I'm sitting in the kitchen, cooking spaghetti bolognese and talking to tLP, who is off school yet again.
Nothing major, nothing terribly significant, and indeed this is only one minute, no greater or less than any other moments this day or year.
But symmetry pleases me, and I thought I'd record what I was doing at the time. Not entirely what I'd planned to be doing, but not bad either. Just your average kind of Wednesday.
Tia
Showing posts with label blogging. Show all posts
Showing posts with label blogging. Show all posts
Wednesday, 12 December 2012
Wednesday, 5 September 2012
Reader Question
Claire says "A 7 year old asked me "Why are all the children on Mr Tumble sick?"
I wasn't really sure what to say but said "They aren't sick, some children take longer to learn things, find it hard to talk,or can't hear,sometimes they talk with their hands." Then we talked about the signs we knew and practised them.
Any other ideas?"
And I thought "hmm, not blogged properly for a while, got lots of things I ought to be blogging and lots of reasons why I haven't, but I can at least give our perspective on that."
And then I looked at Claire's answer, and decided I probably couldn't improve on that anyway - a pretty perfect response!
So then I thought I'd ramble on a bit instead, and maybe something sensible might sift itself to the surface.
My girls aren't sick. Except that of course Mog is quite often pretty sick. But even when they're well, they are still disabled. Still have special needs, are still multiply impaired. Pick your own term. We live in the UK, so that won't be handicapped; acceptable in the USA but not here. It also won't be retarded.
A few weeks ago, the Little Princess surprised me by saying something I've never heard her say before. "I can't do that, I'm disabled." It surprised me, not because I don't think she sees herself as disabled, not because we don't use the word disabled, but because I've never heard her use it as an excuse before. As it happens, she was trying to use it as an excuse to avoid doing something she is perfectly capable of doing (taking something through to another room for me), so my instant response was "there's nothing wrong with your hands, pick it up."
She's struggling at the moment. Bedtimes and safely strapped into the bus when I'm busy driving times and heading out of the door when it's too late for a proper conversation times, she drops in a wistful "I wish I could walk." Or "I wish I didn't have to have all these tubes and could roll over at night." And occasionally an "It's not fair." And then at other times I'll here her muttering to herself as she tries to sort things out. "Mog can't do that, acos she is disabled. Her arms don't work so she is in a wheelchair. But I am disabled. But I can do that." She is not like Miss Mog, and Mog's friends. And she is not like her schoolfriends and Brownies either.
We have a wonderful world of Special Kids friends; where else can you go camping and have enough children with additional needs gathered together to need heats for the Wobbly Walkers race, and to need to expand the width of the race track for the Power Chair Users race? Where else will you find four children playing together, and have the fourth come running back to her parents begging to borrow her sister's spare wheelchair because she's the only one without a chair to roam around in? If it comes to that, where else will you find six families in a row all running blenders to liquidise meals for their tube fed children, several dozen siblings all accustomed to ignoring the seizures and getting on with their own lives whilst parents are otherwise occupied, and where else would an epic lego zombie castle/ princess palace have its own hospital wing?
For a few days, the Little Princess disappeared off to the far corners of the field with friends who didn't need the lengthy explanations. Just as she never questioned why one of her friends only has one leg, so she never questioned why another still had a nose tube - just showed off her own belly piercings (thus worrying the child who is waiting for a gastrostomy and now needs reassuring that she will only have one tummy hole not three!).
Coming home was softened by repeat visits from friends, birthday parties, and a whirl of Special Kids social stuff. When your friends, and your friends' siblings, have special needs, you don't have to keep up the front. You can be yourself, and they don't mind if you completely miss the point - chances are they'll be completely oblivious to your own point too, but you'll still enjoy playing together, because it's nice just to be together.
And then we went back to church, and her friend who runs across playgrounds to be with her wouldn't sit next to her on the carpet. and instead she was surrounded by small children fascinated with the flashing lights and beeping buttons on her powerchair. and I realised it's not just what special kids friends do do - accept, accommodate, adapt and just appreciate each other - it's what they don't do - get fazed by meltdowns or seizures of anything suddenly odd. Press buttons or attempt to drive each other's chairs (unless they happen to be trying them out). Ask the "whys" loudly, and to a third party rather than directly. And stare (unless it's a parent trying to work out what make of wheelchair it might be, or what exactly is different about that particular headrest, etc.).
And then I walked her into school for the first day of term, and for the first time ever, she wasn't mobbed by her classmates, but ignored as she shuffled into line. And I'm told she had a good day, but she also tells me she's very poorly and shouldn't go back. but then that friend who wouldn't sit with her at church ran right across the playground screeeching loudly so they could both dance together at the end of the school day, and maybe it is alright after all? And then it's bedtime again, and "I wish I could jump."
Cool chairs are fantastic when you're with a field full of other people with differently cool chairs. And little zippy eBay bargain chairs are fantastic for nipping in out out of church and racing around the forecourt. But then the game turns into "everybody get up high where tLP can't reach you." Or "you can't pass here until you know the magic password." And school stuff starts to include competitive games, and Brownies means sitting on the floor, and although you get lifted out onto the floor and not excluded, still, you're the only one who needs lifting. and when your mother has made a mistake, and your Brownie trousers are 4 sizes too big, then crawling on the floor really isn't a great idea.
And then when you're at home, and school, and everywhere, you're being told you need to be more independent. You need to be doing your own catheters, filling your own intestines with warm water until they are so full you feel like they're going to burst, at which point they finally condescend to release their hold on everything inside them, shuffling your own assortment of night tubes so you can roll yourself over at night.But you know other children your age don't have to do any of that, and you know your big sister doesn't have to do anything at all for herself. And she can't, because she's disabled. So why do you have to, because you're disabled too, aren't you?
The world can be a very confusing place. There's the big wide world, where everything is harder for you than for anyone else. And where your mother embarrasses you because every time someone says "oh I wish I had a wheelchair like that" she replies "She wishes she had your legs, want to swap?" And sometimes she embarrasses you by singing and dancing in the street, because she thinks it's funny to watch you get all embarrassed and zoom away.
And then there's the nice safe Special Kids world, which is also the ROSY world, and the Helen House world, where there are lots and lots of Mogs, and a few tLPs, and where things are safe and easy full of understanding. And where your mother embarrasses you by singing or holding your hand and swinging it, because some things are universal, and seven year olds should be embarrassed by their mothers.
It's been a Special Kids summer. And that's been fantastic. But now we have to walk (or roll) back into the real world, and that's difficult. She's gained another label over the holidays; doesn't change who she is at all but is another indication of how things may get harder for her as she gets older, how the gap between her and her classmates is likely to widen. And just for today, although this isn't why I started writing this, I'd like to join her in saying it isn't fair.
It isn't fair that she can't walk and jump and run and do all the other things her classmates take for granted. It isn't fair that we don't go to the park very often because I struggle to lift her onto the swings and slides, and because even when I do, she still can't manage the obstacle courses. It isn't fair that she can't use trampolines and bouncy castles or go horse riding or do lots of other things most children even with her level of physical disability can manage and enjoy. And it's definitely not fair that on top of that she struggles with learning and retaining information, and that even if she gets invited to friend's houses (once in 3 years of school), she still can't e.g. play with balloons at birthday parties. And she can't travel with her friends on school trips because the bus isn't accessible. And it's not fair having to sit in hospital waiting rooms when your friends are sitting in the classroom or zipping around the playground. And it's not fair that so many things hurt so much of the time. And today she's at school, and she isn't here, so I don't have to be all jolly and upbeat and point her to all the things she can do, nor do I have to work out where the line is drawn between empathising and being overly sympathetic and poor poor you to her, nor yet do I have to find new ways of embarrassing her to distract her out of it. I can just sit quietly and stamp my own foot and say very loudly It's NOT FAIR.
