Monday, 30 June 2008

4th time lucky

Mog's passport is here! We're all free to cross borders for the next five years, hurrah. Not that we have time to zip under the channel to stock up on wine and petrol experience the joys of French cuisine any time in the next few months, but good to know we have the option. And even better to know that it won't be passports causing the problems when we go to Italy in August.

Little Fish has her priorities straight. Shopping today, we bought a muffin. The cashier handed this straight to Little Fish, in a nice paper bag. Little Fish tucked her muffin in its bag under her arm and cradled it with both hands. We bumped into another pupil wearing school uniform and chatted for a bit. Well, other child, parent and myself chatted. Little Fish guarded her muffin "that my cake". We talked about names, classes, medical appointments (took a long time to make the coffee apparently). And Little Fish answered all questions with a suspicious look at the other child, a tighter grip on her bag and a repeated "That MY cake". Drinks sorted, we went our separate ways. I had to leave Little Fish on the pavement and move our van in order to fold out her ramp. This is usually a cue for her to panic and scream and sob, causing many people to rush to her rescue and glare at me accusingly. I not entirely sure what they expect me to do about it - fold the ramp down onto the bonnet of the car behind in retaliation for not leaving the space perhaps? Or lift small child (not a problem) and large tankpowerchair (problem) in through the side door? Anyway, this time Little Fish looked around as I reparked, no unhappiness at all, just an even tighter armpit squeeze on her muffin and anyone who approached her was told very firmly "that MY cake". Definitely better than "MUMMY GONE WAAAAAHHHH". I may have to consider providing her with a paper bag full of cake for all future parking manouvres. Possibly. Loaded up the van and tried (but failed) to wrestle the muffin bag away from her, in order to open it up and give her a handful of cake crumbs. No luck - "That MY cake". Gave it up and drove off. Turned around to find she had carefully leaned across and parked her cake bag in the empty seat next to her, as close as she could get it to the seatbelt. Serious stuff, this cake guarding business.

Got home and she collected her cake in its bag from its car seat. And clutched it to her, demanding dinner. Ate her dinner, leaving cake untouched in its bag. Refused her pudding and clutched her bag to her. Fell asleep (early) this evening, exhausted from her day and full of broccoli casserole.

Readers, I have eaten her cake (and very good it was too).

Sunday, 29 June 2008

Self defense?

So, your family take you to a barbecue, and a kind host gives you a remote control car to play with.
You discover that your big sister's wheels make a great garage.
And finally, when you notice the great big scary woof monster, you have a way of handling it.
Disclaimer: no actual dogs were harmed in the taking of these photos. The wheels got stuck in the ditch.


The world according to Little Fish

I just thought she was being peaceful company!


Saturday, 28 June 2008

What do you do?

When two little girls both wake up ridiculously early?
Saturday morning television of course! Little Fish seemed to think it was a little scary, but Mog was rather more impressed.

Television delayed the inevitable for an hour or so, but eventually that point in the morning arrived when it was either leave the house or do nothing but get annoyed all day. So, since Mog had told Uncle Colin she was going to be spending her birthday money on new trousers, we went into Oxford.

First stop Debenhams, where a rack of brightly coloured pinafore dresses caught Mog's eye. Thankfully only in a figurative sense, although Little Fish's enthusiastic pushing of Mog's chair nearly rendered it physically true too. I pulled out the dresses to show her properly and she gave a very enthusiastic yes. I pointed out that they weren't actually trousers, and showed her some nice trousers. She closed her eyes. Picked up the dress and she gave a wide eyed yes again.

Little Fish and I persuaded her to have a look elsewhere first. We called in at Gap where Mog quite liked one tshirt - sold out in her size. She refused to look at any of the others. Tried Monsoon but the children's clothes had been moved downstairs with no lift. M and S next, where Mog refused to look at anything at all. Back to Debenhams, where after a feeble attempt to convince her to think about music or story books instead, we bought the dress.The cardigan matched it and other clothes too well to be passed by.

And these boots were too perfect not to be bought for winter and chilly camping nights No zip, no pushing, just a velcro tab halfway down and an opening right to the bottom. Perfect.

Lunchtime next, pasta and icecream.

Waddling Walking back to the bus we passed the Ashmolean, and decided to take a detour. When we got inside, we realised they were having one of their monthly children's activity sessions. This time the challenge was to make a landscape painting. With children to the left and right drawing boats on oceans and trees on horizons and ducks in ponds, my girls combined to create this

Mog was in charge of colour and texture, and Little Fish on layout and glueing. Is it a seascape? Cyclone at twighlight? The inside of my wardrobe?

Friday, 27 June 2008

Saved by the bells

No, Mog doesn't need you to clean her teeth with a bib
Put that medicine bottle DOWN
Stop pressing the buttons
Put the knives back and shut the drawer
Get away from the mirror with that banana
No, the fish don't want to eat your yoghurt
There is no more chocolate
Get AWAY from the taps
Please, just let me WEE IN PEACE!
Yes, Little Fish?
Thank you cooking my dinner, kiss you chin and knees now.

