Friday, 29 February 2008

'Twas on a Monday morning when the milkman came to call

And he came back on the Wednesday, before we'd drank it all. And then again on Friday, with a double load of the stuff; I hadn't the heart at 4 AM to tell him we'd got more than enough.

So - what do you do with 7 pints of milk?

I made egg custard.Yum. delicately flavoured with a sprinkling of nutmeg on the top. Perfection. Except it wasn't; it curdled in the cooking. I don't do well with baked custards. Tastes fine, just a little chewier than it should be, but is very definitely curdled. Too hot an oven maybe?

That used up one pint. Next stop, Butterscotch Pudding. Now this is usually one of my very favourite puddings. It comes up a beautiful golden colour, and tastes of, well, butterscotch! Only this time it came up lumpy, white, and gluey. I'm not quite sure what I did wrong. It tastes ok, but only ok, whereas it should taste superb.

Little Fish seemed to like it anyway. Mog and I stuck with the egg custard.

Had a bargain buy in Budgens on Thursday - little packs of baby courgettes were reduced from £1.79 to 20p. So we bought the lot. And made some rather nice courgette bolognese.which I whizzed up merrily for Mog and Little Fish, forgetting once again to leave any unwhizzed for yours truly.

Little Fish enjoyed that too. Although she did seem to prefer it mixed in with the Butterscotch Pudding, rather than separately. Odd child.Egg yolks having disappeared into the Pudding, this left me with two egg whites.
One of these cups has eggwhite, the other has water. Guess which one I grabbed to soothe my cracked and aching throat? Hint: I won't be making meringues any time soon.

In other news, I understand that Jophie has double pneumonia and will be in PICU for a while. I tried to phone the hospital earlier but apparently the room was empty. I know Trina will be appreciating your thoughts and prayers.

Your prayers please

I just found out that Jophie, the son of a dear friend of mine, is seriously ill in hospital. His mother Trina has also been ill over the past couple of weeks. I don't have any more details at the moment but Jophie is a poorly boy even when he is well, so he could really really use everybody's prayers for healing at the moment.


Thursday, 28 February 2008

Having a Jolly Holiday with Mary

It sounded like a good idea at the time. Let's go back to Florida. We had all our passport application papers filled out and ready to go, when Mog got ill again last week. Since we were in town anyway last Friday (getting Mog to her doctor's appointment), I decided we could use the Post Office check and send service rather than trying to sort out another lengthy journey to the passport office. Just as well, since the post office rejected one of the applications. Was it mine? A simple matter of filling out a new form correctly? Nope, too easy. Little Fish's; slightly more complicated but still only needing my signature and someone "in good standing in the community" to countersign the photograph? No, that, although slightly annoying, would also have been too easy. Instead, it was Mog's application which was turned down. Mog's, which requires information from four separate individuals, which requires a special attached letter excusing her from meeting standards for the passport photo, Mog's, the one I was expecting to take the longest to sort out anyway.

Infuriating, but so pleased we checked at the local post office rather than trogging off to the passport office, which would have been an all day trip.

Came home and tried to work out what to do. When we go in April, Mog's passport will have less than 90 days left to run. According to the US Embassy, this will not be a problem. OK, problem sorted, we'll just travel with her current passport and renew it when we get home. Except, although that's clearly what the US Embassy states, it isn't "received understanding" amongst people who advise us about travel. I'm inclined to believe the Embassy website over other people, but still a minor concern.

Problem number two with Mog's passport. The photographs aren't wonderful, but they are only wrong in one particular way. Everything else about them is right. That's probably as good as we are going to get. But they will only be valid for a month. Which means either I renew her passport some time in the next 4 weeks, or I start the whole thing again when we get back.

I'll almost certainly start again when we get home. But that means that there will be a period of time when Mog has no passport. Since Little Fish moved in 12 months ago, we have been wanting to take a day trip to France with my parents. We've also been trying to get up to the north of Scotland, to visit family up there - and realistically, flying is the only way to do this with the girls. Passports needed as identity documents for them. And then we're planning a family holiday in Italy in the summer too. So there isn't going to be an ideal time for Mog not to have a passport. Little Fish wants to visit her cousin.

This will be sorted. We will have a lovely time. There are reasons why we wanted to go back to Florida, and I know we'll have a wonderfully relaxing holiday once we get there. We've even managed to book a less stressful flight this time, and we aren't flying out just a few short weeks after a major terrorist-related incident (or we aren't yet; there's always time for one to occur I suppose but please no!). We are all booked to sit together on the plane (an issue last time), the girls are small enough to be carried off the plane so we won't have to wait for the heavy squad (an issue last time which almost caused us to miss our connecting flight), we have an apartment booked with a full kitchen, and we have a longer holiday, so more time to kick back and relax.

I have been fretting about the passports we sent off via check and send. The reason we wanted to go to the passport office was that the passports were guaranteed to be returned in seven days. Check and send takes two weeks, not guaranteed. I needn't have worried; the passports arrived today. We made it to the post office at 5.3o last Friday. That's impressively fast.

Which means that as of now, I have 3 valid passports. 3 return tickets and the promise of nice accomodation when we get there. A helpful airline. Insurance. Half the medical notes we need and I know the other half will be easily obtainable. Everything is sorted, everything is in hand.

So why am I so worried about it all?


Wednesday, 27 February 2008

Nappy rashes I have known

I should buy shares in Sudocreme. And Morhulin, and Metanium. We're quite fond of Waitrose "Bottom Butter" at the moment; smells good enough to eat. All vanilla and sweetness. Shame it doesn't do anything for the nappy rash really. Handy for dribble rash and dry skin though.

We get different rashes here. General overall redness, pretty little red spots, the occasional cracked and bleeding rash, and the horrible crusty ones. Thankfully most of the time it gets no further than the first two here. Which isn't bad, considering Mog is now on her second round of antibiotics and permanently on Movicol.

My hands smell either of Purell or of one of the many nappy rash ointments. Preventative mostly. We tried Drapoline a while ago, and I had flashbacks to my brief stint as a carer in nursing homes. Horrible times. Three staff, 27 residents, a weekly bath book, and hook as many of the residents up with catheters as possible to reduce the number of toilet trips needed. Doesn't do much to protect the skin though.

That was a horrible place. It was where I met my first bedsore - not just a sore but an open, festering abscess. I had to hold the old woman, confused and distressed (the patient, officially, although the same could have been said of me) whilst the one nurse in charge pulled yards and yards of stinking bandage out of the hole in this woman's buttock. The hole must have been at least six inches deep - I'm told it went from mid buttock right up to the bone, and was packed tightly with gauze bandage soaked in some healing unguent. As the nurse kept on pulling, I kept tight hold of the woman and tried to think of things to say to her. Aside from "I'm so sorry". One last week's dressing had been removed, a new gauze bandage was soaked, the wound washed out with saline, and then the new bandage poked, inch by inch, into the hole. Such pain. And so avoidable; if this poor woman had been turned regularly and cleaned and washed when required this need never have happened.

I don't want to end my days in a nursing home like that. I don't think anyone needs to end up in a place like that. Most of the residents just gave up, squatted silently in their assigned seat in the lounge or lay in bed in their shared bedroom, face to the wall. No chance of going on outings, National Health Service regulations stated that old people could not have their own wheelchairs if they lived in nursing homes, and the nursing home owners maintained they did not have the money to buy luxury items like wheelchairs. So the old men and women stayed still. Or were wheeled briskly from one room to another, deposited in the dining room whilst the wheelchair was whisked back to the lounge to collect the next resident. Dignity? Courtesy? Not likely.

