Sunday, 30 September 2012

Mog's memory Verse

I'm not sure how I'd feel about losing my voice. I know how frustrated I get when people hear without listening, when I am talked over or ignored, or when I have to shout before a certain little princess hears me telling her she's on my foot and needs to move her chair RIGHT NOW.

Mog's never been able to talk. Not with words she has chosen, shaped by lips and tongue, and given voice through controlled use of her vocal chords. That doesn't mean she doesn't have anything to say; it's amazing what you can convey with a yes and a no and a carefully timed kick or roll of the eyes. She's never indicated that this lack of chattability bothers her though. We've tried scanning communication devices, and she has settled for the simplicity of a yes/no response and her "talking book", an auditory scanning file which is read out by myself (or anyone nearby and literate), and which she uses her yes/no response to scan through until she finds the thing she wants to say. It's limited to what those of us who have written it think she might want to say though; and nowhere in it is there anything close to "you're a smelly poo face" - although perhaps we should add an insults page. "This is boring" only goes so far. She finds a well timed clout around the ears with her boot-clad feet works wonders though, so we've not worried too much.

But still, even though she doesn't ever complain (and she does complain about some things; this is not a question of me not allowing her the opportunity to moan. Which is, sadly, all to easy to do when she can't just shout it all out), I'm sure there are times when she must feel set aside. It can't possibly be pleasant to overhear small children tell their parents they think you are dead, apart from anything else.

But, one of the things you might get if you don't have your own voice, is a switch connected to a LittleMac, and a LittleMac, for those who don't know, is a clever little switch which can work toys, plug into switch adapted anythings, and also carry a recording. Mog usually uses hers to say "Hello" or "Oi, pay attention to me!" But it does get used to share in other things too. Record Brownie Bells and she can sing along with the others. Record the holiday club chant and she can shout with the rest of them for the whole of the following week until someone at school is finally brave enough to record over it. And, when challenged to repeat correctly the morning's memory verse, it's awesomely easy to have it absolutely one hundred percent word perfect!

video
Tia

This is Our God


Saturday, 29 September 2012

On the move?

We've lived here for a while now. Nine years, almost to the day. This has been The Little Princess' address ever since she moved in with me, and it's been Miss Mog's since she was 15 months old.

We moved out of our old house because, beautiful though it was, it was not suited to the needs to two wheelchair users. Into our old house moved a family whose previous house was not suitable for their disabled daughter. And into that family's previous house moved another family, whose former house was not suited to the needs of children with disabilities. All change. And all, as far as I know, happy in our new homes - certainly, none of us have moved out just yet.

One of the first things to happen when we moved here was the installation of overhead hoists in what was then Goldie's bedroom. In what would turn out to be an interesting sequence of events, Goldie had been scheduled for a minor op the day after we moved in. This minor op had the unintended consequence of landing her in bed for more than a few weeks, as her healing was somewhat slower than anticipated. And so it was that the installers had to work around a bedbound Goldie, creating a den for her in her own bedroom, barricading her into a corner with her wardrobe and chest of drawers, draping a canopy of dust sheets over the bed as they drilled and hammered, and took eight hours to pound their way through a significantly more complicated than anticipated ceiling track installation.

She loved it - mammoth amounts of noise and chaos and confusion, and a captive audience for her retelling of the Three Little Pigs and "Gordilocks and the Three Beers."

I'm not sure they were quite so enamoured of the experience.

But still, eventually it was done, the hoist was installed, and over the next few years we would gain further hoists in the bathroom, Mog's bedroom, and playroom.  Each of these hoists would be serviced every five to six months, and so over the years we've had a number of different hoist engineers bringing slips to sign to prove their presence. Goldie's room became the Little Princess' room, green and gold moved via an underwater phase to its present extreme pinkness, the names on the forms changed, but the engineers have stayed largely the same.

And now, to facilitate tLP's independence, the hoist in her bedroom needed to be swapped from the standard button for up, button for down, pull it along the tracking to slide left and right type of hoist to one with four buttons, so she can slide herself left and right. I'm not entirely certain I like the idea of her being able to get out of bed by herself, but I suppose we can't put it off forever.

I had a letter a few days ago, informing me that the hoist would be swapped shortly. I had a phone call yesterday, confirming that the work would happen today. And then today, I had a phone call from the engineer, claiming to be standing outside our house waiting to be let in. Except that he wasn't; he was standing outside our old house, the one we moved from nine years ago.

Somehow, despite the letter having been sent to this address, the company have my old address listed as tLP's current address. I'd think this was simply outdated records, except that tLP has never lived there, so someone must have manually inserted that address into her file.

And then let's add Miss Mog's current address confusion; one branch of the hospital appears to believe that she lives at her respite centre. Medical records claim the only way we can change this is for Mog herself to write in with her correct address. Again, this is not an address which has ever been Mog's address, meaning that someone has taken the time to update the records, incorrectly.

Somehow, independently of each other and myself, both girls now have alternative addresses. I wonder if someone is trying to tell me something?
Tia

Friday, 28 September 2012

Ah yes...

Boiler replacement, holiday preparation, house tweaking, and general life. I knew I was forgetting something.

Miss Mog's Botox is next week. It's only a very minor procedure; she'll be under general anaesthetic for a matter of minutes, is all. And yet... they're taking my baby and giving her a mixture of medications which will make her unconscious; and each and every time they have done that, she has gone on to develop a biggish chest infection fairly shortly afterwards.

There is, of course, a huge difference between general anaesthetic for a several hours long procedure such as breaking and resetting hip joints, and the "touch of anaesthesia" she will be getting to hold her still for a series of little injections. There's a big difference between the shock to the system of having bones shattered, and receiving a few small pinpricks somewhere near the shoulder. And yet...

So spare us all a prayer, please, for a nicely uncomplicated procedure and recovery - and a beautifully flexible arm, a Tuesday at New Wine arm, please, for our holiday and beyond.

Thank you,
Tia

Thursday, 27 September 2012

28 sleeps

And we finally have clearance to fly. Oxygen booked for the flight if needed, airline reassured that neither girl is likely to die on board, both girls measured for special flight chairs, wheelchair measurements set up for the ground crew, all essential equipment (bar the external battery for the ventilator, but we think we have finally given the engineers the correct information) approved for either use on board or else transportation.

One GP with the patience of a saint, having been phoned all too regularly over the past weeks, to give explanatory letters, carefully worded prescriptions, additional medical information, forms for the airline and forms for the medical supply companies and letters for the security people. Each letter or form she's filled out and returned within 24 hours, generally calling to check wording or tweak details. She's on holiday herself now; definitely deserved.