Melt. Cuddles all round, deep breath, and find something nice to do together.

A morning of finding more things Little Fish should not be doing, touching, moving, fiddling with or otherwise destroying. And then salvation, a phone call "We're going swimming, want to come?"

A swim, a plate of chips (and only one bad choke), an ice lolly, a nicely tired Little Fish happy to spend the afternoon snuggling with more mutual kissing of knees and chins and other pointy bits, some piano playing and some cooking once Mog came home.

And then the doorbell too "that my Daddy 'ere now" - Grandad home from Australia and calling in to see us all. Much excitement from both girls and more entertainment until bedtime.

And now? A silent house, Little Fish is sleeping having finally found a comfortable position for her new Nippy mask - we have three masks on rotation at the moment and they're each differently uncomfortable. This one seems to be the best fit, but it needs tweaking just right to avoid blowing into her eyes all night.

An evening phone call from my brother; Mog was able to shout at him to let him know she likes his birthday present and that she wants to go shopping to buy trousers with her birthday money. That's tomorrow sorted then - not sure why she feels the need for trousers but since this was the year of the sock perhaps she wants something to match. She's now sleeping sweetly too, presumeably dreaming of a day at the shops. I wonder what Little Fish will make of that as an option.


Any baby wearers out there?

Here's a nice thing.

When Mog was a baby, she cried all the time. All the time. Not in the "all babies cry" sense, but in a desperately lonely, lost, kind of a way. We carried her. All the time. It didn't stop her crying, but it reduced the intensity of the cry, it gave her comfort. And it certainly helped me to feel less useless; I might not have been able to stop her from crying but I could at least make sure she was snuggled and loved and could hear my heart beating as she cried. And eventually, things did change. She stopped crying when she was held, and only howled when she was put down. A long time later, she was able to be happy even when she wasn't being held all the time. Even now though, when she is miserable and confused and lost, she needs to be held and rocked for comfort.

Once she had grown out of her sling we used it for other babies, we used it for Little Fish when she came to visit. And it sits in the cupboard now, waiting to be needed again.

I do love the convenience of a sling. A buggy holds everything you could wish for and more, but with a sling you have a little baby moulding themselves to your body. The action of walking rocks the baby more naturally than the fanciest of battery operated vibrating musical swings can. You have eye contact just by looking down, and you are never out of earshot. Never out of sight either, which was handy with Mogs vomiting abilities (and a carefully tucked muslin saves most of the mess). You don't have to worry about moving the baby from cot to pram in order to go out, just wrap a cloak around the pair of you. And with a nice soft cloth sling, once you get back in again if the baby is still sleeping and you want a break from carrying, you can simply slip the sling off complete with child and leave them to sleep somewhere safe.

Especially with a fostered child, the sling provides a connection. I may not have been able to shelter this child before they were born, or from whatever they have experienced between birth and getting here, but a sling provides a safe shelter, a cocoon, as the child grows to know you. At the same time, the sling creates a barrier; the child can hide inside and strangers cannot easily reach in to pat heads and tug cheeks. When the world has not been a safe place, a sling can provide a sanctuary for the child.

So, here's a competition for anyone who has babies, or is hoping to, or who knows someone else who might benefit. Or anyone really!

Win the Essential Babywearing Stash from Along for the Ride (one Beco Butterfly, one Hotsling baby pouch, one BabyHawk Mei Tai, one Zolowear Ring Sling, and one Gypsy Mama Wrap)

Thursday, 26 June 2008

Gang Aft Agley

The best laid plans...

Today was the annual preschool picnic, a day in a local park with several hundred of the wee beasties little angels running around with parents and younger siblings, some activities laid on and lots of ducks and small rabbits to look at in terror then whizz your wheelchair behind Mummy's legs feed.

Much discussion had taken place about the coach, how it would need to be accessible for Little Fish (a compromise, they found one with boot space for her manual wheelchair), places were signed up for, fees were paid, picnic ingredients were purchased.

I was in two minds about going - Little Fish has a cold and has been sleeping for about 15 hours a night. If the day was scorchingly hot or wet then we would have cancelled. However, we awoke to a beautiful baby bear's porridge of a day*. Excellent.

I say we awoke; I mean I awoke (woke? waked? the more I type it, the wronger it looks). Nearly destroyed the alarm when it went off, having been up with Mog until past midnight fighting the seizure monster together. But wake I did, and even found some undribbled on clean clothes.

Both girls slumbered on.

Our carer arrived, and started to sort out some clothes for Mog, who opened her eyes and decided to face the world. A good start. Little Fish even managed to rouse herself by 8, and ate a good breakfast. And won my undying gratitude for admiring my clean blouse and saying "oh pretty Mummy". Hurrah!