This was my first "real" job. First job when I wasn't babysitting, first job where the work I did would pay the bills, put food in my mouth and a roof over my head. I had 30 minutes training, which consisted mainly of "don't put the nappies out until all the visitors have left; they don't need to see them". "This is the bath book, every resident must have a bath at least once a fortnight. Some of them will tell you they need one more often but they can't have them" and "They don't need to eat much, they lose their appetite when they get old". And that was it. My first task was to welcome a completely new resident, clean her up when she lost control of her bowels due to fright and disorientation, and show her to her new chair in the lounge. As I recall the loss of continence was clearly not a new thing, and her relatives had been struggling to deal with it for a while. She was sore.

As was "Edgar". A tiny little man, he preferred to stay in his bedroom rather than joining the others in the lounge. Evening came, and it was time to get it into bed. My first day, no manual handling training, just "oh he's light enough, you'll manage". So I measured up the distance between his chair and his bed, put one arm around his waist and the other under his knees, lifted him up as I would a baby, staggered over to the bed with him, and flopped down onto the bed with him - one of my arms still under his knees, the other still around his waist, my face therefore somewhere in the middle. "EEE lass", he said, startling me, since I didn't know he could talk "Tha's in't' reight place burra can't gerrit oop for thee". One shocked teenager putting the old man down and backing away slowly! How do you treat nappy rash after that?

Fast forwards a few years and I'm working in a residential school for children with profound and multiple learning disabilities. Here, we have one carer to every three or four children, and complain that the ratios are inadequate. They were, but I can't help comparing them to the nursing homes. We value children over the elderly, evidently. Here at least the aim of the school is to treat all pupils with courtesy, dignity, and respect. It isn't perfect. But it is a place where the majority of the people working there actively care about the people they are working with.

We get to do fun things, take the children camping and on days out, swimming and horseriding and trampolining (rebound therapy). The learning opportunities in the school are wonderful. And the many bottoms I wipe and clean and keep covered are, on the whole, in pretty good shape. We have one girl who suffers from a recurrent hot and itchy infection, and she finds it a great comfort (as well as hugely funny) to sit on a disposeable glove filled with cold water and carefully tied at the top. We have one lad with horrible eczema. But mostly, we manage, despite having some children living in plaster casts and body braces, to keep the many and varied bottoms all clean and rash free.

And now I foster. I've had children with the most dreadful rashes. We've had to sort them out slowly, over weeks rather than days. We've used air drying, we've used reuseable nappies and disposeables of different makes and models, we've used over the counter potions and high tech prescription ones, including a spray on second skin, we've used frequent baths and absolutely no water at all. All of which have worked sometimes and not at others.

Little Fish dribbles urine constantly as a part of her condition. She has a more or less constant little rashette if you will, it follows the line her urine takes before it's absorbed by the nappy and that's that. Mog has a bright red bottom, but no rash there. I plaster them both with more Sudocreme or Bottom Butter and wonder if I'm doing more harm or good. It smells better on my fingers than actual nappy contents though, so for now we'll stick with that.

Another pointless post brought to you by

Tuesday, 26 February 2008

To Dream, Perchance to Sleep.

I have a dream. My dream is that one day, I will be able to spend the whole night in my own bed, unaccompanied, and undisturbed. It's been a while.

Mog's latest lurgy has brought with it her own brand of sleeping problems - when she has a chest infection she struggles to breathe whilst lying down. Her bed is propped up at all times, but once she gets ill she usually needs hoiking out of bed and into her wheelchair sometime between midnight and 2AM. She'll then spend the rest of the night sleeping very happily in it. I'd leave her in her wheelchair from the start of the night, but it feels wrong somehow. She ought to be able to sleep in a bed. I haven't worked out yet whether that's more my problem or hers.

Little Fish's Nippy has been playing up a little too. In a new and interesting variation, it has started switching itself to continuous pressure, blowing a constant stream of air into her lungs, rather than alternating high and low pressure to allow her to breathe in and out. In fairness, it has only done this once. However I now have visions of it somehow exploding her lungs, and am forced to get up and check. It wouldn't actually explode her lungs; she'd open her mouth and let it out and then she'd rip the mask off and shout for me. But my dreams are slightly more graphic than that.

Then there are the daydreams. The dream that one day Bob will come back and finish working on the house. That one day my deeply pruned to the point of extinction hedge will burst back into flower. The dream that I'll finish all the admin I only remember after office hours, and get everything sorted and organised for our various holidays this summer. We'll not mention the definite-all-hope-of-sleep-destroying dreams about what happens if I don't get everything sorted and organised.

There are the "I've been reading too much and have now entered the world of the book" dreams - choose your books carefully here folks; a night at the Chalet School, or determinedly ignoring Gilbert whilst failing algebra, or sailing around Coniston Water is one thing; a night fighting vampires or sweeping chimneys is slightly less refreshing. And a night spent with The Provincial Lady or Parson Woodeforde is just plain disconcerting. And induces the inability to speak other than in short hand. Awkward.

These though are still better than the dreams which come unbidden in the darkest hours of the night, the dreams where more surgery is required and other complications arise and I am bereaved again. I'm not sure whether those dreams are easier or harder to wake from than the ones where Goldy is back in her bedroom being loud, and I'm getting up in the night as I so often did, to try to muffle her. It always takes a while in the morning to realise that I've been woken by a little voice shouting "Mum", not a loud voice singing and pretending to cough. To adjust to the realisation that the juddering is the ventilator vibrating on a shelf, not Goldy bouncing her bed against the wall. To be annoyed in a dream or desolate awake, which is better?

And then we'll move to the short little intense dreams which come in the five minute intervals between hitting the snooze button. Speed dreaming? Cameos? I'm on a plane with only three engines and we are hitting turbulence and bip bip bip bip it's 6.15, cancel that and I'm suddenly in a meeting in a job I had a decade ago and the phone is ringing and bip bip bippetty bip it's 6.20, cancel that and I'm up and drinking coffee, walking through my garden, taking a while to sit on the swingseat in the corner and enjoyingthe peace of the early morning, having a long conversation on the phone with a friend on her way home from work after a night shift; she's on a payphone so all to soon the pips start going and pip pip bippetty bip it's 6.25 and oh that wasn't a real cup of coffee, just another dream, drag myself out of bed and put the kettle on properly and the noise it makes as it boils is bip bip bippetty bip and now it's 6.30 and I really do manage to wake up this time.

All that dreaming, no wonder I don't have time to sleep.

Monday, 25 February 2008

Playing with fire

I have a plea. Parents, teach your children how to handle certain basic pieces of equipment. It is sensible to tell a toddler "don't play with matches" or "don't touch the cooker". But at some point between toddlerhood and adulthood, those children need to learn.

I'm a Guide Leader. Guides (Girl Scouts for my US friends!) are girls aged between 10 and 15. Tonight we were doing some badgework, in the course of which the girls got to set up and light gas stoves, light barbecues, toast marshmallows and bake bananas with chocolate. All good fun.