My heart hurts. She's beautiful. She's amazing. She drives her chairs plural with phenomenal competence and can squeeze them through gaps I wouldn't dare to try. Unless we're at home, as my walls and doors will testify. She can do so much more than the doctors ever thought she'd manage. She's kind and caring and determined, gentle and strong and funny. She can make cakes and scramble eggs and feed herself and her sister, as long as someone can pop the syringe apart and click it back together again for her. And she puts on an amazing front, and it fools a lot of the people a lot of the time. But more and more she's spotting the differences, weighing them up, and deciding that she comes out on bottom. And I want to go back and live in Special Kids world, where she doesn't have to put that front on; where it's ok to ache, and where friends are just as achey. Where powerchair top speed really is top speed, and where it's totally acceptable to give your friend in the manual chair a push, and where you can play tig as equals, or turn the field into a stage and put on a play, never mind the fact that the prince doesn't want to kiss anyone, and that tLP has no idea what her part might be but is taking huge pleasure in bellowing "OK backstage everyone, now please" at intervals, and where friends just incorporate that into the drama.
But, we're not, and life goes on. And so we get to live in this world, where children tell their parents ""that girl is dying" when they look at Miss Mog; where tLP's new toilet at school turns out still to be the men's loo, as unavoidable delays (genuinely unavoidable; not the fault of the school nor the LEA) mean work won't now start until October half term. Where administrative errors (somehow Mog's address has been changed on the hospital system) which should be simple to fix ("this is her address, not that") are apparently unfixable unless Mog herself writes a letter to the hospital requesting it.
It's not all bad. I can, of course, find many many good things about most of the things which are happening. But, just for now, the house is empty, I'm taking a break from the 3987345987234 administrative things which have piled up over the summer, and I want to sit and wallow in all the "It's not fairs" I don't allow my daughter to wallow in. Which is in itself, Not Fair. But as she doesn't know about it, hopefully it's still OK.
Oh - and back to the original question - Claire, I wish you could be a round all the seven year olds we encounter because that's a pretty perfect response I think. Anyone got anything else they'd like me toignore more or less completely whilst rambling on about something else comment on?
Tia
No photos here; I took very few this summer, and others took lovely ones and said they'd email them (you all know who you are; please please, pretty please? And with a yay or nay for inclusion here).
I wasn't really sure what to say but said "They aren't sick, some children take longer to learn things, find it hard to talk,or can't hear,sometimes they talk with their hands." Then we talked about the signs we knew and practised them.
Any other ideas?"
And I thought "hmm, not blogged properly for a while, got lots of things I ought to be blogging and lots of reasons why I haven't, but I can at least give our perspective on that."
And then I looked at Claire's answer, and decided I probably couldn't improve on that anyway - a pretty perfect response!
So then I thought I'd ramble on a bit instead, and maybe something sensible might sift itself to the surface.
My girls aren't sick. Except that of course Mog is quite often pretty sick. But even when they're well, they are still disabled. Still have special needs, are still multiply impaired. Pick your own term. We live in the UK, so that won't be handicapped; acceptable in the USA but not here. It also won't be retarded.
A few weeks ago, the Little Princess surprised me by saying something I've never heard her say before. "I can't do that, I'm disabled." It surprised me, not because I don't think she sees herself as disabled, not because we don't use the word disabled, but because I've never heard her use it as an excuse before. As it happens, she was trying to use it as an excuse to avoid doing something she is perfectly capable of doing (taking something through to another room for me), so my instant response was "there's nothing wrong with your hands, pick it up."
She's struggling at the moment. Bedtimes and safely strapped into the bus when I'm busy driving times and heading out of the door when it's too late for a proper conversation times, she drops in a wistful "I wish I could walk." Or "I wish I didn't have to have all these tubes and could roll over at night." And occasionally an "It's not fair." And then at other times I'll here her muttering to herself as she tries to sort things out. "Mog can't do that, acos she is disabled. Her arms don't work so she is in a wheelchair. But I am disabled. But I can do that." She is not like Miss Mog, and Mog's friends. And she is not like her schoolfriends and Brownies either.
We have a wonderful world of Special Kids friends; where else can you go camping and have enough children with additional needs gathered together to need heats for the Wobbly Walkers race, and to need to expand the width of the race track for the Power Chair Users race? Where else will you find four children playing together, and have the fourth come running back to her parents begging to borrow her sister's spare wheelchair because she's the only one without a chair to roam around in? If it comes to that, where else will you find six families in a row all running blenders to liquidise meals for their tube fed children, several dozen siblings all accustomed to ignoring the seizures and getting on with their own lives whilst parents are otherwise occupied, and where else would an epic lego zombie castle/ princess palace have its own hospital wing?
For a few days, the Little Princess disappeared off to the far corners of the field with friends who didn't need the lengthy explanations. Just as she never questioned why one of her friends only has one leg, so she never questioned why another still had a nose tube - just showed off her own belly piercings (thus worrying the child who is waiting for a gastrostomy and now needs reassuring that she will only have one tummy hole not three!).
Coming home was softened by repeat visits from friends, birthday parties, and a whirl of Special Kids social stuff. When your friends, and your friends' siblings, have special needs, you don't have to keep up the front. You can be yourself, and they don't mind if you completely miss the point - chances are they'll be completely oblivious to your own point too, but you'll still enjoy playing together, because it's nice just to be together.
And then we went back to church, and her friend who runs across playgrounds to be with her wouldn't sit next to her on the carpet. and instead she was surrounded by small children fascinated with the flashing lights and beeping buttons on her powerchair. and I realised it's not just what special kids friends do do - accept, accommodate, adapt and just appreciate each other - it's what they don't do - get fazed by meltdowns or seizures of anything suddenly odd. Press buttons or attempt to drive each other's chairs (unless they happen to be trying them out). Ask the "whys" loudly, and to a third party rather than directly. And stare (unless it's a parent trying to work out what make of wheelchair it might be, or what exactly is different about that particular headrest, etc.).
And then I walked her into school for the first day of term, and for the first time ever, she wasn't mobbed by her classmates, but ignored as she shuffled into line. And I'm told she had a good day, but she also tells me she's very poorly and shouldn't go back. but then that friend who wouldn't sit with her at church ran right across the playground screeeching loudly so they could both dance together at the end of the school day, and maybe it is alright after all? And then it's bedtime again, and "I wish I could jump."
Cool chairs are fantastic when you're with a field full of other people with differently cool chairs. And little zippy eBay bargain chairs are fantastic for nipping in out out of church and racing around the forecourt. But then the game turns into "everybody get up high where tLP can't reach you." Or "you can't pass here until you know the magic password." And school stuff starts to include competitive games, and Brownies means sitting on the floor, and although you get lifted out onto the floor and not excluded, still, you're the only one who needs lifting. and when your mother has made a mistake, and your Brownie trousers are 4 sizes too big, then crawling on the floor really isn't a great idea.
And then when you're at home, and school, and everywhere, you're being told you need to be more independent. You need to be doing your own catheters, filling your own intestines with warm water until they are so full you feel like they're going to burst, at which point they finally condescend to release their hold on everything inside them, shuffling your own assortment of night tubes so you can roll yourself over at night.But you know other children your age don't have to do any of that, and you know your big sister doesn't have to do anything at all for herself. And she can't, because she's disabled. So why do you have to, because you're disabled too, aren't you?
The world can be a very confusing place. There's the big wide world, where everything is harder for you than for anyone else. And where your mother embarrasses you because every time someone says "oh I wish I had a wheelchair like that" she replies "She wishes she had your legs, want to swap?" And sometimes she embarrasses you by singing and dancing in the street, because she thinks it's funny to watch you get all embarrassed and zoom away.
