Mary

As tLP went back to school and prepared herself for the Big Event yesterday, Miss Mog had her own excitement. A reprisal of an earlier role, but then she does look rather dashing in blue, I think.

 

She was in respite the night before, and much consultation had happened between the various authorities as to the necessity of having her in school by 9.30 rather than her usual 10AM. Despite this, her transport did not turn up at respite until 9.26. The show started at 10 as planned, and those of us aware of her absence scanned the programme anxiously, willing other classes to move slowly, hoping the comperes would drop notes and slow things down.

They didn't. The school choir made a joyful noise (and will be featured on local radio on Saturday morning. The sixth form narrators read with enthusiasm, and the classes paraded on and off stage to sing and dance and play their instruments and wave to parents. Beautiful.

Despite the lack of hiccups, Mog did just squeak into the hall in time to join her class, who were singing the Calypso Carol. Phew! I think that's what they sang last time she was Mary, back in the nursery. The wise man that time has since transferred schools, as has the angel. The shepherd is no longer in Mog's class, so she had a new backing group (their parents may choose to see their roles slightly differently) this time. I made Mog's costume from a pillowcase last time; can she ever have been that small?

This time, as the grand finale, nearly all the pupils were able to crowd onto the stage to sing their final song and wave their last "Hello Mummy" waves. So nice to see everyone together, from the tiniest wobbly dot in the nursery to the very elegant and sophisticated sixth formers (who then served tea and coffee and fleeced us sold us the fruits of their labour over at the Propeller Project.

It takes a lot of work to put on a school performance. It takes even more work to put on a performance which is meaningful to all the pupils involved, including those who don't manage well with crowds, who cannot sit still, or who can do very little other than sit very still. To create a show where every single pupil's input was valued and appreciated was very very special. Some pupils had recorded their input earlier to reduce the overstimulation, some had clearly practiced very hard, and others brought some beautiful inprovisation. All clearly enjoyed themselves, as did the audience. Well done!

Tia

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

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

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.

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

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).

Totally Unsolicited Product Review

Summertime means camping time, and an unfortunate run of dates means we're going to be camping for nearly three weeks straight. We've lugged a paddling pool around with us in the past to get the girls clean, but there's little dignity in that for a fairly womanly ten year old, so I've been looking for alternatives. And came across these No Rinse Shower Caps.

The instructions say to microwave them for 20 seconds before use, but although we're taking the 'fridge and blender, I think microwave takes us just one small step beyond any hope of considering ourselves as proper campers. Especially if the only use for it would be to heat up shower camps to give a child a warm shampoo.

So, I thought it ought to be tried out cold, before inflicting it on Miss Mog in the middle of a field. 

It's a large cap and full of foamy shampoo; you can't see it escaping from the back and dripping down my neck. Plenty of space for longish hair, which is handy, as the demo photos on the sales site are of a man with man-short hair and an old lady with old-lady perm. Neither of which is either myself or Miss Mog. Or tLP actually; I suppose we might have to pin her down at some point too and get her properly clean. Advance apologies to future fellow campers.

 Definitely enough to get some rather wet hair. And apparently distort my face - possibly beyond all recognition, which would be ok by me.

 Plenty of suds left once the hair well and truly soaked and lathered, so as I was filling out the second half of the instructions ("towel dry to remove all grime and grease"), I thought I'd soak my feet.

 If it cleans hair as well as it cleans toes that have been walking up the garden path without shoes, then hair will be well and truly cleaned.

And it would seem to!

Why post a series of photos of my own hair in various degrees of wetness? Mainly because this blog turns out to be my "go to" place when I know I've put something somewhere but can't find it. So now I have the link to the caps, and I can remind my future self that the unused caps are in that greyish bag towards the foot of my bed; don't throw it away.

Tia

Bunting and Bacon Butties

 What possible reason could so many people have to be up and on the streets at 7AM on a school morning?

 Police out in force. Ignore the nicely polished children in front; they and their parents seemed incapable of understanding "Please don't stand in front of my girls; they can't see anything when you do"

 Floats, bicycles, strangely coloured cars, and slow moving buses with just one or two passengers.

 Recently repatriated and reasonably strange themselves.

 Aha!

Don't blink; you'll miss it. Up at an unfeasibly early hour, stand around in the light drizzle (so refreshing), be fleeced for a couple of pounds for an annoyingly shrill whistle, and join in the jubilation and celebration as the Olympic Flame passes through Our Town.

It is there, in that photo. Under the traffic lights. Friend in pink valiantly attempting to hold back the hordes who decided stampeding the girls was an acceptable thing to do - I'm considering fitting Boadicca-esque blades to their chariots. This for her:



Still, the flame passed, the hordes surged on; we marched home for extra raincoats, on to church for a quickish cup of coffee ("This is my second breakfast today" said one of the cousins, admiringly), and then round to the Little Princess' school, for a third breakfast of more bacon butties, and a whistlestop "This is what an English school looks like" tour for the cousins.