One medical supply company happy with the wording of the prescription and accepting a photograph of the letter so I don't have to try to post it out.

Two cats booked to the cattery, both sets of vaccinations fully up to date.

US dollars sorted, and at an exchange rate which gives us effectively one free taxi to Disney compared to the exchange rate when I started placing the order a few days earlier. Or ice creams all round, or something.

Weird visa ucsis thingies all filled out and accepted.


Hopeful arrangements made to meet long-term but never met Floridian friends; we've been bloggy friends since before either of us had blogs, part of the Christian Parents- Special Kids emailing list since before either of our adopted children had come home. That's a long journey to share from such a distance.

Blender borrowed from a friend who bought it when she was over there herself a few months back; we will be able to feed Miss Mog when we're out there. Still to do: work out what to feed Miss Mog on the plane; even if I could transport a day's food in 60ml bites (which would, actually, be reasonably simple if I just froze it in individual syringes), I'm not convinced security would be very happy about it. Hope that Boots sell sufficient baby food pouches to see us through the day? Bring some dried baby rice and hope the aeroplane has milk and fruit juice? Create something pumpable and put her back on the pump?

Amazingly, both girls are now completely off pump feeds. I've kept the pumps; time enough to return them once they've both managed major surgery or illness without needing them. But is it going to be hot enough in Orlando that either or both girls will need water drips to keep them comfortable? Or can I leave behind all the plastics, and rejoice in the extra luggage space?

Today I finally managed to order the oxygen we ought to have on standby in case Miss Mog needs it. This was the very last major piece of the holiday puzzle. There are still minor bits and pieces which need to be done. But I think, provided I don't lose any of the letters between now and then, we might actually have completed all the specialist part of our holiday preparation. Apart from the packing, of course.

It might be time to start looking forwards to a week in the sun!

Tia

Wednesday, 26 September 2012

Getting ready for Christmas

Extreme home edition?

One of the joys of losing the ancient back-boiler was the prospect of losing our fairly ugly gas fire, an integral part of the boiler.

And it's gone. Great. Except - we're now left with this. 

I'm informed the concrete slabs aren't large enough for any newer type of fire, but if I remove them then there will be a concrete slab sized hole in the lino; I'm not convinced that's an improvement. The chimney thingy needs boarding up, or lining, or something. It needs a vent installing, although it seems plenty draughty as it is. And, hidden in that photo (which also does an impressive job of bleaching the blue walls white), is a metal flue, apparently suspended from the chimney pot at the top, and dangling somewhat precariously into the gap.

So, short of leaving it all as an express Santa Chute, anyone got any suggestions?


Tuesday, 25 September 2012

Beat the Guides

 One for local readers - we sent the Guides out last night to try to identify these and other locations. All within an easy walk of church. They had to match them in the dark. Any one fancy having a go?
Tia















Monday, 24 September 2012

Blackberry and Apple Brownies

Take one child's request to make brownies, open the 'fridge and pantry and realise you are somewhat low on ingredients.

Cast about a little, digging deep into the recesses of your mind, and remember that applesauce can substitute for certain necessary ingredients.

Tweak the remaining ingredients to avoid batter being overly sweet (I'd say low sugar but honestly? Hardly! LowER sugar and fat then. And delicious.

Write recipe down so you don't forget it, it having been really rather yummy.

Melt 3 oz butter with 4 oz minus a good bite plain chocolate.

Meanwhile, mix two tiny eggs with 7oz sugar (6 would have been fine I think), 1 teaspoon vanilla essence and 5 tablespoons apple purée. For added smug points, make sure this is unsweetened apple purée from your own windfalls.

Stir in 2 oz flour then add another 1 oz because the batter looks very runny. Self raising flour.

Add the melted butter and chocolate, then stir in 8 oz frozen blackberries. Fresh ones would be fine too, you'd just end up with a squashier mix - frozen, they stayed whole as they were stirred in.

Bake. They started at 180c, went up to 220 in the vain hope the pork crackling might crisper up, then came back down to 180 again. I'm not sure the higher temp was necessary. Can't give you a time - done when they look fishy squidgy brownily delicious. 30 minutes? 40? Half way through a plate of roast pork when they went in ten minutes before you turn the oven up for the last 15 minutes cooking time, and you've then had time to serve up, blend one portion down, assemble necessary children and read the riot act about just for once staying put at the table for the whole meal, only to find you need to leap up and take them out of the oven, anyway. It's a Mum thing.

Yum though. Would be good hot with icecream. We had no icecream. Still good.

Sunday, 23 September 2012

Urk

 It wasn't great news back in early summer, when the very nice man from the gas company offered to do a free safety check on our boiler, and promptly condemned it as unsafe. 

It was even less good news when I got to the start of September and realised that whilst procrastinating over getting it done during the summer holidays was actually sensible, potentially gathering quotes and booking the work in might have been even better.
 But it was pretty excellent news when the first plumber came round and discovered he wouldn't need access to the roofspace - only accessible via my upstairs neighbour's flat. This potential issue having been one of the main reasons for procrastinating on replacing the boiler for the past six years.

And it was even better news when the second plumber came to quote, and pointed out some gaping holes in the first plumber's proposal.
 But I think I might just have underestimated the amount of chaos it was going to cause.

 Access to all the radiators in the house, you say?
And access to the floor behind my wall of book cases?

But, three days of drilling and sawing and soldering, and one very hot night with all radiators on full blast and the new heating system set to 28 degrees to blast the power flush chemicals through the system, we now have heat and hot water on tap. Hurrah. 

And there was one other little benefit to having to access out-of-the-way parts of the house.
Sadly the Little Princess gave the game away on this one "Oh Mummy, you have cleaned your bedroom. Did you do it all by yourself? I am very proud of you!" 

Tia

Friday, 21 September 2012

Goodbye, Gwen

When I first moved back to Abingdon, leaving work and starting out as a foster carer, I lived in a beautiful but impractical house o the other side of town. A terrace house with three storeys; true there was a lift to the first floor, but only steep stairs from there to the second storey and two of the bedrooms. A narrow concrete yard, with the sort of washing line which needs a wooden prop in the middle to push the washing off the concrete and into whatever sunshine can creep between the high rooves and brick walls. Low brick walls partitioning the yards, and a ricketty wooden gate opening out into the back lane; the space for dumping rubbish, and what would become our main entrance, as the front door and hallway were completely inaccessible for wheelchair users.

Beautiful old red brick, a Christ's Hospital house with 1897 etched into the brickwork. Tall sloping rooves and wonky sash windows, creaky floorboards and horse hair plaster on the walls. Two up, two upper, and two down, and separated from the busiest road in town by a tiny front garden and another little gate.

