Brownie promise and the Rainbow one too. Cats and kittens, holidays and friends.

    Disconcertingly, I find photographs of writings - and see that tLP has made little if any progress in actually getting meaningful thoughts down on paper, although she can now read some words by sight.

    I see that last year we were discussing neurosurgery, this year we have bowel and bladder stuff to cover, and that for the past several years we have been talking about spinal surgery which still hasn't happened. I edit out the spine photos.

    I celebrate the phenomenal number of holidays we have taken, and decide to save Florida (7 more sleeps til Gatwick, huzzah!) until next year - it should yield some nice photos.

    I remember the day when tLP met a real princess (but gloss over her demand for 'am samwiches). I find photos of tLP on a swing, 6 months ago and 18 months ago, and wonder why she can't swing herself any more; whether it's lack of practice or abdominal surgery or what.

    And as ever, I wonder about the people reading the letter. Have I included enough? Are there questions they'd like to ask? Do I include too much, does what I say cause them to worry for another year? Do they keep the photos, share them with family, post them on Facebook, or lock them away in a drawer?

    TLP had a question for them last year, which has not been answered. Would asking it again drive them further away, lead them to dread reading these notes which are the only link they now have to the baby they conceived and cared for in the womb? Do they look forwards to these letters or view them with dread? Was it their request to have this kind of contact or was it imposed on them by the decision makers?

    And whose idea of a cosmic joke was it to have the long awaited neurodisability psych report land on my doorstep the same day I had to write it?

    But, the letter is written, the report is read, and whilst I could sit and wallow in both, instead I'll enjoy reading back through some of the other archives, like this http://behindthechild.blogspot.co.uk/2008/10/fits-and-starts.html?m=0
    Tia

    Wednesday, 17 October 2012

    Abingdon Crop Circles

    Otherwise known as "What happens when you tell your daughter she's not coming inside until she's cleaned the dog poo off her wheels."

    There's a particular point in our most common route where there is nearly always a festering pile of poo. It seems to remain fairly constant in terms of quantity and consistency; I'm tending to the theory therefore that it's one particular dog rather than just a popular pooing point for passing pooches.

    Perhaps fortunately, it's just that bit too far away for me to set a guard to inform on the perpetrator. Although if I did, and if I then confronted the owner of the dung shedding dog, and begun the confrontation with "a little bird told me", could I then consider the guard to be a genuine stool pigeon?

    These are the thoughts which march across my mind as I send my daughter back into the muddy puddle for another rinse, whilst hunting for a nice sharp poo cleaning stick.

    Tuesday, 16 October 2012

    Frustrations

    Thank you to people who've been asking after Mog. She has been pretty poorly, including some interesting (and in true Mog fashion, utterly illogical) new symptoms, but she's definitely much better now, breathing nicely if noisily, producing lots of lovely secretions, and generally picking up where she left off last week.

    Except.

    She's got a really very sore gastrostomy. Mog doesn't do sore gastrostomies; that's the Little Princess' speciality. And bright pink throbbing things with green slime glowing all around them are really totally unnecessary.

    So we swabbed it. Labelled it, dropped it off at the GP for them to take to the labs, and the next day she started coughing green, and we breathed a sigh of relief for knowing what we were dealing with, poured antibiotics into her and watched her recover.

    But the gastrostomy stayed sore. And so I rang the GP - no lab report. Rang the community nurse - day off. That was yesterday. Rang the GP today. No report. Rang the team. Everyone in meeting, a message would be left.

    Drove Mog to respite, having arranged to do so despite not being in school, knowing that Mog has an appointment in Oxford tomorrow anyway, so I may as well enjoy not getting up at five, but instead drive over nice and early and collect a dressed Mog ready for her appointment.

    Get home, just as tLP's bus drops her off 30 minutes earlier than expected.

    Message from physio who has managed to move mountains and arrange a long planned special even for Mog. Great. Except she's arranged it to happen in school tomorrow afternoon. Attempt to contact physio to explain problem, but no reply. Argh.

