Behind The Child

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Updated: 1 min 28 sec ago

Because prevention is so much better than living with the aftermath.

Fri, 08/29/2014 - 09:48
These are gloves. You probably knew that. They can help to prevent infection. They can stop your hands coming into contact with all sorts of unpleasant things. 
But they also insulate. 
Which is why, if you are wearing them, you need one of these. Because otherwise you might just underestimate the temperature of the bath you are running, and you might just find that instead of giving someone a pleasantly relaxing experience, you end up giving them fatal burns. I'll spare you the graphic details. 
Actually, whether or not you wear gloves, you need a thermometer. If you're a carer, if you work in a care home or in clients' houses, the law is clear and the water should be tested with a thermometer. 
I don't care if there's a preset thermostat, they can fail and they can be falsely adjusted. I don't care if you've tested water by hand for years, it only takes once. 

New Wine in Words.

Tue, 08/12/2014 - 05:57
It wasn't an auspicious start. Amana's powerchair broke just at the end of term, I found an ideal replacement on eBay and the sellers then withdrew it from sale. 
Her bike chair died a death but was revived by a friend. And then Imi's trike died a similar death. A new battery fixed one problem, and another appeared. A friend fixed it, returned it, and now another problem has appeared - I'm shelving that until after the holidays. 
Thankfully, Amana's powerchair was fixed two days before we went. 
The wheelchair restraints on the bus died on the Thursday before we left; thankfully fixed on Friday. 
New camp beds were delivered days later than expected, but just in the squeak of time. 
Medications ran out, new ones were not delivered, but acceptable alternatives were found. 
"If Satan's making it this difficult for you to get there, God must have something really amazing planned." was the comment from a friend. 
And so, we spent Saturday emptying most of the house and garage into the back of the bus. Imogen elected to spend the day mostly horizontal, so we clamped her wheelchair in and packed around it. Amana found her manual chair, and we clamped her powerchair in and continued packing, sorting, stuffing and generally filling the van to capacity, whilst also trying to keep enough space and order in the house to welcome our overnight guests. 
Sunday morning, bright and early, we loaded the girls into the bus, our friends piled into theirs, and we were ready for our traditional McDonald's drive-thru on our way down to Shepton Mallet. 
Keys into ignition, engine fired up, and nothing. A big fat error message, a gear stick which wouldn't come out of park, and a big red arrow pointing back at the house. Do not pass go. Do not collect £200. 
RAC phoned and on their way. Friend fetched breakfast, then went on ahead with our tent. And the chocolate brownies. And so we waited. 
And the RAC man came, and he ran our van through his computer programme, and declared it to be unfixable. And I unloaded the contents of the van onto the front garden, and the neighbours asked if we were having a Bring and Buy sale, and the girls got wriggly, and we had lunch, and Motability arranged for a taxi, and for the van to be recovered to our garage. 
The taxi driver looked at our pile of stuff and asked if we were moving house. It was an interesting game of 3d Tetris, but by way of lifting Imogen, chair and all, over Amana's rear wheel, we finally shuffled everything into the taxi and left home, only 5 hours later than planned. 
Our home for the week was beautifully and expertly pitched by the time we arrived; I cannot tell you how good it was to be able to turn up and simply shuffle all our belongings into place, whilst glugging hot tea already brewed and waiting. 
Glorious rainbows, Anne's fabulous sherry soaked liver, and salty brownies set standards for the week. And so we settled in. 
And I'm sure you're wondering what amazing things God had planned. Read on. 
Monday I phoned the garage, who were wondering why a large blue van had been dumped at their gate, but who had no paperwork or info about it. And Motability, with a request for them to talk to the garage. 
Tuesday, I phoned the garage 100 times, without response, until finally late afternoon they explained there had been a mammoth powercut. And I phoned Motability, who said to try again tomorrow. 
Wednesday, I phoned the garage, who still had not managed to look at the van except to say "error messages all over the place," and phoned Motability who told me I should arrange a taxi home, which they would reimburse. 
Ever tried to arrange a taxi, with space for two large wheelchairs and a huge amount of camping gear, from a field with no internet signal? Thankfully, friends took on the challenge, multiple phone numbers were sent my way, but best of all, one friend found Mendip Community Transport, who just happened to be based at the very Showground we were camping in, for the very last week of their twelve year tenancy. And so it was mostly arranged, just the need to find a driver willing to work a long Saturday night. 
Meanwhile, the real business of New Wine rumbled on. Powerful worship, inspirational speakers, people stepping out in faith and meeting God, some for the first time and others with a sense of being welcomed home by the oldest and best if friends. 
Wednesday morning I stood in the midweek celebration, one arm around Amana, one hand linked with Imi, head held high, and God nudged me, whispering "This right here, this is My Will for you." And whilst it's always nice to hear from God, this isn't exactly a stunning revelation. It was at New Wine last year that I learnt Imogen would not be going back to school. And the year before when I discovered I needed to stop fostering. It's been all about the family for quite the long while now. But still, living in God's Will is always a good place to be. I'll take it. 
We squeezed Amana into a baby buggy, and thus squeezed all of us into my friend's slightly smaller than ours blue bus. And drove, not to Longleat nor to any new and exciting destination, but around the corner to a garden centre which promised hot food and wifi. A day off from cooking, and internet access to chase the bus and look into taxis. Great. 
The wifi was a lie. But see above re: taxi resolution, huge thanks to lovely friends. The food was hot. And the cakes were great. 
On Thursday morning, everyone went back to their own groups, and Imogen slept through our morning worship once again. And I felt I should be letting go of her hand, leaving her to sleep, and stepping forwards to a space where I couldn't watch the gentle rise and fall of her chest, and couldn't even see the gentle flicker of reassuring numbers from her sats monitor. And so I stood, alone in a huge crowd, allowing Imi to become just one amongst many, not my shadow, and came to God just me. And God said, "This, right here, this is My Will for you." And I said he'd said that yesterday, when I was totally wrapped up in the girls, and how did that make any kind of sense? And God replied "I want all of you."  
You have me. All of me. Wherever I am, whatever might be happening, I am yours. 