I'm 34. Does that make me old? I feel it sometimes. When I was a Guide, toasting marshmallows was a nearly weekly event. We used candles and toothpicks and it was our standard celebration. Birthdays, Trefoils, new girls, you name it, we toasted a marshmallow for it. The Guiders were in th same room but never actively involved. I remember the odd scorched thumb and an occasional burnt mouth - the temptation to eat that liquid lava far too early. But we all survived. I don't remember either that any of us went on to burn our own homes down. Although I'm pretty sure that a couple of girls in my class at school did in fact have an incident after burning their physics books in a rubbish bin after their GCSE exams. They weren't Guides though (or they'd have had a proper bonfire. With buns)!

Today we had to do some basic fire safety first. We had to explain why it was a bad idea to lean over open flames with loose hair. Why it might not be a good idea to run and skip and hop next to the fire. Fair enough; we tend to start any hot things activities with a brief reminder. But we also had to teach the majority of the girls how to strike a match. How to hold the match, even how to blow it out, and how it might be a good idea to blow it out before the flame reached your fingertips. We had to reassure teenagers that "don't play with matches" was indeed good advice for a three year old, but that learning how to strike a match was in fact a useful life skill once you were older. Unless you go camping, you probably aren't familiar with camping gas stoves, and we don't expect them to know how to use them instantly - that's why we teach them. But we don't expect the match lighting to be the complicated bit.

When we take the girls on summer camp now, we have to ask their parents to teach them three things before they go. They need to be able to peel a potato, light a match, and wash up (without a dishwasher). It is surprising to me how many of the girls, even the older ones, don't know how to do these things. I understand you don't want to make a small child into your slave. But are you really doing a child any favours at all by preventing them from taking any kind of responsibility? We also nearly always have one child who has never slept without a nightlight, and whose parents have not twigged to the fact that camping under canvas means no electricity, and therefore no light other than the moon and stars. But I digress.

You may have a dishwasher, but will your child when they leave home? Most student accommodation doesn't come with much more than a cracked sink and a drainer, ditto much first digs. You may not want your child to have to spend every waking hour hanging up wet washing, but it is something they might want to learn how to do before they leave home. And basic cooking skills - do you really want your child to be reliant on readymeals and takeaways?

Playing with matches is probably a bad idea. That's where Little Fish is at the moment. She knows she doesn't touch the matches; I know she's too young to understand why so I make sure they're out of her reach. She does however get to blow them out whenever I use one to light the stove. But she's 2. By the time she's old enough to be a Guide I sincerely hope she'll have been using matches wisely for several years.

Meanwhile, tonight we had the pleasure of teaching about 20 girls how to hold a match, how to light it, and what fun it is to watch marshmallows go from pudgy to oozy-squishous-delicious. We also had to remind them that running around the carpark in the dark is probably not a very wise plan - again, parents, isn't this a sensible thing for you to have taught your children before they reach us? But we'll stick with the cooking. The girls had a great time. The evening flew by, we had volunteers to help with the washing up - they get real satisfaction out of seeing how easy it is once you have a bit of hot soapy water rather than a cold damp dishrag. This is something Little Fish already knows.

So please, parents, teach your children some of life's basics. Yes, schoolwork is important. Yes, enrichment activities are good and valuable things for your child to be doing (although I pity the many girls we have who have fourteen or more separate out of school activities going on; when do they ever have the time to just sit and be?). But learning life is just as important. Not just so that they know how to do these things before they come camping with us, but so that they can do them when they need to. We the Guiders love teaching your girls these things - I love the look of achievement on a girl's face when she has finally skinned that whole potato, when that final bit of black has finally come off the bottom of the pan, when those scared hands have stopped shaking for long enough to strike a match and touch it to a candle wick. That's one of the reasons we enjoy being Guiders. But we do feel bad for you, for what you miss out on by not teaching them yourselves.

I have a friend who has Multiple Sclerosis. Relapsing/remitting, it means that there are times when she can run for miles and times when she is confined to a powered wheelchair. At those times, her four year old daughter is now capable of cooking basic meals. She knows to use oven gloves, she knows how to work the microwave, and she can put fish fingers and oven chips into a roasting pan. Certainly that's not something most children need to be able to do at that age, but neither is it beyond her capacities. It isn't something the child has to do on a regular basis, but it is something she can do when needed. So give it a go, see what your child can do for you. And maybe this Mother's Day you might just get something extra nice delivered to you in bed, not a slice of burnt toast!

I realise I talk about daughters. That's because I have girls, and because as a Guider I spend time with other girls. It isn't because I think boys shouldn't be doing this too. Teach your children, boys and girls. My brothers are fine cooks.

This is sounding preachy. Sorry. I'm not trying to tell you how to raise your children. I hope that I'm giving you something to consider, if you don't already include your children in lessons for living.


Sunday, 24 February 2008

unclean, unclean

Mog has been generous with her lurgy. She and Little Fish seem to be doing nicely now; it's yours truly feeling like something the cat dragged in. 90 minutes until our carer arrives, 2.5 hours until the girls are in bed and I can follow them. And school tomorrow, thank goodness.


Friday, 22 February 2008

Mum proposes, Mog disposes.

I had a plan for today. A big, important plan. We all three of us need passports before we go to Florida. Mine ran out in January, Mog's runs out in June and Little Fish doesn't have one at all. We're off in just over six weeks. If we take our application forms to the post office, we should get our passports back in two weeks, which in theory should be plenty of time. But I'm a worrier; I'm stressed about this, and I wouldn't normally book an overseas holiday until the passports were in my hands. So I made an appointment to go to the passports office and get them done that way - several hours in the car and a few more queueing and waiting, more expensive, but three passports guaranteed to arrive in just a week.

To that end, I gathered the necessary documentation. Medical letter excusing Mog from meeting the official standards for passport photographs (she can't close her mouth and look at the camera and hold her head up - actually she can't sit up either but we managed to fudge that with a cunningly disguised hand at the back of her head. Long wild woolly hair helps!). Signatures from a "person of good standing in the community" certifying we are who we say we are. Signatures and information from Mog's other mother to prove I'm not trying to kidnap Mog. Birth certificates, court orders, adoption certificates for Little Fish. All sorted and lined up last night.

Carer booked for this morning, lunches organised, bus refuelled and ready to run, company clothes all laid out and ready to wear. House in a fit state to be abandoned for the day. Etcetera.

And then Mog pulled her ace. She has been coughing mightily from her chest infection, a round of antibiotics has really loosened things up and she's producing nicely. But has not been otherwise ill with it. Until last night, that is. From 1AM Mog has been coughing and spluttering and generally drowning, miserable and uncomfortable, and needing to be sitting upright. She finally settled back to sleep at 6AM. Little Fish woke up at 6.34AM!

Mog woke up an hour later, pale and twitchy and obviously in need of another round of antibiotics. So instead of heading over to the passport agency we're heading into town to the Dr's. Able as Little Fish is, I can't rely on her to help Mog to clear her cough if needed when I'm driving, so I think a 10 minute drive is probably better than a 2 hour one. We'll just have to send the passports through the post - and I'll have to just trust they all come back in good time.


Thursday, 21 February 2008


Just one month apart. My niece was born in February 2005, Little Fish in March 2005. Niece was born in hospital, came home with her parents a few days later. Little Fish was born in hospital, had emergency surgery at one day old, spent several months in hospital, before being discharged to fosterparents for palliative care. Niece was an only child, surrounded by loving and delighted parents and grandparents; Little Fish was surrounded firstly by other very sick babies, later by a large fosterfamily, later still by our rather different family.