    Realise no one has returned call about manky gastrostomy. There are three possible options, but knowing the lab results would be kind of important in deciding which treatment to go for. We can extend the duration of her current antibiotics, use a different antibiotic, or discover its not an infection at all in which case we need to work out why it's doing what it's doing.

    Call back; been a busy meeting day and no one has had time to respond to my message yet. Can I try again in the morning when someone might be around?

    Get a little upset. Am put through to a nurse who suggests I call my GP. Explain I have tried this already at which point she suggests I "access my fast track through to getting it seen at hospital." We have a fast track? Oh, maybe not, turns out she's new and she doesn't have any information about, well, anything really, ha ha ha isn't it silly? Wonder why I've been put through to someone who can't help - apparently she can pass a message on. Unlike the person I initially spoke to, who can merely write messages down.

    Mog in respite, my imagination is by now blowing the throbbing pulsating mass of a gastrostomy up into a huge throbby veiny mass with a life of its own. Remind myself this is unlikely, and listen as new nurse recommends I "get it seen but of course you know her best."

    Call respite again, am reassured it has not exploded in my absence and is still merely red and weepy. We agree A and E is probably an overreaction. And that I will try again to find someone, somewhere, who has access to lab reports.

    Consider applying for info under not Freedom of Information but whichever act it is that relates to personal information held by organisations. Remember that the hospital have decided I am not next of kin for Mog because despite not requiring proof of birth or adoption status they now require copies of our court documents. So would probably be unlikely to give me any information directly. Especially since parts of the hospital now appear to believe she lives at respite. Joy.

    Give up. Realise tLP is late for Brownies. Harry her into her uniform and off for a penny hike.

    Come home. Sit down. Realise that this one single hour is now potentially the only time in this whole 48 hours of alleged respite when I will actually be sitting down, at home, without a child present.

    Debate weeping but decide this would be a waste of precious respite. Go to post blarty status on Facebook but fail to be in any way concise or coherent. Post here instead, before getting up, finding a hairbrush and a cleanish top, then nipping out to pick up tLP before going out for a very nice meal with some very nice Mums who will all understand these particular frustrations, since they form an all to regular part of their own lives too. This evening will be good. This day? Not do much.

    Tia

    Pumpkin and Cashew Nut Soup

    I didn't think anything could beat my sunshine soup. Until I tried this. Posting for posterity because I would hate to forget about it.

    Take one pumpkin or other squash, hack into wedges, drizzle with oil and roast.

    Meanwhile gently fry an onion, add a pear (unpeeled), and some vegetable or chicken stock. Cook gently.

    Take the roasted (and ideally slightly cooled) pumpkin, pull off the seedy strands gooey bits and the peel, dump the rest in the saucepan with the onion and pear.

    Start blending, then realise you are craving protein and this is somewhat lacking. Add a shedload of cashew nuts to the blend and blitz until smooth (thank you, vitamix!).

    Return to pan on a very low heat and season to taste - salt, black pepper, nutmeg and chilli powder gave this a gentle warming kick.

    Eat a bowlful, pour some into bottles for your daughter's lunch, freeze the rest in bowl sized packages and then try to resist glugging the bottled version (adding some powdered rice to the bottles may help in this process).

    The cashew nuts take the rich orange of the pumpkin and transform it to the palest yellow - think more wishywashy sun just barely making it through the clouds and mist, rather than the intense golden light of the earlier version.

    But then take a taste, and this is liquid wood burning stove; warming, comforting, intensely satisfying, and dangerously addictive.

    Mmmmm yum.
    Tia

    Sunday, 14 October 2012

    Break time

    Sometimes, you just have to seize the moment. Enjoy the contact. Wait too long for the right time and suddenly there's no time left.

    And I do love him; he is rather gorgeous.

    But I wish he'd pick moments when I'm not mid row!

    Friday, 12 October 2012

    Celebrations about a complication-free anaesthetic may have been premature.

