Tuesday, 29 January 2008

Happy Birthday to me!

I don't know if you can see the wording on this card, but I think it's excellent!
It says at the top "Woman with a past". In the middle "Woman with a future". And at the bottom "Woman with a present!". I love it.

I've shared some of my past with you, major life changes in the last 12 months.
My future is looking interesting too - tomorrow we are off to hospital so that Little Fish can have surgery. And before that we are in court to sort out some legal stuff.
And my present? Mum and Dad are coming over any minute with a large curry and a tape measure - Mum is going to help me make curtains for our new sunroom.

I may not be around and posting for a couple of days, but I will finish the giveaway draw when we are discharged from hospital.
Take care

Monday, 28 January 2008

Giveaway 2 - Dora the Explorer

Now this is not a Christmas gift which got forgotten. This is a Christmas gift which got rethought. This delightful item is a Dora The Explorer kite. I know the child for whom this was intended would have loved it. However I also know that her parents would have been less than impressed, and thankfully I remembered before sending it that they were not an outdoorsy family, and would not appreciate being made to spend hours standing outside on windy hillsides.
On the offchance that someone out there is in fact a Dora fan dedicated to fresh air, I put this out ready to be given away. But, if you want it to give to a small child, please rest assured that I take no responsibility for any consequent falling out between you and the child's parents, if they don't share a passion for draughts!

Leave a comment to be entered.

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January Giveaway

It's here! After the fall, redemption. Or something to beat those winter blues, anyway. Shannon over at Rocks in my Dryer is hosting another bloggy carnival.

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Now here's the thing. I had my giveaway item planned months ago. I put it in a safe place. A very safe place. So safe that I can't find it anywhere. I won't tell you what it was; I know it'll turn up one day and then it'll be ready and waiting for the next one. Instead, I tried to find items from my house, which would give an idea of who I am. Hmmm. I came up with two possibilities. Actually, I came up with lots of possible items to represent my life, but I thought that disposeable gloves, empty medicine pots, piles of nappies, and general clutter just might not be terribly attractive to others. And almost certainly not worth the postage.

So, here's what I've got for you.
This is a Christmas present which never got sent. That's fairly representative of my life too. I know the person who would have received it will not now want it, January and February being the traditional eat nothing sweet and sugary months, so here's hoping it'll be attractive to one of you.

This is a tin of Luxury Biscuits (UK biscuits that is - cookies, not scones!). Made by Border, they are handbaked Scottish Biscuits - "9 varieties of chocolate and plain biscuits baked to our original recipes using only the finest ingredients". Don't fancy the biscuits? It's still a very nice tin; enjoy that and pass the biscuits on!

To enter, just leave a comment. If you don't have a blog, please leave your email address.


Sunday, 27 January 2008

Blogging by numbers

1 pile of laundry, waiting to be put away,
2 sleeping children, had a busy day,
3 little baby dolls, sitting by the door,
4 dirty coffee mugs, lined up on the floor,
5 wooden puzzle pieces on a plastic plate,
6 borrowed books to read, thank you they'll be great!
7 guests have gone back home, in their big white bus
8; I forgot the guinea pig, hope he doesn't fuss!
9 is the time that I plan to go to bed
10 times I thank my guests for all they've done and said.

Doggerel I know, but my mind does silly things when I'm tired.
As a follow on from yesterday's perfect hostess post I thought I'd add something.

The perfect hostess has a guest bedroom. Or several. I on the other hand have a lilo with a slow leak, and leave my guests to spend the night on a cold hard floor. Sorry folks! Hope you aren't too stiff this morning. Oh, and the perfect hostess provides a peaceful and calm atmosphere, conducive to sleep. I supply a screaming sobbing fitting child, and a mother muttering imprecations under her breath as she stumbles through the house in the wee small hours searching for medications.

A good weekend (for us at any rate! I hope so for you too). And just the distraction I needed before Little Fish's surgery later this week.


Saturday, 26 January 2008

The perfect hostess

The perfect hostess has the perfect house. Before guests even walk through the door, they are greeted by an immaculate garden, a path swept free from leaves, and a gleaming polished letter box. On entering the house, the eyes are bathed in a warm glow from the sparkling floors, windows are invisible, everything has a place and is in it, children are perfectly behaved, and the scent which assails the nostrils is a combination of fresh flowers, newly baked bread, coffee, and just the faintest hint of furniture polish. Soft soothing music plays, children are perfectly behaved and sitting reading books (or banished to bedrooms or school). The guest bedrooms have been made up with newly laundered and ironed bedding, the guest bathroom is spotless, with a stack of neatly folded towels chosen to match the decor.

Oh stop, stop. You get the idea.

I am not a perfect hostess. My front garden is a mess. My letter box is rusty. My doorbell is broken, and works only at random intervals (I would replace it, but it's the third one to have that problem; I think it's me rather than the bell!).

My house frequently smells of air freshener or of whatever the air freshener is failing to mask. My floors are covered with small but lethal bits of children's toys. My children are extremely unlikely to be sitting reading, far more likely to have pulled seven different boxes of toys out and stirred them together with a large stick, in the twenty seconds I left the room to answer the dodgy doorbell. Or the seven boxes of toys they've been playing with all morning.

I have no guest bedroom or guest bathroom. Sleeping arrangements vary with the guest. Some sleep on put-u-ups in the sitting room or playroom, some take my bedroom and I move in with one of the girls, some take the girls rooms and they move in with me. It all depends what suits us best at the time. The bathroom is clean, but not perfect. The towels will be whatever is clean; I have a motley assortment. Bedding will be clean, but may be sleeping bags, depending on the number and ages of the guests.

My flowers are past their best, but not yet at the stage where they need to be replaced. I have baked biscuits and a chocolate cake; I have also bought various yummy things. I would not feel bad if all the food had been bought and not made.

My hall is messy. Cluttered, and messy. I can't open the cupboard door any more (Little Fish drove into it in her powerchair), so I can't hide the coats, the takeaway menus, the bits of post and the spare telephone.

But you know what? People haven't come to see the house, they've come to see me. Come to visit us. A local friend admitted last week that I was one of the few people she was genuinely pleased to have turn up on her doorstep. Why? Because she and I both have real houses. We have children who are as likely to be tantruming and whinging as they are to be wonderfully behaved and delightfully stimulating conversation. We both know that lunch may not have been cleared away completely several hours after the meal, and that children do collect stains and scuffs at the most inopportune moments. We both visit other friends, by appointment, and are greeted by the perfect hostess, the perfect house, the perfect children. It's intimidating. Where do these people keep their paperwork? What do they do with the newspapers until they get recycled? Where are the catalogues, the magazines, the books? Whereas we can drop in on each other, and know that we are likely to be greeted by a similar level of organised chaos as we have left in our own house. Other people's mess is so much more inviting than our own!

My cousin is an interior decorator, and cannot understand how our family can bear to have so many poorly matched books crammed into every conceivable cranny on each shelf in each room. My friend, my parents, and I , we understand the beauty of books, in and of themselves. This does not make us better people. It makes our houses appear cluttered and confused. It makes it hard to dust, it means that even if everything else in the house is for once in its own place and put away, the house will still look cosily messy, especially if viewed with the eyes of one trained on minimalist ideas with clean lines and clear surfaces.

I am not a perfect hostess. My cups are mismatched, my vases are chipped, my books are often tatty with torn covers. My laundry will almost certainly be hanging on the airer, my children will be involved in something messy, and if the floors are clear it will be because I have swept the worst of the clutter under the furniture. Under the furniture being the best possible place to keep most of Little Fish's toys - she can reach them from the floor and I can move them away again at the end of the day with a well aimed kick.

We have a saying in our house "nothing in this house matters more than the people". This doesn't mean I don't have any precious possessions; I do. I have a coffee set which was my great aunt's, some beautiful photographs and pictures, and other bits and pieces with perhaps no great material worth but of enormous value to me. But none of these are more important than the people - the people living here, and the people visiting here. You are free to drop things and spill things and crash into things, to break things and to stain things and to borrow things and lose things. When you are here, treat this house as your home. Relax.