I had never lived like this before. None of us used the front doors. Polished doorknobs and letter boxes, beautiful little gardens (except for our overgrown wilderness; some things don't change), but the real life happened at the back.

My kitchen at the back of my house had a back door facing next door; this was mirrored so next door's back door faced mine. My sink under my window was opposite next door's sink at their window, and here I came to know Gwen.

Gwen was my lovely neighbour , who welcomed us into our house and into this new phase in my life. Whether washing up at the same time, taking out the rubbish, or hanging out that endlessly damp washing, Gwen was always there, always smiling, and never too busy to lean against the dividing wall and settle down for a chat.

Gwen welcomed all my children; never phased by the somewhat impertinent questions put to her by a child with Asperger's, nor the shrieks and squeals of an overexcited, oversized, toddler.

When Goldie first moved in, and I turned my washing line into an overhead toy line for her, hanging bells and rattles and elasticated bouncy balls, Gwen cheered her on. Gwen's bedroom was next door to Goldie's, and not once did she ever complain about Goldie's all night parties.

Gwen shared my delight in Mog when she came as a baby, and never complained about the long hours of crying. She shared news of her family, filled me in on other neighbours and on our house's previous tenant, and encouraged any efforts I made to tame the wildly overgrown jungle my garden became, without once criticising the state I'd let it get into.

For years, after we moved house, I would see Gwen around town. She was never too busy to stop and catch up, marvel at how the children had grown, tell me something new about her daughter. Always supportive, uncritical, and encouraging.

Last time I met Gwen, we were both having a cup of tea at neighbouring tables in hospital. Catching up with Mog and myself, she shared how she had just had twenty seven injections into her eyes, to treat a painfully debilitating condition. Coupled with her worsening hearing loss, she begged me to excuse her for any times she might have walked past me in town, explaining how little she could see or hear these days.

And today it's Gwen's funeral. I hope she knows how much her encouragement and support meant to me as I settled into life in my own house rather than a hostel or shared place, and as I immersed myself in foster children and adjusted to always being the one on shift. I love our new flat; it is so much more practical for all of us, and we do have lovely neighbours here too. But Gwen was someone very special, and I think the world is a slightly dimmer place for the loss of her light.

Rest in peace, Gwen; you've earned it.
Tia

Thursday, 20 September 2012

BookSneeze review - Simple Secrets to a Happy Life, by Luci Swindoll

In this book, Luci Swindoll takes inspiration from her Mother; who would speak to her children in simple five word sentences, beginning with a verb. Growing up, this might often be something along the lines of "Go look for the boys", followed with "Tell 'em to quit it." Not sure how to tackle a mammoth project? "Start with what you know." Bored? "Make something with your hands."

Each chapter in this book is a short essay based around one of these five word sentences (Although not, "Go look for the boys" or "Tell 'em to quit it"). I felt this worked well, although some titles were necessarily a little clunky, in order to fit into the required format.

Does this book contain startling new insights which are going to turn my life around? No; but it has reminded me that my life doesn't necessarily need turning around. That the little things in life really do make a difference, and that it is worth making the effort to do something special from time to time.

There is plenty of food for thought in this book, and it is definitely comfort food. Warm, satisfying, and not overpowering. Reading it makes me want to curl up in a cosy corner with a good Book and a cup of hot chocolate, shutting the world out and enjoying my own company. But it also makes me want to throw my house open to all my friends, clear out the deepest darkest must cluttered and chaotic cupboards, visit my Grandmother, and finish up that lurking craft project. Lucy reminds me to Be Present wherever I am; to take notice of the world around me - the people in it, the beauty of the heavens, and the presence of the Maker.

I review for BookSneeze®
Tia


Disclosure of Material Connection: I received this book free from the publisher through the BookSneeze®.com <http://BookSneeze®.com> book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own.

Wednesday, 19 September 2012

Let's hear it for the nurses!

There's been a lot of bad press about nurses and nursing lately. It seems many people have tales to tell of inconsideration, neglect, rudeness, ignorance, and so on. I've not been backwards in coming forwards to talk about mistakes which have been made, but I thought maybe it was time to talk about some of the outstandingly good experiences we've had too.

I'm thinking about the first school nurse we had. Incredible to me now that I was willing to allow Miss Mog to start school aged just two. Still crying much of the time, still unable to tolerate being in her wheelchair for more than a few minutes, seizures, bottle feeding and seizures and refluxy vomiting.

Sue came out to to meet us at home before Mog started school. Together, we worked out a routine which we thought might work for us. A timetable for a child who wouldn't be timetabled, a nursing care plan for a child who at the time had no effective communication other than screaming or throwing up. And somehow, she gave me the confidence I needed to send Mog in.

True, we'd been joining in with swimming lessons, and physio groups, and so it wasn't a totally strange environment. But we were so entangled, Mog and I; she came where I went, and I stayed where she went. So to leave her in school, even if just for a couple of hours at a time, was a very big thing. And Sue made it seem as if it would all be OK.

Was it Sue or the next school nurse who got to deal with tube city, when Mog and one of her nursery friends decided both at the same time that drinking was for wimps, and turned up at school within a week or so of each other with nasogastric tubes? Mog kept hers clipped into her hair ribbons, her friend wore his clipped to his glasses. And the school nurse (and nursery class staff) kept each other sane. Our current school  nurse has continued the tradition. We like to keep her on her toes; Mog tends to add new medical complications or treatments over the school holidays, and ideally she times these in order to force our school nurse to redo all the training she's just spend the first day of term sorting.


We met our current community children's nurse shortly after Mog's NG tube had been swapped for a PEG. I think it's reasonable to say that all of us had difficulty in adjusting to Mog's fundoplication - this surgery removed her ability to vomit which was excellent, but also took away her ability to burp. We're used to that now; burping through a tube takes seconds. But Mog confused the medics for a while. When Mog needs to burp, she starts coughing and pouring saliva. Now the natural thing to do when you see a child apparently drowning is to sit them up straight. Unfortunately, to burp Mog most effectively, she needs to lie down flat.

Our CCN at the time was handing over to our new CCN, and introducing her to our family. Miss Mog was propped at one end of the settee, and we had just had a conversation about her burpring problems. I could see the new CCN's eyes taking on a certain "yes dear" expression as I attempted to explain the bits which made no sense to anyone other than Mog. And then Mog started choking, and gave us a proper demonstration. We showed what happens if you do the things we were supposed to be trying (i.e. not a lot, except she gets worse). And then I flipped her on her back, popped a syringe on the end of the PEG, and stood well back. It was a particularly impressive burp; the splashmarks are still on the wall eight years later. And that's why the book cases are where they are.