    Or possibly we had our 'flu jabs too late.

    Or perhaps this is a reaction to the 'flu jab.

    Or maybe it's the lurgy which is apparently running rampant in school.

    Or it's four weeks since the last lurgy, and four weeks since the one before that, and four weeks since the one before that, so maybe there's some kind of a pattern there.

    Or perhaps it is that she knows we're going to Florida in a fortnight and would like to ensure I have a fully grey head before we go.

    But whatever the cause, miss Mog was an ok but sniffly oxygen dependent chest infection confirmed by GP girl this morning. And this evening is all that with the added joy of not seeming to cope on CPAP. Which is odd, because that's normally our failsafe.

    So we're watching and waiting and praying she shifts it, hoovering pints of slime, and have Grandparents on standby in case we have to relocate in the middle of the night.

    It's not great.

    Tia

    Thursday, 11 October 2012

    Determination

    It might not be the bumper cars (I am, apparently, the meanest Mummy in the whole wide world for telling her she can't ride them when she's been complaining of backache for the past fortnight), but tLP was determined to extract every penny's worth of value out of the hook a duck Disney character to win an Angry Bird ball stall.

    Pleasure in meeting friends from school and elsewhere, and torment over not seeing this month's best friend, frustration over not being able to do everything and complaints over the noise levels, but apparently it was still the best fair ever. Phew!

    Tia

    Wednesday, 10 October 2012

    Beautiful Day

    Today is a respite day. Miss Mog at Viking House, the Little Princess with choir after school, so a long day mine all mine.

    A friend to meet for lunch, vague plans for the rest of the day, and altogether much relaxation planned.

    And then...

    A very over tired Princess, ratty and obnoxious and shouting at the carer.

    No school bus, waited until beyond the point of lateness and then walked tLP to school instead.

    Three phone calls from school plus four from respite, a rescue trip to deliver extra medication and a not very happy Mog.

    Or, viewed another way...

    The chance to witness our carer's behaviour management techniques, with time to step in supportively, without abandoning Mog mid-routine.

    A chance to walk with tLP, holding hands not grumping about running over her sister's wheels. A gentle chat and some beautiful giggles, precious unrushed and undistracted conversation. And then a peaceful meander home with no excuse to avoid a spot more exercise.

    A school and respite unit who know Mog well enough to keep her safe, know when to call for help, know what help they need, and work together to make Mog as comfortable. And where Mog is happy enough to decide to go back to respite for a rest, rather than coming home.

    And then a very very lovely chicken noodle soup with a friend and her delightful son, a new recipe resulting in some rather luscious lemon biscuits, a quick cuppa with another friend, and now Steel Magnolias and a new knitting project.

    A beautiful day.
    Tia

    Tuesday, 9 October 2012

    Yo ho, yo ho,

    A Pirate's life for me.

    School assembly,
    Whatever can we be?

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

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

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

    Monday, 8 October 2012

    Two Sentences

    Our Curate posed this question yesterday: "If you had to present the gospel in just two sentences, what would you say?"

    Aha, I thought, from my nice safe seat near the back (have to be able to get out in a hurry in case the girls need me, don't you know?), that's easy.

    "For God so loved the world, that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life." and maybe, Jesus said "I am the way, the truth and the life. No one comes to the Father except through me."

    Except, oops, that's three sentences not two.

    So then more verse from the bible, passages from the creed, liturgy we rarely use any more started floating through my mind.

    The 4Points have it down fairly pat (and some groovy sweatshirts):
    • God loves me
    • I have sinned
    • Jesus died for me
    • I need to decide to live for God
    Now technically; technically - that's only one sentence. Less than one sentences since there doesn't appear to be any punctuation at all. And it's all very glib, and it's probably the shortest answer to "Teacher, what must I do to be saved?"

    But I started thinking about who might actually be reading these two sentences. And I thought about the people I speak to most often, the people I spend the most time with. Friends, family, support staff. And I realised they've all, probably, heard these words a thousand times before.