And actually, I suspect that is the key to being, perhaps not the perfect hostess, but to providing hospitality. Come, share, enjoy. Sit, relax, chat. Leave Martha behind for a while and enjoy being a couple of Marys together.

I hope so anyway, because my guests are on their way, and I have spent time I could have spent taking fingerprints off the windows typing this.

Have a good day.

Friday, 25 January 2008


Thanks everyone for all the food suggestions. Tina, bring as many as you like, but I do have a few of my own:
More of Bob's work this. It was supposed to be a shelf for my preserving pan. But apparently the proportions were not aesthetically pleasing, so now it's a book and mug shelf instead. Not sure where I'm supposed to put the preserving pan now though.

I like my recipe books. I like taking them out, reading through hundreds of different recipes, then pick a couple, realise I don't have the ingredients and ordering take-away , hitting the internet going with what I have instead.

One book I particularly enjoy is this one:I have a few children's cookbooks, two that were mine when I was little, full of nice little recipes like chocolate crispie cakes and instructions for growing mustard-and-cress in eggshells to make strange men with living green hair. Very simple directions, lots of "now ask Mummy to put it in the oven", but mostly tried and tested never-fail recipes.

This book is in a different league! There are cakes, there are sweets, and biscuits, and puddings, and other yummy child friendly things. But there are whole pages like this:and whole chapters on the history of different foods, instructions on how to gut fish (sorry again all you vegetarians; I did at least resist showing the photos from that page. And restrained myself from sharing the "how to stuff a sausage" page too), suggestions on growing your own
as well as proper, real, recipes for what to do with them when you have. I know Jamie Oliver is popular at the moment for getting children to eat their greens, but I have a feeling this recipe book is older than JO' school dinner investigations. Not that I have anything against JO; I just really like this recipe book. Instructions are clear and simple - oh, it makes me feel very old, as all the measurements are in metric only - and the recipes are delicious.

Little Fish and I have been cooking and baking again today. We Christened the new pans by stewing up some apples (LF's suggestion and her favourite food) and making some of my Sunshine Soup. We also made a rather yummy (I hope) wheat free chocolate cake, 4 dozen spice biscuits, and a big batch of cream cheese icing. Little Fish is a wonderful person to cook biscuits with - she can't eat them once they're cooked and shouldn't really have the raw dough either, so I have to save her from it all. Shame.

We also found the time to collect a month's incontinence supplies, rescue LF's power chair from repair central, a quick trip to Waitrose, and two parcels in the post. A busy but satisfying day.

Thursday, 24 January 2008

Grown Up Saucepans

New saucepans. New saucepans! I have a history with saucepans. First share my pleasure in these lovely new pans.
Pretty, aren't they? They weren't my first choice. First choice was a set of absolutely beautiful cream enamel ones. I tried to buy these several months ago, but no one in the shop could tell me if they were dishwasher proof or not. When we went shopping again yesterday, the kitchenware assistant was actually working. She didn't know either, but was willing to disturb the beauty of the display to check the box. Turns out they are dishwasher proof, but had a teeny tiny little flaw - a big paragraph in the instructions leaflet "warning, do not turn heat up high under these pans as this will cause discolouration and damage the enamel". OK, so this is a beautiful set of cookware which cannot actually be used to do things like fry bacon or boil water or well anything other than gently reheat previously cooked soups and sauces. I know we call them saucepans but it seems a little excessive to me! Back to the drawing board, chaps. Who actually buys pans which can't be used to rapid boil or flash fry food?

Meanwhile I gave up the dream of cream enamel and had another hunt around the showroom. And came up with these.

So pretty! Heavy, heavy, heavy, beautifully thick bases, lovely domed glass lids with a handy steam escape hole thing, measurements inside the stainless steel ones so no more trying to measure out three pints of milk by pouring it in and out of old baby bottles (I will buy a measuring jug one day. One that doesn't break when used to measure boiling water).

You want my saucepan history? Alright then. My first set of pans belonged to my parents. When I moved out of their home they used it as an excuse to get rid of all their old grot by passing it on to me gifted me with the pots and pans Mum had cooked in for years, and upgraded their own cookware to something rather nicer. Over the next few years, this set moved with me from my home, to Yorkshire, down to Surrey, and then to Cambridgeshire, collecting dents and scrapes with every move. I lost a handle here, a lid there, but they still held food as I cooked it, they still did the job.

Then I got ill. I was very depressed for a while, there was a problem in switching antidepressants, and I got really depressed whilst that was happening. Eventually my doctors decided that I needed a proper break, signed me off work, and I went back home for a few weeks to rest and recover. When I returned to my own home (I had a live-in job at the time) feeling rested, more hopeful, on the road to recovery, I realised I had left without doing any washing up at all. For six weeks the saucepans had sat in my bedsit, growing new and interesting varieties of mould. Plates, cups, cutlery, saucepans, everything from the 'fridge, bedsheets and half my clothing and all my towels, out it all went. Big black binliners and into the skip.

A fresh start. But one on very little income. I went to Woolworths, and bought a set of just four place settings, four sets of cutlery, and a set of cheap pans. All new, all shiny, all blue, and all clean. I bought new bedding, new towels (also blue and white), new food, and started again.

After a few weeks I realised how much I loved my blue glass crockery, and stocked up on an extra two sets. They were extremely cheap. They are still doing sterling work, twelve years later. The saucepans however were very obviously extremely cheap, and the non-stick coating began to shed almost immediately. Over the next few years I gradually replaced them, a pan here for a birthday, a milkpan there for Christmas, a couple of new frying pans "just because".

Then I moved back to my home town to start fostering. My motley collection multiplied thanks to my aunt also deciding to upgrade her cooking equipment, and again thanks to my grandmother, who moved from her own home into a nursing home. All was well in Tia's Kitchen.

And then I discovered the internet. And burnt baked beans onto one pan so badly the pan warped. And burnt rhubarb so badly onto another pan it ate holes in the base. Neglected corned beef hash did for one of the frying pans, boiled rice finished off another pan. I was eventually left with a milk pan with a burnt handle, and a pressure cooker without a lid (still a very useful stock pot). It was only as I was packing for camping last summer that I realised I actually had a very nice set of camping saucepans. Lightweight, with nice copper bottoms and folding handles. When I came back from camp, I left the pans out, and have been using them ever since. A frustrating experience, as they burn any food left unstirred for more than thirty seconds, and since the handles are designed to be used over a Trangia or Bluet, not on a standard hob.

Still, I decided I could hold on for a while. Replacing my pans was what I wanted to do when the kitchen was finished, to celebrate the day Bob moved on and my house became my own again. Don't get excited; he hasn't actually done that yet. My garden is still unfinished, my sunroom still full of lethal tools, but I realised that one of the reasons I was annoyed with him, was that I was getting fed up of trying to cook with my camping pans. I can't force him to return and finish. But I can at least get rid of one source of irritation.

So here are my new pans. Still shiny, still pretty, still unused.
Trouble is, I can't decide what to cook in them first. Suggestions, anyone?

spina bifida, cerebral palsy and the joys of googling.

Every so often my stat counter informs me someone has found my site by searching for certain specific terms.

To the people who found my blog by hunting for information on toblerone brownies (lots of you!) hello and welcome, hope the recipe worked well for you.

To the people who find me by searching for salacious pictures, shame on you. I hope you realise your searches are recording, including information on your ISP and location. If you must do it, at least don't do it from work. And don't visit here.

To the person who came here looking for information on life expectancy for children with spina bifida, the person who wanted to know about babies with cerebral palsy screaming, the people who come looking for information on children with night-time ventilators, chest infections, children's disability equipment, hip surgery in childhood, I hope you found what you were looking for. If you haven't, then do please leave a comment or contact me through email - I don't promise to have the answers you're looking for but at least we can share the questions.

Meanwhile, if any of you - regular readers or first time glancers or whatever - have any ideas on how to persuade Little Fish that my lunch is not her favourite toy and that all the many toys she has, and failing that, the spoon drawer, would be a preferable thing to be fiddling with, I would be grateful.