Royal Jubilee, football, tennis, and now the Olympics; rarely has one summer held so many opportunities for flags and bunting and general jollilities of the English and British varieties. I'm sure the weather is merely doing its bit to ensure we maintain our green and pleasantly boggy land in tip top form for all the festivities.

Rain without end,
Amen

Throw away the key

 So it's a wet day, day four of a wet bank holiday and half term. We're Jubilee'd out, we're definitely flagging. Only one thing for it - send the girls to prison.

Too wet for outside photos, and I was kind of hoping the website would have plenty of their own, but, annoyingly, it doesn't. Still, we took a trip here to Oxford Castle, and spent an afternoon with headless monks, serving wenches who had survived their own hangings and dissections, and a motley crew of ex prisoners and guards.

The ancients climbed the Saxon tower, but I didn't fancy carrying them up 101 uneven and ancient steps felt the girls would benefit more from a series of dire warnings.

They didn't seem terribly overawed.

4 men to a 6 foot wide cell, bunk beds and a bucket anyone? Not in the 1830s, when each man had his own space, but back in 1996, before it was closed.

Happier things happening up at the top of the castle, where the falconers had taken refuge against the pouring rain. Warmer for them, excellent for us, as we could get a little closer than when they'd been huddled in a gazebo at the top of a flight of steps.

Mog was really interested in the kestrel, but I think the rest of us preferred the barn owl. Even the Little Princess decided it might possibly be ok to come out from behind parents and grandparents to at least have a hint of a look. 

Picture taken shortly before the owl mistook Mog's nose for a mouse. Happily, Barn Owl beaks are rather soft, and a little nibble is more of a tickle than a major injury.

It didn't encourage tLP to get any closer though! And we decided to avoid the hawk.

Brave Princess, watching Grannie offer up her finger as another fake mouse.


And then back downstairs, where the headless and skeletal monk obligingly removed his face mask and lifted his skirts to show tLP he really was just a person pretending, and even had jeans on under his robes. No nightmares tonight then. Unless induced by tLP's attempts to eat her own bodyweight at the Chinese Buffet we had for lunch.

All in all, a rather good and not too damp day. New knickers for a cousin, new trainers for the most reluctant shopper in the world, up front and personal introductions to feathered things for Mog , and vivid memories of tiny cells with which to threaten misbehaving children.

And home, and no arguments before bed, and no saline under pressure related incidents (don't ask; far too frequent to be funny), and two cats united in depopulating the nearest hedge. Birdy people; any tips on persuading birds that perhaps nesting 2 foot off the ground in an urban area claimed by at least 8 cats is possibly not the wisest choice? Experience doesn't appear to do it...

Tia

Plodding on

   

The sun came out, and we felt the need to commemorate the event. Sadly, it looks as though the sun will not be out at the weekend, in time for a traditionally festive Bun Throwing. But that's ok; we had our own mini  version with the Guides and Brownies on Monday. And jolly good it was too.


Friends visiting for the weekend; fun and food and far too many little girls all competing for cuddles.

One small seven year old delighted with herself for "Knowing all my tens and twos"; one mother slightly less delighted to see evidence of this scrawled over any flat surface; one certificate proving this warrants entry into the school's "Golden Book" for fabulous achievements, and, at the same time, one little girl sad that her sessions with the play specialist have come to an end.

One nine year old, celebrating the summer with multiple doses of rectal diazepam; not great news as she's currently on four regular anticonvulsants which should, between them, leave her far too snowed to even think about slipping into prolongued seizures.

But also, one nine year old who is managing to express herself clearly and consistently, so that I have now had similar conversations with both school and respite along the lines of "We asked her if she was getting full, and she said she wanted more to eat, but we thought we'd better just check." Lovely stuff - that she is now feeling hungry at times, and also knows when she is getting full. And even more than that, that she is letting others know. Knowing that she can express herself even when I am not around to interpret is a big deal.

More overnight visitors last night; last minute and a short on-the-way-to-hospital stay, but all went well for them today, so that's good too.

A fixed van door; £15 for the part and £85 for the labour. Ouch, but getting in and out is kind of useful really.

Two huge cats still negotiating their peace agreement (spot them both in the photo if you can); both wishing to assert their rights to my lap. One of whom has discovered the best way to guarantee nighttime attention is to leap on The Little Princess' bed and prowl around her face until she wakes and calls for me. I shut him in a room; he calls all night. I shut her in her room; she calls all night. So I settle for much muttering.

Plans afoot for the summer holidays, for October half term, even for Christmas, but so far only one day booked up over half term. Since tomorrow is the last day of term, I'm thinking this may need sorting out.

A child apparently accidentally discharged from three different medical bits and pieces, so much chasing of appointments. A letter from a different hospital, dated April 30th but only just reached us, rearranging an appointment which we have already attended. Wonderful.

So the sun's sort of out, the girls are sort of alright, and I'm sort of tired; sat down to read emails before going to bed and that was too long ago. Soft sheets are calling my name. Pictures are semi unrelated and in wrong orders; can't work out the new blogger format. Sorry.