    So what would I say if I knew this were going to be the very last chance I'd ever have to say anything at all to them?

    And that's a harder question, because the temptation would be to keep to "Goodbye, take care, I love you." Keep it casual, keep it light, or take it deeper, but still only surface deep. There is, after all, an enormous arrogance in starting a conversation which aims to bring up something along the lines of "Look, I'm saved, you're not; I'm right and you're wrong, fall down on your knees and repent for the end is nigh!" May God forgive me for the times I've ending up running down those lines. And may He also forgive me for the times when I've let the fear of sounding arrogant get in the way of speaking the Truth.

    Because the truth is; I'm a very long way off perfect. There are logs in my eyes bigger than the Titanic, and capable of causing even more destruction. I am not patient, I do not have a proper and Godly amount of self control; I shout far too often for my own peace of mind (and possibly that of my neighbours' too). I'm way too happy when bedtime comes. I enjoy that chocolate-fudge-brownie-with-a-side-order-of-gingersnap-biscuit-and-maybe-a-small-helping-of-chickencasserole,asparagus-risotto,-ooo-another-couple-of-roast-potatoes-and-a-large-bowl-of-rice-pudding,-why-not far far too much, and dislike really quite intensely the thought of any of the exercise which might help burn it all off. My house is messy, and I'd far rather read a book or write a blog than do anything about that. And that's just the stuff I'm willing to share.

    And with all of that, how can I possibly turn around to anyone at all and suggest I've got something they need? Especially if they don't know they need it? When a friend says they go to church because it's the right thing to do, but they don't believe in all of that stuff, and yet they busy themselves in church life(Not our church!) to the point of spending most of their time in church activities, serving those in need, helping out wherever most necessary, how dare I suggest that perhaps they should listen to the sermons from time to time?

    When a friend has been deeply and seriously hurt by The Church in the past, how can I presume to suggest that hope may be found in that same place?

    And the answer is, of course, I can't. We, the people who make up The Church, are broken, fallible, sinful, imperfect, flawed. There's nothing about me which is intrinsically better or worse than anyone else. I was born with the same balance of good bits and bad bits, and the same need to work things out. My own bad things might be different from yours, or they might be the same, but they're all still there. Perhaps there are those out there who don't struggle with something in their lives, but I've not found that person yet.

    And so maybe that's the answer. It isn't about me. It isn't about looking at me, measuring my life against yours, or yours against mine. It's all about God. And if I measure my life up against God, I come quite a long way short. As do the most annoyingly perfect of my friends, Christian and non-Christian alike. We might be "not that bad", but nothing short of utter perfection, in everything, is ever going to be good enough. Happily, God loves me anyway. Jesus loves me, this I know, not because the Bible tells me so, but because His still small voice whispers to me when I open my ears to hear.  And I am His; and being His doesn't insulate me from any of the horrors of this world, but it does mean I am never ever facing them alone. And that Eternal Life bit; well that sounds pretty good too. Eternity spent at the feet of the One who loves me the most, or Eternity spent alone? I know which I'd prefer.

    So perhaps my two sentences come down to this. "Jesus loves you and me, more deeply than you can ever imagine, no matter what we ever have done or ever will do, and there are no limits to what He can and has done for us." And "So what can we do in return?"


    Sunday, 7 October 2012

    More on Mog

    "Give it a few days, then start stretching her for several hours every day" read the discharge instructions.

    Great, except that holding an arm into a position it doesn't want to be in is easier said than done. And whilst strapping an arm into clothing or chest straps will keep it from flipping up around the shoulder, it won't help to splint a wrist.

    Enter a Picture Puffin and a couple of scarves.

    I think she approves; I just hope the physio does too!
    Tia

    Saturday, 6 October 2012

    Give me strength!

    Mum, I wanna get up.
    Hey, Mum, why are you getting me up? I wanna stay in bed.
    Mu-um, I wanna sit on the toilet, I don't wanna toilet, I wanna no no nooooooooi!!!!!