At 18 months old, Niece was chattering about different birds and animals, and able to identify the component parts of flowers and trees (leaves, petals, stamen, even!). Little Fish spoke her first word at 22 months.

Niece dances and skips and hops and jumps and bounces. Little Fish whizzes and whirls and beeps and bumps in her wheelchairs. Here, they are equals.

They are both now nearly three, both starting at pre-school very shortly, both are lucky enough to have a parent at home with them for the majority of the time they spend there. Little Fish has Mog, and has lived through the loss of her older sister Goldy. She gets excited when Heaven is mentioned and says Goldy's name. Niece has a baby sibling on the way, and remembers Goldy and Goldy's funeral, and has the questions of a much older child about the meaning of life and death.

Little Fish had a new word this week -Spider "Pie-Dah". Niece had a new word this week too - "Chlorophyll". She wanted to know what makes leaves green. Little Fish wanted to know when she could next eat apples.

I shouldn't make comparisons. Both girls are loved, much longed for and much appreciated members of the family. Both girls have their faults and flaws and quirks. Neither is better than the other, each has skills the other lacks. But I look at them both, and it is hard not to wonder how they will fare at school, and into adult life, will the world look kindly on them both?


Wednesday, 20 February 2008


It's a scary thing, being without the internet. I forget how much I rely on it. Shopping, admin, nine tenths of all my regular communication, research, reassurance. Full credit to the Tech Guys, they arranged to have my laptop collected the morning after I phoned them, and it was dropped back here again this morning, all fixed and shiny looking (they might have cleaned the screen for me though).

Meanwhile I made the always pleasing discovery that my back up computer won't cooperate with the router. It was not the best time to have an unplanned break from the internet. One sick child, one school holiday, one missing carer and my emergency back up sanity squad (my parents) away visiting my brothers. I should have known - one or other of my girls always gets sick whenever my parents go away.

Thanks go to Lauren for keeping my blog reasonably functional for the past week. And for visiting on Monday. Note to self: work out that mobile blogging thing - it's all very well dicta-blogging but I suspect it gets old fast for the friend pressed into service as secretary.

We've managed the week fairly well so far. Friday and Saturday preparing for Mog's photographer, Sunday with the photographer, Monday with Lauren, and Tuesday with Tina and co. Just need to find things for tomorrow and Friday now.

Little Fish is only normally in school two mornings a week, but she finds missing those two mornings very hard. Every five minutes now she's asking for the school bus. I try not to take it personally. I am not used to this though. I ought to be really; she's been here for a year now. But I am used to Mog's more gentle ways - she likes to be busy but she needs to be peaceful too, and is quite happy to spend time listening to music, having cuddles, and generally living life in the slow lane. Goldy too was perfectly happy to have a quiet day now and then; she did need the routine of school but she could manage up to a fortnight without it quite happily. And now Little Fish wants to be actively entertained every waking minute. It's great, but it's hard work. Mog breathes a sigh of relief once Little Fish has gone to bed for the night; we have a gentle half hour or so most nights just enjoying being still and silent together. It's not that we don't love Little Fish and her busy-ness; it's just that we both appreciate the respite.

I've had to break the news of Goldy's death (in August) to two people this week. Not easy. She's on my mind.

Sunday, 17 February 2008

Mog versus the photographer

Money spent on the garden: £60
Hours spent working on the garden yesterday: 4
Hours spent tidying house: endless
Seconds spent here by photographer before deciding to go to local park: 67
Hours spent in park: 2.5
Number of times photographer returned to car for forgotten equipment: 3
Look on photographer's face when upon returning home Mog finally smiles: priceless!

Saturday, 16 February 2008

Tia Mary, quite contrary

How does your garden grow?

This is being written in pieces - for some reason I'm now allowed to connect to the internet for about 30 seconds every 2-5 minutes. This is somewhat frustrating and definitely limits my communications!

Mog was feeling a little better this morning, and Little Fish has been bouncing off the walls these past few days, so we bundled up and took a trip in the bus. Tina's gift from yesterday inspired us, and we headed to the garden centre.

There's Mog, with a twinkle in her eye, kicking out at passersby and plant stands. Narrowly avoiding a pansy and crocus related incident, we load the trolley and head inside. Foiled in her attempts to create havoc, Mog subsides. This is a cue for Little Fish to begin ripping open seed packets. We'll be planting carrots, cress, and country cottage assorted florals then. I hope they like the windowbox, they'll not be separated now!

A quick lunch and we head out to plant up. I say we; Mog elects to sit in the warmth watching Alice in Wonderland, Little Fish therefore elects to divide her time between Mog and myself. She does fret when we aren't all in the same room together, doing the same thing. Ordinarily, this would not be a problem; I would carry on doing my thing in one place, Mog would carry on doing her thing elsewhere, and Little Fish would wear herself out get some exercise zipping between us. Handy, too; she'll come and find me if Mog coughs or if her feed needs attention. But, thanks to Bob's unfinished-ness, it's not at present possible for Little Fish to go through the door. Two small steps awaiting ramps block her way. What this means is that every 1.07 minutes I have to get up, bump her back up the steps to check on Mog, followed 29 seconds later by plaintive pleas to be allowed to return. Who was supposed to be getting the exercise here?

Finally the many bulbs are in; the seeds can wait for another day. The garden looks almost good, although what would have been more than enough bedding plants for our old borders has only covered a fraction of our new flower beds. But at least there are signs of life, and promise of more to come.

My hands hurt. Mog has a chest infection; it isn't standard practice here to take a culture unless things don't respond to antibiotics, so we don't know what's growing in her lungs. Nothing good, I'm sure. Little Fish has an infection in her stoma, awaiting results but probably staph/strep. Mog has MRSA - asymptomatic but best to practice good hygiene around her. What this means in practice is that I should be washing and alcohol gelling my hands after touching either girl. Add to this the general reasons why one might wish to wash ones hands, plus the great clumps of near-frozen soil from the garden, several antibiotic related nappies, oh and the broken dishwasher, and I think my hands have been in contact with soap and water almost longer than they've been dry. My bath tonight has finished them off - I am therefore off to slather them in very computer-unfriendly lotion and head to bed.

Oh, we made some rather nice peanut butter and chocolate chip biscuits (cookies) too. I forgot to add the egg. They still taste ok - a little more shortbread/melting moment-y than straight biscuits would have been, but good enough.

Friday, 15 February 2008

A rescue memory

You may remember that we have been having one or two minor cosmetic little changes major reconstruction work in our garden. And regular readers may also be aware that the chances of getting these finished any time soon are pretty slight. Imagine then, if you will, my delight at hearing these words "Hello, this is the photographer. We'd like to come on Sunday afternoon, and we'll be taking photos in the garden if it is fine". Oh deep and lasting joy.

Here are the alternatives. One, it is fine weather. We all troop outside to take photographs amidst a sea of mud, empty flower beds, dessicated shrubs and some nearly-but-not-quite finished decking. Two, it is wet. And we will have photographers roaming freely inside, looking for the perfect picturesque spot.

With that in mind, we set to to do some serious tidying. The sunroom has now doubled in size. Twirly curly which hang in the wind things have now found their permanent home in the apple tree. Spare furniture has been shifted around, we can now sit all three of us in the playroom so that all three can see the television at the same time. One day I'll find that freeview aeriel we were given and Mog will be able to watch her beloved Balamory again. Meanwhile the ever-growing stack of videos wobbles in the corner, threatening to concuss small children.