The washing machine's revenge.

I don't think I managed to give a full picture of quite how wet things got yesterday. Water was sheeting everywhere; I thought Little Fish had been safe but it was dripping out of her (thankfully manual) wheelchair when we got to the clinic. Water was sheeting in graceful torrents up the walls and dripping down from the ceiling. At one point I am sure I saw dolphins doing backflips over the kitchen counters! No rainbow, but thankfully no fried electrical circuits either so I'm not complaining.

After the floods, the clear up. I used the remainder of the laundry mountain to sop up the worst of the puddles, together with the bed pads mentioned yesterday. Then had to leave to do the rest of our day's doings. Somehow, the laundry mountain (what do you call a sodden mountain? A slurry heap?) was not a priority for the rest of the day.

When it came to bathtime, I ran the water for a while, only to watch the water become a trickle, a splutter, a hiccup, and a nothing. Cold water running fine, hot water non-existent. Hmmm. Back to the airing cupboard to inspect the various taps. Stop cock immobile, can't be that. Hot water tank empty, cold water flowing freely. Now why? I trace the pipes back, and realise that the tap I had thought was the mains for both flats was in fact the tap for the hot water. Which for some reason had been half on, half off, when I came to turn it off in the morning. Only, it appears I turned it fully on, rather than off, and then in turning it back on later, I turned it fully off. Marvel at my competence with basic concepts, on and off, left and right, clockwise and anticlockwise. Tap back on, fill the bath with a kettle, normal processing has been resumed.

This morning I gathered the slurry heap and stuffed it into the washing machine. I put the machine on a quick cycle first, thinking to extract anything left disgusting and add it to a proper wash later. Imagine my delight as, two minutes into the cycle, with a bipbopbipbopbipbop the washing machine gleefully announced an inlet error once more. I cleaned out the soap dish, which was absolutely disgusting, full of stagnant water and mould, and quite possibly the source of the original error rather than the filters, which had been fairly clean. Restart the load. Two minutes in, bipbopbipbopbipbop. I am sure the machine is laughing at me by this point. It is at this moment I notice those two little taps on the pipes. The ones I found yesterday after having flooded the kitchen. The ones I switched off to clean the filters. The ones which are indeed still switched off. Flip them back on again and hey presto! water floods into the washing machine and we are off.

I am the conqueror; washing machine maintenance holds no further terrors for me.

And then I discover the toilet has blocked. Washing machine's final act of revenge?

Wednesday, 23 January 2008

Flapjacks and Flippers

My kitchen is full of them.
Flapjacks first. I made a tactical error last night and ate the biscuits I had planned to leave out for the babysitter. Not having time to run to the shops, Little Fish and I made emergency flapjacks. Very easy.

Take 8oz butter and 8oz sugar, and melt together in a big pan.
Now, if you're alone in the kitchen, just dump 12oz porridge oats into the pan once the butter has melted. If however you are trying to keep a small child away from the hot cooker, pour 12 oz porridge oats into a very special super duper extra important mixing bowl, add a large wooden spoon, and ask the small child to stir them
A suprisingly successful ploy. Stir in the oats, and then press into a baking tin.
Small child will probably object to you using her spoon in this way and try to grab it back. Oh, and yes, that's a silicone sheet covering an ancient mini roasting pan - it keeps the rust away. Side note - see that thumb? Yes, it's dislocated. Yes, both her thumbs do this. Yes, it does mean she shouldn't use her self propelling chair as much. Or her wheeled standing frame. And yes, she will need some kind of splint which will reduce her hand function. Sigh.
Bake at 180C until they look done (360F roughly I think. Doesn't matter. Cake heat. Just shove them in the oven until they're brown on top).

Take them out of the oven, let them cool in the tin for a bit before slicing them with a sharp knife (yes, that is how the roasting pan came to be rusty), then ease them out of the tin and onto a cooling rack, before transferring them to a plate and eating them.
You'll probably need to reshape them a little once you've cut them - they are very fragile and squidgy until they are cold. Very easy.

I can't tell you how long they were in the oven for this time - I can tell you it was the length of time it took my washing machine to go through its spin cycle, as I was having to hold the washing machine steady throughout the spin cycle to compensate for having it pulled it out from its hole. My washing machine only likes spinning in its little hole. When I pull it out to reach the back it sulks and goes all shy and silly and won't spin.

Why did I pull it out from its hole? Funny you should ask. I've been getting an error message telling me I needed to clean the inlet filters. The manual had very clear instructions on how to do this. I found my pair of pliers, eased the machine out of its hole, found the hot and cold water hoses, couldn't find the taps to isolate them so went for the mains stopcock. Couldn't turn that at all (note to self: get someone stronger than me to loosen it slightly so I can turn it in an emergency), so went for the 2nd stopcock instead. I don't like using this one; it turns the water off not just in my flat but in the flat upstairs too, which seems a little evil. However, they were all still asleep and I was estimating a two minute job, so decided to risk it. Turned it off - much easier than my own individual one -it has had some practice in the past when my neighbour has had leaks.

OK, over to the washing machine. Loosening the washer thingy (I don't do technical), water started sprinkling gently out of the sides of the connection. No problem, I thought there would be a little water in the pipes (as there is when I empty the outlet filter), so loosened it off completely, at which point my mind stepped out of my body to fully appreciate the sight of said body wrestling with what appeared to be a live water hose, gushing water at full strength, water which, I might add, was getting hotter by the second. I forced the hose back onto the connecting thing, forced it to tighten up, mopped my face, hands, arms, hair and knees, and took a deep breath.

I'm still trying to work out why I did what I did next. Which was to repeat the process, this time with the cold tap. Which gushed out with even greater force, covering the kitchen in a wall of water in seconds, before I wrestled it out of the catflap. I think I had some half-baked theory about how there would be more water left in the hot water tank than there would be in the cold tap. Actually I still think that makes sense. But I digress. Water is pouring through the hose and out through the catflap at high speed, hitting the fence at a velocity calculated to drench anyone standing the other side of it. I don't have time to hang about, I need to reconnect the water before my neighbours wake up, I need in any case to reconnect the water before the entire world is flooded again; I don't have time to find Noah and tell him to build a boat. So, gathering the leaping jumping writhing water snake, I pull it back through the cat flap and force it back onto the washing machine, hearing rather than seeing the water pummel holes in the new plaster, and registering with that part of my mind which has still left my body that Little Fish is now sitting behind me saying "Mummy shower, Mummy SHOWER, WHEEEEE" with great enjoyment.

Summoning the strength I usually save for things like picking Goldy up off the floor when she has fallen out of bed, or righting overturned powerchairs, I make the connection finally, and the wall of water becomes a sheet, and then a storm, a shower, a drizzle and finally settles to a drip. It is at this point I notice the two little isolating taps on the pipes which connect to the water hoses...

I turn the stopcock back on, noticing as I do how easily it turns, and how I seem to be able to turn it in both directions. I then, gently, turn the little taps on the pipes off, disconnect the water hoses, clean the filters as directed to in the manual, reconnect the hoses and turn the taps back on.
And start the mopping process. Pass the flippers (you were wondering where they came in, weren't you?
Gathering Little Fish, I then headed for school for wheelchair and orthotics appointments.

LF's wheelchairs first. Her power chair has been confiscated, there's a problem with the controller and it needs replacing. This would be a simple process, except that the power on her chair has been toned down, so the new controller will also need reprogramming, and the reprogrammer is not easily available. Her manual chair stays with her for now, but there is an agreement that it is hopelessly large for her. This is not good for her dislocated hip. However, it is the smallest chair currently supplied by the local PCT. So we now need either to investigate charitable funding for a super whizzy lightweight chair for her, or we need to change policy. Neither will be fast. See side note in the middle of the flapjack post for the new additional complication.

Orthotics for Mog next. It is agreed that she should not be cast for any more AFOs (Ankle Foot Orthoses), but will instead be given a pair of Piedro boots with a retaining heel strap, for use in her standing frame. As an additional complication, because our life would be boring if it were simple, it has been so long since Mog was standing (due to her operation) that her standing frame has now been commandeered by another child, so there is at present no suitable frame available. And no funding for one either. Sigh.