And then there's the nice safe Special Kids world, which is also the ROSY world, and the Helen House world, where there are lots and lots of Mogs, and a few tLPs, and where things are safe and easy full of understanding. And where your mother embarrasses you by singing or holding your hand and swinging it, because some things are universal, and seven year olds should be embarrassed by their mothers.
It's been a Special Kids summer. And that's been fantastic. But now we have to walk (or roll) back into the real world, and that's difficult. She's gained another label over the holidays; doesn't change who she is at all but is another indication of how things may get harder for her as she gets older, how the gap between her and her classmates is likely to widen. And just for today, although this isn't why I started writing this, I'd like to join her in saying it isn't fair.
It isn't fair that she can't walk and jump and run and do all the other things her classmates take for granted. It isn't fair that we don't go to the park very often because I struggle to lift her onto the swings and slides, and because even when I do, she still can't manage the obstacle courses. It isn't fair that she can't use trampolines and bouncy castles or go horse riding or do lots of other things most children even with her level of physical disability can manage and enjoy. And it's definitely not fair that on top of that she struggles with learning and retaining information, and that even if she gets invited to friend's houses (once in 3 years of school), she still can't e.g. play with balloons at birthday parties. And she can't travel with her friends on school trips because the bus isn't accessible. And it's not fair having to sit in hospital waiting rooms when your friends are sitting in the classroom or zipping around the playground. And it's not fair that so many things hurt so much of the time. And today she's at school, and she isn't here, so I don't have to be all jolly and upbeat and point her to all the things she can do, nor do I have to work out where the line is drawn between empathising and being overly sympathetic and poor poor you to her, nor yet do I have to find new ways of embarrassing her to distract her out of it. I can just sit quietly and stamp my own foot and say very loudly It's NOT FAIR.
My heart hurts. She's beautiful. She's amazing. She drives her chairs plural with phenomenal competence and can squeeze them through gaps I wouldn't dare to try. Unless we're at home, as my walls and doors will testify. She can do so much more than the doctors ever thought she'd manage. She's kind and caring and determined, gentle and strong and funny. She can make cakes and scramble eggs and feed herself and her sister, as long as someone can pop the syringe apart and click it back together again for her. And she puts on an amazing front, and it fools a lot of the people a lot of the time. But more and more she's spotting the differences, weighing them up, and deciding that she comes out on bottom. And I want to go back and live in Special Kids world, where she doesn't have to put that front on; where it's ok to ache, and where friends are just as achey. Where powerchair top speed really is top speed, and where it's totally acceptable to give your friend in the manual chair a push, and where you can play tig as equals, or turn the field into a stage and put on a play, never mind the fact that the prince doesn't want to kiss anyone, and that tLP has no idea what her part might be but is taking huge pleasure in bellowing "OK backstage everyone, now please" at intervals, and where friends just incorporate that into the drama.
But, we're not, and life goes on. And so we get to live in this world, where children tell their parents ""that girl is dying" when they look at Miss Mog; where tLP's new toilet at school turns out still to be the men's loo, as unavoidable delays (genuinely unavoidable; not the fault of the school nor the LEA) mean work won't now start until October half term. Where administrative errors (somehow Mog's address has been changed on the hospital system) which should be simple to fix ("this is her address, not that") are apparently unfixable unless Mog herself writes a letter to the hospital requesting it.
It's not all bad. I can, of course, find many many good things about most of the things which are happening. But, just for now, the house is empty, I'm taking a break from the 3987345987234 administrative things which have piled up over the summer, and I want to sit and wallow in all the "It's not fairs" I don't allow my daughter to wallow in. Which is in itself, Not Fair. But as she doesn't know about it, hopefully it's still OK.
Oh - and back to the original question - Claire, I wish you could be a round all the seven year olds we encounter because that's a pretty perfect response I think. Anyone got anything else they'd like me to
Tia
No photos here; I took very few this summer, and others took lovely ones and said they'd email them (you all know who you are; please please, pretty please? And with a yay or nay for inclusion here).
Wednesday, 11 January 2012
Soundtrack to my life
Because Miss Mog has found her groove again, this is what we're hearing from after school until the Tizanidine terminates all thought, and from midnight until the Tizanidine does its thing again at 5am.
Don't try to interpret the Little Princess - they both think gobbledygook is funnier.
And, because life is just that interesting, I (hopefully) include links to two of my regular evening noises with no prize other than infinite kudos to whoever correctly identifies them both. Alternatively, this will be yet another blank post with baffling references to invisible links. Bear with me; I can't upload videos any more for some reason so am trying audio files instead.
Edit: because I am not technically literate, this is not something which is going to be happening tonight. Or any time soon. In the meantime, hopefully, here is the video which I couldn't get to upload earlier. Sometimes my life is unnecessarily complex.
Oh, and does anyone know how to convert voice memos from the iPhone into a more transportable audio file?
Tia
Don't try to interpret the Little Princess - they both think gobbledygook is funnier.
And, because life is just that interesting, I (hopefully) include links to two of my regular evening noises with no prize other than infinite kudos to whoever correctly identifies them both. Alternatively, this will be yet another blank post with baffling references to invisible links. Bear with me; I can't upload videos any more for some reason so am trying audio files instead.
Edit: because I am not technically literate, this is not something which is going to be happening tonight. Or any time soon. In the meantime, hopefully, here is the video which I couldn't get to upload earlier. Sometimes my life is unnecessarily complex.
Oh, and does anyone know how to convert voice memos from the iPhone into a more transportable audio file?
Tia
Thursday, 15 December 2011
Reviews - your thoughts please
I occasionally write reviews for BookSneeze. It's a nice system; I choose a book from their site, they send it to me either electronically or in print. I read it, review it on my blog and on one other site (Amazon, ChristianBooks, wherever else I fancy), I send BookSneeze the links to my blog review and to the review on another site, and then I can choose another book. There's no obligation for me to write a positive review; there's no obligation actually to write any review at all - except that I won't get another book until I've reviewed the last one. Suits me; I don't get into our local Christian bookshop very often, and so I get to see books I wouldn't normally notice. Plus, I like reading. Lots.
Now I've had an offer from Thomas Nelson, offering me a similar set up and the chance to review their new Bibles etcetera as they come out. And I'm thinking this sounds good, but what do you lot think? Does it bother you if I review things on the blog? Do you like them, think they detract from things, don't care what I post as long as I post something?
From time to time I get offers from people wanting me to review things which really aren't a part of who I am - a very nice site for silver jewelery offered me a pair of earrings, but I didn't really fancy getting them pierced again. People suggest I might be interested in balloons, or mechanical gadgetry, or various bits and pieces which seem to be vaguely linked to one post I maybe wrote a few years ago, and I generally decline. Lots really isn't relevant to me or mine as an English family living in the UK. But, I've just had a nice (I think) offer from a digital scrapbooking site, offering to send me a copy of their software for review, and one for a giveaway. I know I've got some scrapbooky people out there; would you be interested if I did this? Or are these reviews just a slightly subtler way of sticking adverts on the blog?
Let me know
Tia
Now I've had an offer from Thomas Nelson, offering me a similar set up and the chance to review their new Bibles etcetera as they come out. And I'm thinking this sounds good, but what do you lot think? Does it bother you if I review things on the blog? Do you like them, think they detract from things, don't care what I post as long as I post something?
From time to time I get offers from people wanting me to review things which really aren't a part of who I am - a very nice site for silver jewelery offered me a pair of earrings, but I didn't really fancy getting them pierced again. People suggest I might be interested in balloons, or mechanical gadgetry, or various bits and pieces which seem to be vaguely linked to one post I maybe wrote a few years ago, and I generally decline. Lots really isn't relevant to me or mine as an English family living in the UK. But, I've just had a nice (I think) offer from a digital scrapbooking site, offering to send me a copy of their software for review, and one for a giveaway. I know I've got some scrapbooky people out there; would you be interested if I did this? Or are these reviews just a slightly subtler way of sticking adverts on the blog?