Tia

Holidays

We've booked a holiday. Not for six months or so, but come October half term, we'll be jetting off to Florida. It will, I think, be our last holiday there. Two girls getting bigger means two girls ever less comfortable with the flying, and ever harder to move around once we get there. Surgeries threatening, more physical complications looming, mean with or without surgery, more pain, more awkwardness, less ability to sit on a standard chair for the length of the flight. And ever more bits of equipment mean ever more hassle to pack, to get things in under the weight limits, and to organise the less portable bits of kit once we get to the other end.

So far, we've booked our flights and our hotel. We have conceded the need to pay extra for direct flights; this adds around £500 to each of our costs. The hotel is probably one we'd choose anyway; except that if I had two girls who could sleep through the night without waking and without needing noisy breathing equipment, we might have gone for just a room rather than a suite. Then again, it's nice not to have to sit quietly in a dark room once they're asleep, so perhaps I shouldn't charge that cost to them.

Big cheers to Virgin Atlantic; no charge for oxygen on board, a choice of two different travel chairs (that'll be the Burnett for Mog and the travel chair for tLP then please) again at no cost, bulkhead seating provided the seatbelts will accommodate the chairs, extra baggage allowance and extra carry on for all the equipment, and no problem if we choose to take tLP's tank rather than her manual chair. A dedicated number to call for any queries at all, detailed info about what we need to do for security on both sides, assistance booked and a huge feeling of "no problem" rather than "it's a nuisance but we'll do it I suppose." Only slight issue is that the airline will only give us an extra suitcase allowance on the way out, on the theory incontinence and feed supplies will be used up by the time we come back again. Which is fine, except that in that case, where will we put all our shopping?

For the first time on holiday, I'm considering hiring some equipment out there. We're going to need a commode seat of some kind, and a transformer. Oh, and oxygen. Not because we will need it (she is NOT allowed to be ill out there), but because if we don't have it, I just know that we will definitely need it. If we're hiring those already, do we push the boat out and treat ourselves to a nice hospital bed? It would be lovely to have something high enough not to have to bend down for every change.

Taxis or hire a WAV? Powerchair, and risk damaging it in flight, and risk it damaging other people in a fairly litigious country? Or manual chair and the need for pushers, and nowhere to hang all our equipment on days out? Powerchair and the need for a wheelchair accessible vehicle at all times, or manual chair and get away with taxis with a big boot? To drive or not to drive, that is the question?

And then there's the insurance. Last time we went, we paid £370 for a week; our friends paid £37 for the same week. It seems we've added one or two rather expensive conditions to the girls' various lists of diagnoses since last time we went. At £1200, the insurance is officially costing more than the flight and hotel for one child. As I said; I think this will be our last Big Holiday.

This being our last Big Trip, do we make it extra special? Anyone fancy swimming with dolphins? Or is a Character meal special enough? Asking the Little Princess; she is most excited not about meeting Princesses (done that!) nor about flying (done that too!) but about the fountains (very cute video). I'm impressed she remembers; but a little disappointed - we can do that right here in Abingdon! Perhaps the week in the gentle warm sun (you hear that, Floridians, we are ordering some Warm Weather in October please!) is special enough. I do know that last time we went in October, the last blast of decent sunlight saw us all through to the middle of winter very nicely.

So if this were your Last Big Thing (and don't worry, neither of the girls is in imminent danger of clog-popping; I'm just aware that the practicalities of life will be limiting all of us as we all get bigger), what wouldn't you want to miss? What would you? Or what other Big Things might you do instead once flying is no longer an option?

Tia

Happy Days

We interrupt this unprecedented blog silence to bring you all the exciting news that this is officially a Very Good Day.

Driving past church this morning, I can see the car park full of barriers and works vehicles and general organised mayhem. This makes me very happy. After long years of delay, after archaeological digs, and once the bats have flown, finally work has begun. The first thing most people see when they pass our church is a line of shoddy, gently undulating, beautiful but very closed and forbidding ancient (400 years old) barns. No, we're not knocking them down! We're rebuilding them, opening them up, turning them from leaky and slightly dodgy storage into a coffee shop and meetings place. The big doors which bar entry from casual passersby will be replaced with light and airy openings, and the musty damp aroma with the ever welcome scent of coffee. It won't happen overnight, but God willing, Spring 2013 we night have something rather special. Link is from this time last year, when we also thought we might be just about ready to make a start. It's really good to see the progress now.

Continuing my (ridiculously short but I was running late) drive, I make it to the Little Princess' school. Where more building works are being planned - to ensure that there is a suitably equipped Changing Places style disabled loo at the senior end of the school. Excellent. And, in the meantime, relatively minor alterations to tLP's school wheelchair are sufficient to ensure she can now sit without twisting, lessening the force of her windsweeping and increasing scoliosis. hurrah.