And then the phone rang, and the van was fixed, and the very big major problem which was quite possibly permanent and unfixable, turned out to be a very very simple matter of a missing fuse (something they should have known about on Wednesday, Tuesday and Monday). And I would be able to collect it on the Monday after New Wine, the day I already had respite booked for both girls, so could actually get to the garage. And the taxi company had a huge vehicle, and a driver, and we would be able to get our tent down dry on the Saturday, and get home in decent time. 
Side track here. As a student, I joined our college CU. And I met these young people who had this really weird faith thing where they would babble away in strange languages, lose themselves in strings of nonsense syllables. And it was both repellent and fascinating. Repellent because I'd been taught Acts was all about the early disciples and nothing to do with us, and deeply fascinating because this was clearly something very alive and very God-led. And, just as I'd been taught this was something of the past, so sone of my fellow students had been taught no one could be a real Christian unless they too spoke in tongues. 
How do two churches read such different things into Paul's words and Luke's writings? Answer that and I suspect you've answered so many "holy" wars and divides. But still. Here we were, 18 year olds, all believing in and loving God, all coming together and hunting for an adult faith, seeking the truths hidden within the various church doctrines. And I prayed, and prayed, that I might be more like them, that I too might be able to praise God even when I couldn't think of the words myself. And eventually I did find that I could open my mouth and let my lips proclaim His praise, even when I didn't know what I was saying. Except that there was always a little bit of a doubt - was this a God thing, or was this a me wanting to fit in thing? 
Fast forward 20something years. A word from God, a surrender, a wonderfully fixed bus. I'm praising. In English and in babble. And then the speaker invites us to turn to Acts, which I do, and in my rabbit trail bible there's a note referring me to Daniel. And I realise that one of the strings of syllables I have been praising God with for the last 20 years is here, right here, Hanania, "God is Gracious." 
And Thursday and Friday and Saturday carried on in their gentle friendly way. Amana made a friend. Imi stayed well; had the best week she has had for months in fact. We had sunsets and rainbows, meadow flowers and spicy nachos. A gently beautiful week. 
And those amazing huge plans? Well, maybe set against some of the miracles and signs and wonders and huge life changing events happening around us, maybe our quietly beautiful week wasn't all that much. But I am refreshed, my bus is fixed, and I am in God's Will. And that's more than enough for me. 