And to her lasting credit, our new CCN took on what we were saying instantly, and has been one of our strongest advocates ever since. Equipment supplies? She's our woman. Sounding board for new complications? She's our woman. Trying to unpick what might be going on, working out who to contact and in what order? That'll be our CCN. Visiting in hospital, sorting out discharges as soon as possible, training myself and others on whatever new thing we need to be doing, going into tLP's school to make them fully aware of all her needs? That's her.

I know I can leave a message and she'll get back to me as soon as possible. I know that she might not have all the answers, but that she will know where to go to get them. I know that she knows what's possible as well as what's ideal, and  I know that she can keep me grounded in reality when necessary!

She has taken on a lead role in our multidisciplinary meetings, and I love that she does not confine herself to what others may think of as the nursing role. She understands as well as we do that the girls' complex health needs permeate the whole of their lives, and so she is there too, when necessary. tLP started at Brownies, and I was able to leave her straight away, because one of the Brownie Guiders had already been trained up by M.

She does her best to simplify our complicated lives; for example checking up on test results and then arranging for our GP to prescribe the necessary antibiotics, cutting out as many steps as possible in the dance we otherwise take from believing something is wrong to having the means to treat it.


And then there's K, the Nurse Consultant at Helen House. K has brought hospice care out of Helen House and into our own homes. When Mog was poorly, and I couldn't get her off CPAP one morning, it was was K who was on the phone and able to do a home visit. K with her stethoscope has visited regularly during illnesses, listening to chests and listening to me, spending the time I need to sort out what's going on and what I need.

K has come with us to extremely challenging hospital appointments, and helped out by asking the questions I would forget to ask, asking her own questions coming from her own greater understanding of the procedures involved, and crucially, remembering the answers for me once we've left. She's visited in hospital when things have been going well, and visited when things haven't been going well.

K and Dr E have together found solutions for Mog which involve keeping her out of hospital. From detailed plans for the future, to provision of home oxygen, to Mog's newest medication - buccal buscopan - she's been able to put her palliative care expertise to work, looking at managing symptoms and improving the quality of both girls' lives. Which always improves my own life too. So many of our doctors are looking at longer term outcomes. K and the Helen House team look at making today better, and that's led to a big increase in Mog's quality of life.

K it was who arranged for tLP to go into Helen House for symptom control at a point when we were waiting for neurosurgery, and K it is who, together with M, arranged for Mog to be kept safe and well during tLP's recent surgeries. 

And we mustn't forget our respite nurses who give me three hours' sanity time in the middle of the school holidays, when the girls are ill or have had surgery. Our specialist nurses who keep bladders and bowels and other unglamourous bits and pieces functioning. The ward nurses who have managed little kindnesses like sourcing hot drinks in the middle of the night on a ward which bans them, who have known what to say as the doors close on leaving the anaesthetic room, who have remembered siblings and made a fuss of them during visits, and who have prepared themselves for difficult tasks by collaring the play workers.

So let's hear it for our nurses!

Tia

And a final sentence typed by the Little Princess herself:
I thingk re ns re good.

Tuesday, 18 September 2012

Blackberrying.

There's something about Autumn which brings out the dormant domesticity in me. After a summer of shoving stuff here and there and settling for satisfaction when the piles aren't higher than my head, the girls go back to school, and the sharp September sun shows all the dust and detritus.

I suppose the sensible and truly domesticated woman would take advantage of that sharpened sight, and get tidying. Well, I did, for a while. But between starting this post a few days ago and basking smugly in the newly clean and polished sitting room and kitchen, reality rudely reintruded, and now the house is more or less back to looking well lived in. But that's ok; we do live here, after all.

And anyway, this weekend we just had to get going on a more interesting and definitely domestic job; rumour had it the blackberries were ripe. And ripe blackberries wait for no woman.

Memories of childhood, empty ice cream cartons, a field with nosy horses in it, and endless brambles, twice as high as my head. Sweet juicy berries, staining fingers and clothes and lips a rich deep purple. And then a kitchen with jams bubbling in the preserving pan, and the promise of blackberry and apple crumbles, sponges and pies in the months ahead.

It's a little bit more complicated these days. Heavy traffic on our previous roadside stops; dangers and probably polluted. And the fields with their horses and cows all accessible only by wishing gate or stile, which is to say, not accessible for our family as it stands.

We headed for Jarn Mound. Many brambles, most accompanied by stealth nettles, but very few ripe berries. Still, by picking diligently, we were able to keep more in tLP's bucket than she was able to eat; retreating to the car after an hour with enough for a couple of crumbles if nothing else.

And then, honour satisfied and memories built, the girls and dropped the grandparents off at The Spot (Field at the top of Sunningwell for locals interested!), and drove slowly from the top of the field through Villages and winding roads to the Village Hall at the bottom of the field. And there we found the mother lode. Branch after branch, bursting with berries, at a height lockable from wheelchair or on foot, no need to shinny up fences or bend double. And by the time Mum and Dad had picked over the top field, we'd very nearly filled our own bucket again.

So hurrah, a freezer full of blackberries. Top tip: when freezing blackberries, spread them out in a single layer on baking trays, freeze them like that then put them in a freezer bag. They stay frozen singly rather than all clumping together, and I can now shake them out half a dozen at a time for smoothies if I wish. Perhaps I'm the last women in the western world not to know this tip. But in case I'm not, and on the off chance the one remaining didn't-know-that woman is reading this, I offer a further top tip. Before carefully and lovingly spreading out the blackberries in a single layer on your baking trays, check that the trays you are using will fit in your freezer. Thank you.

So, the house is dusty and cluttered once more, but motivation is somewhat lacking as it is about to be torn apart in order to give us a functioning boiler once more. Hot water and heating are kind of useful these days. There are tufts of wool lying around because I've finally finished Great Grannie's birthday present. There may be the odd gingery clump of dough in a corner somewhere, from where tLP made off with the remains of the gingersnaps. But for today I'm looking at the memories and the coziness, not the lack of polish. I hope the girls are too.



Monday, 17 September 2012

New Whine

We're New Winers. From our first visit, with my most favouretest ever photos of tLP, to the disappointment when chicken pox cancelled our attendance the following year, to scarily awesome excellence in 2010, to sunshine and more conversations, I've always left with a very clear sense of direction, something big or small (and often unblogged-about, but knowing what I needed to be doing next and where Gad was in all of this. Hurrah.