Home, and a terribly exciting parcel has arrived and for once actually been left for my arrival. 180 240 new-style catheters and a small mirror. Increased independence, here we come. The post arrives, and in it comes confirmation of continued respite provision for both girls at Helen House. Many cheers, and the desire to book as many visits as possible with a view to catching up on some serious amounts of sleep. A birthday card too, reminding me of my own obligations there.

And so a trip to the newsagent's, where, in common with all the other shops I've tried for the past week, I discover it is not possible to be a 4 year old boy or a 7 year old girl. Not if you want a card with an age badge on it, anyway. I find a "Birthday Girl" badge card and hope this will be acceptable.

Onwards, and time for the van to have its annual MOT. Which it passes, without even any advisory points. Excellent news! I fill up with diesel (let's not think too hard about the fact it cost me £105 to do so and instead concentrate on the fact that I can), and just happen to find my way around the first Ice Cream Snickers of the year.

And so, buoyed up with all the general Good Things, I decide to phone the powers that be about my boiler troubles (it has asbestos in it so no one will service it, but replacing it requires access to the loft which means going through my upstairs neighbour's house and needs permission of multiple agencies, all very complicated). And, after an annoying 15 minutes on hold and being charged for the privilege, I learn it is going to be even more complicated than I thought, and that I can do precisely nothing at all about it and nor can the people I was calling. My buoys have sprung a serious leak.

But, the sun is still shining, I don't need the heating for now anyway, and I have alternative access to hot water. And there's a kitten on my shoulder, and a Birthday present to wrap. And did I mention, the sun is shining and it's a beautiful day? It's almost enough not to be bothered by the lack of a boiler. Almost...

Tia

Our week

Monday: back to hospital for another wound review: satisfactory progress and discharged for a fortnight. All signed off as fit for school. Much celebration. Training tentatively planned for school on Tuesday.

Tuesday: a long day respite. Coincidentally, a friend in town accompanying her daughter to a university interview. How can her daughter be old enough to be a mature student? She was 14 just yesterday, or last time we met. Lunch at the Nosebag (upstairs with no lift; an important ritual when I'm without girls). Memories of two daughters no longer with us, and of the day Goldie nearly got us thrown off a caravan site.* Training rearranged for Wednesday. Wound dressing changed; looking good and visibly smaller.

Wednesday: a very excited little girl all dressed up in school uniform and itching to get back to her friends. We are about to leave when the phone rings; training postponed until Monday, don't come in. Small one not consoled by going to Rainbows later on. Miss Mog meanwhile kidnaps a member of school staff to escort her to respite, as expected escort not present. All good fun. Wound dressing changed; looking even smaller. tLP decides she can't sleep because Mog is in respite and she should be in her own bed at home.

Thursday: The Little Princess and I decide a trip to IKEA is in order. We load up and go. She points out we don't have the bins. I go back and collect bins. We arrive, take a ticket and wait for Customer returns. tLP gives man at the counter a long and detailed explanation of my bin lid related idiocy. He swaps bins for IKEA card and looks amused. As does everyone else in the queue. We go upstairs to spend balance on card. Find a couple of things, grab a bin and matching lid (checking lid very carefully and realising that there must, at some point, have been a third sized bin since no lids match our flour bins). I resist a £159 rug. We eat lunch. We get to the checkouts, queue, and pay. It is at this point I notice a large hole in the new bin I am about to buy. We leave the bin and decide against replacing it. I am clearly not meant to own a nice cream bin with matching lid. Or not an IKEA one, anyway. Wound dressing changed; measurably smaller. Mog comes home, and laughs constantly from getting off the bus until getting into bed. At which point she screams and sobs for the next two hours, giving in to sedation and pain relief only extremely reluctantly. tLP decides she can't sleep because Mog should have two nights in respite. I am inclined to agree, but wonder if I could leave the girls here and book myself in instead.

Friday: Mog goes to school. tLP and I decide to do some baking in honour of expected weekend guests. We go to buy butter and eggs, and somehow end up with Smarties and Crisps. A good healthy lunch it is, then. We bake. tLP does the majority of the work; I do the majority of the cleaning up, which includes hoovering the ceiling. The hoover gets stuck to the wall. I consider the many situations I'd never considered finding myself in, and decide this is one of them. Wound dressing changed; wound is 1cm larger and 1cm wider than it was yesterday. Rats. Mog comes home from school giggling. Nurse attempts to smuggle kitten home with her. Grannie visits. tLP throws a wobbly over the utter outrageousness of being expected to eat a piece of fruit. Grolly decides to attack Benjamin. I decide I must shower brownie batter out of tLP's hair, and miss watching my friend talk about adopting her beautiful son from South Africa on BBC1 news. Early night for tLP who is exhausted. Miss Mog still smiling, so later night for her; I am hopeful this might help her to settle better. Sadly her later night still began 90 minutes ago, and she is still grizzling in bed, despite much conversation and cuddles, pain relief and repositioning, changing over the music and rearrangement of the lights, and despite enough medication to fell a small horse. Now Grolly is out, Benjamin is gleeful, the grizzles are still coming, and there's a bowl of sourdough starter bubbling over and ripe for baking.