    I don't wanna go to town. I don't wanna have a flu jab. I don't wanna do shopping. I don't wanna go to a cafe.

    I do wanna cafe but only if I have a drink and you don't.

    I do like tomato soup. I will eat it, I will, please please please can we have this tin of soup?

    Hey Mum, I don't wanna go in the bus I wanna go to the cafe. I don't wanna go home.

    What's for lunch?

    I don't want tomato soup I hate tomato soup it will make me sick I don't wanna it.

    Hey Mu-um why aren't you listening to me?

    Argh!
    Tia

    Friday, 5 October 2012

    21

    21 sleeps 'til Florida is all tLP is interested in at the moment. Except her Birthday, in March; she's already planning her guest list. I'm a bit scared.

    Especially as it transpires she'd like to invite her boyfriend. I'm not sure how I feel about that one - I lie; I'm very sure I am totally against any seven year old having a boyfriend, even if he's seven too. But when I asked her what made him special, she told me "he is very kind and caring and he always does the right thing." So maybe she should hang onto this one?

    But I'd be happier if she were 21...
    Tia

    Thursday, 4 October 2012

    Here we go.

    Outpatients aside, we've avoided hospital for Miss Mog for a few years now. Home support, hospice support, and everything we've needed has been provided.

    This procedure is not of my choosing. We're now next on the list and waiting to go. Every so often, I doubt the evidence in front of me, and so I thought I'd better double check that Mog really did want to go through this.

    She's sure!
    Tia

    Wednesday, 3 October 2012

    Good news, bad news.

    The good news is, the new protective cover for my phone has been shipped and will be here any day this week.

    The bad news is this.

    Ouch.

    The good news is, I had a phone call to say that the company who make tLP's wheelchair have decided to pay 60% of the costs of the last repair, and there is a cheque in the post.

    The bad news is, I'm not sure when I'm going to have time to get to Milton Keynes to use the money in the cheque to pay for the repair to the phone

    But the good news is, it still works, it's only the back which is covered in shattered glass, the cover will stop it happening again, and even once I've paid to have it fixed, there will still be some money left over to go towards the next repair bill

    In other news, I don't like medicina syringes.

    But it turns out that deeply shiny artex ceilings wipe clean very nicely, as long as you catch the spray before it sets.

    I'm thinking of trying Tippex on the bits I missed.

    Tia

    Tuesday, 2 October 2012

    Intruder!

    Meet Munchkin. S/he is very beautiful. But far too at home in our house, and has Grolly and Benjamin both prowling around my bedroom at night, keen to inform me that their favourite sleeping spot has been misappropriated once more.

    Shutting the cat flap leads to many puddles and pongy deposits; Grolly not being one to deign to use a litter tray. Except at the cattery, where, apparently, she is a model cat.

    So, any tips for long-term eviction?

    She loves in the house which backs onto ours; her family are lovely and gave us some beautiful flowers in exhange for three of her collars - she likes to shed them in our cat flap. I know she's loved, well cared for, and well fed. So it's not a case of a cat needing a loving home. It's a case of a very hissy growly cat deciding our sunroom, cat food, laundry basket and doormat are hers and hers alone. And of my own cats being wimps.

    And, if tips are being offered, anyone know where the twenty partners to the odd socks in this laundry basket might be hiding?

    Tia



    Monday, 1 October 2012

    More from Mog and Me

    We spend quite a bit of time together, Mog and I, usually when she is unwell and the Little Princess is in school. It's nice, except the her being unwell part; tLP is naturally hugely exuberent and generally manages to ensure most of the attention is firmly fixed on her when she is around. Without her, it's Mog's choice of music, or peaceful silence. Or, of course, the suction machine, the siren song of the SATs monitor, the Grump-hiss of the oxygen concentrator and the steam train breaths of a rather poorly child. But still, it is as a rule a more restful environment when tLP is elsewhere.

    tLP and I get our own time together when Miss Mog is in respite, and the dynamics are different again; freed from the necessity to compete we get silly giggly spontaneous expeditions or calm uninterrupted cuddles, and occasionally a swim, although these are trickier to sort out now that swimming lessons are back in session and pools are closed to the public after school. We get to go for walks holding hands, sneak out for fish and chips, or just sit and chat. And always, she likes to phone Mog at respite, and check up with the nurse that all is going well.