Such a shame it all went downhill from there then. Mog was twitching quite a bit early on, but stopped with her morning meds. Stopped just long enough for me to write a long essay in her home/school book about how she'd had a bit of a rough night, but seemed to be more or less ok this morning. And then, as I filed the book into her bag, she started fitting again. Not big scary jerky seizures, just the subtle ones she has where she's clearly away with the fairies, eyes all over the place but the rest of her body doing more or less what it's supposed to do. So we watched. And waited. And cancelled the school bus, and watched, and waited, and cancelled the trip with preschool, and watched and waited some more. About three hours of gentle non-convulsive seizures later she heaved a giant sigh and started hinting for music.

It's hard to know what to do with these seizures. They don't affect her breathing, they don't seem to upset her - if she's got to have siezures at all then the nice non-convulsive ones are the ones to go for. But on the other hand, knowing whether to treat or not to treat them is much harder - when she's rigid and shaking in the middle of the night, it's relatively easy to reach for the Midazolam and chase the seizures out of her, knowing that she will need to sleep the Midazolam off for the next few hours too. Much harder to make that decision when the only signs of a seizure are that she's not responsive and her eyes are running mini marathons.

Anyway, sigh she did, and stop she did, and lazy afternoon we had (use the force for good, you must, Luke). She started up again at tea time, so we cancelled Rainbows - and as soon as the phonecall had ended, she stopped twitching. And had another beautifully giggly evening, howling with laughter over the huge excitement of having a shower and then singing along to Il Divo before sliding into a peaceful sleep.

Little Fish meanwhile I think also benefitted from a quieter day. Lots of thumb sucking and cuddles, and distractions to prevent her from sneaking up behind Mog and shouting "WAKE UP!" in her ear. Not the best way to bring her out of seizures, although jolly useful for assessing levels of consciousness during them.

Tomorrow is an empty day, so far. That sounds quite nice to me; I wonder how we'll fill it?

*not too hot, not too cold

Wednesday, 25 June 2008

RIP Sooty

Sleep well, no children or dogs or sneezes to bother you now.

What is there to say about Sooty? He came into our lives, at a decent interval after the death of our childhood cat, Pussy. Now Pussy arrived when I was around 18 months and died when I was around 18 years old, not a bad life for a cat. Sooty arrived aged about 3, traumatised from the move from loving family who couldn't keep him to temporary home in a house with lots of dogs, and then to us. A nervous cat. A beauitfully sleek black cat with a tinge of deep redness under the glossy blank coat. A dusty cat; he never did master the art of keeping himself properly clean. A cat who liked to hide under the bed or bask in the sunshine, joining the family for cuddles and attention but off in a flash at the first hint of a rustled newspaper or a stranger in the house.

He didn't have any superfeline powers, he didn't have any special tricks or abilities. Unlike Pussy, he didn't used to be able to recognise the sound of Dad's car and be waiting for him at the end of the day; unlike Sadie he didn't master the trick of velcroing himself to the window, and unlike Henry he didn't sit on shoulders or wrestle with ink pens. He was just a cat. Quiet, unassuming, well mannered. And old, and uncomfortable, and, ultimately, acutely unwell.

We will miss him.

Feeling like a Monday

but in 12 days it'll be Saturday night.

Early mornings, wet beds, too many phonecalls, too much clutter and chaos. At hospital every day next week.

Roll on the 7th - we are all booked to the hospice (so if anyone else around here could avoid getting seriously unwell and bumping us out of respite, that would be great, thanks).


Tuesday, 24 June 2008

Maybe it's because I'm an Anglican

that I love Angles so?

On Sunday our Vicar stood up in front of the congregation and apologised for the Anglican Church. Now that's something you don't see every day. Shortly after the service, he left on a plane for Jerusalem where he is attending the Global Anglican Future Conference. I've been pondering this ever since.

I'm a Christian first, and an Anglican second. Church of England Anglican too, for what it's worth.

I believe in God, the Father almighty,
creator of heaven and earth.

I believe in Jesus Christ, God's only Son, our Lord,
who was conceived by the Holy Spirit,
born of the Virgin Mary,
suffered under Pontius Pilate,
was crucified, died, and was buried;
he descended to the dead.
On the third day he rose again;
he ascended into heaven,
he is seated at the right hand of the Father,
and he will come again to judge the living and the dead.

I believe in the Holy Spirit,
the holy catholic church,
the communion of saints,
the forgiveness of sins,
the resurrection of the body,
and the life everlasting. AMEN.

But you know what? The Apostle's Creed, that's the easy bit. Beyond that, what do I believe? What does my church teach? I know, completely and utterly and absolutely, that the church where I worship is my home church, it is where I am supposed to be. Shopping for a new church isn't the solution. It isn't a perfect church, but then we aren't a perfect people, so how can it be?

I can't see into the future, but I don't think it takes a crystal ball to predict schisms within the wider Anglican fellowship. Where do I stand in this? Where do our church leaders stand in this? And what are we going to do about it?