Another week in the life of us.

Comment at some point during one of the many dressing changes from tLP. "Oh Goddy, Goddy, Oh my God, Oh my God, Oh God, Oh GOD". A look from me, reminding her We Don't Say That Here and Sometimes Some Grownups Say Things Children Mustn't Say (It's a sort of Paddington Hard Stare but if you ask tLP, she'll tell you what it means. "Sorry Mummy, but I HAVE to say it, every part of my being cries out Oh God".

I think I can get behind that.
Tia


*a group of us met up for my God-daughter's dedication. One friend newly returned from South Africa still without her precious son. Another introducing her newly adopted baby. Wobbly walkers, twitchy talkers; at one point 27 of us were squeezed into our caravan. Goldie being obnoxiously loud full of the joys of spring, we banished her outside where she sang her songs of glee to the sun and the wind in the trees, and where we tossed her slices of cake which she crumbled and scattered for the squirrels (and smeared across her face and hair and wheelchair). All good fun. Until the manager of the site paid us a visit, to inform us that holiday makers in a neighbouring caravan had complained that we were mistreating a child who was screaming having been abandoned outside our 'van. To his credit, he told us to ignore them; he could see that she was having fun. But we thought discretion was possibly better than being reported to social services/having fireworks pushed through our windows later that night and stopped her party. Killjoys.

Keeping Busy

Shortly before Christmas, I had a long day off. Mum and I leapt into my bus, and zoomed off to IKEA - more square boxes to slot under the girls' beds, more storage generally, and mmmm meatballs.

I bought two enamel bins to store my flour in. Marvellous. Except that I somehow managed to buy small bins and large lids. Not so wonderful, especially as I only discovered this after I had carefully removed and destroyed all the packaging.

Earlier this week, I had a long day off. Finished helping to pack tLP's stomach with seaweed and then Mum and I zoomed off to IKEA once more. More boxes. Always more boxes. And mmmm meatballs, except oh wait? Duck Confit? Very nice, thank you. And then a cunning plan - buy two large bins with two small lids, get home and have a matched set of four. All set, short detour for fish paste and frozen meatballs, and home James.

To discover that I now have two large bins, two small bins, and four medium sized lids. These are the times which try men's souls.

I'm hopeful that tLP will be back in school at some point in the not too distant future. Anyone want a trip to IKEA?

Tia

On a lighter note...

Because things aren't all grim here, and we do actually have quite a nice jolly time most of the time,

A missed photo opportunity - Grolly Beast playing with Mog's switch. Apparently, a toggle switch is just the right shape to really get behind those ears when you're moulting. Apparently, a cat using a switch to say "Hello" repeatedly is the Funniest Thing Ever if you're a girl under ten and living in this house.

And, in other news, did you know, I am the Mother of God? There's promotion for you! Who cut her back aside, the Little Princess' other big query is "Why I not got a Daddy?" And yes, we talk about her life story, we talk about her birth father, we talk about how there's just me so if she wants to keep me as a Mummy, she has to manage without a Daddy. And then we talk about how no one has to be without a Daddy because we all have a Father/Daddy God in Heaven who will be our Father if we love Him. And we talk about how Jesus loves us, and how if we love him and ask him in, he will always be with us, so we will never ever be alone, not even if it's night time and the lights are out and everyone else is asleep in different bedrooms.

We find bits of the Bible where Jesus says anyone who loves him is his brother or sister. And tLP is delighted. She has a Daddy God in Heaven, and now she has a Brother Jesus too. A Daddy and a Brother who love her, and who will always be with her, and who are always ready to listen and to keep her safe. But wait, see, because I am her Mummy. So if Jesus is her brother, well, you see where this is going? My middle name is Mary, after all.

The world can be a very confusing place when you're six. And possibly even more confusing when you're the mother of a six year old.

Oh, question for the wise readers. Anyone got any recommendations for a nice friendly "where do I come from?" type book which is preferably literal enough not to go down confusing side alleys regarding aliens or the laying of eggs, no special sneezes, and ideally one I can adapt to include cesarean sections and adoption too? Failing that, anyone fancy writing one?

Many and varied are the conversations I never thought I'd have. One of the bonuses of having a neuropathic bladder is that you're very familiar with medical names for various body parts. Explaining that no, you don't squeeze babies out of your urethra and they won't block the catheter has to be one of the more unusual things I've done this week.

Tia

Co-operation.

I've been trying to get a video uploaded for the past couple of days, but Blogger isn't working. So, here's the still version instead.

The active version is louder. With a little more enthusiasm from Mog, and a hint of outrage from the Little Princess. It amuses me.

Tia

Costing Care

I wrote this a few years ago, a friend asked me to find it and so I'm posting it here so I don't lose it again.