Orthotics for LF - one of her AFOs has been confiscated to be fitted with an additional strap. It is possible that this may help her foot position and prevent the need for surgery which would be nice.

Wheelchair for Mog, and for once things do go smoothly, her footplate is raised the necessary inch, and we are free to go.

Except that LF and I are not free to go. Remember that babysitter? She is due to meet Mog from school, as LF has an Orthoptics appointent (makes a change from Orthotics and Orthopaedics) at hospital. We still have two hours before the appointment, however Mog needs the door key to get in with her sitter, so LF and I have no way of getting back into the house. So instead we go and collect some bits and pieces from Argos, potter around a couple more shops, and are just thinking about finding a cup of coffee before the appointment when my phone rings. It is the orthoptics people. They have just noticed she already has an appointment with them at school in three weeks' time. So they'd like to cancel this appointment.

This does make sense. Except that now we have nowhere to go, still can't get in at home, and have booked a babysitter. What do you do under such circumstances? Head to the local fabric shop, that's what. Where, we notice as we walk through the door, there is a big sale on all craft fabrics. Not a bad way to spend time (and money).

We get home, having managed a Tesco run too, and it's on to teatime, bathtime, bedtime. Mog disagrees. She has been sitting up with me as I write this. We are weaning her off one of her anticonvulsants, and she seems to be waking more the less of the drug she takes. This is good during the day. Less useful at night. Tomorrow we start the next drop. This had better not wake her up even more!

She has however just started a seizure run as I type, so I had better down tools, up meds, and pop her into bed.
Take care,

Tuesday, 22 January 2008

Paranoid, me?

You never know who might be watching.

Trina and I have been chatting about crocheting. Lots. Trina has of course been a busy bee, beavering away at making some beautiful beanies. I have been sitting stabbing my crochet hook into my wool and muttering incomprehensibles under my breath. Figuring out the difference in US/UK stitch names helped somewhat. Translating the hook sizes helped a huge amount. And finding left-handed instructions helped even more. Unfortunately (for my bank account); I then realised that US "Worsted weight" is in fact UK "Four ply". Not Super Chunky or even doubleknit. So none of my yummy new wool would be right (setting aside the minor "needs to be cotton" issue).

Since Little Fish was in her powerchair, we couldn't visit our local wool shop. Instead we drove to our nearest HobbyCraft . Which just happened to have a sale on. Oh dear. Choosing to view this as an opportunity, I stocked up on cheap and irritating complicated craft gifts for children we don't know yet presents for future Birthday and Christmas presents.
Mum always had a box of gifts on the top of her wardrobe; little things like stickers and transfer sheets, and larger things so she was never at a loss when an unexpected Birthday came along. Now I have one too. Did find some wool too - thankfully the choice was very limited, so I came home with just a couple of new balls.

The next day, I took Little Fish into school for another medical appointment. We've had a lot of them this month. As I walked into the classroom, the physio stopped me. "Hi Tia, I just thought I'd let you know, I'm crocheting flowers for a project this week, would you like me to show you how?".

How does she know?
Paranoid, me?

Monday, 21 January 2008

Broken Record

"You need to stop when you hit something, especially if it's me"
"Back up and go around"
"You need to STOP when you hit something, especially if it's me"
repeat every five minutes until the school bus comes.

Little Fish has no feeling below her waist, she genuinely doesn't understand why running over my feet hurts me. I could show her the bruises but she thinks they are pretty and I don't want to give her ideas!

How is it though that my conversation seems to be commands - the above conversation, or variations including "Please close the spoon drawer, put the spoons back and close the drawer, pick up the spoons and put them back, then close the spoon drawer", or "Turn off the taps, turn off the taps, turn off the taps and come away from the sink (insert above stop/back up conversation here)" whereas Little Fish's own efforts at repetitive conversation include "I need a cuddle" "I need a kiss" "I need a squeeze" "I need to go WHEEEEEEE!"? How does she get to be the cute one and I get to be the boring ogre issuing decrees and stopping her fun?


Sunday, 20 January 2008

Scene from my settee

I'm thinking car mechanic? Pot Holer? Monster under the bed? What do you think of her future career prospects?

And look at that little drawn up leg. Looking at it like that, bent up, twisted out, shorter than the other one, it's obvious that it is dislocated. Why didn't we notice it before? Well, because it's been like that for months. And we have had it x-rayed before, in that position, and it has been absolutely fine. Still, I can be thankful. She is not in pain. It does not bother her at all. She is more mobile than ever before (witness her explorations). And she is my daughter.


Saturday, 19 January 2008

How does she know?

Last night, I settled Mog into bed, in a very happy giggly mood, put her music on, and pottered about the house doing a bit of a tidy. Then sat down at the computer and pootled about on the 'net for a while, had a nice long bath, read in bed. During all these activities, noisy and quiet, I could hear Mog's sleeping breaths - there is no sweeter sight than a child asleep at night. All calm, sleeping sweetly.

I turned off my bedside light and she began to cry. Now there is no way she can see any light in my bedroom from her bedroom, and it's a silent switch, I was already in bed when I turned off the light, and had been for a while. Yet this is something she manages on a regular basis. How does she do it?

So, light back on, sorted her out and made her comfortable again, gave her some sleepy medicine, popped her music back on and crawled back into bed. Peace.

This morning Mog woke me up fairly early (very early for a Saturday!) crying and uncomfortable again. So I sorted out her morning medicines and tried to resettle her; not going to happen. Lots of cuddles, lots of rocking, and some really fantastic communication - she told me she was feeling sick, tummy ache sick, and also her hips were hurting. So dosed her up with some painkillers, laid her out on the settee to empty her stomach for her (she cannot vomit orally), she then wanted a blanket and settled back to a beautifully peaceful sleep.

I watched her for a while, carried on with my computering, put some music on, turned it off, generally alternated between early morning pottering and sitting quietly. And then decided it was definitely time to get up properly. The very instant I stood up to get dressed, Mog woke. How does she do it?


Friday, 18 January 2008

Talking to parents.

Patyrish has posted a list of things not to say to a special needs parent over at her blog, My New Normal. I think our dietitian and nurses could do with reading it.

I have to say, I like it when children ask questions about my girls. I'd far rather children had their questions answered (although it still makes me giggle when their parents tell them a nasogastric feeding tube is "full of oxygen" - yes folks, that's right, the little Y port at the top is actually the world's smallest concentrator, and that syringe full of what appears to be bottled water, the one I'm pushing though the tube, that is in fact liquid O2. Let them ask, I'll answer. As Patryrish points out, I might not answer in huge detail, if I'm tired or in a hurry, but ask me on a good day and your child (and you) will learn more than you could ever wish to know about enteral feeds.

I'd far rather your child looked and asked than just looked and stared. It's natural for children to ask questions - adults, you could perhaps have a little more discipline and think slightly about the impact your questions might have. But if my daughter is the first child your son has seen with a long plastic tube up her nose, then it's natural for him to ask about it. Children who come up and say hello aren't bothering us - although I must admit to having been bothered a little by the child who ran away screaming that my daughter was dead because she didn't answer. And I must also admit to having been caught cackling with laughter on more than one occasion when a child who has started walking backwards in order to continue to stare at my girls has walked straight into a lamppost/parked car/large muddy puddle. This makes my girls laugh too, so I suppose I should thank you for providing our entertainment - only fair really since we were providing yours up until that point!

If you want some specific conversation tips for my girls, Mog will almost always be pleased to receive a compliment on her shoes or her hair (and almost certainly kick you if you fail to notice her new shoes). Little Fish would probably prefer it if you didn't notice her at all - ignore her and she'll come to you, pounce on her and she'll panic. Unless you're a little boy, in which case she'll chase you and love you and giggle at you forever.