Let me know
Tia
Tuesday, 4 October 2011
Finding a place in the world for a Little Princess
I was on the computer when the Little Princess and Mog came home from school this afternoon. the Little Princess graciously allowed me to finish reading before demanding CBeebies. Which is good, as I was scrolling back through this post over at the Henn House.
tLP was fascinated with little E-F. She has Spina Bifida, just like me. She has a wheelchair, just like me. She has jelly on her back (ultrasound), just like me. She has to go to hospital, and wait, and sit, and see doctors, just like me. She has catheters, just like me. She has to have operations sometimes, just like me.
And then we clicked to the previous post. Such beautiful photography. But what are those? Why can I not stand up like that? My splints are stupid and I actually do hate them. Meltdown.
There's only a couple of inches in it. If her lesion had been a couple of inches lower, chances are she'd be able to walk, like every other child and adult she knows with Spina Bifida. Then again, if her lesion had been a couple of inches higher, she'd probably be either dead or totally ventilator dependent and without the use of her arms. But that's small compensation when you're six.
tLP knows she has Spina Bifida. And she knows that's why her legs don't work. And why she gets to spend so much of her life at hospital, at appointments, with therapists. It's why she needs catheters, and why she can't balance well enough to do them herself. It's why she needs spinal surgery, and it's why she can't have the operation which would fix things up the most effectively, and will have to go for a more complicated and less successful patch up job instead.*
Most of the time, she thinks of herself as pretty able (or possibly, pretty and able). At school, at Godzone and at Rainbows she has friends who include her just as she is, and she would identify herself far more with her able-bodied friends than with Mog and Mog's peers. She's used to people envying her wheelchair - and only gets upset when small boys attempt to take over steering or button pressing. If she's in her manual chair she'll push it herself or gladly commandeer a friend to push it for her - and so far, her friends will happily line up to give her a boost when needed.
And then she sees someone who might really be "just like me", and realises they can do that bit more. And I know she doesn't see the fact that for E-F, walking isn't the simple ballet her classmates dance, but the huge achievement rolling across the floor is for tLP. She just sees "that girl like me" suddenly "not like me" after all. And I see how much walking does mean to her, even though she doesn't really talk about it much. And the best and most evenly cut little squares of cheese with matching squares of ham, and a raisin and a cube of white bread with no crusts can't compensate for that.
But then she wants to know more. And she isn't envious, she's impressed and excited for little E-F, this little girl she's never met, but who is mostly "like me". And she shelves it, and we watch some CBeebies instead. Which is, as it turns out, a wise choice. Because right there, right then, on Mighty Mites, there is a little girl sitting on the floor "like me". Who is then in her big power chair "Like my old chair" and showing the world how to do ten pin bowling with a big ramp to roll the balls down. And our own Little Princess is an equal again; she can bowl and she can she can drive her own chair, and there are other children out there like her and they are having fun, and she can have fun like that too.
GiggleBiz comes on next, and there's a little girl with a naso-gastric tube, and "that was like I was having that one day", and hurrah for CBeebies and for blogging parents who are willing to throw open a window onto their lives. So we move on towards bedtime, and I wonder whether tLP realises how different her bedtime routine is to most of her friends, but decide to shelve that for another day. And we read Charlie and Lola, and she does some excellent sounding out and I don't kill her, although I quite want to, for insisting that g o o d spells DOG, and I leave her on the pot for a minute as I go to fetch her drugs.
And then I hear muffled thumps from the bathroom, and stand in the doorway watching as she picks each leg up in turn with both hands, dropping her foot back onto the floor then twisting to reach down for the next. Lift, drop, repeat, lift, drop, repeat. "Look Mum, I am walking."
And it matters.
Tia
*Complicated, but boils down to the fact that she can't have rods to the base of her spine as the base of her spine is split and frayed rather than being one solid lump, and can't go through her back to get to her spine as the myelomeningocele has left too much scar tissue and wodges of spinal cord. Deeply untechnical explanation.
tLP was fascinated with little E-F. She has Spina Bifida, just like me. She has a wheelchair, just like me. She has jelly on her back (ultrasound), just like me. She has to go to hospital, and wait, and sit, and see doctors, just like me. She has catheters, just like me. She has to have operations sometimes, just like me.
And then we clicked to the previous post. Such beautiful photography. But what are those? Why can I not stand up like that? My splints are stupid and I actually do hate them. Meltdown.
There's only a couple of inches in it. If her lesion had been a couple of inches lower, chances are she'd be able to walk, like every other child and adult she knows with Spina Bifida. Then again, if her lesion had been a couple of inches higher, she'd probably be either dead or totally ventilator dependent and without the use of her arms. But that's small compensation when you're six.
tLP knows she has Spina Bifida. And she knows that's why her legs don't work. And why she gets to spend so much of her life at hospital, at appointments, with therapists. It's why she needs catheters, and why she can't balance well enough to do them herself. It's why she needs spinal surgery, and it's why she can't have the operation which would fix things up the most effectively, and will have to go for a more complicated and less successful patch up job instead.*
Most of the time, she thinks of herself as pretty able (or possibly, pretty and able). At school, at Godzone and at Rainbows she has friends who include her just as she is, and she would identify herself far more with her able-bodied friends than with Mog and Mog's peers. She's used to people envying her wheelchair - and only gets upset when small boys attempt to take over steering or button pressing. If she's in her manual chair she'll push it herself or gladly commandeer a friend to push it for her - and so far, her friends will happily line up to give her a boost when needed.
And then she sees someone who might really be "just like me", and realises they can do that bit more. And I know she doesn't see the fact that for E-F, walking isn't the simple ballet her classmates dance, but the huge achievement rolling across the floor is for tLP. She just sees "that girl like me" suddenly "not like me" after all. And I see how much walking does mean to her, even though she doesn't really talk about it much. And the best and most evenly cut little squares of cheese with matching squares of ham, and a raisin and a cube of white bread with no crusts can't compensate for that.
But then she wants to know more. And she isn't envious, she's impressed and excited for little E-F, this little girl she's never met, but who is mostly "like me". And she shelves it, and we watch some CBeebies instead. Which is, as it turns out, a wise choice. Because right there, right then, on Mighty Mites, there is a little girl sitting on the floor "like me". Who is then in her big power chair "Like my old chair" and showing the world how to do ten pin bowling with a big ramp to roll the balls down. And our own Little Princess is an equal again; she can bowl and she can she can drive her own chair, and there are other children out there like her and they are having fun, and she can have fun like that too.
GiggleBiz comes on next, and there's a little girl with a naso-gastric tube, and "that was like I was having that one day", and hurrah for CBeebies and for blogging parents who are willing to throw open a window onto their lives. So we move on towards bedtime, and I wonder whether tLP realises how different her bedtime routine is to most of her friends, but decide to shelve that for another day. And we read Charlie and Lola, and she does some excellent sounding out
And then I hear muffled thumps from the bathroom, and stand in the doorway watching as she picks each leg up in turn with both hands, dropping her foot back onto the floor then twisting to reach down for the next. Lift, drop, repeat, lift, drop, repeat. "Look Mum, I am walking."
And it matters.
Tia
*Complicated, but boils down to the fact that she can't have rods to the base of her spine as the base of her spine is split and frayed rather than being one solid lump, and can't go through her back to get to her spine as the myelomeningocele has left too much scar tissue and wodges of spinal cord. Deeply untechnical explanation.
Monday, 18 April 2011
Interval
A second chest infection - thankfully over quickly, but with some
And
An extra weekend of respite offered by the hospice, some unexpected respite nursing and the promise of a new and cat-proof pressure relieving mattress; the joy of seeing my brother and family after an 18 month absence, a general gathering of the clans (although sadly but understandably incomplete); a shiny new fully functional wetroom and rather jolly lovely bathroom well on its way; some very gorgeous cuddles with a cousin's baby; watching Grannie playing cricket and cousins renewing relationships; beautiful weather; and the realisation that we are just about halfway through the Easter holidays and haven't yet had the "what on Earth are we going to do now" panic when it's 9.30AM and the day's activities are already complete.