I got up this morning, left my bed (£150), and walked down one flight of stairs. Had a shower (£100)and went in to my daughter.

I hoisted (£1000) my daughter out of her her bed (£800) using a sling (£100)into her wheelchair (£2000), then used the overhead hoist in the bathroom (£2000) to put her on the shower bench (£600) to give her a shower.She then sat on the toilet seat (£200). Put her in the lift (£3000) to go down to the sitting room. Most of these costs were borne by social services.

I had a bowl (49p) of cereal which I ate with a spoon (inherited). My daughter had a bowl (£8.95) of cereal which she ate with a spoon (£4.95), She wore a bib (£12) and used a special mat (£4). Added to her cereal were dietary supplements to increase fibre content (£2). These costs all come back to me.

Later on today I will get into the car and drive to school. For my daughter to sit in the car, I either need a £6000 conversion, a £20,000 new vehicle, a £2000 hoist for her and a £1000 hoist for the wheelchair, or as at present, I use my own back (free but longterm costs probably very high). Oh, I also use a special wheelchair (£500) as hers is too heavy. All costs met by me.

I am writing this at my computer using a keyboard (£8ish). I am sitting on a chair (£50). When my daughter uses the computer she needs a touchscreen (£300 minimum), and her specialist comfy armchair (£800). Special word processor with symbols and speech, (£200).

I might go for a bike ride later. My bike, value nothing, but for a decent bike, £200-£400?. My daughter's trike with additional straps and supports, £1000.

I will finish writing this and then stand up. For my daughter to stand up requires a standing frame, £3000. I might go for a walk. A walking frame for my daughter? £1000. We don't have one yet.

Fancy a ball game? Plastic ball, presently £1.29 at the corner shop. £12.95 for a musical ball so my daughter can hear where you are throwing it to.

Go to the cinema? Local one's inaccessible so that'll be an 80 mile round trip, thanks. Or go by myself, finding a specialist babysitter. Cheaper to wait and buy it on DVD.

A swim? That'll be entrance money for my daughter and 2 carers to lift her. Or £17.50 to hire the local hydrotherapy pool, provided no one else has already booked it.

Fly a kite? That'll be another £800 for the off-road wheelchair. Yes, she does have 3 wheelchairs, all for different purposes. If the baby stays she'll be getting a fourth; one to seat both of them. And the government only pays for one of those chairs. None of these chairs give her independent mobility; she'd need a powerchair (£2000) for that and we don't have it yet.

Put up a swingset in the garden? £60-200 in the catalogue. Wheelchair accessible? multiply that by ten. And forget about trying the ones in the local park instead...

Go on holiday? Can't fly cheapair; they (illegally) won't take the wheelchair. Regular air will charge more for the excess baggage.Wheelchair accessible cabins on ferry only sleep 2, so need
2 cabins for 4 of us, twice the price. Wheelchair accessible TravelInn only sleeps 2 (regular rooms up to 4) so need 2 rooms for 4 of us, twice the price. Wheelchair accessible accomodation in many hotels not available at lowest room rate, more cost. So we mainly camp instead.
Remember to allow costs for extra staff.

Public transport? Buses are inaccessible. Trains better (if you don't mind other passengers using wheelchair slot to store baggage) but local train station inaccessible so have to drive further away first and pay to park all day. Underground? Forget it. So realistically when car unavailable taxis are the only option. Providing you can find accessible ones that is. And are willing to educate the drivers on the importance of bothering with all the ties and clamps. And pay the waiting charge whilst they clamp the chair down.

Clothing. With 2 disabled children (even though one is a baby) I average 4 loads of washing per day for the 3 of us. So clothes wear out faster, as do sheets. as do the washing machine and the drier. 6 sets of school uniform to allow for accidents. Clothing gets stained faster, night splints tear holes in pyjamas. If baby has proposed op, she will need specially made/adapted clothing afterwards. Goldie chews sleeves and collars so they need replacing regularly. Shoes don't wear out at the bottom but splints wear holes at the back, and shoes built to accommodate splints are very hard to find and very expensive when you do find them. Goldie has 2 sets of clothing - one to accommodate her brace, one for wearing without it.

The NHS supply 5 pads (nappies) per day for my teenager. I have to pay for any extra (£1.20 per nappy) and also for the liners she uses to increase absorbency (5 per day at 20p each).

Food. Both kids on special diets meaning additional grocery bills. High Fibre diet for one of them, so brown rice 87p not tesco value rice 12p. Healthy eating baked beans 67p not value beans 7p. The other one dairy free so soya baby milk £8.30 not standard £5.20.

The baby can't cope with pram or buggy very well so special mini wheelchair being applied for. She's already collected 2 special seats, both secondhand on loan but eventually she'll be having
similar expenses to the older one in that respect.

Both girls have visual impairments. Lighting and other equipment to stimulate vision gets very costly, even if you go for the Argos version rather than the disability equipment catalogues.Toys need to stand up to having a teenager chew on them, and to being thrown around. Specialist play equipment (for stimulating the senses, fine motor control, switching, cause and effect, etc., is VERY expensive, baby toys are cheaper but less appropriate for a teenager (although since her favourite toy at present is the baby's teething ring I am not complaining).