ROSY picnic

Tue, 08/12/2014 - 05:09

New Wine in photos

Tue, 08/12/2014 - 05:08
PreparationAll loaded up and no way to go (van broke down on our driveway). Finally here at last. God's promise in action. 
A foretaste of heaven - worship with friends. Change of menu for the day out! Our camp dishwashers. 
Doing a great job. Not everyone had to work. 
Beautiful sunsets. The glasses thief. Snuggles!Team Blue 2014Stunning sunsets and surprise wildflowers hidden behind the tents. 

Sleepy morning worship with sneaky cuddles. 
Not a bad week! Tia

Quality of life

Tue, 07/22/2014 - 09:51

Imogen can't speak. She can't form words with her mouth, she can't use eye gaze, she can't use sophisticated scanning devices, and she can't sign. But she's got a very good yes/no response, and she's got a pretty good talking book (file with lists of yes/no questions to speed up the 20 questions method of communication. And she is pretty good at letting us know what she needs.

There are obviously limitations. She is reliant on someone asking the questions. It's easy to avoid asking difficult questions, questions where I'm not sure I want to know the answer. It's easy to miss her initial shout/kick/huff which means "I'm talking, come over here." And on days when she's struggling to breathe, anything other than a very fleeting tongue thrust is impossible for her. But it works for us, it doesn't exhaust her, and she surprises us regularly with what she wants to say.

Despite these limitations, Imi very very rarely shows any signs of frustration. We might get the occasional eye-roll when I'm getting the questions completely wrong, or where I'm clearly stating the obvious yet again, but she has a fine line in non-verbal sarcasm, and that'll do for both of us. So when Imi started crying one evening, and wasn't in pain, wasn't tired, and was very clear there was nothing physically wrong, it was a big big deal.

And yes, she was fed up. Fed up of feeling poorly. Fed up of being tired so often. Fed up of the breathing problems, of not being able to cope with school any more, of spending so much time hooked up to machines. Fed up of watching the same videos, listening to the same stories, watching the world go by and slipping out of the mainstream.

So we had a chat about what make life better.

And Imi decided she'd like to make something. She'd like to create something. Not a picture with a piece of paper, not having someone hold her hand and help her glue things together, but talk to something and build something beautiful.

We found an artist who works in stained glass, Sarah Glover.  And we went over to meet her. Imogen chose some glass first, deciding on particular colours, particular effects (mostly water glass apparently, with a few different opaque bits and pieces here and there). Together, Sarah and Imi brainstormed a design, Imi picking shapes and a general theme, rejecting formal designs or copied pictures, and slowly an idea built up.

We then went away, whilst Sarah did the hard work of cutting and piecing the glass together. We came back, and Imi helped to fix copper foil around the edges of a few pieces, helped to paint flux over the whole design, polished the solder and then watched (o2 removed to a safe distance!) as the piece was soldered together. We washed the glass ourselves, then handed it back to Sarah for finishing.

And then we came back again, to find this.
Not the best photo, but a clock-shaped piece of stained glass, with the sun at the centre and a carefully selected and shaped set of glass shards surrounding it. Imi's colours, Imi's age, Imi's design, Imi's choice. And a thing of beauty sending light into our house.

Imogen is pleased with it, and proud of it, and ready for her next project. It's taken a bit of tweaking, and we're not ready to start it yet, but she'd like to do something with an old clock. She wants to buy one at auction, something I've never done, so that'll be an adventure for both of us (and not at all an indication that she watches too much daytime television sometimes!), and then make it beautiful. If we can find a local clock maker (and if anyone local knows someone with clock-mending skills, do please send them our way), she would like to find a non-working clock and fix it. If not, then we will find a working but shabby clock, and polish it up and add her own ideas to how it should look.

