Sunday 29 May 2011

How not to pass time in the waiting room.

The scene; a small cottage hospital waiting room. Tall padded plastic chairs smelling slightly of stale urine, three year old People's Friends magazines stacked up, a tantalising but empty water cooler, and notice boards filled with information about domestic violence (left hand wall) or sexually transmitted diseases (right hand wall). To the left, Podiatry, to the right, Opthalmology. Facing the entrance, reception (with a large notice board requesting patients to take a seat), and a disabled toilet (stacked full of unused Zimmer frames and walking sticks, with a soap dispenser up at shoulder height when standing, and a loo roll holder three steps away from the loo).

Enter one mother and child, who opt to sit under the "have YOU been checked for Chlamydia?" and stare at the poster of a beaten child, this being marginally better than the alternative.

Opposite, one beautiful little girl introducing herself and her mother (and the window, and the flowers, and the magazines and the empty water cooler) in fluent Makaton. And under the window, a mother with another child.

The signer and her mother are called in, leaving the other mother and myself alone with two children. My beautiful, perfect, lovely child is sitting quietly in her wheelchair, having reversed it expertly into a gap in the row of seats so she is beside me. The other child is doing headstands on the chairs, kicking the walls with grubby shoes, sliding piles of magazines onto the floor, and staring.

Eventually he stares enough that his mother makes introductions, followed by the comment "Loads of disabled children here today, not usually like that." We escape to the loo, and return to find their place taken by another mother and son. Same school uniform, same ability to kick the walls whilst simultaneously performing a headstand on the chair and sending piles of magazines to a slippery death on the floor.

And my beautiful, perfect, lovely child executes a three point turn in the doorway, and glides to a stop beside me before unbuckling for a cuddle.

I lean over, pick her up, and it begins.

"What's wrong with her then?"
Biting down the urge to reply "Nothing, what's wrong with your son?" I instead go for "Her legs don't work." and turn away, to blow kisses down the back of my Little Princess' neck.
This response is however clearly insufficient, and my "Please go away now" vibes are clearly not working. Instead:
"Yes I can see that, but what's wrong with her? What's wrong with her legs? What's wrong with her?"
Sigh. "She has Spina Bifida now please stop asking questions. Her legs don't work but she understands everything and doesn't really want to talk about it so please go away and if you can't go away please find something else to talk about or read one of those magazines your son is destroying."

"Did you know?"
"Did you know, when you was pregnant, did you know she was going to have it?"
"She's adopted. So yes, I knew, and I'm very pleased to have her, and it worked out well for both of us didn't it?"

"Couldn't you have your own then?"
I avoid answering this one, and turn away again, hoping we have ended the conversation. But no:
"So, does she know?"
"Does she know what?"
"That she's adopted, does she know?"
She's sitting in my lap. She's six years old. I've just told you there's nothing wrong with her understanding. If she didn't before, she certainly does now!
"Yes, she knows."
"Oh, cos I think that's best isn't it? My mate, she's adopted twenty, and she always told them all." And my heart melts towards the woman who adopted twenty, and who apparently lives very locally, and I wonder who she is. And I try to see whatever it is this woman who has adopted twenty (because after all, if she has adopted twenty children she must be a pretty good judge of character by now) sees in this woman her friend. And whilst I'd like to say that I then see the whole conversation and this annoyingly tactless woman in a different light, I don't. I get side tracked by the possibility of adopting another dozen or so, and wondering how big this woman's house is, and thinking about zingy one liners I might have used to shut the conversation down, and what sort of thing the LP might say herself in these situations when she gets older.

But I do wonder, because although that short conversation actually contained most of my pet peeves in the space of around five minutes, the majority of strangers who feel the need to strike up conversation manage one or two of them. And they can't all mean to be that insulting, tactless, thoughtless and nosy, can they?

And then, thankfully, it was our turn to go in.

Friday 27 May 2011


Today I am fretting about respite arrangements for Mog whilst the Little Princess goes into hospital.

Today I discovered we have to be in hospital rather earlier than we'd hoped, so I went into school to inform them (and tLP) that she won't be back at all next term, and that they'd better say goodbye this afternoon.