Household equipment. Washing machine and drier as mentioned previously. I have worn out 4 hoovers (including one Dyson) in the last 4 years. I also have a steam cleaner and have had to replace most carpets with hard flooring. My daughter chews her way through cables regularly, so averages a new walkman every month (once a week in holidays), she dribbles in the mouthpiece of the telephone which then also needs regular replacements. Televisions and videos have been pulled to the floor; she smashed a £1000 touch monitor before we ever got to use it. She is not wantonly destructive, just sees things and tries to reach for them. Her bedroom needs regular redecoration as she picks the wallpaper off the walls (amongst other reasons).

Other costs? to make it possible for Goldie to enter our kitchen (and so learn about where food comes from and why I disappear regularly to fetch it) would mean completely rebuilding it I think - £5-10K. Not going to happen. Similarly finding storage space for all Y's equipment would mean building a garage somewhere (no space) - realistically to meet both girls' needs, we need to move house. As it is, for 12 weeks each year (school holidays) we lose any reasonable breathing space downstairs and thread our way through a minefield of equipment.

Costs to me - for specialist training not covered by the LA, £3000 per year. For wrist splints £50 per year. To pay various staff for non childcare related tasks freeing me to do the childcare, variable but can be up to £75 per week. Both girls have frequent medical appointments and hospital trips; I need to find and fund staff to care for the girl not in hospital. Entertainment expenses as we nearly always have to be the hosts - far too many houses are inaccessible.

My phones aren't coded; I don't have malicious teenagers hacking them. I do have many hours of daytime calls to specialists, to birth family living overseas, and to my own friends when trapped at home by sick children. And, it has been known for fosterchild to make phonecalls accidentally when I fail to notice them playing with the keys (friend had a 4 hour call to sweden courtesy of her disabled 4 year old).

My daughters can't say where they've left things, and between home and school many things are dropped, lost, broken, mislaid, munched by other pupils, chewed by Goldie, etc., I'd suggest that lost equipment is at least as costly. Goldie hasn't damaged neighbours' property but she defaces ours regularly, and wear and tear on paint and wood from angular wheelchair mounts up. And neighbouring children take delight in damaging our own property; ok so usually only destroying the washing line, throwing bottles if we go to the playground and stealing the odd bike, but again, it all adds up.

That's just the costs for us. They are relatively low at the moment; they will mount as baby I gets older and starts outgrowing baby supplies. They will mount again as her disability develops, and she will need carers with nursing skills.


I wrote that when miss Mog was a baby. I hadn't seen it for a few years; it is interesting to see what has and has not changed. Clearly, the biggest difference is that we no longer have Goldie chewing and finger painting her way through toys and walls and bedding. I'm not sure her absence is anything to be happy about though. We never did get her a walking frame.

Mog, no longer a baby, is no longer eating orally. Not that she ever did, really. She now has a special medical formula at £18 a tin, 4 tins a week. Not at my cost, thankfully. However, an increasing number of my friends are moving over to providing their tube fed children with a blended diet - real food whizzed finely enough to pass through the gastrostomy tubing. And I'm considering it. However, the blender most families say is necessary in order to guarantee no lumps and bumps is £410. Which, compared to the £10 stick blender I use to make soup is a fairly hefty investment.

When I wrote that, Mog must have been very new. No wheelchair, so she was less than a year old (in fact, WySoy infant milk, so she was much less than a year old - she switched to a specialist formula fairly shortly after that). She now has three wheelchairs. One fabulous NHS wheelchair service provided one (several thousand pounds) which tilts, reclines, bounces with her spasm and is moulded to her body to be an exact and comfortable fit. One private buggy which lies flat for when she can't sit up(£1,000, plus £500 for the mouldable liner), and as a back up for times when her wheelchair is in the workshop. And one offroad wheelchair for beaches, mudslides and snow (£700). She has also had, and discarded, a starter type power chair BIME Buggy (£400 from Ebay very secondhand), a Trike (£1000), and a whole collection of different double buggies either to sit with Goldie or to try and work with Little Princess.

She's had a Leckey Advance chair, a Jenx Bee, a Special Tomato MPS, and a Spa armchair. The first three from Social Services, reissued to other children once she had outgrown them. The last a private purchase from a friend whose child had outgrown it. A Monkey Standing frame on loan from the physios, and various assorted sleep systems designed to keep her body vaguely symmetrical overnight (they didn't work).