Until this year.  Now, please don't misunderstand. New Wine was great. Despite crying and pleading to be allowed not to go (and then making a total nuisance of herself the one time we listened and let her come to the grown up meeting instead of going to her age group), the Little Princess says that Ground Breakers was the Very Best Thing. Mog opted out of Our Place (special needs group) and Rock Solid (age group) both, and chose to come with us. I don't think the fact her princely friend came along too had anything to do with that decision. But I couldn't swear to it.

And God was there and it was all good. Awesome. There aren't many times in life you can be sitting in a giant tent and watch a church friend come to the front, because God has healed his knees, and the stiffness and immobility he had following surgery a few years ago has gone. And then come back to the front a few minutes later, because not do the knees now work properly, even the scars have disappeared! Fantastic stuff. God is great.

Except.

At that same meeting, Mog was sitting on my lap. And as the speaker was praying for tendons, muscles, sinews, her arm, which is usually stuck fast up here
 relaxed beautifully and brought itself down into her lap.
Not a position where it will voluntarily move to; somewhere we can sometimes move it to when she is stoned to the wide on vast doses of diazepam extremely relaxed, but where as soon as we release it, it will ping back up to shoulder height.

This arm bothers Mog. Being in a wheelchair doesn't. Not being able to talk doesn't seem to, as long as she can get her point across with her Talking Book or adroit questioning. Seizures, except the painful ones, don't worry her. But having an arm which sticks out and gets banged on doorways and knocked against lampposts, and pulls on her shoulder and drags her body over, that bothers her.

When we've met surgeons, Mog has been pretty clear that she does not want to do anything about her back. Yes, it's twisting. But no, she doesn't want surgery to stop it twisting more. Which is a relief, because I don't want her to have that surgery either. But meeting the surgeon who has a special interest in arms, Mog was so clearly able to get her wishes put across that the surgeon stopped talking to me altogether and dressed herself entirely to Mog. Who responded, very clearly, that she wants something done about her arm.

We've had investigations. And, despite having said she'd never have another anaesthetic after her hip surgery five years ago, we've agreed to her having botox into her shoulder, in an attempt to loosen the arm and allow it to be brought forwards. A less radical option than cutting the bone in half, rotating it 180 degrees and pinning it back together agai; potentially not a long term solution, but at the very least worth a try to see if we can get the results we want.

So when we sat in the meeting place, and Mog's arm came down and relaxed, I thought that was an answer to Mog's prayer. Wonderful stuff. Very exciting. No need for surgery, a good solution to the thing about Mog's disabilities which bothers her the most.

And then we woke up in the morning, and Mog's arm had boinged back up to its previous position.

And there it sits.

And I don't know what to make of that. True; it's looser than it was. We can get it back to that midline position sometimes. And that's encouraging as far as the botox is concerned. I hope that means that when she does have the botox, she will cope with having it strapped down against her body as the botox takes effect, and that there will be fewer body spasms as a result.

But still. I'm very happy for our friend with his knees. I know he'll make hugely good use of them in all he does for God. But but but...

It doesn't make sense to me, I don't understand it, and I suppose that's another demonstration of how much bigger God is than I am. It does seem very unfair though - and I know Mog still wants prayers for her arm, although I think now we're praying that the botox goes smoothly and is surprisingly effective. It's difficult asking for prayers for Mog. People see her wanting prayer, and jump in enthusiastically to prayer her out of that wheelchair, or to heal her whole body. And she's never said that's what she wants. They don't always listen first. 

For me, I know that as she sat on my lap, she snuggled in. For a few brief moments, her whole body relaxed. Not as it does after much medication for seizures, but just as if she were any other child snuggling in for a cuddle. Her body doesn't do that. It's either medicated into floppiness, or there's a stiff resistance from her spastic muscles and contractures. I love cuddling Mog, but hers is a one-way hug. Sit her the other way around and her body leans out, not in. And selfishly, I'd love to experience that again. I'd love to see Mog not being slammed back against her chair with involuntary muscle spasms and seizures, just sitting, relaxed, and able to control things for herself a little more.

I'd like to wrap it up with a nice neat solution or a gently positive bon mot. But I don't really have one. It doesn't feel fair; I'm sad for her. I'm trusting God, of course I am, but I'd like to see the bigger picture. Why show us something and take it away? Was it real? Enough people saw it that I'm confident it was. But then, why so temporary? And other questions.

Tia

Sunday, 16 September 2012

I need a holiday.

We're off to Florida for half term. Very exciting. We booked the holiday in the Spring, paid up, and then had the momentary panic in case our passports had all expired. But they haven't. And for most of us, that, plus the travel insurance, would probably have been it. And here follows one of the less obvious reasons why being a disabled family is so exhausting.

I mentioned travel insurance. Did I mention the fact that the travel insurance for the three of us for the week is costing us approximately the same amount as one adult return plane ticket? Gulp, pay, and be thankful for DLA. But setting aside the more-than-a-thousand-pounds cost, it also took me over an hour on the phone to make sure all the pre-existing conditions were covered. Whereas had it been just me, I could have simply ticked the "do you wish to add travel insurance for your holiday at a cost of £17" box on the travel agent's website.

Actually, if it comes to that, I could simply have booked the entire holiday on the website, rather than having to phone the travel agent to ensure they recorded the fact that both girls are disabled and will need extra help on the plane, and that we will need an accessible hotel room. Which I may as well have done anyway, since I then had to contact the airline myself and warn them.

I'm glad I did; the airline has two different travel chairs which will make the girls' journeys much more comfortable than in the past. And they have a means (not the most dignified, but a lot better than nothing) by which we can change the girls mid-flight if necessary. And they will give us extra baggage allowance to carry the medical supplies. Etcetera.

The airline sent out some forms for me to fill in; I filed them somewhere safe, knowing that I would need to sort them nearer to our travel time. No point whatsoever if filling out detailed medical needs forms when medical needs change so often.

Now, this airlines is definitely better than the others we've used. They do have the travel chairs. They have the toiletting needs more or less sorted. They are willing to provide oxygen for Miss Mog, just in case she needs it, for no charge (other airlines charge quite a lot for that). they seem a lot more clued up than other alines we've used, and I'm thankful for that.

But with this organisation comes paperwork. Much paperwork. And with the girls going back to school, I knew the time was finally right to sit down and sort through this paperwork. Which, naturally, I couldn't find. Time to contact the airline again. Oh, and to mention the fact we would need to bring needles onto the plane for one of our more complicated and newer medications.

No problem, just more forms to fill in.