And breathe.
And, the chance to try out a super duper fancy whizzy wonderful wheelchair which goes down to the floor and up to the sky and sits and stands and would generally make the Little Princess far more able to just be a part of life as a six year old. And a £20,000 quote for that same wheelchair which, oddly enough, isn't a sum I have just lying around under a mattress somewhere. Especially not after nice new shiny independence-enabling wet room. Time to start thinking about some fundraising.
And, speaking of fundraising; here's a challenge. I don't know about you, but once I was old enough to go to school, my parents found me a place, found me some uniform and whatever else I needed, and supported me for the next thirteen years until I'd collected a few A levels. My Mog started school (on a very part time basis) once she was two, and LP is now very happy at my old school. It's not quite the same story for Sarah's children in India. Sarah sent me this letter yesterday, and I'm passing it on.
Hi Friends of SCH!
If you're receiving this letter, it's probably because you love our vision for rescuing abandoned, institutionalized, and neglected kids with special needs and giving them everything--tons of kisses, lots of prayer, corrective surgeries, nice clothing and toys, physiotherapy, and everything that a much-loved child born or adopted into one of our families would get. We want to be the next best thing to an adoptive family, and you've helped us to be that. Our children are so happy because they're deeply loved and they know it. Almost all visitors remark that they've never seen such happy kids in an orphanage.
Part of giving them everything we can is making sure they have the best education available in Ongole. Being able to do this for them really excites me. These kids have been educationally neglected and are behind in many ways, and they need quality education to help them to not only catch up, but to get ahead. NONE of the 82 children in our care were sent to any type of school while in government care, but now 16 of them attend the best private, English-language schools we could get them into. Next year, starting in June, we'll be sending 21 children to top schools.
In India, competition for jobs is fierce, and if our children as orphans with special needs are going to compete, they've got to start preparing early. To get a good job, a child needs a private English education--without one, he or she can not get into a good college and will not get a good job. The free government schools are pathetic--often the children wander around, teachers rarely show up, and five or six grades are shoved into a classroom. Our children would be lost in the government school system.
We love it that we've been able to get so many of our children into good schools. Can you help us afford their education next year? It costs around $500 on average for one child to attend school for a full year, including tuition, fees, transportation, books, uniforms, shoes, backpack, water bottle, etc. When I sent my 3-year-old to a Christian preschool in America for 3 days a week ten years ago, I paid $330 a MONTH for tuition alone. My friend's brother in China will have to pay $50,000 to send his twin kindergarten daughters to an international day school in Beijing for a year. In comparison, the best education we can obtain for our SCH children is amazingly cheap, but the contrast between that and the free government schools is phenomenal. It would be a shame if we couldn't afford to do this for our kids.
And we may not be able to: I've raised only $200 toward this need in my several months of fundraising. We need $10,750 to send all 21 children to school next year. I can't imagine having to pull these kids out, when it's taken so much advocating to get them in.
Can you help? Can you sponsor a child or two? Maybe you can meet the whole need--a single donor did it last year...
Anyone feeling generous? These are Sarah's school children
and I know how hard she has worked to find schools who will take them. Here you can download a spreadsheet detailing the costs of each child's school placement, including uniform, transport, and all supplies. And here is Sarah's original post requesting help with school fees. Since she posted that in January, she has had just $200 donated towards these costs. The school year finishes in April. Without help, there will be no school for these children next year (new term begins in June). I can't imagine being in that position. Can anyone help? I see I have 59 followers. If every follower donated just £5, that would be one child's school costs paid for the year.Tia
Sunday, 5 December 2010
A different kind of normal
Nikki over at Blogs for a Cause is trying to raise money for Sarah's Covenant Homes. She interviewed me a few days ago, and here's her post, take a look. We can't all do what Sarah does, but if lots of people helped a little, what difference would that make?
Excuse my lack of wordiness here; I haven't left the house since Tuesday (Mog's been a little unwell), and apparently, when I don't leave the house, I lose all desire to communicate with the outside world.
Tia
Excuse my lack of wordiness here; I haven't left the house since Tuesday (Mog's been a little unwell), and apparently, when I don't leave the house, I lose all desire to communicate with the outside world.
Tia
Saturday, 16 October 2010
Recipe for a quiet blog
Take one Grandad, and post him up a tree
Spend the next three weeks converting the apples into a whole lot of this
and a freezer full of puree, and friends avoiding me in the street in case I try to shuffle another box of beetly apples into their car; apple lemon cakes, an intriguing apple curd recipe cooling on the counter as I type, gingersnaps (as a break from the apples), pumpkin pureeing and pumpkin seeds roasting (ditto); short pauses only when absolutely essential and mainly governed by when the food waste bin is full and can't take any more parings.
Combine with the need to swap this
for this
and the hunt for a settee to fit opposite it;
Add in the most sociable month we've had in the past seven years, with friends for weekends and friends for sudden overnights, and friends on the phone and friends on Skype, and escaping for a few days,
Combine with two children slightly under par, one of whom has managed to set my phone to look like this
Leave in a cosy but somewhat cluttered house and bake at room temperature for several weeks.
Normal service may be resumed shortly. And is more likely to be resumed if I ever manage to work out how to get the new wireless router working. In the meantime, excuse me please.
Tia
Spend the next three weeks converting the apples into a whole lot of this
and a freezer full of puree, and friends avoiding me in the street in case I try to shuffle another box of beetly apples into their car; apple lemon cakes, an intriguing apple curd recipe cooling on the counter as I type, gingersnaps (as a break from the apples), pumpkin pureeing and pumpkin seeds roasting (ditto); short pauses only when absolutely essential and mainly governed by when the food waste bin is full and can't take any more parings.Combine with the need to swap this
for this
and the hunt for a settee to fit opposite it;Add in the most sociable month we've had in the past seven years, with friends for weekends and friends for sudden overnights, and friends on the phone and friends on Skype, and escaping for a few days,
Combine with two children slightly under par, one of whom has managed to set my phone to look like this
Leave in a cosy but somewhat cluttered house and bake at room temperature for several weeks.Normal service may be resumed shortly. And is more likely to be resumed if I ever manage to work out how to get the new wireless router working. In the meantime, excuse me please.
Tia
Sunday, 21 February 2010
Wheeling away
The power of blogging. I posted this plea for help/general moan a couple of weeks ago. And someone replied, suggesting I tried contacting HMS Mobility. Thank you so much for the suggestion! HMS did some research, and discovered Otto Bock spare tyres were listed at £149 each. Given the original price of Little Fish's wheelchair; £960, that means, the tyres - not the wheels, just the tyres - were 1/3rd of the total price. Ouch. Thankfully, although I'd have paid that to get Little Fish moving again, HMS also investigated other options. I posted Little Fish's wheels to them, they sourced some super thin racing tyres, fitted them, posted the wheels back, all within a week and in time to take the chair on holiday, and all for half the price of an officially branded tyre.
Very impressed with the service we received, lots of reports throughout the week about the progress the chair was making, and then to have the wheels couriered back on the Friday ready for our trip was just wonderful. I did then have to refit the wheels to the chair myself - and they aren't the simple quick release type - but spanners and allen keys and a bit of elbow grease and I got to feel all technical and important and self reliant. Until I realised these tyres were rounder than the official tyres, and so they were bumping up against the brakes.
I did, for a few evil moments, consider the advantages of having Little Fish effectively governed by having to wheel with her brakes on all the time, but decided it was probably not the kindest thing to do to her. So, wheels off, investigate the brakes, discover I can adjust the entire seat and lift it up a notch. This is good news; in two years it's stayed the same height, I hadn't realised I had space to make it bigger. Suddenly this chair may just do for the next year or so too.