Hmm I wonder if I could make use of that? An accidental concussion might just keep Little Fish out of the way for a while. She's keen to help - over keen. I may have mentioned that one of her more regular jobs is putting the cutlery away. She knows exactly what to do, and after a fortnight without the dishwasher, she's even accepting spoons straight from a teatowel, rather than the entire cutlery rack. As it turns out, she has overgeneralised the concept. Seeing me tidying up, she rushes to help. I return to the kitchen to find Little Fish helpfully emptying the sugar bowl into the cutlery drawer. Excellent.

Meanwhile, a mysterious message on my mobile phone: "Stay in this afternoon". Tina has come to the rescue. When Goldy died, Tina offered a rose bush in her memory. We were going to collect this in March. Hearing about our plantless garden, Tina has converted this rose into something far more immediately useful. Mid afternoon, a van from our local garden centre pulls up, and four large wheelchair-proof pots are delivered, full of the most beautiful spring flowers. Daffodils and pansies, moss and ivy and conifers and undidentifyable (by me) little mini bits of shrubbery. All green and living, in stark contrast to the many pots of dead trees dried herbs currently scattered across the remains of the garden. Beautiful and practical and enough of them that I can't possible kill them all of can I? Or at least, probably not before Sunday. Whether the plants themselves last or not, the pots will remain and I can fill them with different disposeable plants according to the seasons. And will remember Goldy every time I do.

So thanks, Tina, and I hope I haven't embarrassed you too much by mentioning them. No photos just yet; I have computer issues and no chance whatsoever of staying connected long enough to upload them.


Thursday, 14 February 2008

Sunshine and shopping in April

It's a complicated process, sorting out a holiday with my girls. This morning I spent three hours on the phone to travel insurance companies, being turned down by one after another after another. So many of them were "happy to insure you but unfortunately we won't be able to cover any complications caused by seizures or breathing difficulties. Would you like to continue with the application?" Over and over again they were confused by my awkward refusal to buy insurance which didn't cover the main issues we were likely to face. The one insurer who was fine with Mog's medical conditions refused to cover Little Fish's hypoventilation.Finally having given up with the online companies I phoned the very last insurer in our Yellow Pages and we are covered. And for a sum which is less than the cost of the hotel; last time we went to Florida the insurance cost more than the accomodation.

After three hours on the phone spelling things out and wondering why the agents aren't taught how to pronounce medical conditions, we finally got a yes. Hurrah! Putting the phone down I made the girls laugh and jump by singing out "We're going on holiday in April" to the tune of John Brown's Body. I may have mentioned Little Fish's sometimes indistinct speech.
Me "We're going on holiday with April" Little Fish "Poo Poo".
Poo Poo
POO poo
Pooo Poo!
I do hope that isn't prophetic.

Meanwhile, drowning in phlegm here. Mog has a chest infection and I'm chasing after it with the suction caths. Little Fish is envious of all Mog's banging (chest physio) and keeps grabbing my hands and making me thump her back and shoulders too. Both girls are now on antibiotics with all the digestive joy that brings.

Roll on April! We're off to Florida having been invited to keep a friend company. Mog's excited; she wants clothes and shoes and remembers having fun last time. Little Fish is excited because Mog's excited. And friend Mary and I are excited about the idea of a fortnight in gentle sun, and will remember Goldy's pleasure from last time we went. Oh, and there might be a touch of Disney involved too...

Wednesday, 13 February 2008

How quickly things can change

4PM we had a meeting here about Little Fish. Mog was on top form, laughing and shouting and kicking her teacher, making sure she got her point across.

5.30 we had an emergency Dr's appointment for Little Fish; her gastrostomy stoma is infected so she's got oral antibiotics as well as the topical one we've been using for a few days. Mog spends her time at the doctor's surgery having a lengthy run of seizures, but nothing out of the ordinary and recovers without needing her rescue meds.

6PM home and doing the bed thing; Mog enjoys a bit of a cuddle and settles down.

9.30 she's unhappy, not sore, not fitting, just can't get to sleep. So I give her her sedative.

1AM I get up to have a drink and can hear her whimpering quietly. Go in and she's got a temp of 39 (102.2F), and is gasping like a fish out of water. Double dose of paracetamol and ibuprofen, a saline neb (the neighbours must love me; sounds like we're drilling for oil so I try not to do that at night) and her temp has come down to 38C, I give her a wipe over with a wet flannel and confiscate her duvet, and am now just waiting for her to settle down to sleep again.

Side note. If you have a SATs Monitor, and if it is a small fingertip portable one, do remember that it needs to be read the right way up. 98% is MUCH better than 86%!

It's half term next week and we have a week off school. She might at least have waited until then to get ill. Grumble grumble whinge.

UPDATE: 6.30AM and whilst I don't think she's been back to sleep, her temperature is back to normal, her colour is fine, her breathing is also back to normal, or normal with a touch of stridor at least, and she's grinning away having had Norah Jones on a repeat loop for the past four hours. So she's going to school today! Not as cruel as it sounds; if I let her sleep the day away she'll be up again all night, school is half a mile away so I can be there quickly if there's a problem, and as well has having a nurse on site, her teacher is a retired nurse. So she'll be in good hands. Now here's hoping Little Fish's antibiotics make her sleepy so I can get some sleep in too.

Tuesday, 12 February 2008

Embarassing moment number 24623

Little Fish calls my parents Gaggy and Daddy; she can't get her tongue around Grannie and Grandad. Daddy has now become her preferred term for all men, although there's a special emphasis on the word for her actual Grandad and for anyone who looks a little like him. Watching her whizz around supermarket aisles shouting for Daddy is a little embarrassing, but we've got used to that.

This morning she surpassed herself. Our school bus driver is a retired chap with a nice silvery head of hair, just like Grandad's. Little Fish likes to sit in our windowsill watching for the bus, and banged smartly on the window saying "Hiya bus" when it started backing down the lane.

Loaded her into her powerchair, popped her coat on, found Mog's coat and their school bags, and turned around to see Little Fish powering her way down the ramp from the front door and turbo charging her way up the road waving her non-driving hand with all her might and shrieking "HIYA DADDY!" at the bus driver.

I'm just pleased the neighbours know she's adopted.

Monday, 11 February 2008

The day I became a parent.

It wasn't the day I was approved as a fostercarer. It wasn't the day I met my first fosterchild, and it wasn't the day that first child moved in. It was a day about six months after that, when I was fostering a different child entirely. This child was a seriously gorgeous little cutie-pie. His parents supplied exquisite designed clothing, he had a little angel face, and a truly wonderful innocent joie-de-vivre, a complete trust in the adults around him. He was, for various reasons, hard work. But he was also delicious.

This little lad had been living with me for five months, on a shared care basis with his parents. I had him during the week, they had him at the weekends (and I had a variety of other children instead, to keep life interesting). I woke up early one morning and for some reason decided to check the child. Not something I'd usually do; generally he'd come and find me when he woke up. His little feet and his panting breath as he huffed his way up the steep staircase to my bedroom from his were generally the first things I heard each morning. A lovely way to wake up.

Back to the story. On this particular morning I woke up early. Much earlier than usual, and instead of simply turning over and going back to sleep I walked down to his room and checked on him. I found him having a lengthy silent seizure in bed. Not a common occurrence; in fact only his second seizure ever.