    But this was a different kind of tLP free day; Mog and I went into Oxford to the Magic Cafe. And as I sat and stuffed myself silly with enjoying a tofu chana daal with cauliflower bhajis, Mog's other Mum entertained us all with a lovely selection of songs. Beautiful singing, a fine pianist, and Mog providing backing vocals where appropriate; a lovely way to spend a lunchtime. Even if the people at the table behind us seemed completely oblivious of the fact the music was live, and determined to talk on ever louder to drown it out. 
    Didn't put Mog off though, although the change of pianist half way through did disconcert her a little.

    And then Mog and her other mother went for another music session of a rather different kind, and I had a whole two hours to myself, to be spent pootling along the Cowley Road. Dipping into Oxfam, I found a book I'd been hearing good things about and thinking I ought to read, a copy of Swallows and Amazons, identical to the one I had loaned out several years ago and never had returned, and slotting beautifully into my newly pruned bookshelves beside the rest of the series, and a new Kipper book for tLP. And then the cashier disappeared with my books, returning after five minutes with an apology, and a discount as one had been wrongly priced. Hurrah!

    A bit more of a wander, and the shops began to pall, so I slipped away from the traffic and into one of the more peaceful spots on this planet.

    Closely supervised by a very nosy, but very upside down squirrel, I meandered through the churchyard and cemetary

    propping myself up on a tree trunk to read a few chapters of my new book
    and enjoying the beauty, and the greenness, just a solid brick wall away from the hustle and bustle and fumes of the roadside.

    It's an odd place really. Where else would you find four bicycle shops all within a few hundred yards of each other? Twelve different barber shops, cuisine from around the world, little shops selling okra and yams and sharan fruit and rice, university students and staff and young families, two hospices, a couple of convents and some very adult shops and bars, all side by side with this peaceful woodland memorial churchyard and cemetery in the middle?

    Old graves and newer graves, beloved husbands and mothers and children. And this:
    "Not forgotten", says the inscription at the bottom. And, louder than the words, "Not Forgotten" proclaims the geranium clipping newly placed in a neat little pot. Not wife and mother now, but daghter and sister? Brother and son? Two deaths nearly a century ago, and someone still remembers. I hope they have the comfort of hoping for a reconciliation.

    And so I think of Goldie. I don't visit her grave; she is not there; it is not a site which has much meaning for me. And it is, in any case, far more important to her other family, and it would only cause extra grief if we were to meet there unexpectedly. There are other places which are far more Goldie-ful than one small slice of earth. We will meet again one day, and what an amazing meeting that will be. Meanwhile I'll catch her echoes along school corridors and in quiet spots at church, in photographs and with friends and in the sudden wave of recollections which wash up,  released by a phrase or an expression or any one of a hundred unexpected things.

    Never Forgotten.

    So I paused to photograph the marker, and then paused again when I came to write this as to whether I would include it. It is, after all, someone else's story and not my own to tell. So I hope the flower-giver, the rememberer, will forgive any hurt if I have intruded upon his or her grief. And I hope those friends I have to do visit graves - and how can it possibly be that I have more than one set of friends who nurture a too-small grave? - will also understand that I mean no disrespect by not visiting, and cast no criticisms their way either. We just mourn differently. 

    And then, because life's like that, and because time runs on even when it feels as though it has stopped, I walked back to one of the hospices, collected a happy singing Mog, and drove back home, picking up a very contented Little Princess on the way. And there was tea, and there were bedtime routines, and there was much silliness with the cat, and it was a good day.

    Tia





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