When two equally committed and sincere Christians hold two opposing views, who is wrong? How about when two Bishops disagree? Two Archbishops? Is there a way for both views to be right?

Praying that the truth will out.

Monday, 23 June 2008

An Apology

It seems I have upset nursery. I'd like to apologise for that, and have edited the negative comment.

To redress the balance (although, having read through this blog, I can find precisely one negative comment and a large number of positive ones), I should like to say how much I appreciate the good things nursery do for both girls.

Mog has been in nursery for four years now, and will be leaving at the end of term. During those four years she has been loved, cared for, stimulated and educated. She has had staff around her who have learnt to read her, who know when she is tired and when she is ill, who can tell when she is having seizures and which ones need treating, who know the kind of stories she likes to listen to and the music she likes to sing along to. She has had a safe space to get used to not being constantly by my side, she has had plenty of cuddles but has also learned how to sit without being cuddled. Mog has been appreciated for who she is, she has been surrounded by people finding ways to help her - not to fix her, but to enable her to do the very best she can with whatever she has.

Little Fish has had just one year at nursery, and it has been a very different experience. Not different in a negative sense, different in that Little Fish presents very different challenges. Mog needs time, patience, gentleness and persistence. Little Fish needs firmness and jollility in equal measures. That is inevitably an oversimplification; nursery have adapted to meet the needs of both children, and have grown from a group of three when Mog first started to a group of around twelve now.

In the past four years I have seen the layout of the class change to better reflect the changing needs of the pupils. Links have been forged with a local mainstream nursery, as well as what appears to be a greater involvement in whole school activities. The staff at the nursery have been flexible and helped me out, keeping hold of Mog for extra time at the end of a session at times, offering help and support out of school time during family emergencies. They have explored new ways of overcoming Mog's spasm, done training to find ways to help Mog communicate, found quiet spaces for Mog to rest when unwell whilst at the same time finding ways of keeping Little Fish and other more active pupils busy and stimulated. Time and training have been offered to Little Fish's mainstream placement, staff from nursery attend meetings called by social services and the hospital as well as education.

It isn't perfect. But then, it isn't going to be perfect. Perfect would be finding a way of giving Mog her own voice. Not just 2 messages or 4 messages but somehow bypassing her broken body and connecting her mind to the outside world. Perfect would be a way of having someone to chase Little Fish around and keep her and others safe from harm whilst at the same time giving her the freedom to explore her world at all times, but somehow managing that without having someone glued to her side every minute of the day. Perfect would be making my girls the top priority, every minute of the school day. These are all totally unrealistic expectations, born from my own guilt and sense of failure as a parent.

I want to be able to give Mog a voice. I want to be able to dedicate myself to her, every minute of the day, to watch every nuance of emotion as it passes over her face, to translate all her thoughts into words which can be shared with the wider world. It isn't ever going to happen. She wouldn't be able to cope with that level of stimulation even if I, or someone else, could provide it.

I want to be able to give Little Fish the freedom other children her age enjoy. I want her to be running free - ok so her legs don't work, but I want her to be able to run with her wheels. I want her to be able to do simple things like drink a glass of water without risking drowning, I want her to be able to play in a sandpit without eating the sand, I want her to be able to keep her head above the water when swimming with her mainstream peers. But a wheelchair isn't a pair of legs, and the damage her tank can do doesn't compare to the damage a misplaced foot can cause. And whether it's delay or learning disability or whatever, she is behind her peers; not only is she never going to be top of the class, she might actually not cope towards the bottom of it either. I want someone to take hold of her and make her learn the difference between different colours, the way to draw a face, the way to eat with a fork. And it isn't something I can force. Even if she were at home with me all day, and even if I had nothing else to do all day but be with her, she will do these things at her own pace. Or she won't.

I want to be able to justify my decision to allow my girls to go to school by looking at the spectacular progress they make there, by showing that the things they do there are things they couldn't do at home, by stepping back in admiration at the wonderfulness of the things they acheive every day.

And the fact is, none of that is going to happen. It's totally unrealistic, completely impossible. What they get at school is far better than what they'd get at home - if only because if they were both at home with me all day I'd be far too tired to do anything with them at all. But that's not all - the staff at the school are trained and experienced and do do a great job. They see and celebrate all the little inchstones just as I do. And they are able to step back and see the bigger picture too, something I can't do. We do disagree about the best way to do things at times - sometimes because I am unrealistically expecting my girls to be first and only, as opposed to two of twelve, sometimes because I am unrealistically expecting my girls to be less disabled than they actually are, and sometimes because we have a different understanding of priorities.

Sometimes of course, when we disagree, I am right! But those times when I truly believe I am right, if after discussing things with nursery (and communication is another strength of theirs) I cannot get my point across, then I have two choices. Take the girls out, or let nursery do things they way they want to do things, the way they need to do things. If I choose not to take the girls out then I suspect I forfeit my right to complain too.