Today tLP found me in school, and showed me both her Golden Award for really good Sounding Out her letters, and her Peers Award for Playing Nicely in the Playground.

Today I am frustrated with the feed pump company, who do not consider failing to deliver any feed at all to be a fault. And therefore I am also annoyed that Mog had no feed at all until she got back from school.

Today I am thinking of my friends, who are going home without their son.

Today I am tired.


Thursday 19 May 2011

Save Rania

Last summer, I had the privilege of pitching my tent next to a truly lovely family. Mo and Jo, with daughters Rania and Karima. Mog had a seizure (or 30), and Rania bunny-hopped over to tell her it would be OK soon. And as the girls mingled. Jo and I caught up in person with chat we've been having online for a while.

They'd been at New Wine North, we'd been down in Bath; we'd both had pretty amazing weeks. And Jo had a new bracelent, with "Expect Miracles" engraved on it.

Now they need that miracle. Rania, although their daughter in love, is in the eyes of the law merely their niece. And niecehood is not a close enough relationship to allow Rania to stay in the UK.

Rania has extremely complex epilepsy. She needs resuscitating frequently, and relies on a complex regime of medication and close medical supervision to stay alive. And yet, despite all the odds, Rania is making phenomenal progress in her mainstream primary school.

Rania's story can be found in the Bolton News. Rania will not survive being deported, separated from the only family she knows, and a world away from the medical care which is keeping her alive. Rania was not born here, but this is her country, Jo and Mo are her parents, and Karima her little sister. She does not deserve to be deported, she has done nothing to deserve a death sentence.

Please consider signing this petition asking Theresa May, home secretary, to reconsider her decision.

Here is a link to an interview with Jo on Granada TV.


Wednesday 18 May 2011

BookSneeze Review - The Promise of an Angel

It probably doesn't come as much of a surprise to those of you who know me that I like reading. I read when I can't sleep, I read when I'm waiting for appointments, I read when when I'm eating, and I read when I'm sitting quietly waiting for small children to fall asleep. So when I read about BookSneeze, I thought I'd give them a go. BookSneeze send free copies of books to bloggers, in exchange for bloggers reviewing them. Sounds good to me. I like free books!

I signed up with BookSneeze, and chose to request an e-book first because I was impatient and didn't want to wait for a hard copy to be posted from the US. The book downloaded, and I would have been reading it within seconds if I hadn't also had to work out how to download software to read the thing - this however I'd say was definitely user idiocy error, not BookSneeze's fault. I'm now the proud owner of a free Kindle for Mac programme and a Kindle for iPhone app. And one day I'll work out how to get them to talk to each other.

So, for my first book I decided to try "The Promise of an Angel" by Ruth Reid. I read to escape, and an Amish existence is probably about as far away from this life I can get to whilst still enjoying huge amounts of (admittedly imaginary) good food. And I found myself crouched over my computer, long after I should have gone to bed, clicking forwards and forwards until I had devoured the story in a couple of sittings.

What's so compelling? Judith Fischer's little brother has an accident whilst under her supervision. He loses the use of his legs, and the family and community accept this as God's will. Judith meanwhile believes that she has met with an angel, who promises her brother will walk again.

Is she deluded? Is she giving him false hope? Should she bow to the pressure of church and community and stay silent, or should she continue to speak what she believes to be the truth, even to the point of losing her chances of marriage and being sent away from everyone she knows and loves?

This is more than a nice story about life in a fictional Amish community. This is a story about what happens to faith under fire. About how integrity and submission can look like defiance and even insanity.

Does Judith's brother walk again? Will she marry the man who has been marked out as hers for years? Will her sister leave the community?

I'd answer, but I think it's worth reading for yourself. Escapism, light reading, but with thought, and with a handy study guide at the end for anyone who wants to look deeper. It's probably going to appeal more to women than men. And I'm looking forwards to the next in the series.

I review for BookSneeze®

Friday 13 May 2011

Behind the Child

When I started this blog, I had three children, two living at home and one having just recently moved into a Supported Living arrangement. My first ever post pretty much sums what I thought this blog would be about. Me, the person behind the child. Everyone sees the child (or children); I become the pair of hands behind the child in the chair.