Lifting the seat does not however sort the brake problem out. I examine the brake blocks, and discover I will need a very small, very flat, spanner to loosen things up there. So I shelve the idea and let Dad come for lunch on Sunday. He eats, we look at the chair, he hits the errant brakes with a hammer, and everything is running smoothly again.
Hurrah for HMS and for Grandads!
Tia
Friday, 11 December 2009
Thanks to Becca and Laura
Remember this?
Becca found us the stripey ones, and oh my they're beautifully soft. And they came with another pair which I might just have to keep for myself. Thanks, Becca! And then yesterday there was a parcel in the post with lots of interesting letters on the front, and the pair on the left inside. All the way from Japan, together with some toys for the girls. Thanks, Laura! All the more amazing when you know that Laura managed to find these socks, parcel them up and post them out to us whilst packing for her family holiday, a major part of which will be flying solo with three of her children, one of whom is profoundly disabled, from Japan across America.
And by the time Laura reads this she will I hope be safely settled seeing family she's not seen for years and friends she's only met on line, and I hope the pain involved in the travel preparation has been all worthwhile.
Tia
Becca found us the stripey ones, and oh my they're beautifully soft. And they came with another pair which I might just have to keep for myself. Thanks, Becca! And then yesterday there was a parcel in the post with lots of interesting letters on the front, and the pair on the left inside. All the way from Japan, together with some toys for the girls. Thanks, Laura! All the more amazing when you know that Laura managed to find these socks, parcel them up and post them out to us whilst packing for her family holiday, a major part of which will be flying solo with three of her children, one of whom is profoundly disabled, from Japan across America.
And by the time Laura reads this she will I hope be safely settled seeing family she's not seen for years and friends she's only met on line, and I hope the pain involved in the travel preparation has been all worthwhile.Tia
Monday, 23 November 2009
Saturday, 10 October 2009
Newest Blog on the Block
And perhaps I need a new section in my list of blog - finally, someone else from our family has joined the blogging world. My brother and sister in law, and their two children, have just moved quite a bit further away than Aberdeen, and for those who are interested in our family, or else totally uninterested in us but interested in birds, you can find more of what they're doing over at Weavers and Whatnot.
We went to the fair on Monday, said goodbye amongst a welter of overtired children, and they flew off on Tuesday. And, unless we're feeling extraordinarily adventurous or else they're feeling especially homesick, I'm suspecting that parallel blogging is possibly as close as we're going to get for the next couple of years.
Tia
We went to the fair on Monday, said goodbye amongst a welter of overtired children, and they flew off on Tuesday. And, unless we're feeling extraordinarily adventurous or else they're feeling especially homesick, I'm suspecting that parallel blogging is possibly as close as we're going to get for the next couple of years.
Tia
Tuesday, 18 August 2009
Blogging for Sanity
An anniversary whilst we were away; two years since my first blog post. One of my better I think; perhaps I should have left it there. I had lofty dreams of somehow instantly becoming known as an insightful, witty, blogger, someone who would effortlessly churn out endless entertainment which would somehow be seized on and read by millions. No children would be identified; this would be a blog about me, the parent/fostercarer/woman behind the child in the wheelchair; the children themselves would be but bit players in my grand theatre. Ego much?
And then Goldie died, and life wasn't terribly funny for a while. And this blog became my outet. Uncomfortably personal at times perhaps; I've certainly had people worry that this is my own private diary and that I have somehow forgotten to hide it from public view. Not so; I don't reveal everything here, but writing things out and knowing that it will be read by someone or someones definitely helps me to shape my own thoughts. Posts then perhaps become thoughts in progress? No wonder they're often long-winded; I guess I think slowly.
Putting my thoughts down here, sometimes deeper, sometimes marking a memory, sometimes just sharing a moment; it helps to empty my mind before I sleep. I blurt it all out; I edit quite a bit of it away, refine the rest and then what's published is gone, off my mind and onto the page, and I can sleep.
It's been surprisingly useful as an archive; I can click back through the months and see what's changed, what's the same. Not that our whole lives are up here; we definitely have too much life for that, and so much of it is other people's stories. But I think there's some kind of essence here - enough to get a hint of the flavour of our days. I hope so anyway.
I find myself up to my elbows in poo (and no, not metaphoric poo), and as I wipe it away I find myself mentally composing the blog post that will describe it. I don't end up writing even half the many bodily fluid posts I've thought of (aren't you thankful for that?), but the mental process takes my mind off the smell and the heat and the squishiness (and now you're really thankful I don't share more I'm sure).
Sitting in a traffic jam with a screaming child to my left and a suspiciously silent child behind me (who will later turn out to have been scattering powdered multivitamins over the car and her powerchair), I find just the right turn of phrase, and in doing so, forget to get frustrated over the delays and distractions. And then the traffic moves on, and the child stops screaming,and the other inhales the loose powder and chokes so we have to stop anyway, but I'm doing my best to forget about that, and our life moves on and there's another post unpublished.
Sweetness from today; Little Fish doing a medical handover for Mog when we got to the hospital this morning. Bittersweet perhaps; how has she come to know so much about her sister's medical needs, and how has she become so used to hospital that she knows what info to give to the receptionist? And silliness too; the appointment was for Little Fish so her detailed information seriously confused the issue. Celebrations - Little Fish's hip has been declared healed and healthy and she can get back to doing everything she was doing before. And sadness; it looks as though she'll need surgery on her foot, the leg will stay shorter than the other, and although the registrar didn't say what was worrying him, he was very keen to know when our next spinal review was going to be.
Meanwhile on the home front, three loads of laundry all trying to dry out on one clothes horse, one house covered in playdough and breadcrumbs, but a garden which has been transformed in our absence. And a van which needs surgery again itself, Little Fish having crumpled the back door on the left again.
A mixed bag; a mixed blog. Here's to the next two years.
Tia
And then Goldie died, and life wasn't terribly funny for a while. And this blog became my outet. Uncomfortably personal at times perhaps; I've certainly had people worry that this is my own private diary and that I have somehow forgotten to hide it from public view. Not so; I don't reveal everything here, but writing things out and knowing that it will be read by someone or someones definitely helps me to shape my own thoughts. Posts then perhaps become thoughts in progress? No wonder they're often long-winded; I guess I think slowly.
Putting my thoughts down here, sometimes deeper, sometimes marking a memory, sometimes just sharing a moment; it helps to empty my mind before I sleep. I blurt it all out; I edit quite a bit of it away, refine the rest and then what's published is gone, off my mind and onto the page, and I can sleep.
It's been surprisingly useful as an archive; I can click back through the months and see what's changed, what's the same. Not that our whole lives are up here; we definitely have too much life for that, and so much of it is other people's stories. But I think there's some kind of essence here - enough to get a hint of the flavour of our days. I hope so anyway.
I find myself up to my elbows in poo (and no, not metaphoric poo), and as I wipe it away I find myself mentally composing the blog post that will describe it. I don't end up writing even half the many bodily fluid posts I've thought of (aren't you thankful for that?), but the mental process takes my mind off the smell and the heat and the squishiness (and now you're really thankful I don't share more I'm sure).
Sitting in a traffic jam with a screaming child to my left and a suspiciously silent child behind me (who will later turn out to have been scattering powdered multivitamins over the car and her powerchair), I find just the right turn of phrase, and in doing so, forget to get frustrated over the delays and distractions. And then the traffic moves on, and the child stops screaming,
Sweetness from today; Little Fish doing a medical handover for Mog when we got to the hospital this morning. Bittersweet perhaps; how has she come to know so much about her sister's medical needs, and how has she become so used to hospital that she knows what info to give to the receptionist? And silliness too; the appointment was for Little Fish so her detailed information seriously confused the issue. Celebrations - Little Fish's hip has been declared healed and healthy and she can get back to doing everything she was doing before. And sadness; it looks as though she'll need surgery on her foot, the leg will stay shorter than the other, and although the registrar didn't say what was worrying him, he was very keen to know when our next spinal review was going to be.