It isn't always an easy balance. I've worked in schools before, I've seen the other side. I've been the carer having to deal with the nightmare parent. I have resolved not to morph into that parent from hell, but I can feel that coming through under the surface at times. Not because the school isn't doing a good job necessarily, but because I want things to be different, better, for the girls. I want to change the world in their favour, take out the unfairness, make all things possible. I want it to be true that the only thing handicapping a wheelchair user is a flight of stairs, the only thing handicapping a non-talker is a flat battery on a communications aid. And that isn't true, isn't possible.

The girls are my girls and I love them. I love them for themselves, I love them the way they are. And the nursery staff do too - I know this. I want things to be different, better, for the girls - I don't want to change the girls, I want to change things for the girls. It can't be done - but that doesn't stop me from getting frustrated by the fact that it isn't being done. I'm sorry R et al; you got caught in the crossfire between me and the universe.


Sunday, 22 June 2008

Can't make a cake without breaking eggs

You can't make much of a cake if your small child does this either.
Ever tried cleaning eggs off a floor before? The yolks are alright but those slippery whites don't stick to the cloth, they won't be gathered up in fingers, they just flow through or around whatever you use to sop them up.

Meanwhile small child, obeying the command to "just stay AWAY whilst I clear it up" decides to help herself to a drink instead, using a cup given to me by Goldie's grandmother.
Anyone for eggless sponge cake served on a plastic plate? There are times when removing her mobility is really really tempting!


Saturday, 21 June 2008

Full Circle

Take a break if you will from the ongoing saga of Mog's birthday blogs, and consider this.

A child has a poor swallow, and ends up aspirating dribble.
This causes chest infections.
So, this child takes a medication to dry up the dribble.
The medication causes a urine infection.
The child takes medication to treat the urine infection.
As a side effect of the medication, the child develops constipation.
As a side effect of the constipation, feeds stay longer in the child's stomach; nowhere else for them to move to.
This causes the child to aspirate.
This has caused a chest infection.

Not Mog but one of our friends; another cycle in the life of a disabled child.

On a more positive note, consider this, as mentioned by Becca in her comment on Mog's birthday post. WANT! We did have a little power chair - one of the old style BIME buggies - for Mog when she was smaller. Actually we still have it; it's sitting in the garage looking for a good home. She couldn't hold the joystick (or sit upright in it, or balance, or hold her head up!) but she did enjoy sending it in circles backwards. She did enjoy her little trike too and knew what she needed to do to make it work. Unfortunately her hips are too sore now to use either of them any more.

So, who will win the lottery for us?

Friday, 20 June 2008

More birthday blogging

Mog's birthday started yesterday with a big multiple family breakfast; croissants with three mothers*, one father, and various assorted siblings and friends. We then went on to Kidzsouth, where we met up with some of our Special Kids friends as well as checking out some rather fantabulous equipment. Turns out that pedalling a trike with Mog's wheelchair on a platform on the front is harder than it looks - especially in a crowded exhibition hall! I believe a friend has photographic evidence so when her computer's running properly I may post the evidence.

The day finished with Mog making her promise as a Rainbow Guide - using her switch she promised to "do my best to love my God and to be kind and helpful". We'll see...

Today the fun continued with a second day off school. First stop, a support group for families of children who use the Community Nurses. Stories and foot massage for Mog, always welcome. Next stop a wheelchair clinic for Little Fish. Not quite so exciting for Mog perhaps, except lots of people who know her and who haven't seen her for a while. So lots of praise and comments.

And then an exciting evening. We listened to this

And tasted some of thisWhilst enjoying watching this:And getting excited about this:Sadly we then had to turn off cameras as the show proper began, but Mog was absolutely transfixed. Little Fish didn't hate all of it, and that is lots better than I was expecting. By the end of the show she was clapping along and shouting "Heyoo Man" to the clown. Mog meanwhile was taken with the whip cracking - I think she was getting ideas for keeping her servants in order - and by the human juggling acts (strong men juggling with little girls) - I have a feeling she may have been thinking of it as a novel form of physiotherapy!

This was a lovely small circus, intimate and coherent. Mog's older sister summed it up on the bus on the way back I think - "there was a fire and a passion, and they showed a strong community feeling". I'd like to have collected more of her thoughts, but she and her friend got distracted by the ongoing adventures of Mrs Rustypants and the man-eating doughnut, a story they are apparently in the middle of writing.

Home and tumble the girls into bed where Mog is falling asleep in Birthday pyjamas listening to new Birthday opera on CD with small red marks around her neck from her Birthday necklace but perhaps we won't mention that .

The house is nearly silent, and I need my sleep.
Night all,

*birth mother, guardian mother, God mother!

Thursday, 19 June 2008

Happy Birthday Mog

Six years ago you came into this world, and six years ago you nearly left it. I know your life isn't easy, but I'm glad you decided to stick around. Knowing you has made my life richer. We live life in the slow lane; taking time to appreciate all the little changes around us. Thank you.

