Behind The Child

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Updated: 19 min 56 sec ago

Pictures. And words.

Sun, 11/02/2014 - 18:10
Special kids camp 2015. Catching up with friends Home in time for an assessment by Dogs for the Disabled. Verdict due three weeks later, it's now 2.5 months; I should probably chase that. Grannie's birthday. And a visit from the Yorkshire cousins. Superhero day at Godzone holiday club. Walks with the mad mud and chaos beasts. Catching up with friends againMaking the most of it!Getting together for a very special Baptism. And spending time with the Baptismal girl. Hard at work polishing domestic skills (and burning a finger, causing me a phone call from school to explain the injury). Our own home based bake off. And a very poorly Imi, who had a really good summer, but hit the end of September with a very nasty chest infection and massively prolonged seizure, earning her an ambulance ride to Helen House, to check out the facilities. Eyes open here for the first time in 48 hours, sleeping off the heavy duty meds she needed. Harvest time - redcurrant jelly. And back to Helen House for a respite stay. Old treehouse and new computer room. More harvest, blackberries gathered on a walk we did without the mad mud beasts. Finally, after being urgently referred in April, and after being in pain for a very long time, Amana had surgery to replace the loose screw in the rod at the top of her spine. A small part of our apple harvest. And another of Amanas show-stoppers. We are working on presentation. 
And on not eating it all before it's finished. A busy but oddly photo free half term holiday, until yesterday, when Imi decided she needed to make chocolate brownies. Amana said she would help, I vacated the kitchen, and returned to this, and "I helped Imi lick the spatula, Mummy." 
She's been on CPAP ever since (with a short break for bread sauce, stuffing and gravy at lunch today), but she would definitely say it's worth it. 
And so that's us. Amana is starting to be in less pain now her spine is stable again. One month on, we are still dealing with the stitches and waiting for the steristrips to fall off. But she is mostly going through the night without needing extra pain relief. 
She has started year 5 at school, and is finding it hard and tiring work. Very happy at school, but very unhappy about the idea of getting there. Struggling with friendships, desperately wanting to be independent, helpful, and utterly dependent all at the same time. It's an interesting mix. 
Imi really did have a great summer. Two weeks camping, in one of the coldest Augusts on record - six degrees (Centigrade, for my US readers!) on one night. And no chest infections! Very very happy afternoons snuggled up with her best friend and visited by plenty of others. Good days, good nights, and a quietly peaceful balance with some difficult moments but mostly really lovely. 
And then September came, and a big chest infection came out of nowhere, and suddenly we were reminded just how brittle she is. She's getting over it now I think maybe, over a month later; we've just had three days in a row where she's been off CPAP all day. But then we've had three days where she's barely been off it at all, where her SATs have been rubbish, and increasing times when nothing but multiple doses of morphine and midazolam will help quiet her breathing. 
Our GP visits regularly, our respite nurses are a great team, we are surrounded by all the support we could wish for. And she is tired, and some days we can see that really very clearly. 
But, although I haven't heard her laugh for a few months now, she can still shout loudly enough to upset her sister and disrupt conversations. She doesn't kick a switch to communicate any more, but she can still knock syringes and iPads off her lap with a smile. And it might be for just a few moments at a time, but she's still got her non-verbal sarcasm down a treat, she's still singing away to her Mennonite hymns and to the Downing Family whenever she's got the breath for it, she's alternating David Suchet reading the bible with Anne of Green Ganles as a change from the chronicles of Narnia, and she's enjoying the bits of life she's awake and breathing well enough to notice. 
She finished a beautiful piece of glass in the summer, and has a papier mâché owl on the go just now. And then she wants to do something with an old clock. I'm not sure what. 
So that's us. In more depth. How are the rest of you? 

Hello

Sun, 11/02/2014 - 17:25
We are still here. Apologies for the long silence. A week becomes a month, a month becomes a season, and then posting anything at all feels like a really huge deal. 
I might go back and fill some gaps, I might just post from now, or maybe this will be it for another few months. Sorry for the lack of a plan. But I know people have worried, so I thought I'd just pop up and say hello, still here, still breathing, and life is precious and good. 
Thank you for your patience, if anyone is still reading. Tia

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. 
Tia

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. 
Hanania
Tia





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. 
Friendship. 
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