Meanwhile on the home front, three loads of laundry all trying to dry out on one clothes horse, one house covered in playdough and breadcrumbs, but a garden which has been transformed in our absence. And a van which needs surgery again itself, Little Fish having crumpled the back door on the left again.
A mixed bag; a mixed blog. Here's to the next two years.
Tia
Saturday, 8 August 2009
Porch Party
Visiting on each other's porches isn't somthing I'd be terribly likely to do in real life, not least because most porches in this country tend to be small things about 3 foot wide and 2 foot deep, just big enough to keep the worst of the rain pouring down the back of your neck and soaking your rucksack off as you wait for someone to answer their front door. But Lynette is having a virtual porch party this weekend, and, tempting as the prospect of staying at home and wallowing in self-pity is, I thought probably joining a different kind of party was probably a better use of my time.
I know a couple of you who hang out over on Lynette's virtual porch, but most of the rest of you are strangers - so here's me, stepping out from the bushes and putting the binoculars down ending a lurk and joining in. Hello!
In no particular order then, ten things about me. Regular readers who don't Lynette's blog can either ignore this or read on, go and read up on hers or do something else. But then you didn't need my permission to do that anyway. You'll notice I don't promise ten interesting things, just ten things. Read on at your own risk. Thank you.
1. I just bought two pairs of jeans, one size smaller than they've been for several years, despite a week of eating cake and takeaways. Go me!
2. I eat by feel more than by flavour. Malted milk biscuits, vanilla shortbread, Dairy Milk are all nice warm flavours. Mint, dark chocolate, lemon, and tomato are cold flavours. Cherry tomatoes are the worst, and remind me of bursting boils. I just know you're all delighted with me for sharing that last titbit.
3. I have two unfinished tapestries, one unfinished cross stitch, four unfinished pieces of knitting, three unfinished dresses and a long and useless piece of oddly shaped crochet. It is highly unlikely that any of these will ever be finished. I also have 30 yards (combined length) of shower curtaining and nursery mattress covering, none of which will ever be used. Anyone living locally wanting waterproof mattress covering or shower curtaining, please call in!
4. I'd rather curl up with a good book than go out for an evening.
5. I have not been able to light a scented candle in the house since Mog made it very apparent that she doesn't like them. I miss this. I'd like to know why incense is a problem for her but air freshener spray is not.
6. I do not enjoy the fact that my iMac has no right click. I'd like to know how mac users do many of the things I use the right click for, and how long it'll take me to work out what to do instead.
7. I am bored of having to turn Little Fish over in bed; she didn't used to need help doing this and now it can be every ten minutes or so. I am not an endlessly patient mother under these circumstances.
8. I never know how to answer the question "how many children do you have?" Three is too intimate for casual questioning, and two feels like a betrayal every time I say it.
9. I am now officially actively fostering again, and whilst I'm not expecting any placements before September, I am now available for short term under twos. This is exciting for all three of us, and apparently deeply concerning to everyone else. Share my joy, please, people!
10. This blog (in general, not this particular post) is a curious mixture of personal and public stuff. So much I choose not to post, so much I am asked not to post, so much else I choose to post which some people think I shouldn't. I try not to offend, upset, or break confidences. Where I have, I'm sorry. I wonder how accurate a picture of our life it portrays.
That's it; I'm off to meet some of the rest of you now!
Tia
I know a couple of you who hang out over on Lynette's virtual porch, but most of the rest of you are strangers - so here's me,
In no particular order then, ten things about me. Regular readers who don't Lynette's blog can either ignore this or read on, go and read up on hers or do something else. But then you didn't need my permission to do that anyway. You'll notice I don't promise ten interesting things, just ten things. Read on at your own risk. Thank you.
1. I just bought two pairs of jeans, one size smaller than they've been for several years, despite a week of eating cake and takeaways. Go me!
2. I eat by feel more than by flavour. Malted milk biscuits, vanilla shortbread, Dairy Milk are all nice warm flavours. Mint, dark chocolate, lemon, and tomato are cold flavours. Cherry tomatoes are the worst, and remind me of bursting boils. I just know you're all delighted with me for sharing that last titbit.
3. I have two unfinished tapestries, one unfinished cross stitch, four unfinished pieces of knitting, three unfinished dresses and a long and useless piece of oddly shaped crochet. It is highly unlikely that any of these will ever be finished. I also have 30 yards (combined length) of shower curtaining and nursery mattress covering, none of which will ever be used. Anyone living locally wanting waterproof mattress covering or shower curtaining, please call in!
4. I'd rather curl up with a good book than go out for an evening.
5. I have not been able to light a scented candle in the house since Mog made it very apparent that she doesn't like them. I miss this. I'd like to know why incense is a problem for her but air freshener spray is not.
6. I do not enjoy the fact that my iMac has no right click. I'd like to know how mac users do many of the things I use the right click for, and how long it'll take me to work out what to do instead.
7. I am bored of having to turn Little Fish over in bed; she didn't used to need help doing this and now it can be every ten minutes or so. I am not an endlessly patient mother under these circumstances.
8. I never know how to answer the question "how many children do you have?" Three is too intimate for casual questioning, and two feels like a betrayal every time I say it.
9. I am now officially actively fostering again, and whilst I'm not expecting any placements before September, I am now available for short term under twos. This is exciting for all three of us, and apparently deeply concerning to everyone else. Share my joy, please, people!
10. This blog (in general, not this particular post) is a curious mixture of personal and public stuff. So much I choose not to post, so much I am asked not to post, so much else I choose to post which some people think I shouldn't. I try not to offend, upset, or break confidences. Where I have, I'm sorry. I wonder how accurate a picture of our life it portrays.
That's it; I'm off to meet some of the rest of you now!
Tia
Thursday, 6 August 2009
New 'Puter
One fried laptop, one ancient desktop, and a newfound love for my iPhone and Mog's iPod. Plus a carer here who has banned me from saying anything bad about her on this blog tonight, but who happens to be in love with all things Mac. So please forgive the brevity of this post; I'm trying to feel my way around a totally completely different kind of a computer. And forgive the awfulness of the picture; we got home and then Little Fish used it to watch Charlie and Lola, and then C used it to play on Facebook and then suddenly it was very late indeed.So far so good though...
Tia
Monday, 27 July 2009
Google Roundup
Haven't done one for a while.
Can a child wear a hensinger collar when sleeping? Mog does; she doesn't wear it when she's sleeping in bed though. If you find the answer, can you let me know? I'm sure it would help on nights when she's obstructing badly.
Politically correct word for chicken pox. Chicken pox is non-pc these days? You learn something new every day. Chickens, I'm sorry if I offended you. Still no spots here, if anyone was wondering. Mog's coughing and Little Fish is tired, but Mog's had the pox so whatever's bothering her, it isn't that.
collapsed in a heap. Who? Where? When? Why and how? If it's you, then glad you recovered enough to google it - you might find "faint" a better term to search in future. Please get yourself checked out if it happens again. If you've just found someone else in this state then unless you know they're drunk and sleeping it off, I suggest you find more immediate help than my blog. A first aid course might be a useful thing to consider...
Been an odd day here. Respite this afternoon; three hours which I squandered on finding a new padlock for our garage; the old one having rusted fast. I now have a lovely new high security one, which I will fit just as soon as I can work out how to remove the old one; key not working and it's supposed to be bolt-cropper-proof. How long do you think I could work at it with a hacksaw before someone called the police? Answer is actually no time at all; all my tools are neatly stored inside the inpenetrable garage...