Grandiose visions of glimpses into the inner workings of my mind, as illustrated by entertaining epistles detailing the bits of my life you might not notice, hopefully reaching people in similar positions and possibly educating people who had no idea. You know, your average changing the world type ambition.

Well, I haven't changed the world, although people are kind enough to tell me how I've helped them change their minds, and that's great.

This is sounding like the beginnings of a farewell. It isn't! This is a space where I find I can write out what's on my mind. Post sometimes, delete sometimes, but order my thoughts into print and find that there is, actually, something vaguely coherent buried in the middle somewhere. I'm quite tongue-tied if I'm actually trying to talk - typing (and deleting, and retyping, and cutting and pasting and creating hyperlinks) comes much more naturally.

When I began though; this was going to be purely about me. The girls would be mentioned in passing, to illustrate my points, but this was going to be my space, my place to be prominent rather than simply standing behind them. I like hiding behind the child; the wheelchair is still (just) wider than my hips; I can pretend I'm slender and sylphlike. And the girls are worth watching.

But, inevitably, the girls creep in. How can I talk about myself without talking about the girls? They are my life. We are a family, bound together in love. You don't get any of us unless you get all of us.

And so, you've learnt possibly more than I initially intended about the lives of the girls as well as my life. You've been to hospital with us, you probably now know the pole position in the outpatient's waiting room, you may know the girls' surgeons almost as well as I do; and I've had the joy of meeting people as Tia as well as as Tania, and through blogging and other online activity I suspect I now have more Tia-friends than Tania-friends. Handily though; you do increasingly know the same person, whether I'm a Tia or a Tania to you.

Cute stories about sweet little children are great. Less cute stories about living with tantrumming ex-toddlers are at least real. Medical and Disability related stuff - well, that's a fairly important part of our lives, so you know quite a bit about that too.

And that's where it gets trickier, because around the medical type stuff are issues the girls prefer me not to share. And walking a line between my daughter's need for privacy, and my own need to shout things out to the world is difficult. We have, I think, come to a solution. There are some specific areas of the girls' life I shan't be giving full details about. There are other things happening too, where we may not yet have told the girls the full story. And, if they don't know, how can I tell the world?

Bear with me. I have a point and I'll make it, as soon as I remember what it was.

Our Little Princess has, amongst an increasingly lengthy list of conditions, an Arnold Chiari Malformation type 2/3 (depending on which set of medical notes you read). It's always caused her a reasonable amount of trouble, but lately things have been getting a little worse. She doesn't mind me mentioning the daily vomiting - now better under control, thanks to the lovely people at Helen House and a pile of new medication. She doesn't mind me talking about her tiredness, her increasingly wonky back, her stiff legs, her probable double vision, and her pain. She does object to me talking about some of the other problems it's causing, so I shan't - but will just say, getting up and going to bed is taking an ever increasing amount of time at the moment.

So we've been having tests, and she's been getting a little rougher round the edges, and finally the neurosurgeon has had a look and made a decision, and left us to make another decision, and the upshot of the whole lot is that finally the risks of not operating outweigh the risks of operating, and my baby needs brain surgery.

In language that Little Princess understands, the bit of her brain which has always been a bit squashed has now run out of space, and she needs an operation to give it some more room to grow.

As brain surgeries go, it's milder than some. No one is planning to remove large sections of her brain, no one will be digging through her brain tissue to find tumours. But it's still brain surgery. And it's still a fairly Big Thing, for us at least. Nothing has changed to make the operation any safer for her than it would have been when they decided not to do it earlier.

So that's where we are today. LP's biggest worry is that they will have to put a "tubie" in the back of her hand. My worries are somewhat larger than that. And my God is bigger than all of our worries put together. But still - my baby needs brain surgery.


Tuesday 10 May 2011

Special Delivery

Take one month's plastics (daily disposable bottle and tube) for two girls' tube feed. Not including the feed itself, extension tubes, syringes, spare buttons, feed pumps and chargers).