We did move house a year or so after I wrote the piece above. These days, instead of walking down the stairs (with Mog on my shoulder), I walk around the corner in my ground floor flat. I've upgraded my bed and now have the world's comfiest memory foam mattress. It still cost a fraction of the £3000 Mog's enclosed, ultra safe, profiling bed with super soft and comfy pressure relieving mattress . Thankfully not a cost to me directly, but we all pay for the NHS. I switch off her SATs monitor (£Lots, don't want to think about it, except it's vastly superior to the £800 I spent on our back up more portable one so I'm thinking it's probably vastly more expensive too), and switch off her CPAP (again, no idea of cost except it can't be cheap because we've now been waiting two years for her to have her own machine rather than an old one on loan which we pray never breaks down because no one will be responsible for repairing it).

I now hoist (£1000) Mog from her bed to her wheelchair, making use of the wider folding doors courtesy of our latest Disabled Facilities Grant (total grant £8,000 I think, including a new wider driveway and more functional ramp to the front door).

We have carers every morning but Saturdays, and if they are hoisting Mog into her chair then I am hoisting the Little Princess (or should be, and do some days, I promise) out of her bed (which is the same £800 bed Goldie used to sleep in) and into her £10,400 wheelchair (private purchase topping up a £2,700 voucher from the Wheelchair Service). Having first switched off her ventilator, humidifier and feed pump, and detached her from various tubes and drainage bags. More costs for the NHS.

The heating is set at a cosy 23 degrees C. Partly that's due to the fact that the boiler switches off when I turn it down, partly it's due to the fact that Mog now has difficulty regulating her own body temperature and so it is important that the temperature of the house stays consistently warm. Either way, it's expensive with rising costs of gas. And electricity costs with both girls' medical equipment running day and night aren't the cheapest either.

Mog no longer gets her pad changed first thing in the morning as a matter of course; if she has been dry overnight then the overnight pad gets put back on - our generous allocation of five per day has recently been cut to four. That's just about manageable for Mog but hopeless for the Little Princess who was receiving more than the standard allocation of five before the cuts.

Our car was replaced with a £6,000 minibus, with just about enough tracking to clamp down two wheelchairs. We've since outgrown that minibus and now drive a Mercedes Sprinter with tracking for three chairs, or enough space for both girls and all the equipment we need whenever we go away overnight. £10,000, six years old. Reasonably efficient fuel costs but still significantly more expensive to run than the small family car (or the Little Princess' longed for Mini) which would be all we needed if we three came without the equipment.

The Little Princess has her own private collection of wheelchairs. She shares Mog's offroader; if it's too snowy for tLP's powerchair it's too snowy for Mog to be outside. The Wheelchair Service provide her with a basic folding manual wheelchair. She's just outgrown her £3,000 ultra lightweight Minny wheelchair; we're now looking around to see what might be the next best model for her. But will hold off until she's had all her surgeries and see what mobility she has left once her spine has been fused. Then there's the wheeled shower chair, and her wheeled standing frame (£3,000, private purchase).

On through the day, and most things haven't changed. tLP now has similar nutritional needs to Goldie, for similar reasons, and so please adjust the food prices to reflect today's figures.

Improvements to public transport - our buses are now all wheelchair accessible. Which is excellent, except they only have space for one wheelchair on each bus. So I can't take both girls on public transport unless I'm prepared to have tLP on my shoulders all day. Curiously enough, I'm not. Cheapair do now take wheelchairs; however they charge every passenger a wheelchair tax thus making actual wheelchair users even more unpopular with the average passenger than they were before.

Goldie's not here to paint the walls and pick at the wallpaper. But tLP's tank powerchair does an excellent job of carrying on her good works. Walls, doorframes and radiators have all taken a serious beating in the past few months. We have an iPAd with a broken screen (dropped onto the hard floor we have in place of carpets to cope with muddy wheels) and an iPhone with a broken screen (run over by a wheelchair once too often), and anything left on the floor will be flattened or shattered, depending on flexibility.

We do still go camping; we don't now camp without carers. We do still holiday with friends and family rather than always taking hired staff with us, but the time is coming when we won't be able to do that.

I see I predicted that Mog would need staff with nursing skills - considering I wrote that before she had her first surgery even, I'm impressed with my ability to see into our future.

I'm not writing this because we need money. We don't. I have adoption allowances, the girls receive Disability Living Allowances and I get a Carer's Allowance on top. These are all costs we can meet. But, there are many many families who have these costs and don't have the adoption allowances to meet them. There are families who have adopted and fostered children since infancy who are now discovering that adult care costs even more and that their income will be halved. And this despite knowing how many thousands of pounds residential care would cost, and how much the families are saving the NHS and SS by continuing to provide the bulk of the care themselves. And there are people under the impression that in hard times, the welfare state should shrink and we should all tighten our belts. I'll tighten my belt if I have to, of course I will. But the additional costs of living with disabilities don't just disappear, however hard we try. At the moment, I can cover it. But friends can't, and that's scary. And as resources (e.g. pads) provided by statutory authorities get scarce, the families are forced to provide more themselves. Without actually having any more ability to do so.

As I was updating this list, a friend was sending me suggestions for other increased costs. I think I've included some, I know I've forgotten more. So, friend (and other friends, and anyone else), do please feel free to add in extras in the comments.

Tia