We had a therapist visit this morning. She told us that, unfortunately, we probably won't get any more therapy visits this summer, as the therapists have all been seconded to staff the Tamiflu Depot. There's a good idea, take the therapists who have Monday to Friday, term time only, contracts, and require them to provide rotating cover handing out drugs to the close family and friends of those suffering from the porcine plague. Then send them back out into the community, to work with some of the most vulnerable people in the county, having been in close contact with those who are caring for people with the swine flu. I did tell her I was more than happy for them to keep away in that case.
I did acheive something today though - I found my bedroom floor! Hurrah for me; it only took all day.
Tia
Can a child wear a hensinger collar when sleeping? Mog does; she doesn't wear it when she's sleeping in bed though. If you find the answer, can you let me know? I'm sure it would help on nights when she's obstructing badly.
Politically correct word for chicken pox. Chicken pox is non-pc these days? You learn something new every day. Chickens, I'm sorry if I offended you. Still no spots here, if anyone was wondering. Mog's coughing and Little Fish is tired, but Mog's had the pox so whatever's bothering her, it isn't that.
collapsed in a heap. Who? Where? When? Why and how? If it's you, then glad you recovered enough to google it - you might find "faint" a better term to search in future. Please get yourself checked out if it happens again. If you've just found someone else in this state then unless you know they're drunk and sleeping it off, I suggest you find more immediate help than my blog. A first aid course might be a useful thing to consider...
Been an odd day here. Respite this afternoon; three hours which I squandered on finding a new padlock for our garage; the old one having rusted fast. I now have a lovely new high security one, which I will fit just as soon as I can work out how to remove the old one; key not working and it's supposed to be bolt-cropper-proof. How long do you think I could work at it with a hacksaw before someone called the police? Answer is actually no time at all; all my tools are neatly stored inside the inpenetrable garage...
We had a therapist visit this morning. She told us that, unfortunately, we probably won't get any more therapy visits this summer, as the therapists have all been seconded to staff the Tamiflu Depot. There's a good idea, take the therapists who have Monday to Friday, term time only, contracts, and require them to provide rotating cover handing out drugs to the close family and friends of those suffering from the porcine plague. Then send them back out into the community, to work with some of the most vulnerable people in the county, having been in close contact with those who are caring for people with the swine flu. I did tell her I was more than happy for them to keep away in that case.
I did acheive something today though - I found my bedroom floor! Hurrah for me; it only took all day.
Tia
Tuesday, 21 July 2009
Why?
Mum, Mummy, Mum, Mummy Tia, Mum, Why we going out?
Why we going shopping?
Why we need food?
Why we get hungry?
Why we need to eat?
Why we eat to grow?
Why we...oooo Mummy, you a bit shouty.
And one member of the household who is jolly pleased I have had no laptop for the last couple of weeks.
The first time he's sat on my lap properly since he moved in I think. Great.
But what's this? More than one picture? That can only mean one thing - I HAVE INTERNET ACCESS ONCE MORE!
Thank you, Mr Fixit! And Mrs Fixit for loaning him out. Oh, and Master Fixit for going to bed without Daddy's help.
Scared to go to bed now incase it all fades away again overnight...
Tia
Why we going shopping?
Why we need food?
Why we get hungry?
Why we need to eat?
Why we eat to grow?
Why we...oooo Mummy, you a bit shouty.
And one member of the household who is jolly pleased I have had no laptop for the last couple of weeks.The first time he's sat on my lap properly since he moved in I think. Great.But what's this? More than one picture? That can only mean one thing - I HAVE INTERNET ACCESS ONCE MORE!
Thank you, Mr Fixit! And Mrs Fixit for loaning him out. Oh, and Master Fixit for going to bed without Daddy's help.Scared to go to bed now incase it all fades away again overnight...
Tia
Saturday, 18 July 2009
Happiness is
Unhappiness on the other hand - well that's one of the many feelings I'm sure a recent decision has left my friend Trina feeling.
Please click on over to her blog and read her news.I don't know how they will manage now - Jophie's needs can't just be shelved for a month or two, bills still need to be paid, and Trina does have to sleep occasionally, even if it is only for 30 minutes here and there as Jophie's needs permit. Trina has always worked as much as she can - her boutique clothing is unique, her jewelery (when she could afford to buy the silver) was imaginative, and now her recipe book is the result of at least a year of cooking, tasting, tweaking. All her efforts have gone towards meeting Jophie's costs over and above his allowance. And now that allowance has been discontinued. And suddenly I'm too aware of the distance between Ohio and here, especially now without proper access to the Internet. Please spare a thought and a prayer for Trina and Jophie, and if you have any ideas for ways she can earn money from home working around Jophie's care then I'm sure she would like to hear them.
Tia
EDIT: Triba's address is now correct, sorry folks.
Tuesday, 7 July 2009
So far so soggy
decided my life is not interesting enough, and my Internet connection
at home has been destroyed. New router needed. Happy happy joy joy. My
keyboard is now missing seven keys including most of the vowels, and I
poured half a pint of milk into my fridge door this morning. As well
as shattering the bottle.
Fun times.
Tia
Tuesday, 23 June 2009
Jophie's Jungle Boutique
Three cheers for Trina! Despite being quite ridiculously busy with Jophie, she still found time to set her Boutique brains in gear and come up with three beautiful outfits for three equally beautiful children.
Wanting to create outfits which weren't identical but went well together, looking for something suitable for a boy as well as two girls, wasn't easy.
We settled on this fabulous fabric. perfect for the Wahooligan and will be loved by Little Fish too. Mog's we decided needed toning down a little, but I left it to Trina to come up with the finer details.
And so she did. One girlie skirt and top with just a hint of crazy traffic around the edges for Mog.
One beautifully handsome very boyly outfit for the Wahooligan
which is a little blurry in the photo, but since he's a little blurry in our lives at the moment it seems reasonably appropriate,
and one tomboy supercute outfit for the Little Fish in the middle.
They didn't quite arrive in time for our holiday with the Wahooligan, but then I'm not sure LF's will fit over her brace, so that was definitely just as well. We'll have to fix a time for them to meet and force them to tolerate many photos together. Joys of being the adults; you get to torture small children with matching outfits and photo shoots.
There is just one teeny tiny problem with the outfits. They came with matching hair clips. Three of them.
I'm just not sure which one is meant for the Wahooligan?
Thanks again, Trina; I know they'll be loved and appreciated. And whilst Jophie's Jungle Boutique isn't fully stocked right now, I do know Trina is always interested in doing special orders, Jophie's health permitting.
Tia
Wanting to create outfits which weren't identical but went well together, looking for something suitable for a boy as well as two girls, wasn't easy.We settled on this fabulous fabric. perfect for the Wahooligan and will be loved by Little Fish too. Mog's we decided needed toning down a little, but I left it to Trina to come up with the finer details.And so she did. One girlie skirt and top with just a hint of crazy traffic around the edges for Mog.One beautifully handsome very boyly outfit for the Wahooliganwhich is a little blurry in the photo, but since he's a little blurry in our lives at the moment it seems reasonably appropriate,and one tomboy supercute outfit for the Little Fish in the middle.
They didn't quite arrive in time for our holiday with the Wahooligan, but then I'm not sure LF's will fit over her brace, so that was definitely just as well. We'll have to fix a time for them to meet and force them to tolerate many photos together. Joys of being the adults; you get to torture small children with matching outfits and photo shoots.There is just one teeny tiny problem with the outfits. They came with matching hair clips. Three of them.
I'm just not sure which one is meant for the Wahooligan?Thanks again, Trina; I know they'll be loved and appreciated. And whilst Jophie's Jungle Boutique isn't fully stocked right now, I do know Trina is always interested in doing special orders, Jophie's health permitting.
Tia
Subscribe to:
Posts (Atom)
LinkWithin