One thing I'd say as a general please don't - please don't insist on telling me, over and over again, in front of the girls, what a saint I am, how wonderful I am, how hard my life must be - think about what you're saying. I know you mean well, but in fact you are pointing out your assumption that my girls are a huge burden to me. They're hard work, I don't deny it - but so are any children. And I don't want them hearing the whole time how wonderful I must be for taking them in/taking them on/giving up my life to be with them. That isn't how I see it, and it isn't how I want them to see it either. I chose to have my girls, I love them, they enrich my life immeasurably. There is nothing sweeter than Mog's giggle, than Little Fish's arms around my neck, than the fact that Little Fish's first concern every morning is "I need a cug-cug Mog", and that Mog's first big grin of the day is saved for Little Fish's kiss.

Do by all means tell me how wonderful the girls are! I'll take any amount of that! Not as in "what a testament to your hard work" but as in "I see their gorgeousness". Perhaps you don't. Perhaps you do only see the hard work, the things they can't do. I'm genuinely sorry for you if that is the case. Because my girls are fantastic; they've changed my life, and they are changing the lives of other people who meet them. Mog brings Love. Little Fish brings chaos and determination and Passion.

When I moved from having one disabled child to having two, things changed a lot in my life. My house is no longer my castle; I have people coming into the house regularly to help with care, to help me keep the house clean, to inspect the house and the girls and myself (fostercare regulations). I was fiercely, proudly, independent. No help needed here, I can do it all myself. Once I had two children and one of them was no longer a baby, truth is, I couldn't. I can push two wheelchairs on level ground, but getting both girls across a road is a bit like the old puzzle about the man with the boat, the chicken, the fox, and the hay. I have had to rely on the kindness of strangers. And strangers have been very kind. People open doors, people push one of the girls across the road for me, move displays in crowded shops, carry trays in cafes, stop to pick up dropped toys. We live very close to our church , and always someone will walk home with us to help push one of the girls. One of our neighbours, who is not a church goer, nearly always times his Sunday morning paper run with our walk up to the church, and will push one of the girls there for me. Today I had a visit from the children's worker at church, planning how to include the girls more effectively in their Sunday School classes for the following year. People care.

These are all helpful things. Don't be afraid to offer help, if you have help to offer. But please don't be offended if we thank you for the offer and refuse the help. For example, right now, our babysitters need to be nurses or know about the girls' medical needs. I can't accept casual babysitting help from a 14 year old; the responsibility would be too great. I would love it if that same teenager would be interested in spending an afternoon playing with the girls whilst I get on with something else, or would like to come on a day out with us though. It isn't that I don't trust your daughter, it is that I know how quickly things can go seriously wrong with my girls.

Similarly, holding doors open is very helpful. But do please check we actually need to go through the door - sometimes we're just walking past! And also, when you hold the door open, it is most helpful if you can stand behind the door. If you stand in the middle of the doorway, pushing the door with your arms, we have to somehow walk through you to get through the door. I understand that walking through the door first seems like bad manners, but I'm also very uncomfortable about ducking under your armpit. Especially with a child who is still learning the finer points of driving her power chair!

Thanks for listening.

Thursday, 17 January 2008

Cats and Little Fish

Little Fish is scared of cats. I like them. I'd almost go so far as to say a house is not a home without a cat somewhere. Before Little Fish came along, we had a wonderful cat called Henry. He moved out when the ceiling fell down on Bob, and we've been catless ever since (he wasn't hurt, just shocked, and he moved to a house further down the road where he lived happily for a couple of years. He seems to have disappeared completely now).

Last night I visited friends who have just had kittens. Not personally; perhaps I should say their cats have just had kittens. They keep pedigree cats (British Shorthair), and have three seriously cute baby kittens, two creams and a blue. Beautiful. Cute. Fuzzy. We won't be getting one of their kittens - apart from anything else, Bob still has not finished and I'm not introducing a cat into this building mayhem. But we are working on Little Fish slowly; last weekend she even managed to touch one of my parents' cats without breaking into a cold sweat. Progress.

Meanwhile I remembered why a kitten might be a bad idea. Especially when combined with Little Fish's willingness to "help".
funny pictures
moar funny pictures

We'll see.

Dear Dietitian

Thank you for seeing my daughters in clinic this morning. I appreciate the time you took to read their notes before seeing us, and I appreciated your ability to talk directly to each child, not just to me.

That said, I would like to tell you how upset I now feel after our appointment.

You took Mog's weight and were happy that she has put on weight. I am too, it's good news. However, I wanted you to look at Mog's weight in relation to her height. She has grown a lot recently, and as a result is very skinny. You did not do this, and would not look at her ribs, focusing instead on your chart, which put her nicely on the 25th centile. I know that she's on the 25th centile for weight; she has been for a very long time. However, she is five, and wears clothing for children age seven - she's very long. Surely then, to be in proportion, she ought to weigh rather more than she does?

I realise you are new to my girls, and that there has been a vacancy in your post for several months. But there were specific concerns raised back in the autumn, and I was hoping to deal with those today. You did not have that information to hand, so now we will have to wait again.

Next, Little Fish. Little Fish is overweight. Thank you for calling it "well covered"; I did appreciate it. I know that she is overweight. I'm not sure how to put a toddler on a diet, not when she already has an extremely healthy diet, that's why we wanted to see you. You said that she must not have cows milk any more, but that she should instead have a special medical formula. One which is higher in calories than cows milk. How will that help? I told you what Little Fish eats on a typical day; half a weetabix with a tablespoon of fruit puree for breakfast, a tablespoon of pureed savoury - made up proportionally of a little meat, a little potato or rice, and a lot of vegetables - and another tablespoon of apple puree or a mashed banana, sometimes a yoghurt for lunch. And the same again for dinner, with the addition of a small piece of chocolate. More stewed fruit as a snack, if she needed it.

You appeared to be listening. But then told me that she needs to eat lots of vegetables (she does, I've just told you this), lots of fruit (again, I have just told you this), and that she should "fill up" on fruit. She doesn't ever feel full - she has limited sensation in her stomach. I told you this too.

I feel strongly that you did not hear what I was saying. You looked at me. I am overweight. I know this. I am overweight because I eat too much (why I eat too much, well that's a different issue and a much longer post). It does not render me incompetent in the kitchen. I am well aware of how to give children healthy nourishing meals. I fed Goldy for years, and despite being immobile, and having eating as one of the greatest pleasures in life, she was not in any way overweight. I know how to cook for children. I know what children need to eat in order to sustain life, in order to put weight on, and in order to maintain healthy lifestyles. I also know what foods to avoid. Little Fish has never had any kind of junk food - she can't; it doesn't puree. She doesn't eat biscuits or cakes or popcorn or crisps or chips or deep fried anything- she can't.

What I needed was advice on how to feed her a diet which gave her everything she needed without causing her to put on more weight. If I cut her food down further I am worried that she will not be getting sufficient fruit and vegetables. If I cut out the meat and dairy, cut out the potato and just leave the fruit and vegetables, that's not balanced either, is it?

I didn't need a basic lecture on healthy living. I am well aware of that. I needed some specific suggestions for how to help Little Fish. I know that she receives all her liquids via a tube. But that is simply a method of delivery. Her cousin the same age drinks her cows milk. Why are you insisting that Little Fish has a jar of artificial paediatric formula instead? One which is higher calorie than the milk you are so worried about in the first place? I know she is less active than her cousin, she receives proportionally less food than her cousin to compensate. Her cousin has two weetabix in the morning, Little Fish has half of one. That continues throughout the day.

I would appreciate it if you could get back to me with some advice tailored to Little Fish's needs, rather than targetted at my own weight issues.
Many thanks,

Wednesday, 16 January 2008

Hip Op Replay?

Mog had major surgery in September. She's been recovering ever since, found her legs again fairly recently and enjoys kicking me anything in reach. She's doing really well. Yesterday we had a follow up appointment, a hip Xray and a consultation with the surgeon. He's very happy. She still has pain, she still needs to sleep in her brace, but he's more than happy for her to start taking some weight again and for us to be led by her as far as physical activity is concerned. Hurrah.