She's very clear that she wants to start with an old clock from an auction (which is a shame, because I could find a clock kit far more easily, but hey ho), she wants a clock with a big tick, and one which she can have in her room (so it's going to have to be fairly small).

Imogen also wants to look at other people working. She is surrounded by nurses, carers, doctors, cleaners, cooks, teaching assistants, therapists and even occasionally meets a teacher. So she would like to see other people at work. I'm not sure how we will sort that, but if you have an interesting kind of a job, work relatively locally to us, and could make space in your work for her and her entourage, she would really like to see what other people do with their lives.

Imogen doesn't have a lot of energy. We are finding that one thing in a day is enough, sometimes more than enough. Too much excitement, and she can and will sleep for the next couple of days. A trip to The Barns, a walk to the park, a hospital visit, a music therapy session, and that's pretty much a full week these days. So we are also looking for things she can do from her bed or a cool spot under a tree in our garden. We are hoping that we will have a dog at some point in the future. But in the meantime, if you have a portable one (who wouldn't eat our cats), then she'd love it if you could bring it for a sneaky cuddle. She's also interested in snakes, lizards, and rabbits, although probably not all at the same time!

We can't change Imogen's future. She is tired, she is fragile, she gets uncomfortable a lot, and at the moment she seems to be asleep more than she is awake during the day (and the opposite at night, sigh). But we can make her daily life more fun, more interesting, within the constraints placed on it by her health. So if you have any ideas for mini adventures, please do let me know, and I'll see if she's interested.

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Wed, 07/09/2014 - 10:00
"Mummy, I need to be a winter ice dancer." Costume: white, pale blue or silver, with snowflakes. In June. Nice.

Still, I don't think we did too badly, did we?

And a cancelled operation meant that Amana was able to be at all three nights of her school play; nearly compensation enough for the fact that we won't now be able to stabilise her spine until after the summer holidays.

Lands End to John O'Groats, via Facebook.

Mon, 06/30/2014 - 10:21
 605 miles (if you go in a straight line), a virtual race, with postcards every 50 real miles. Mostly exercise biked, often whilst watching television in the evening, but also walking this beautiful countryside with a friend and her mad chaos beasts.
 Old English churches Radley Lakes Mad chaos beasts of mud and destruction and maypole dancing. Nearly there! A farewell to Didcot Power Station, due for demolition this weekend. A final walk in the woods
 And the view from my 605th mile (and yes, those are neck high nettles)!

 My medal (hanging from the trusty steed).  605 miles, through virtual countryside via postcards, and through all too real and muddy countryside, but never through the rain. It's been fun, and motivating, and now I need the next challenge to keep me from sitting still.


Thu, 06/19/2014 - 08:59
Twelve years since you made your entrance into this world. Twelve years since you first threw the unexpected at those who loved you the most. Twelve years since the first doctor first declared you'd have to make your own mind up about when to wake up. Twelve years since those first moments of joy and despair mixed, of wondering who and how you would become the person you are. 
I didn't know you then. But I've been here for every birthday ever since. And I know that joy and desolation, hope and fear, love and sorrow and blessing that you carry. 
There were times earlier this year when I didn't think we'd make it this far. You, so tired, throwing ever more complications our way. And yet, here you are, wide awake and singing at 5am. Genuinely, delightedly, excited for the day ahead. Laughing in anticipation, awake still when your sister was up, ready to open presents four or more hours earlier than your usual start to the day. 
Later, helping to blow out candles, choosing cuddles, taking your nurses for a walk to the cafe and drinking coffee with them. 
Family parties later still, and precious friends here the week before. A quieter birthday than last year's. But a beautifully gently perfect one nevertheless. 
Happy, happy Birthday my precious one. 

Dragonfly day.