How do you explain that? The seizure was silent, and his room was on a different floor to mine, so I would not have heard him thrashing about if he had been? I choose to believe that God woke me when I was needed; over and over again since then I've had similar experiences with my fostered children. I have been woken from a deep sleep knowing that I needed to check Mog, and found her not breathing or with her head trapped in her bed. I have been nudged to check Goldy, and found her trapped on her back, silently vomiting. These are just the ones that stand out, the ones where there was nothing noisily obvious to wake me.

But that wasn't the moment I became a parent either. Instinct took over, I called 999, gave him his emergency medication (which was ineffective), threw some clothes on over my nightie and grabbed a bag for hospital. I held him down as the paramedics fought to get a line in, I hushed him as he fought the oxygen, I rocked him as he slept. And I called his birth parents at breakfast time.

I didn't become a parent when we reached hospital. I was still the carer, still the significant adult in his life at that time, but I was not a parent. It was much later that day when parenthood hit, when his father and I sat by his hospital bed. And it was only a very small moment that tipped the balance from carer to parent.

I sat by his bed, holding his hand and idly reading the monitors. I ate some surreptitious lunch (hospital regs against food on the ward) and thought about how long I had been up. By 1PM, I was acutely aware that I was wearing dungarees over my nightie, and whilst this had been acceptable at 5AM and odd but understandable at 9AM, it was definitely bordering on the scarily eccentric now. It was as the clock ticked over to 1.40PM that I became a parent. Sitting beside this child I noticed the time, and my ex-residential-social-worker (my previous job) mind said "oh, not long to go now; late shift starts at 2 so I should be relieved in about an hour and" and then I realised. There wasn't going to be a late shift, I wouldn't be relieved, I certainly wouldn't be getting time off in lieu or compensation for my disturbed sleep-in. As the second hand ticked round, I realised that from now on, I was a parent.

Until that moment I had still somehow thought of my role as residential carer, but with me working every shift. With a child here just Monday to Friday, I had pictured my shift not as 12 hours long but as 5 days, with my nights not as life, but as sleep-in shifts. I had considered time spent by the child at nursery or school as "time off", and resented work based interruptions to it (Sick child, the inevitable constant round of meetings, etc). Realising this was just the first step towards being able to give up my residential role and relax into parenting instead. But that moment beside his hospital bed was definitely the moment I became a parent. The rest I had to learn on the job, just like any new parent does.

It's interesting that the day I became a parent was a day when the birth parents of the child I was now parenting were present too. Parenting is not an exclusive business, especially in the world of fostering and adoption.


Sunday, 10 February 2008

The laundry time forgot.

Where to start? With the pile I found at the bottom of a bag in my bedroom, including a babygro belonging to the baby we borrowed for Christmas 2006? With the mountain of stuff we've brought back from hospital and hospice? The layer currently covering the kitchen floor, which was grabbed from the smaller pile in front of the machine and used to mop up after Little Fish's efforts at doing the dishes for me?

Somewhere offstage, someone is scattering soiled handkerchiefs and smelly socks, sending them floating down through the rafters until they settle in drifts in odd corners around the house. It can't be me; I don't use hankies. It is the same somebody who hides stained spoons and crusted knives, stockpiling them behind cushions on the settee creating boobytraps for the unwary, the same some one who steals odd socks and purloins my pillowcases.

The washing machine is now doing the washing it's supposed to do, but has forgotten how to do a silent wash. It is ordinarily so silent even when spinning that the bip bop bip bop bip bop it emits to let me know it has finished comes as a surprise each time. Only now it's not so much surprise as relief - the gentle satisfied hum has become a three hour squawk, the work surface rattles, plates fall off the draining rack (must get the dishwasher fixed), the floor vibrates under foot. The 17 minute final spin cycle now requires my assistance; I need to lean my full weight across the machine to stop it from walking across the floor and blocking the back door. It is definitely no longer possible to sling a load in at bedtime and rescue it first thing in the morning.

So the laundry mountain is growing daily. And in the meantime odd bits of washing detach themselves from it, suicide sock squadrons throw themselves under the wheels of Little Fish's chair, to die painful deaths wrapped around the castors. Kamikaze knickers wrap themselves around my shoes, and remain hidden until I answer the front door, when they reveal themselves, knowing their fate will be to be kicked into the flower bed as I point out interesting clouds to hopefully unsuspecting callers. Distressed dresses lie down to die, knowing that nothing now will ever remove the rhubarb stains. And my dressing gowns have flown the nest. I have two. They aren't in the waiting to be washed pile, they aren't in the waiting to be put away pile(s), they aren't under the settee, in the car, stuffed down the end of the bed, in a pile at the bottom of the wardrobe anywhere. I can only assume they have made a bid for freedom, and taken my bedroom floor with them. It too is nowhere to be seen.


Thursday, 7 February 2008

Pride goes before the pus.

I now have two girls with gastrostomy tubes. To those of you unfamiliar with the process, picture a pierced ear. Then instead of an earring, threat a thin plastic tube through the piercing. That's pretty much what a gastrostomy is, only instead of in the ear, it's in the stomach - up and to the left of the tummy button.

Remember getting your ears pierced? Those first few days, you have to turn the earring regularly, clean the ears scrupulously, and leave the earring in place to allow the piercing to form. It's the same with a gastrostomy, except that the stomach is not as clean as the ear. The piercing ends in a dark pit full of acid, and acid under pressure can eat its way back up through the new hole and burn the skin on the outside.

Mog's stoma (the piercing) is beautiful. Perhaps I have an odd idea of beauty; I'm sure most Miss World entrants would not consider a hole in their stomach to be an added bonus. But by beautiful I mean it is clean and dry, it is the same size as the tube which goes through it, it looks in fact like a well established ear piercing hole. You could leave it for a few hours without it closing up if you needed to.

Mog does get occasional infections. Her stoma was MRSA positive for a while, and may still be. Granulation has not been a problem for her (this is where the skin tries to heal itself and just grows and grows and grows around the edge of the tube). She gets the odd abscess which requires antibiotic cream, but once it has burst and drained, the stoma quickly reverts to its usual pristine condition. I have prided myself on this. Nurses have commented on how unusual it is to have such a beautiful stoma, and how it must be down to our care and cleaning process. I have seen quite a few gastrostomy sites, and although Mog's is by no means the only perfect one I've seen, I have seen plenty of disgusting ones. Some (but by no means all) of them have undoubtedly been due to poor care and cleaning. I have been laid back and breezy about how easy it has been to keep it clean, how regular cleaning and creaming when sore is all that has been needed, how we leave it alone when it's well and just rotate it, and how any gastrostomy site can look like this if you pay it a bit of attention but not too much.

Now Little Fish has a gastrostomy tube and a stoma all of her own. And I am eating my words. Pride goes before the pus. Little Fish's stoma is ugly, folks. The hole is now twice as big as it was when it was created, it is greenish, and the skin around it is raised, angry, and red. I'm told it's not an infection, it is because Little Fish is wriggling and the tube is not stabilised. The phrase the nurse used was "imagine a lamppost in wet concrete, the more you move it the bigger the hole it is set in will get". A lovely image. I am cleaning it in the same way I clean Mog's tube. She is screaming somewhat more than I remember Mog screaming - I think she has more of the anticipatory fear than Mog had. I am using Lyofoam, a special one way barrier dressing which sucks up the pus and stomach acid and lets the skin heal beneath it (straight gauze just holds the acid against the skin, ouch). I am taping it in place so it can't move. And still the hole is growing, still the sore area is spreading.