Add one month's medical supplies (sterile water for humidifier, dressings, tape) for one childAnd a selected portion of both girls' monthly drugs
(other half of the cupboard far too messy for display. And no, I don't feed the girls fish food!).

Throw a month's supply of breathing circuits into the mixAnd a month's worth of catheter supplies
Add suction catheters - this is a box of one hundredwhich could last us months, or could be used in a couple of very bad days. So multiply that box by three, to give us a very bad week's worth kept in stock.

Next bring more miscellaneous medical suppliesMouth swabs, spare tubing for the nebuliser, syringes and fingertip probes.

multiply white box by ten under one bed and six under the other, to include wipes - wet and dry - disposable gloves and aprons, creams and lotions and sprays, instruction manuals, chargers and batteries, oxygen and spare tubing, more dressings.
And then go and fetch a month's worth of incontinence pads.
Navigate your way around one indoor wheelchair, two posturally supportive armchairs, one back up manual wheelchair, one off-road three-wheeler, one wheelchair charger, one ventilator, one CPAP machine, one humidifier, random assorted splints and braces, spare bonnets and chin straps, feed - thankfully supplied in powdered form - and endless buckets of fruit juice.

Tiptoe past the sheer volume of laundry produced when an overnight drainage bag disconnects from a catheter two nights in a row, flooding bed, floor, and everything stored under the bed with a litre of urine. Slide sideways past the tent, previously stored under the bed, and wonder whether this really does mean you now need to replace it.

Step back. Into the cat food bowl. Shuffle sideways into the neat pile of regurgitated cat food and fur ball. Mutter lots.

And wonder how you managed to forget to buy chocolate where you are possibly going to squeeze storage space for three months' worth of pads, when the deliveries change.


Monday 9 May 2011

Mama said there'll be days like this

A Little Princess out in the big wide world, with brave smile on her face. Do you think she might be finding life a little overwhelming at the moment? Or am I overthinking things?

Tuesday 3 May 2011


Its a very special place to live, Abingdon. As the oldest continuously settled town in the country, a few rather special traditions might be not only justified, but expected. And one such tradition would be our Bun-Throwing.

Take any wildly exciting Royal Occasion. As readers may be aware, one such event happened recently, with the marriage of a certain two young people, one of whom may one day become our king. An event so important that my brother`s family felt it necessary to make the long trek back from Tanzania, purely in order to be in the country to mark the occasion. They may deny this, but we know the truth.

Take a moment to review the prettier pictures of the old County Hall (linked above under the bun throwing); sadly the bunting and general flaggery cannot disguise today`s scaffolding. And picture, not councillors in hard-hats peering through a gap in the scaffolding, but instead gloriously attired Town Mayor and Town Crier and various dignitaries all standing on the roof.

And then take one MayorAnd assorted others
A starving populace
And wind up those arms to throw.Amidst shouts of Long Live The Queen Throw Harder, Duncan!, watch those buns fly.
With arms raised high, the poor starving populace prepare to scrabble for any buns which reach them.
Those without fully functional arms choosing to use whatever catching tools they have at their disposal
We wait, watching, as those buns (surprisingly hard to photograph) spin over the crowd, falling mainly to the front of us. A particularly athletic councillor proves to have a very decent bowling arm, and, clinging to the scaffolding for support, he sends buns hurtling towards the back. And finally, success!
An Abingdon Bun! We scored two between the eight of us; not wonderful but enough for everyone to have a taste. Friends to the front caught thirteen and were off to celebrate with chips. Friends to the rear caught none, and were off to commiserate with chips.

A new refinement this year; initials on the buns - a very tasteful W and C for the new Duke and Duchess of Cambridge. And then the crowds dispersed, and we trundled our way home, heads full of flags and missed buns, and wondering if my mother really was the only person to be singing all the words to the second verse of the National Anthem before the bunfight began?

God save our gracious Queen!
Long live our noble Queen!
God save the Queen!
Send her victorious,
Happy and glorious,
Long to reign over us,
God save the Queen.

Thy choicest gifts in store
On her be pleased to pour,
Long may she reign.
May she defend our laws,
And give us ever cause,
To sing with heart and voice,
God save the Queen.



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