So I sat down and started to fill out forms. Forms which required the dimensions of the girls' wheelchairs. Fiddly, but if it means they get transported more safely, great. Forms asking how to dismantle the chairs and reassemble them, how to take the power chair out of gear and disable the motor for safe transport, and where to hold it safely when moving it. Great. Two copies, both to be carried with us. Best not lose those then.

Next form. tLP's own dimensions, to ensure the travel chair would be suitable for her. It will be, phew.

Next form. Medical forms, page one to be filled out by myself, page two to be filled out by our long-suffering GP. It is at this point the frustrations begin to hit. I phone the surgery, they tell me to drop the forms off and let the GP fill them out. I ask for an appointment. They say the GP can fill them out and call me if there are any queries. I point out the form requires blood pressure readings, something which it is not possible to acquire over the phone, they repeat, word for word but slightly more slowly, the fact that I must drop them off and the GP will call me. This conversation repeats until I realise that there will be no deviation from the script, and I hang up, wondering what amazing new blood pressure monitoring device the surgery has gained, which can take a reading over the phone. I drop the forms off. Oddly enough, the GP phones me a couple of hours later, requesting the girls' blood pressures...

And here's the thing. These forms have now taken me a good three hours, including time spent getting the printer to work and faffing on the phone. Asking the GP to confirm that the girls will be able to sit upright for take off and landing (reasonable question), whether they will need ambulances on standby (again, I suppose, reasonable question), hoping the GP agrees that their prognosis during the flights is good (she's put Stable; I guess that's good enough), asking for a set of vital signs (not sure why needed, but, BP aside, I may now take another round on board for comparison purposes. 8 hours is a long time). And then asking the GP if the girls' conditions are likely to cause distress to other passengers. And I take issue with this. Not issue enough to stop us from flying, but why and how is this relevant? Who decides what might cause distress? It would cause me great distress to be seated next to someone who got themselves obnoxiously drunk having first eaten vast quantities of flatulence-inducing foods. But they don't need a GP to warn the plane this might be a problem. I'd find it reasonably distressing to be sitting in front of a travel sick toddler, but again, no specific permission needed for them to fly. I know I find it infuriating to be sitting in front of a child with kicky legs, especially when combined with instant reclinomatic man in front of me, giving me the choice of counting reclinoman's dandruff flakes or having grubby grabby hands around my ears on a repeated basis. And being the loving kindly caring Christian woman that I am, should I find myself in this position again, I shall simply grit my teeth and mutter, and apparently still be bitter four and a half years later. I'm good that way.

Still, forms filled in and returned. Make, model and serial number of suction pump tracked down and emailed, together with make and model of ventilator battery, further information on wheelchair batteries, and supplementary letter requesting permission for large volumes of medication to be carried on board received and left in handbag to be covered in fluff filed safely. Oxygen on flight form filled out.

Wheelchair accessible shuttle to hotel booked (though not for return journey - must remember to sort that too). Hotel contacted to talk about medical equipment hire; hotel have not been informed that the girls are wheelchair users, and now have no fully accessible rooms left. Thanks, travel agent. Various Floridian oxygen supply firms contacted, one has got back to me. But not yet shared information as to what format the presciption request must take, although they have informed me I must have one. Three phone calls to Orlando so far. More hours spent searching for alternative suppliers, including one which might supply both oxygen and a toilet/shower chair at the same time; is this really such an outlandish request?

Attempts made to sort accessible transport to Disney. More requests for more information about the suction pump. Hotel in Gatwick booked; must organise transport to airport from hotel. Additional luggage allowance sorted again. High visibility luggage fixed. Feeling relatively complacent - how many people will be travelling with pink and purple flowery bags, as chosen by a seven year old? Conversation with Mum, recently returned from Dubrovnik. Apparently many travellers have identical cases. Less complacence, add "high visibility luggage labels" to list of things required.

Conversation with respiratory nurse. Ancient CPAP most likely not compatible with US voltage. New CPAP (which was requested a long time ago; this has been a loan unit for over 2 years now, and funding has still not been agreed for her own device) would have worked just fine. Nebuliser we know won't work over the pond; nurse comes up with a solution. Oh, we have a CPAP solution too, but we wouldn't have needed to find a solution had we got the right equipment in the first place. 

By now, two full school days plus a couple of evenings spent trying to get a grip on holiday stuff. Still to do - sort equipment supplier, and decide whether we can manage without a toilet for the week, or whether we should bring the collapsible one with us. If we're going for the hiring option, should we look at a bed and hoist at the same time, or is this going to complicate matters and fill the hotel room for minimal gain? Can we squeeze our portable changing bench (massage table) into our luggage allowance, and is it worth it? Answer: yes, if at all possible; makes a huge difference.

And then, because life is never all about one thing at any one point in time, add the need for a new boiler. Which is now scheduled to be installed later this week. Which means moving this bookcase
 
as well as losing the cupboard where I store all my plates and cups, and just as a fun little side project, ensuring free access to every single radiator in the house. Which will mean moving all the beds. The largest of which has not been moved since the new flooring went down, five years ago. Marvellous.

So I guess what I'm trying to say, in a very long winded and mostly self-pitying way (congratulations if you've read this far), is, I really need a holiday. Forty sleeps and counting.
Tia

Friday, 14 September 2012

Happiness is...

Beating the stuffing out of your friend.

Why all the pictures of Miss Mog with her handsome prince and so few with other friends? Because, despite the ridiculously long distances involved, despite the fact it's sometimes six months between visits, and despite the fact we don't really support ongoing contact between visits (videos are OK, but when both of you are largely non-verbal and one of you is blind, meaningful contact is a little tricky), these two are very very close.

We have other friends come to visit. Mog has friends at school. But when these two are together, they agitate until we find a space for them to be together. Physical contact. Miss Mog has a bite reflex. Put something in her mouth, she'll bite it. Spoon, toothbrush, finger, she's not particularly fussy. But if her prince manages to get his hand up to her face, she manages to contain that and lick him instead. She doesn't lick anyone else. My bruised fingers are envious. The rest of me is mentally counting up the weeks until we might manage to meet up again. It's a good job his mother and I are friends too!

Tia

Thursday, 13 September 2012

I wish...

There's a lot of wishing going on around here at the moment. "I wish I could walk." "I wish I could ride a bike." "I wish I could have a hundred brothers and sisters." "I wish I could have a watch." "I wish I could stay up and not have to go to bed." "I wish I didn't have to have all these tubes when I sleep." "I wish Benjamin would stop jumping on my bed."

Realistic wishes, fantasy wishes, and I'm starting to think that possibly some bargaining down type wishes - "I know I can't walk and I can't ride a bike so maybe I should be allowed to live off fish and chips and buy whatever I want. Cue one very disappointed little wisher.