Can it be that for all my pride, the true secret to Mog's perfect piercing is not that I am so good at keeping it clean, but simply that she cannot move and wriggle and bend and stretch in the way Little Fish does? Is it perfect simply because it comes under no pressure? I'd like to think not, and I'm sure that the cleaning is important and not a bad thing to be doing. But I suspect that all my efforts are merely helping, and the main reason Mog's stoma stays a nice neat little stoma shaped hole is just that it is never pulled into an un-stoma-like stretch.

Of course there's always the more problematic issue that it could be nothing to do with Little Fish's acrobatics. It could in fact be that she is allergic to the tube itself. It is a latex free tube, but just because it has no latex in it is no guarantee she is not allergic to whatever it is made from. I do hope that's not the case; I'm not sure what, aside from silicone and latex, they can use. And she can't go without fluid for the rest of her life. If it's a question of allergies versus my pride, I'll take the pride fall any day.


Tuesday, 5 February 2008

Is Disability a dirty word?

A parent complained the other day that someone described her child as disabled. The child has a combination of different impairments, different special needs, but these do not, in the eyes of the mother, add up to a child with a disability. The child cannot walk without falling over, but this does not make the child disabled.

I have to admit, I was surprised by this. See, my girls are disabled. Profoundly disabled. I don't think Little Fish's disabilities get in the way of her doing anything other children her age are doing (she's certainly got the screaming tantrums of the typical toddler, and is recovering from one as I write this. So am I). But that doesn't make her not disabled. When the playing field is level, her wheelchair goes just as fast, if not faster, than other toddlers can run. She can steamroller quite a few of them, producing an entertaining human skittle effect, if she hits a row of them at just the right angle. She can play, scream, learn, get tired and get ill, make massive messes and be hugely helpful, be adorably loving and infuriatingly obstinate, often all at the same time. She is, in most respects, a pretty average toddler. As far as most people who meet her on a casual basis, she is a toddler who happens not to have use of her legs. There's more to it than that, but that's probably all that is evident on first viewing (at least once the scars from her nasogastric tube fade away).

I would be annoyed if a stranger in the street called her retarded, I might wince if they decided to call her handicapped. I would definitely be upset if that stranger called her own children away and crossed the street to avoid us (yes, it happens). But to be upset because they notice my child is disabled? It seems strange to me.

I know that being a wheelchair user makes a child obviously disabled. Perhaps wobbling is subtler. But having fostered wobbly children, I'd prefer that passersby noticed the disability, and took steps to compensate for it (by giving the child more space to move), rather than shout at the child for being clumsy or stupid or careless. Wouldn't you? Or would you? Perhaps I am odd.

I certainly prefer "disabled" to the comment we had in the supermarket once. I was pushing Mog in her comfy new wheelchair - so comfy that she had fallen asleep in it. A little boy ran up, looked closely at Mog sleeping peacefully, and ran back to his mother shouting "I think that little girl's dead!" I'm quite pleased she was asleep - not sure how I'd have explained that one to her.

Disability is difficult (queen of the understatements). To the medical profession, my girls are failures. Little Fish should never have been born, Mog was either a mistake or an unfortunate accident. Their continued existence is a constant reminder of the limitations of current medical practice. The urge amongst surgeons is to fix, fix, fix. The temptation is to keep on trying to fix, trying to make the broken body that much more perfect. Or alternatively, to give up, to stop trying to make one small part a little bit better, because overall, the child is still massively, grossly, broken.

I have had doctors refuse to treat my girls; the hospital doctors refused to admit one child who had been having seizures for three days straight because, in the words of the doctor "she's severely retarded and it is to be expected". I have had a doctor tell me that Mog's gastric bleeds and vomitting coffee grounds is "trivial, compared to everything else she's got going on and not worth treating". Over and over again I have to remind unfamiliar doctors that I am not looking for a miracle cure for cerebral palsy or spina bifida, I am not trying to take away the girls' disabilities, I am simply asking for help with one particular problem. Which may in itself have nothing to do with the disability. Disability is not insurance against the normal hazards of growing up. Being disabled does not protect a child from chicken pox, colds and 'flu, broken bones and appendicitis. It's easy, apparently, to ascribe all symptoms to the disability. My daughter is not crying in pain, she's crying because "that's what children like that do". My baby is not gasping for breath, "he's found a sound which he finds funny".

I've also had doctors and therapists try to fix what can't be fixed, trying to force my daughter's body into positions it cannot hold without pain, unbelieving when I explain that Mog cannot cope with having her feet clamped to her footplates, or that Little Fish cannot chew with a paralysed tongue.

I suppose what I'm asking is that people neither become blinded by the disability nor blind to the disability. A fine line. Accept that my girls have limitations, but don't impose your own. Maybe that's what the parent in my opening paragraph was complaining about. But I don't think so. I think she was complaining that someone noticed her child was disabled. Perhaps she isn't ready to consider her child to be disabled. I wonder what she would consider disabled to be?

Our government defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities. And states that the impairment must affect one or more of the following capacities: mobility, manual dexterity, speech, hearing, seeing and memory. The child in question has problems with things in at least three of those categories.

I must remember I chose to join this club, the "parents of children with special needs" club. My children come to me precisely because they are disabled; they would not be my children if they did not have their disabilities. I have the luxury therefore, of loving the disability as a part of the child, right from the start. I suspect that, for many parents, membership to the club comes at a price they would prefer not to have paid, and that membership card is something some parents choose to hide for a very long time. I remember a few years ago hearing about another parent, who was raising funds at work for a charity which supports his child. It transpired in the course of conversation, that although he was happy to talk about what the charity does, he had never mentioned to workmates that his child was disabled. Is that the same thing? Hide it away, consider it shameful? Or perhaps simply choose not to mention it, choose to keep one part of life unaffected by the disability fog which clouds every aspect of life at home?

I intend no criticism. People deal with disability in different ways. Parents aren't exempt from that. Provided the child in question (and siblings) is cared for, nurtured, loved, I don't think it matters how the parents do that.

Disabled children and adults are thankfully visible in this country. When we go into town, I am not the only adult pushing a wheelchair. Little Fish sees adults driving themselves in their power chairs, Mog sees other adults being pushed. We see adults and children alone and in families and on outings from local residential care homes. Adults with physical disabilities, learning disabilities, visual impairments, mental health problems, autism.

When I worked in a residential school for children with profound disabilities, the children in that school never saw adults with disabilities. Students left at 19 and were never seen again, staff were all able bodied, as were the volunteers who came to help out or for work experience. Small wonder that some of the children there assumed their disability would disappear once they hit adulthood. The world of adult life was represented to the students by visits from firemen with a big shiny engine, policemen with flashy sirens, actors and musicians with plays and concerts, dancers, postmen with their vans,farmers and vets with their pets. Would it have been so hard to find some of the ex-students, now living in residential placements or sheltered housing, and ask them to come back to talk to the present students about their lives? Or were we scared to show the children too much reality?

Disability is. Disability is lifelong, however long or short that life might be. I wonder what message our children get when such a large part of their life is not mentioned, or conversely when it becomes the only subject of conversation? Somewhere between not admitting that the child has a disability, and not accepting that the child has or is anything other than a collection of disabilities lies the balance. Of course I like to think I've got it right with my girls, but I'm sure I make mistakes at times, and I'm sure my version of right is very wrong to other families.