Little Fish also had a check up appointment yesterday. Same surgeon. This is the appointment she should have had last week. In my innocence, I had assumed someone with sense had rearranged her appointment so that it would coincide with Mog's. But noooooo. Since I had still had no paperwork telling be about the appointment by Monday, I phoned the surgeon's secretary to find out what time she would be seen. Imagine my delight at being told her appointment was the first of the day, at 8.50 again. Mog's appointment was not until 11.30, our carer was arriving late as she had to see to another child first, so getting to hospital for that time was really not feasable. Nevermind, we will race as much as we can, and I will have time for a nice hospital breakfast between their appointments.

We made it. Just. Two minutes to spare. I suppose it was therefore inevitable that the notes would not have been sent down to the outpatients department for some reason. However, eventually Little Fish's notes arrive, and we are sent down to the X-ray department. I heft her onto the table, strip her off, don my lead apron, deny any possibility of pregnancy, and hold her down for the vvzzzzt of the X-ray machine. Redress her, steer both girls back to Outpatients, and wait to be called. Little Fish likes the orthopaedic hospital. The little shop which sells chocolate is just next door to outpatients, and the doors are automatic. I therefore spend considerable time chasing her back into the department and foiling her attempts at shoplifting.

Eventually we are called in to see the consultant. We talk about Little Fish, and then I head back to reception. Mog's notes have arrived, and she does indeed need an X-ray (I could have told them that, in fact I did tell them that). So, back down to X-ray, same radiographer, same procedure. We've only been away an hour, she still has to ask me again whether I might be pregnant. I tell her I've been a little busy, re-don the lead apron, strip Mog off, hold her down. Vvzzzzzt! Hold on, it hasn't gone low enough, they can't see the bottom of the pins in her femurs. Vvvvzzzzt again and we are done. Just in time - Mog is giving a fine example of why we don't lie her flat on her back.

Back through to Outpatients, back to the receptionist. Do I have time to visit the canteen? No, the surgeon would like to see Mog next. Or she could put another child in but then we'd have to wait. No thanks, I'll survive without coffee for another half hour or so.

We see the surgeon, he pronounces Mog healthy, and we are released for another three months. Well almost - you'll notice I didn't mention what he found when he examined Little Fish.

He asked me if I'd noticed anything about Little Fish which was concerning. I pointed out a rib which had become more prominent in the past couple of weeks, and her left foot which is now very flexed, no matter how we splint it. He showed me the X-ray. Little Fish's hip is completely dislocated. As she has no feeling in her legs, this hasn't been causing her any pain. This is a blessing, since it could have been very uncomfortable. And a curse, since a little pain might have warned us that this was happening. There were no obvious signs. Now the surgery Mog has just been through will probably not work for Little Fish; Spina Bifida works differently to Cerebral Palsy and I'm still learning. So instead he wants to book Little Fish in for some exploratory surgery - inject dye into the joint and see what is going on. He will at the same time snip the tendons in her feet which are causing it to flex. And he will refer her to the spinal consultant who will review her spine as this is likely to be causing the rib deformity.

This has come completely out of the blue. In 2 weeks' time Little Fish has surgery scheduled - a long awaited operation to fit a feeding tube directly into her stomach to replace the tube which has lived up her nose since she was a baby. A minor op, but with Little Fish's breathing problems, no anaesthetic is minor. We had thought that this would be the only surgery she would need until she is about six, when she will have various different surgeries to give her a semblance of continence. And now we learn she'll have to have another anaesthetic soon to take a look at her hip, potentially followed by more surgery to put it right. Whilst I would be happy to leave it out as she does not walk or take weight, and she has no feeling so is not in pain, there is a problem as her other hip is firmly in socket. One hip in and one out is not good news - it will twist her pelvis and her spine will twist to accommodate that - this is probably what is causing her rib to stick out, and what causes the lop sidedness people have previously assumed was just poor positioning.

So for now all we can do is make sure that Little Fish's position is good whenever possible. Adjust her various chairs to make sure they support her properly, look at how she sleeps at night, watch her when she is wriggling around on the floor. She can fold those floppy legs backwards and upside down and right around. Probably not a good thing to be doing.


Tuesday, 15 January 2008

Crochet away!

I may have mentioned my fabric explosion. Sewing is great for keeping hands and body busy. But the machines are noisy, meaning I can't use them at night, and they are big and heavy, so I can't take them with me when we go to hospital or away.

I have a wonderful knitting box. It was my grandmother's, and still has many of her old patterns and women's magazines from the '60s and '70s. I can't imagine ever wanting to knit up a pair of woolly britches, and I cannot figure out how to do cable stitch either. But I love the smell which greets me when I open the box; slightly musky, wood and wool and paper and just the faintest hint of Grandma. And I love the fact that my needles were her needles. Her fingers flew across the wool; whether she was knitting or crocheting even the biggest project visibly grew through the course of the afternoon. I'm a lot slower; I have to be content with measuring my progress in inches rather than feet. But I still enjoy it.

When Goldy died, I reached for the needles and made a very boring plain brown blanket. I don't know what we'll do with it; it's long and narrow, too wide for a scarf, too thin for a lap blanket, too ugly for a baby. Little Fish will probably annex it for her dolls. Or possibly to carpet a pretend play house.

Over the weekend, Trina sent me here. And here. And here! And we sent each other to lots of different places courtesy of You Tube (search on crochet, far too many to list). Which inspired me to put my knitting needles away and dig out the crochet hook. This lady's you tube video clips were really helpful in helping me figure out what I'd forgotten (turns out I was trying to knit with a crochet hook. It doesn't work.

Inspired, I went off to our local wool shop to pick up something yummy. I don't have a wool stash (yet!), so am forced out to the shop. Oh the hardship. Forced to go shopping. In a craft shop. Awful! Imagine my feelings when I discovered the shop had a sale on all their wools. All their discontinued ranges were marked down. A lot. I now have the most yummy Rowan plaid yard, seven 4oz balls for the price of 2, five balls of pale blue alpaca silk for the price of 2, and two packs of ten balls of baby double knit, one cream, one white. We have a lot of babies due in our family over the next six months or so, and these wools will be perfect. Not right for crocheting, but hey, can't have everything, right?

So, do I go back to the wool shop and fill another bag with bargain wool, running the risk of finding even more knitting projects, or do I give up the idea of crocheting for now, and run with the knitting instead? I definitely want to have the crochet down pat before Little Fish's hospital trip - a ball of wool and a hook take up less space and are less pointy than a pair of long needles. But if I go back I just know I'll end up with more packs of bargain knitting wool. I wonder if I should just risk playing around with the silk - it's so soft.

Watch this space!

Monday, 14 January 2008

A tale of three mugs

Once upon a time I went shopping. I found three big coffee mugs, beautiful, restful, comforting mugs with great big handles. I used these mugs as inspiration for my kitchen re-vamp, choosing cupboards and worktops and tiles which matched the mugs (didn't realise that until later, when I unpacked the mugs after redecorating).

Each mug has a word written on it. Hope, Dream, and Imagine.

My Imagine mug shattered a year ago. Maybe just as well, since I'd never have imagined everything the past twelve months would bring.

This morning I made coffee in my Dream mug, and watched as the contents dribbled through a large crack in the side and covered the work surface in hot coffee. Quite symbolic too actually; my dreams for this past year have not included quite a bit of the reality we've face.

But I still have my third mug. Imagination has been shattered and Dream has been chipped away, but Hope lingers on. My Hope is on the Rock, my eyes on the Cross. Tia

Sunday, 13 January 2008

So tired

I just typed out a long, whinging, rambling, self-pitying rant. And read it back, and it bored me reading it. So I have deleted it.

Suffice it to say,
I am tired.

Mog has finished the year more disabled, more fragile than she was last year.