Thu, 06/12/2014 - 17:03
Everywhere we stepped, blue damsel flies underfoot. A cuckoo in the treesBig green and brown dragonflies, iridescent black and blue ones, Swans and cygnets, geese and goslings, boats gently chugging, and the gentle hum of insects whenever we walked away from the water. 
Blue skies, a buzzing haze, water lilies and shoals of nervous fish. 
Happy dogs, wet dogs, tired out ancient dogs, and wildly over enthusiastic bouncy teenage dogs in search of the perfect stick. 
Lunch with this view, and a lazy amble home again. A beautiful gentle life-filled ramble. 
At one point, surrounded by neck high nettles, I took picture two. 
I lift my eyes up, where does my help come from. 


Sun, 06/08/2014 - 18:32
I can: Break open glass ampoules without shredding my thumb (now someone has shown me which way to hold them). 
Squirt medication into cheeks and tubes (and unmentionables). 
Assess which medication might be best to give first, tweak a cocktail of meds to make a child more comfortable, draw up morphine whilst holding a discussion with another child about Peppa Pig and recorders. 
I can reposition aching limbs, bind up pressure sores, hook up non invasive ventilators, Hoover secretions out of airways, and cobble together broken wheelchairs. 
I can tube feed whilst nagging a child to drink. I can lose my temper and apologise for it. I can watch scoliosis ravage a spine, whilst planning a second op to fix another child's spine. 
I can bake strawberry cakes whilst giving nebs, cuddle children who either don't bend or bend in the wrong way, and play 20 questions to work out what a child would like for her upcoming birthday. 
But it turns out, I can't listen to a child singing along to the Downing Family's "When I Wake Up To Sleep No More." Not when that child then starts crying, and 20 questions reveals she is sad because she feels so poorly.,,7672954-21087395,00.html
"Glory to God I'll have a new body/changed in the twinkling of an eye/When I wake up to sleep no more. With the redeemed of all the ages/praising the one whom I adore/When I wake up to sleep no more."
Not without crying too, anyway. 


Wed, 06/04/2014 - 17:44
Fourteen years ago this week, I was making cheese and potato pie to a recipe from the cook at a local children's home. 
I was shuffling mountains of easy care clothing (all from one shop, mostly one style in various assorted colours) into suddenly too small drawers. 
Working out how best to fit everything into the lift at once without tripping the sensors. And learning where exactly to leave the hoist so the cabling didn't strangle me. 
Saying goodbye to a breathtakingly beautiful boy who had shared my life for the past six months, and opening my home to a tangle octopus of a girl, with long dancing fingers and a habit of partying most nights. 
Out with the dungarees, and in with the hair bands. Out with the puddle jumping, and in with a wheelchair. Out with Teletubbies, and bring on the Three Little Pigs. And Elmo. And a large extended family. 
Imi is now the same age as Goldie was when she moved in. And this week, Imi is the same weight as Goldie was once she'd had a few months of eating my own version of cheese and 'atato pie. And choc-oh-late cayke. And chips. And oranges and raisins and the corners of more Ladybird books than you might think existed. 
My great big Goldie was in fact substantially smaller than Imogen when she was the same age. 
Goldie lived with us and shared our lives for just half of these past 14 years. Today, Amana has been with me for the same length of time that Goldie lived under our roof. And Goldie has very nearly been gone for more time than she was with us. 
Seven years go this week, Goldie moved into her own home. A bright new future, with 1:1 staffing so she could lead her own life, be independent, go out and do things she was interested in doing, be entertained, and busy. 
We visited daily in those early days. Taught staff how to make cheese and potato pie and porridge and crumble and custard and a cup of tea at just the perfect temperature. Trained staff in the importance of always having batteries for Elmo and how to avoid the books being eaten and why it was important to keep reading the stories. 
Today I cleared out one of the darker corners of Amana's bedroom. And two forgotten Elmos lay staring up at me, wide mouths silently shaping the ABC song, always and only the ABC song. One plus and shiny, sourced from eBay at huge cost, ready to replace a failing one once it had been chewed to death. And one ancient and beloved, singing stomach removed (that'll be the insert on the top shelf in the sitting room then, waiting patiently still for the new batteries which were never needed. 
Elmos, always. Fourteen years since I first spent a night hearing Elmo sing his ABCs whilst a small girl rocked her bed until I moved it away from the walls and willed her to sleep. 
And seven years since she last needed his comforting sameness.