 But not for long:

 Mary Poppins lives on!

Meanwhile though, tLP is about to get one of her wishes. Or at least, the chance of having one of her wishes fulfilled has been thrown firmly back on herself.

She wishes she didn't have to sleep with so many tubes. The Nippy (ventilator) is non-negotiable. Not that she wants to negotiate it; not breathing is much less fun than having a machine breathe for you when you're asleep. She'd wear it most of the day if we let her - apparently it's just so tiring, having to breathe for yourself. Poor overworked princess.

But she also currently sleeps with one tube going in, pumping dilute cranberry juice or squash into her stomach all night. And one tube coming out, draining her bladder all night long.

Historically, tLP has had a very small bladder, and overnight drainage has been the only alternative to swimmingly drenched beds every night. Once we started draining her overnight, the most logical way of helping her stay dry during the day was to limit her fluids between catheters, and instead flood her in her sleep. Pre-surgery, we managed to get her dry some of the time, and leaking-but-containable-in-a-very-absorbent-pad most of the rest of the time doing this.

And then she had surgery, and the bladder which used to hold 27mls, which grew to 250mls with oxybutinin, began to hold 400mls. And she went from not-needing-to-change-clothes-more-than-once-or-twice-a-day-dryish-as-long-as-the-pad-didn't-slip to able-to-tell-when-she-needed-a-wee. Which means that instead of cathing to a clock and hoping for the best, we are now reminding her that she might need to think about it, but mostly going with the flow (or hopefully just before the flow!). And which means that instead of limiting her liquid intake during the day, she's now free to drink as much as she likes. But, she doesn't like to drink much, because she still gets that litre overnight.

We had an appointment yesterday. And discussed all this. And now it's very much up to her. If she can drink 1500mls during the day, then she won't need extra fluids overnight. One tube gone. First step. First attempt, last night.

Second step: if she can drink 1500mls before the end of the school day, and then not drink very much at all in the afternoon/evening, and if as a result of that, we can get her measured overnight output down to less than 300mls on a regular basis, we can lose the overnight drainage bag too. Two tubes gone. This we hope to manage within a month or so, which gives me a month to record her output. Weighing bags of stale urine not my favourite activity, but better than some.

Third step - and this is a longer term goal - if she can actually drink that 1500mls, rather than pushing it through her tube, and if she can swallow her medicines rather than pushing them through her tube, and if as a result of not having an overnight tube feed, she can get enough of a morning appetite to actually want to eat her breakfast rather than having it through her tube; if she can manage all these things, then we can look at the possibility of losing her gastrostomy altogether. That one we'll put off until after she's had her spinal surgery (no date yet), but the possibility is out there.

And the best thing? This is all entirely up to the Little Princess herself. I am perfectly happy to keep plugging her in (well ok, I'm not, it's a pain. But she doesn't know that). No one is going to force her to drink, no one is going to force her to take her medication by mouth. It's her choice whether she wants porridge or pureed porridge, cereal orally or cereal tubily. But if she wants to lose her tubes, she has to take responsibility for proving she can manage without them. If she chooses not to, there are no long term health consequences; she just carries on tubing it. And this works even on a daily basis - one day of not drinking = one night with an overnight feed. Natural consequences. I love it. So often we can't allow tLP to experience the consequences of her decisions, because the health implications are too serious. But with this wish, she gets to be her own fairy godmother, and I'm all for that.

Tia

Wednesday, 12 September 2012

Extreme Parenting

 Families of children and young adults with disabilities were asked what they might have told themselves on the day their child was diagnosed. This is what they said.




I was sent this link and it's just too good not to share.
Tia

Wednesday, 5 September 2012

Reader Question

Claire says "A 7 year old asked me "Why are all the children on Mr Tumble sick?"

I wasn't really sure what to say but said "They aren't sick, some children take longer to learn things, find it hard to talk,or can't hear,sometimes they talk with their hands." Then we talked about the signs we knew and practised them.

Any other ideas?"

And I thought "hmm, not blogged properly for a while, got lots of things I ought to be blogging and lots of reasons why I haven't, but I can at least give our perspective on that."

And then I looked at Claire's answer, and decided I probably couldn't improve on that anyway - a pretty perfect response!

So then I thought I'd ramble on a bit instead, and maybe something sensible might sift itself to the surface.

My girls aren't sick. Except that of course Mog is quite often pretty sick. But even when they're well, they are still disabled. Still have special needs, are still multiply impaired. Pick your own term. We live in the UK, so that won't be handicapped; acceptable in the USA but not here. It also won't be retarded.

A few weeks ago, the Little Princess surprised me by saying something I've never heard her say before. "I can't do that, I'm disabled." It surprised me, not because I don't think she sees herself as disabled, not because we don't use the word disabled, but because I've never heard her use it as an excuse before. As it happens, she was trying to use it as an excuse to avoid doing something she is perfectly capable of doing (taking something through to another room for me), so my instant response was "there's nothing wrong with your hands, pick it up."

She's struggling at the moment. Bedtimes and safely strapped into the bus when I'm busy driving times and heading out of the door when it's too late for a proper conversation times, she drops in a wistful "I wish I could walk." Or "I wish I didn't have to have all these tubes and could roll over at night." And occasionally an "It's not fair." And then at other times I'll here her muttering to herself as she tries to sort things out. "Mog can't do that, acos she is disabled. Her arms don't work so she is in a wheelchair. But I am disabled. But I can do that." She is not like Miss Mog, and Mog's friends. And she is not like her schoolfriends and Brownies either.

We have a wonderful world of Special Kids friends; where else can you go camping and have enough children with additional needs gathered together to need heats for the Wobbly Walkers race, and to need to expand the width of the race track for the Power Chair Users race? Where else will you find four children playing together, and have the fourth come running back to her parents begging to borrow her sister's spare wheelchair because she's the only one without a chair to roam around in? If it comes to that, where else will you find six families in a row all running blenders to liquidise meals for their tube fed children, several dozen siblings all accustomed to ignoring the seizures and getting on with their own lives whilst parents are otherwise occupied, and where else would an epic lego zombie castle/ princess palace have its own hospital wing?

For a few days, the Little Princess disappeared off to the far corners of the field with friends who didn't need the lengthy explanations. Just as she never questioned why one of her friends only has one leg, so she never questioned why another still had a nose tube - just showed off her own belly piercings (thus worrying the child who is waiting for a gastrostomy and now needs reassuring that she will only have one tummy hole not three!).