Goldy has finished the year more dead than she was last year. I keep seeing little unexpected reminders of her. Not the photos, I'm used to them and I like them. Not the cards (which I must put into an album somewhen, somehow), but smaller things. - a hairband she used to wear, a piece of equipment she used to use A phrase which was one of her favourites, now being spoken by Little Fish. Speaking to people I don't see very often, and having to break the news all over again. Speaking to people offended because they weren't invited to the funeral. Speaking to people afraid to talk to me incase I mention her. Speaking to people who want me to mourn their way. Speaking to people who think I should be over it by now, and to other people who think I'll never get over it and seem to think any kind of normality is irreverent.

Little Fish has surgery in two weeks' time.

I am tired. And sad. And ache. And am going to bed.

Saturday, 12 January 2008

You can't have your cloth and cut it.

But I really wish you could.

I have a love affair with fabric. Until a couple of years ago I believed that the right way to purchase fabric was to identify a need, find a pattern, and then buy the right cloth for the job. I had the odd stash builder when remnants were too good to miss, and when projects changed halfway through leaving me with tatty remains opportunities for patchwork.

And then one day it all changed. I discovered the joys of fabric shopping on Ebay and found Wazoodle. And then our local fabric shop had a sale. Not just any sale, a mammoth sale with everything in the shop reduced by at least 50%. Everything. Patterns (really wish I'd stocked up on more of them at the time), fabric, notions. I think it's safe to say I went a little overboard.[a small selection]

Thankfully this fabric explosion awareness of the joy of stash building happened at the right time, and Bob was able to build around it.
These cupboards take up the back wall of the new sunroom. Deeper than the average cupboard, the side cupboards now store all that fabric, patterns, notions, books, everything else I didn't have space to dump anywhere else vaguely sewing related. The middle doors fold right back and hold my machines
Those shelves underneath are extra narrow and will eventually take all my threads and serger cones. One day. When Bob has finished using the sunroom as his own private workroom and finished tiling the kitchen.

It's a lovely room. Or will be. Just now, it's housing a collection of large and heavy tools, as well as doubling up as a drying room. But there's a spot all set aside for my rocking chair, there's a long deep bookcase for all my crafty books and knitting patterns, there are sockets galore for ironing board and inspirational music and general grown-up playtime activities. The long term plan is that this room will be both my sewing room and my sitting room; it opens off the playroom so the girls and their friends can create mayhem enjoy themselves in a way only children can, whilst my own friends and I sit in relative peace next door, in touch with the children but able to enjoy coffee safely. I can't wait.

Meanwhile just for now it is mostly draped in dustsheets, and I creep in in the evenings to think about all the things I'll be able to do in there when Bob has moved on. And look at all the fabric, and try to decide what to do with it all. Lots of it is easy - I have a large bolt of denim which gets used whenever we need emergency trousers (happens more often than you might think), pre-quilted batik which ends up as sleep sacks, yards of brushed cotton for bibs, and oodles of fabric I liked well enough to buy but am equally happy to see disappear made up into clothes or gifts for friends. Some of it is harder - what do you do with ten yards of bright red sweatshirt fleece if you don't want to make sweatshirts or jogging bottoms? But some of it I can't bear to chop up - what do I do with this? Just stored it takes up space and will gradually deteriorate. I have 8 yards of this
It is beautiful. Suedey - I think it's moleskin. Those leaves are each about an inch across and loose. Originally I thought I'd make myself a Christmas pinafore out of it, but I think I'd end up looking like an overstuffed sofa. It's not suitable for children's clothing (pattern too large), not strong enough for upholstery. I like to pull it out and stroke it, then put it away again. But that's not really what it's for. Any ideas?


Friday, 11 January 2008

And the rain it raineth every day

Poor Tom's a-cold.
Poor Tia has a cold, as does Little Fish, after our flooded out trip to Tesco yesterday. A happy discovery for us though; it is indeed possible to run a Tesco trolley up the ramps into our WAV (Wheelchair Accessible Vehicle); made for a much drier unloading. We did get the occasional odd look though.
Yes, we returned the trolley - or I did; Little Fish sat in her chair and guarded the shopping.

Home James and Little Fish continued to perfect the art of unloading the dishwasher.
Now if I could just get her to reach a little further, to unshuffle the drawer.
But I'll take what help I can get; and she's certainly very keen!

Meanwhile I took advantage of the fact that it was cold and wet and we had done our duty by leaving the house to go shopping and decided I deserved thisTrina, this is a genuine Pork Pie. And here's the insideYum. Seriously delicious! And just right to chase the chills away. Little Fish however preferred the apple sauce. She's eating it by the bucketload at the moment - wonder how much counts as an overdose?

More rain today. A very lazy day today in fact; Mog trundled off to school and Little Fish and I pootled about inside - she didn't get dressed until 11.30 and was very happy just playing with her toys. I'm working on persuading her to put them away as well as take them out; this is a frustrating process because as soon as she sees something, that's what she wants to have, now, immediately, without any kind of discussion or argument. So I pass her whatever I was attempting to put back in the box and move to the next toy on the floor, at which point she scatters the original one and grabs that instead. Repeat ad nauseum.

Thursday, 10 January 2008

I've been tagged!

Seven things you might not know about me.

1. I used to be able to play the viola. Don't think I could do it now - I borrowed my uncle's viola to learn and he later sold it to buy a piano for my cousins. I do regret not finding the money to buy it from him when he was selling it - it was a beautiful instrument with a lovely tone. I suspect my neighbours are grateful though!

2. As a child, I organised my books into a library, had a book recording them all, and used to lend them out to friends. These days my shelves look more like this:

3. When I went to college age 18, people thought I was 30. I only lasted 6 months of a 4 year course. I am therefore the only child of my parents not to have an undergraduate degree; I am additionally the only cousin and the first in two generations not to have one. I do however have post-grad qualifications, which nearly make up for this in the eyes of those to whom it matters (not me!).

4. When I was 9, my family moved to California for a year. This gave me a lasting love for blueberry syrup (not available here), peaches and cream instant porridge (also not available here), peanut butter and jelly (again, unavailable here), and thick american pancakes (which I can make here, phew!). I guess I'm a breakfast girl!

5. We spent the last three months of that year camping, and camped our way up to Canada, down to Mexico and back. Good times.

6. I have been Baptised twice, once as an infant and once as an adult. Does this mean I get two places in heaven reserved for me?

7. I cannot tie shoelaces properly. I use a funny kind of double thumb knot which works but isn't correct, and I didn't learn how to do that until I was ten or so. I still can't tie a bow the "proper" way.

OK I tag Trina and Tina, Lauren and Laura. Mainly because I like the way their names sound together!

Wednesday, 9 January 2008

Why those tins will stay empty

She thinks they're great. I'm still thinking there must be something I can use them for.
Noises off as I post this: Little Fish has emptied the cutlery rack from the dishwasher into the spoons drawer. She has decided that completion of this task gives her ownership of the spoons drawer (I thought it was a cutlery drawer, and had more than spoons in it, but what do I know?) and is busy shuffling the spoons (some of which look remarkably like forks and knives (no not sharp ones) to me) around. Periodic silences as she pootles away from the drawer to find me, then heads back to the drawer to shuffle some more.

Remember the picture at the bottom of yesterday's post? The one with the swingseat on its own piece of decking? Here's how it looks after Bob and Mate have spent the day improving thingsI told you he was a perfectionist. It's not just the extra step, look closely at the edges and compare them with the ones which I thought were ok yesterday.

Today's appointment was rather more successful than yesterday's. They were expecting us, which is always a good start. First job at this appointment is always a weigh-in. I have been complaining about this for years. As Mog cannot sit or stand independently the only way to weigh her has been for me to stand on the scales and be weighed myself, then to stand there again holding her, and subtract my weight from our combined weight. A process which has me holding a wriggling child and involves my weight being shouted about the room as the nurses double check their mental arithmetic. Not dignified. Every appointment, I start my little spiel about how inappropriate this is. This time, as I started, they listened, and then grinned and brought out their new mobile hoist with built in scales. Hurrah!

The Dr was waiting for us and collected her notes from the nurse as we were hoisting Mog about - a huge change as normally we wait for hours - if I tell you that our appointment was at 10 and that I packed a lunch for the girls then that should give you an idea of our usual wait.