You were such a miserable baby. So desperately unhappy; you didn't know who you were, where you were, what you were even. You only stopped crying when we swaddled you, let you suckle on a finger, played loud music, swooped you around the room. And even then, you only stopped for seconds.

For your first birthday, we fed you chocolate cake, and you smiled. You sat in your new tumbleform chair and kicked some bells, and you smiled. You cried a lot still, but we could see your smile too.

And now you are six! I'm not sure where the last five years have gone. You are getting so long; you wear clothes for children older than you, you are outgrowing your wheelchair and your bed. You can tell us yes and no, you can giggle and kick people. You are a seriously stylish young lady; it must be in your genes because I have no fashion sense myself! You are a part of my family, a part of your birth family, a part of the church family, and you have friends around the country and around the world.

You are surrounded by so many people who love you, Mog. I know there are things you could do when you were a baby which you can't do now, I know there are things we could do with you when you were small that we will find harder to do as you get bigger. And I know that we don't know what your future holds. I'm just grateful that my future includes you, for as long as possible.

Happy Birthday little girl!

Wednesday, 18 June 2008

A bitty day

Let me tell you a tale or two.

We'll start with the passport applications. It's easy enough; collect an application form from the post office, fill it in, get photos, find a counter signatory, take it back to the post office.
That's the theory. In practice, taking a photograph of a severely disabled photophobic child which meets the standards for a passport application is not the work of a few seconds. Click after click after click until finally something which met enough of the standards that an explanatory note might cover the rest was obtained.

And then, fill in the forms. Error number one was made by our first countersignatory, who crossed something out, resulting in the application form being rejected by the post office.

A new application form, a new error - this time by our new countersignatory, who signed with too large a flourish and went outside the lines. A teacher who can't keep inside the lines, dreadful.

A new application form (and each form is handed out singly, after queueing at the post office behind many old ladies wishing to collect pensions and impatient women wanting to post parcels to the Outer Hebrides, and small children wishing to buy a single stamp), an other new error. This time, my mistake, I have have written passport numbers instead of post codes.

This time, I get clever, I request two application forms at the same time. And today, with yet another new countersignatory, I managed to drop off a completed application form. This one was accepted by the post office so hopefully within a fortnight Mog should finally have a new passport.

A nicer task next; Mum dropped a vat of these in on her way to work this morning.
So I have been hulling them and chopping out the slug bites,and giving pots away to as many people as we can, safe in the knowledge that more vats will be arriving daily until the harvest is over. Some kind of strawberry chocolate gateau in order for Mog's birthday tomorrow I think.

Next, this:
A sneak preview of Little Fish's superduper new lightweight chair*. We don't actually have it yet; it's got to go back to have belt and cushions fitted. But it's looking good.

Speaking of birthdays; I'm sure I remember Bob telling me that he would be finished by Mog's birthday. I'm pretty sure I remember him saying that last year too. And yet our gate still looks like this: The wall still needs painting, the ramps still need building, the windowsill still needs replacing, and the woodwork needs finishing off.

He did come over this afternoon and finish off the fountain though - and I think it looks jolly marvellous!
*No, the stripes on her arms weren't planned to match the tigers on her chair. They just happened. I'm told (by her) that it was necessary.

Tuesday, 17 June 2008

What's in the bag?

Take one big and heavy bag. Add twenty Girl Guides.
Stir well and leave to simmer for 20 minutes
Add a certain amount of teamwork.
And hey presto!
This will be our temporary home for a few weeks over the summer holidays - Guide Camp, New Wine, Special Kids in the UK camp, and who knows whether we'll manage to squeeze anything else in too? It's a leeeeeetle smidgeon larger than our old tent; ridiculously massive for just three of us really! But it has shoe racks!
And more importantly, it has space for all the wheelchairs and other equipment. Not to mention it kept the Guides happy and busy all evening whilst the Brownies used our meeting room to cook their pizzas.

Camping here we come!

Monday, 16 June 2008

Who needs toys?

When you can have a bucket full of pebbles?

And finally, at least someone around here has a use for those red hot pokers.


Sunday, 15 June 2008

marathon day

Is it bedtime yet? Despite a latish night, Mog was up and ready to be entertained at 5AM. Television alone was not good enough; she needed someone to share it with. So we sat and watched foxes with mange and geese with fishing line wrapped around their legs. Lovely. Little Fish on the other hand decided on a lie-in; I had to wake her at 8.30 to get ready for church.

Interesting service for Father's Day -much music. Little Fish had a present for me after her Sunday School class - they had all wrapped something up for Daddy, and had tried to persuade her to wrap something for Grandad. But she wasn't having any of it and insisted it was for me instead. Ahh! Funny though - for Mothering Sunday every woman in the church is given a daffodil. For Father's Day the children have been making cards, wrapping gifts, the services was loud, and there's a special event this evening.