One thought more. If disability is a dirty word, does that make the disabled child dirty by association?

The Potter

I have a post I'm musing through and it's taking a few days to mull over. So in the meantime, I thought you might like one of my poems.

The Potter (14, Sept, 2000)

The pieces on the floor, the pots and vessels scattered

The potter kneels amongst the shards, equally shattered.

He takes the clay and holds it in his hands

It will not mould again, he understands.

A lifetime’s work in ruins, gone astray

A lifetime’s plans destroyed in just one day.

The curate weeping, life a mess, doubts and worries, fear and stress.

The child abused, confused, afraid, childhood lost, innocence waylaid.

The man alone, no home, no place, no one ever sees his face.

The woman lost, a life of pills, drowning under mental ills.

Each vessel smashed, each piece destroyed

Designs all lost, the shapes a void

Clean the slate to start again

Flood the world with wind and rain

And yet, and yet the rainbow stands

Between the maker and the man

His creation broken the Potter weeps for us

The lost, the sad, the lonely, damaged us.

He weeps for you, He weeps for me

For what has been, and what is yet to be.

The shards He gathers pierce his skin, He bleeds

And still He holds us tight, He meets our needs.

The pain contained within my brittle shell

He knows and loathes and shares and feels as well.

The loving Potter holds me tight and feels

And loves, forgives, begins again and heals.


Monday, 4 February 2008

I'm a winner too!

And don't these look beautiful?
E2's booties. So hard to choose though! I think this pair will have to be for Little Fish; she's definitely earned the right to something pretty after everything she's gone for over the past week.

Many thanks, Lauren!

And the Winners Are...

For the Dora Kite

Random Integer Generator

Here are your random numbers:


Timestamp: 2008-02-04 12:44:13 UTC

And for the tin of biscuits

Random Integer Generator

Here are your random numbers:


Timestamp: 2008-02-04 12:45:13 UTC

These are from's integer generator.

Counting down the comments, that means that Lesha has won Dora's Kite, and that the biscuit tin goes to Deborah. Congratulations! I will get them out in the post to you when you give me your addresses.


Saturday, 2 February 2008


Last Wednesday was a bit of a mad rush. Little Fish is always tired on a Wednesday, so she wasn't awake until 9. Mog all togged up and ready for school, her bus was late, so didn't leave the house until 9. Babysitter due at 9.30 for Little Fish. Our morning carer packs a bag for Mog, I have the intention of making Little Fish and I smart, and then packing a hospital kit for us both.

It is as I load the breakfast things into the dishwasher, making the load complete, that I notice a stagnant pool of water at the bottom. I do a quick investigation, but am unsure at this point whether it is striking for better pay and conditions, sulking over the special treatment accorded to the washing machine, or terminally ill. Whatever the cause, it appears to be taking great pleasure in making a loud humming noise and then doing nothing.

So the babysitter turns up and is greeted by the sight of me trying to siphon off scummy dishwater water whilst simultaneously washing up the curry plates from the night before and kicking clean socks into a hospital bag. Queen of multitasking, that's me. Little Fish meanwhile is banging her spoon on her tray, sending a fine spray of Weetabix arcing up and over the kitchen. Smashing.

I clear up the worst of it, throw a set of clothes for LF at the sitter, and hare off into the city to get to court in time. I am, inevitably, early. No cameras allowed in the court, so mine is confiscated at the door (forgot it was in my bag) and I am given a small green raffle ticket to reclaim it later. I sit and wait for my solicitor. And I sit, and I wait. And sit. And wait. I am just beginning to wonder whether I am in the right place, when Mog's social worker turns up, together with a student SW. They sit and wait for a few minutes, and then go upstairs to do some more waiting. Returning almost immediately to point out that my solicitor is also waiting upstairs. Excellent.

We do the necessary introductions, wait for the rest of the people due to attend, and it is at this point we realise that there is no mention of Little Fish on the application papers. Oops. This is remedied, Mog's other mother turns up and we eventually make it into the courtroom. We are running late at this point, and the solicitor is concerned that his parking meter will run out.

The court room itself is perhaps not quite what people might be expecting; the judge wears no wig and no gown, there is no wooden panelling nor rows of jurors, just a very large desk with seats for all of us in front of it. My solicitor speaks for approximately three minutes, the judge agrees with what he says, and the hearing is adjourned until some time in March. For this, and the paperwork leading up to this point, my solicitor charges £668. This bill includes £2 parking ticket, but does not include a parking fine. I assume therefore that he beat the traffic warden back to his car. £90 per hour, and carers in the UK are paid £46 per week. Thankfully fostercarers are not expected to pay the legal bill in this situation.

I stop for a coffee with Mog's mother, and then have to race back home to relieve our sitter. Once home, I am greeted by the sight of a big white van - Bob has returned! I now have 15 minutes to thank and pay the sitter, finish throwing clothing into a couple of bags, find some food and console Little Fish for my absence. 12.5 of this minutes are taken up by Bob, who wants to show me what he will be doing, what he has been doing, and generally needs me to admire the decking once more. I explain that we will be away until Monday, grab Little Fish and head for school to collect Mog. Thoughts of a building project finally finished tick through a largish corner of my mind - the weather is good, he's been gone long enough to have collected everything he needs, let's be hopeful.

Only slightly late collecting Mog means only a little late getting to hospital. I won't go into the hospital bit in depth; it's over and it was depressing. In summary, we were moved from the specialist ward to the general ward, dumped unnecessarily in the High Dependency Unit, finally and reluctantly accepted back on the ward, and then denied our place at the hospice thanks to comments made by the ward staff who had no idea how Little Fish was doing and hadn't thought to ask or find out before telling the hospice she was not ready for discharge.

So discharged last night, we called in to see Mog and then Little Fish was desperate to see Grandad. A quick visit catching him on his way out, then pour a tired Little Fish into bed and follow not long after. Horrible night with Little Fish's Nippy beeping regularly until it settled down for a few hours at 2AM. So we're rather tired this morning.

I walked into the sunroom and was struck by how big it appeared to be. And then I realised, Bob has collected all his tools. Excited, I went outside to take a look at my newly completed garden and building work. And realised that it is not finished. All he did on Wednesday was to finish one small piece of trim and move a pile of earth. The machinery in the garden has been collected too though. This does not bode well. I now have the same list of work needing to be finished, and a builder who has collected all his tools and disappeared.

He will be back - he will have to come back, he hasn't yet submitted his final bill. And one day, he will turn up and actually finish the job. Until then...


Friday, 1 February 2008

unplanned intermission

I wrote a long long piece here, read it back and it bored even me. So you've got the brief version instead.

Little Fish's operation went extremely well; she's settled, not too sore, pleased with her tube and it all seems to be working just fine. The rest of our hospital stay was a complete nightmare and there are now investigations underway and official complaints not instigated by me but by others involved in our care on our behalf.

Mog has been unwell at the hospice but we popped along to see her tonight and she seemed pretty happy.

We should not be here at home today, but, as a result of part of the hospital nightmare, our bed at the hospice was given to someone else. We are headed that way tomorrow morning and will be staying there for a couple of nights at least.

For now, Mog is settled. Little Fish is settled. I am tired, annoyed, and going to bed.


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