On through to the appointment and we have decided to try to withdraw one, possibly two, of Mog's many medications (the many medications of Mog might make an amusingly alliterative blog entry one day, failing that I'll just try to say it three times quickly). So now we're on seizure watch for the next few months. It'll be a very slow withdrawal; the aim is to have Mog off the medication by the time we next see her neurologist which will be in six month's time.

All this and only an hour's parking to pay for. A good day.

Tuesday, 8 January 2008

IKEA in pictures for Alesha

These boxes are BARNSLIGThe pink ones are fabric covered card, and are STRIKT. We went for pink for our princess, but they also come in beige, chocolate, and lilac.

The 50ml syringes are in the tin Mog's new boots came in (no photo of the boots as she's in school and I'm not!).The princess box on the right has Mog's incontinence supplies in - it didn't come from IKEA but was a gift last Christmas. Mog's special formula milk now fits into the bottom of her wardrobe, because everything which didn't belong to her is now in one of these boxeswhich are SAMLA and have rather handy castors on the bottom. They will be dumped stored in the garage on the new shelving Bob built last week, and I have enough of them to store all the spare feed and incontinence supplies too, just bringing out one pack at a time instead of having a months' worth or more kicking about the house.

This is Mog's new lampshade, or will be when I have managed to get it installed.It is a KAXIG pendant lamp. And will go beautifully with her overall princess theme and castle. The one thing we failed to get was a CD rack to go under her new CD playerwhich looks pretty good at the edge of her mural. Note to self: get those cables tidied up properly. The rack will ideally fit down the right hand side of the wall and cover the gap.

Then we also bought these smaller GLIS boxesand these magnetic tins
which I'm not entirely sure what to do with! Sorry, can't find the tins online.

Finally, a pic for Trina tooHere is the newest section of fencing Bob has built.

In less pictorial news, having confirmed our appointment yesterday, I got up long before dawn to get Little Fish ready to go. Mum took time off work to wait for the school bus with Mog, Little Fish had a little weep at the earliness of the hour, but we did nevertheless manage to leave on time, find the perfect parking space, and get to the outpatient's department in plenty of time to grab an Xray before our appointment.

So I suppose it was inevitable that the secretary could find no record whatsoever of Little Fish's appointment, telling us instead that we had an appointment on the 15th. Now this is when Mog has an appointment with the same Dr, so I suspect someone has helpfully combined both appointments for us. That much makes sense. What does not make sense is not bothering to inform us (or the appointments department) of the change in plan.

We drive home, steaming. However as we get towards home I realise I can now drop Little Fish off at school for the morning, and therefore have two hours to myself a whole week earlier than I thought I would. What will I do with all this free time? The laundry? The rest of the tidying up from yesterday? Or pour a nice cup of coffee and catch up online for a bit? I'm guessing the appearance of this posting will answer that for you all!

If anyone has suggestions for what to do with the magnetic tins and GLIS boxes I'll be interested. We're now looking for a nice shallow CD rack still, and some sort of storage solution for the bathroom. Mission organise has begun, one room at a time.

Monday, 7 January 2008

I love it when a plan comes together.

Unfortunately it doesn't happen all that often. Take today's plan for example.
Get up, get the girls up, get out of the house and into the bus and over to IKEA to celebrate the last day of the school holidays.

Our carer arrived at 7.30, halfway between our holiday time of 8 and our termtime 7am visit. Easing us back into our routine gently. Just as well, since tomorrow morning I need to be out of the house with Little Fish before 8.

So, both girls up and dressed and ready for the day by 8.30. We pootle around the house for a while, waiting until the traffic has died down a little.

9AM and I remember a few admin phonecalls I need to make. I know which hospital LF and I are supposed to be at tomorrow morning, but we could be seeing any one of half a dozen specialists at that hospital, so let's find out (and double check the appointment hasn't been cancelled). Quick phonecall to the hospice to try and book Mog in in March. My parents want Little Fish for a couple of nights, so if this comes together then I might actually have a 48 hour pass.

Bob comes back and I approve his plans for the day, LF creates a mini vortex of chaos in the kitchen and I clean the worst of it up, load us into the van and am amazed to discover it is already 10.30. Not entirely sure how that happened. No matter; we just need petrol and then we'll be on our way.

I pull in at the petrol station, wince at the price, but am pleasurably suprised by the lack of queue. Being later than planned has paid off. As I enter the shop I realise I haven't had any breakfast and so grab a ham and cheese sandwich and queue at the food and fuel stop. The manager and the assistant appear to be in the middle of a row. Apparently the woman who left the shop as I walked in has walked out without paying. Except that she has paid. Only, she's paid my fuel bill, not her own. This naturally takes a while to sort out, and involves four assistants chasing the woman to catch her before she drives off. Eventually it is fixed, and I hand my sandwich over to be heated up. The man before me at the till has also been waiting for a hot sandwich, his and mine are put into the oven together. And slowly slowly heated. Argument between the manager and assistant continues. Ping and the oven is ready, splat and my sandwich is spread over the floor. Another one is grabbed, the man who has waiting approximately 15 minutes for his wishes me luck, and I wait for the new sandwich to be heated.

20 minutes after I walk into the shop I am finally able to leave, and we are on our way.

An uneventful shop (sorry if that's a disappointment!); we get everything on our list (large plastic tubs for the garage, some underbed storage and a new lampshade for Mog), and a few things not on the list (chocolate, magnetic tubs and a hammer).

Home James, also uneventful. I unload the van, plug Little Fish into her somewhat late tube feed, and build the boxes and drawers for Mog's bed (all cardboard, no hard labour involved). Fired with enthusiasm, I turn out Mog's wardrobe. All baby stuff is thrown into one of the large bins, anything outgrown which will fit Little Fish is now not exactly folded neatly in her drawers but at least tossed into the corner of her bedroom, anything not belonging to Mog has been dumped in my bedroom along with everything else which doesn't have a home stacked in a corner awaiting decisions as to its future, all toys are stuffed under the settee in the playroom.

The new storage is filled neatly with 5 ml and 10 ml syringes, extension kits and bungs for her gastrostomy, gauze wipes, foam mouth swabs, syringe tips, all stacked beautifully in their own little boxes, so organised and so tidy, so clean, so unlike the rest of the house. In the tidying process detritus has naturally found its way through to the sitting room, the kitchen, my room, the bathroom; in fact the whole house is now coated in a layer of empty packaging, old cardboard boxes, out of date syringes, and the new lampshade, which inevitably turns out to be not simply a shade but a whole new light fitting, so will need some expert assembly by someone other than myself.

Never mind; it is now 6pm and the girls have been fed and watered. School tomorrow for Mog so an early night is in order; I can get them both settled in bed then sit down and relax for the evening. I'll ignore the chaos; it will still be there in the morning for me to deal with. Until my brain starts kicking into gear. It takes a while. First day of term tomorrow, hmmm that means tomorrow must be Tuesday. Now if tomorrow is Tuesday, that means today is Monday. Oh, that means Guides tonight. Ah well, the babysitter won't mind a bit of a muddle; she's used to it and if I time things right she'll even sort some laundry for me. Excellent. Except hmmm this is the first Guide meeting of term. That means no babysitter, that means the senior Guides and all the leaders are coming here for the evening to plan the term. Argh, that means that the girls will be arriving in a little over an hour; I need to get my girls to bed and tidy the house and somehow reduce the chaos to manageable proportions.

Into the black hole that is my bedroom go even more piles of stuff. Under the settee go more stacks of toys. Dirty dishes loaded into the washer in double quick time, girls filed into bed after the shortest showers ever, and as the doorbell rings, the last of the paper makes it to the green bin.

One Guide meeting happens, we plan our programme, and now I can sit and enjoy the blitzed house. Except that it doesn't quite look as good as it did three hours ago...somehow the instant tidyness has been undone over the course of the meeting; chocolate wrappers and felt tip pens are scattered across the floor, kitchen chairs and other bits and pieces are filling the sitting room. Oh, and I can't reach my bed from the door of my bedroom.

Best go and sort something.


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