In a similar vein, we now have a "men@church" group which holds various events for the men - weekends away, screening of football matches, walks to a pub, etc. The women's group on the other hand have midweek church services. A recent classic in our newsletter was two consecutive events advertised. Men's group - whisky tasting evening. Women's group - evening of prayer and reflection. It's not that I think prayer and reflection are bad things; it's not even that I'd especially enjoy an evening spent drinking whisky (but a nice wine tasting, now that would do me just fine!), and I do appreciate that the men's activities are designed at least partly as outreach activities. But the contrast does strike me as mildly entertaining at times.

Anyway, home from church and time to cook lunch. Remember all that milk? Still a few pints left, so chicken in a nice white sauce, and a chocolate ground rice pudding.

That's better.
I hope the milkman has strong fingers. And doesn't wake Mog when he collects them in the wee small hours.

Little Fish's first ever birthday party this afternoon. A disco, 30 preschoolers, lots of sugar, and a whole pile of excitement. She nearly enjoyed it - was just beginning to realise that the children were her friends from preschool when the entertainer suddenly turned up in a giant teddy bear costume which sent her back to her attempts at invisibility. Ah well. She enjoyed saying goodbye to her particular friends in the carpark afterwards! And she definitely enjoyed the sandwiches.

Home James and time for a little bit of peace before bedtime. I've had yo yo children tonight. First Little Fish didn't want to go to bed until after Mog had finished her shower. Then once both girls in bed Mog decided she needed to be up again and yelled until I brought her through to sit on the settee with me. Cuddled her back into calmness and posted her into bed, at which point Little Fish woke up in a big panic. Too panicked to stay in bed - normally I can just turn her head for her (don't ask me why she can't do this herself at night but apparently she can't despite being able to during the day) and she will settle again. But big hysteria tonight, so up for a cuddle and to let the panics escape her bedroom. She fell asleep in my arms (big treat for both of us that; she's not one to fall asleep in a cuddle), so I poured her back into bed and hooked her back up again. She woke up as I did so "Me Mummy baby gen ite" (I'm mummy's baby again tonight).

It's not a bad end to the day.

Girls in concert

Here's a video clip from yesterday. I'm thinking we should set up some kind of band?

I love it when they entertain themselves without needing me! Not quite so sure what the neighbours think though.

Saturday, 14 June 2008


I completely forgot one of the nicest moments in the day! So nice in fact that it deserves its own post anyway.

We had lots of the usual chitchat at the fete itself, and the obligatory few words with the visiting dignitaries. When I'm with the girls, this inevitably boils down to "so are they both yours?" "So what's wrong with them?" (although fair play to the town councillor chappy; he at least phrased it as "so what have they got?" - still not sure why the whole world needs to know though and he did spoil it by then inquiring whether it was terminal), and other fairly personal questions.

Having answered some questions and sidestepped others, we were walking home afterwards when we met a man with quite possibly the world's largest black labrador. Must have been just about shoulder height. With Mog grinning and trying to kick the dog, and Little Fish attempting to make herself invisible behind me, he stopped for a few words. "Are they both yours?" - they weren't originally, but they are now, yes. Bracing myself for the follow up you can imagine my delight when his next comment was "Lucky you!" Now that's an attitude I'd like to meet more often!


A day in my life

It's the 14th again, so time to join Little Jenny Wren in blogging a day in my life.

It's Saturday, that wonderful day in the week when I don't have to set the alarm clock. 6.49 AM not withstanding; I do quite like to be able to sleep until I wake just occasionally. Mog had other ideas though, and decided 4.36 was the perfect time to demand my attention.A sleepy pad change, and then I carried her through to the playroom to watch early morning television. Very early morning; she had the choice of a couple of different test cards, politics or American sitcoms. Tempted as I was to leave her in front of the test cards for an hour and a half, the channel showing sitcoms was going to switch to children's programming the earliest, and in the meantime I thought she might enjoy the laugh track.

Mog settled, I headed back to bed. 5.28 and a doorbell caught my attention. A little early for the postman but since I'm hoping for a parcel some time soon, I thought I'd better check. Must have been from Mog's sitcoms though as the doorstep was empty. Back to bed again until 6.41 when Little Fish started calling. Telling myself that an early start would mean she'd be tired earlier this evening so the day would be shorter over all, I went in to rescue her.

Digging Little Fish out of bed can take some time these days. The new mask for her Nippy, whilst comfier for her, has more straps and clips than the old one so takes longer to take off in the morning. It doesn't help that LF quite likes the fact that it breathes for her, so as I unclip it and switch it off, she holds it ever more firmly to her face, grabbing the last gasp from it before it gets put away for the day. Once she's out of that, then it's time to extract her from her new sleep system; hip strap, knee straps, a careful amount of pressure to keep her knees from springing up and hitting her in the chest, and a gentle hug/carry to the bathroom to start the getting up process.