Coming home was softened by repeat visits from friends, birthday parties, and a whirl of Special Kids social stuff. When your friends, and your friends' siblings, have special needs, you don't have to keep up the front. You can be yourself, and they don't mind if you completely miss the point - chances are they'll be completely oblivious to your own point too, but you'll still enjoy playing together, because it's nice just to be together.

And then we went back to church, and her friend who runs across playgrounds to be with her wouldn't sit next to her on the carpet. and instead she was surrounded by small children fascinated with the flashing lights and beeping buttons on her powerchair. and I realised it's not just what special kids friends do do - accept, accommodate, adapt and just appreciate each other - it's what they don't do - get fazed by meltdowns or seizures of anything suddenly odd. Press buttons or attempt to drive each other's chairs (unless they happen to be trying them out). Ask the "whys" loudly, and to a third party rather than directly. And stare (unless it's a parent trying to work out what make of wheelchair it might be, or what exactly is different about that particular headrest, etc.). 

And then I walked her into school for the first day of term, and for the first time ever, she wasn't mobbed by her classmates, but ignored as she shuffled into line. And I'm told she had a good day, but she also tells me she's very poorly and shouldn't go back. but then that friend who wouldn't sit with her at church ran right across the playground screeeching loudly so they could both dance together at the end of the school day, and maybe it is alright after all? And then it's bedtime again, and  "I wish I could jump."

Cool chairs are fantastic when you're with a field full of other people with differently cool chairs. And little zippy eBay bargain chairs are fantastic for nipping in out out of church and racing around the forecourt. But then the game turns into "everybody get up high where tLP can't reach you." Or "you can't pass here until you know the magic password." And school stuff starts to include competitive games, and Brownies means sitting on the floor, and although you get lifted out onto the floor and not excluded, still, you're the only one who needs lifting. and when your mother has made a mistake, and your Brownie trousers are 4 sizes too big, then crawling on the floor really isn't a great idea.

And then when you're at home, and school, and everywhere, you're being told you need to be more independent. You need to be doing your own catheters, filling your own intestines with warm water until they are so full you feel like they're going to burst, at which point they finally condescend to release their hold on everything inside them, shuffling your own assortment of night tubes so you can roll yourself over at night.But you know other children your age don't have to do any of that, and you know your big sister doesn't have to do anything at all for herself. And she can't, because she's disabled. So why do you have to, because you're disabled too, aren't you?

The world can be a very confusing place. There's the big wide world, where everything is harder for you than for anyone else. And where your mother embarrasses you because every time someone says "oh I wish I had a wheelchair like that" she replies "She wishes she had your legs, want to swap?" And sometimes she embarrasses you by singing and dancing in the street, because she thinks it's funny to watch you get all embarrassed and zoom away.

And then there's the nice safe Special Kids world, which is also the ROSY world, and the Helen House world, where there are lots and lots of Mogs, and a few tLPs, and where things are safe and easy full of understanding. And where your mother embarrasses you by singing or holding your hand and swinging it, because some things are universal, and seven year olds should be embarrassed by their mothers.

It's been a Special Kids summer. And that's been fantastic. But now we have to walk (or roll) back into the real world, and that's difficult. She's gained another label over the holidays; doesn't change who she is at all but is another indication of how things may get harder for her as she gets older, how the gap between her and her classmates is likely to widen. And just for today, although this isn't why I started writing this, I'd like to join her in saying it isn't fair.

It isn't fair that she can't walk and jump and run and do all the other things her classmates take for granted. It isn't fair that we don't go to the park very often because I struggle to lift her onto the swings and slides, and because even when I do, she still can't manage the obstacle courses. It isn't fair that she can't use trampolines and bouncy castles or go horse riding or do lots of other things most children even with her level of physical disability can manage and enjoy. And it's definitely not fair that on top of that she struggles with learning and retaining information, and that even if she gets invited to friend's houses (once in 3 years of school), she still can't e.g. play with balloons at birthday parties. And she can't travel with her friends on school trips because the bus isn't accessible. And it's not fair having to sit in hospital waiting rooms when your friends are sitting in the classroom or zipping around the playground. And it's not fair that so many things hurt so much of the time. And today she's at school, and she isn't here, so I don't have to be all jolly and upbeat and point her to all the things she can do, nor do I have to work out where the line is drawn between empathising and being overly sympathetic and poor poor you to her, nor yet do I have to find new ways of embarrassing her to distract her out of it. I can just sit quietly and stamp my own foot and say very loudly It's NOT FAIR.

My heart hurts. She's beautiful. She's amazing. She drives her chairs plural with phenomenal competence and can squeeze them through gaps I wouldn't dare to try. Unless we're at home, as my walls and doors will testify. She can do so much more than the doctors ever thought she'd manage. She's kind and caring and determined, gentle and strong and funny. She can make cakes and  scramble eggs and feed herself and her sister, as long as someone can pop the syringe apart and click it back together again for her. And she puts on an amazing front, and it fools a lot of the people a lot of the time. But more and more she's spotting the differences, weighing them up, and deciding that she comes out on bottom. And I want to go back and live in Special Kids world, where she doesn't have to put that front on; where it's ok to ache, and where friends are just as achey. Where powerchair top speed really is top speed, and where it's totally acceptable to give your friend in the manual chair a push, and where you can play tig as equals, or turn the field into a stage and put on a play, never mind the fact that the prince doesn't want to kiss anyone, and that tLP has no idea what her part might be but is taking huge pleasure in bellowing "OK backstage everyone, now please" at intervals, and where friends just incorporate that into the drama.

But, we're not, and life goes on. And so we get to live in this world, where children tell their parents ""that girl is dying" when they look at Miss Mog; where tLP's new toilet at school turns out still to be the men's loo, as unavoidable delays (genuinely unavoidable; not the fault of the school nor the LEA) mean work won't now start until October half term. Where administrative errors (somehow Mog's address has been changed on the hospital system) which should be simple to fix ("this is her address, not that") are apparently unfixable unless Mog herself writes a letter to the hospital requesting it.

It's not all bad. I can, of course, find many many good things about most of the things which are happening. But, just for now, the house is empty, I'm taking a break from the 3987345987234 administrative things which have piled up over the summer, and I want to sit and wallow in all the "It's not fairs" I don't allow my daughter to wallow in. Which is in itself, Not Fair. But as she doesn't know about it, hopefully it's still OK.

Oh - and back to the original question - Claire, I wish you could be a round all the seven year olds we encounter because that's a pretty perfect response I think. Anyone got anything else they'd like me to ignore more or less completely whilst rambling on about something else comment on?

Tia

No photos here; I took very few this summer, and others took lovely ones and said they'd email them (you all know who you are; please please, pretty please? And with a yay or nay for inclusion here).

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