Little Fish clean and dressed, we join Mog in the playroom and watch some weekend cartoons whilst the girls eat breakfast. Next stop, Mog to the bathroom for some cleaning and dressing type activities. I leave her lying on the shower bench for a few minutes whilst I find myself some clothes. She is annoyed that I have removed her from the television, and Little Fish is annoyed because I have been paying attention to Mog. So I find myself whistling tunes from Cats to keep Mog happy, whilst dressing myself in a bizarrely hyperactive over-energetic revere-striptease type fashion to keep Little Fish giggling and stop her from tugging on Mog's gastrostomy.

Finally all three of us are dressed, hair brushed, nails clipped, 2 girls in wheelchairs, shoes located and feet inserted. Time to freeze down yesterday's milkfest bakes:

I spend some time turning the bathroom from this:

to this:

and then repeat the process in kitchen, sitting room and playroom, trying to keep Little Fish close to me so that she doesn't immediately undo every bit of tidying as we go along. I take yesterday's peelings out to the compost bin:

and stop to admire this lupin:

whilst at the same time wondering in what possible way it could be considered blue, which is what the label claimed.

Suddenly it is 11AM, and time to head out to preschool for their summer fete. Instead I sit down here and blog the first part of this; the fete lasts three hours, so we can be fashionably late.

It was a good fete. I didn't know the preschool had been running for 25 years; I must be older than I think I am because I remember the housing estate where it's run being built. And in my head it's still new!

Lots of stalls. Little Fish enjoyed printing her own Tshirt
and Mog particularly enjoyed getting a tattoo.
She is now the proud owner of a henna squiggle on her forearm and keen to show it off at school on Monday. We had a communal burger for lunch - Little Fish ate the bun and ketchup, Mog had the onions and melted cheese, and I had the slab of meat. I'm not convinced about the fairness of that! Little Fish decorated her own biscuit for pudding, and then we enjoyed a pot of strawberries. No prizes from the raffle. Shame; whilst I wasn't too fussed about the round of golf or the plane flight, the girls would have enjoyed a party at the local soft play den. Still, at least we didn't win the aftershave or one of the many hideous children's bags .

Home again, and we were distracted in our walk by muted megaphones and a giant crane which appeared to be standing over my house. Wondering what on earth our neighbours might have been getting up to, we discovered it was in fact the local pub having a bungee jumping session.
The view from out back garden - they didn't quite come knocking at our back door, but it wasn't far off!

A lazy few hours in the garden - Mog stretching out and kicking the snails, Little Fish sitting in the bathtub, and yours truly reading a book and dreaming of a nice G and T . It wasn't all relaxation; I also managed to hack mow the lawn
and pick all the grass out of the decking.

Next we had concert by Mog and Little Fish - LF provides the percussion by hammering on our metal table with her fists, and Mog provides the vocals by collapsing into fits of giggles. I get to sit at a safe distance wearing earphones and enjoy the fact they are entertaining each other without my assistance.

Tea time next. Salmon glop from yesterday's cookathon for the girls, followed by cakes from the fete. Fruit loaf for Little Fish (finally, someone living here who likes fruit cake), chocolate and banana cake for Mog, and a chocolate cornflake thingy for me. Munch munch yum yum.

One happy Little Fish suddenly mutated into a whinge-monster, so I threw her into bed at about half past six. Changed Mog and threw her into a pair of pyjamas. Now LF is fast asleep in bed, and Mog is sitting here with me giggling and just beginning to twitch a bit. So medicines for Mog will finish her day in about ten minutes, after which I shall enjoy some of the aubergine bake for my own supper, and read the latest Joanne Harris.

So how was your day?

Friday, 13 June 2008

Come the morning, the milk.

It's great having a milkman. Wake up in the morning, open the front door, and fresh milk is waiting on your doorstep unless it's been stolen in the wee small hours. Cold fresh milk for cereal, for coffee, for everything. No more powdered instant followed by a rapid dash to the cornershop.

Of course there's a downside too. We have to plan our milk consumption a week in advance, and if we happen to be out more than expected, it can mount up. Which is how I ended up with eight pints in the 'fridge this morning. Marvellous.

What do you do with eight pints of milk? LATTES! rice pudding. Which is fine, except that's how I used some of the excess on Wednesday. And there's a limit to how many milk puddings a girl can eat in one week.

So, one vat of cheese sauce became one Aubergine bake
One cheesy vegetable glop
And one salmon pasta bake.
Which left me with just this much milk in the 'fridge
and this lined up on the doorstep.
Anyone for dinner? These are the times I could do with a husband; I'm sure he could eat more custard and semolina than I can. And then after the meal, he could deal with this little lot
whilst I sat back with a glass of wine put the girls to bed.

Ah well. Milk overstock dramatically reduced, calories burned during washing up replaced (with interest) by more of the pasta and a rather nice Toblerone which insisted on accompanying me home from the shops yesterday . One girl in bed, one sitting here giggling at me, and the advantage of being single is that once she's in bed I get to kick back and relax with a good book instead of having to make conversation put the house back together.



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