Thursday 25 December 2014

Happy Christmas!

Imogen woke us all at 6 this morning. Not fitting, not in pain, just very wildly excited and ready for Christmas!

I've been a parent for I think 15 Christmasses. And this is the first time I've not had to wake at least one child in order to be ready for church. To have two girls, both smiling, both laughing, both alert and aware of what day it is is definitely the best Christmas present I could ever have.

And Imi has been well for Christmas. CPAP off all day, minimal extra pain relief required, no seizure meds, minimal other rescue meds, and one very happy, LOUD, girl.

As an extra gift, she seems to have discovered her feet again. We removed her foot switch a while ago, as she didn't have the energy or the inclination to use it any more. So long ago, in fact, that her nurses have never seen it in use. Today, she found her feet. More than once, I removed her feet from my Christmas dinner - feet on the table is a definite first! And OK, she wasn't laughing, but she was smiling, she was happy, and she was busy. And so much better than she was this time last year. I'll take it.

I hope you all had as good a Christmas as we did.
Tia and the girls

Saturday 13 December 2014

When The Healing Doesn't Come.

I have friends on my mind. Multiple friends.

I don't think any of my friends are entirely unscarred; we are, mostly, the walking (or wheeling) wounded, limping along and praising God. Ignoring the mountains and tripping over the molehills.

Bereavement, disability, infertility, chronic and incurable health conditions, abuse and intolerance and marital breakdowns and general horrific life stuff. I think we're all well used to the idea that following God doesn't magically inoculate anyone against major life woes. I think we've also all met people who have experienced the miraculous; illnesses turned around, lives changed, tumours vanished. Hallelujah for each and every single one, and this post isn't intended to criticise any of the good stuff.

But I'm thinking tonight of the modern day Jobs I know. Families (more than one) who have adopted a child, only for that child to die, or be diagnosed with a terminal illness, and not just once, but twice or even more. Families struggling with the needs of their disabled child, only for the parents to develop health conditions of their own, followed by siblings of the disabled child. Families where the death of one child is chased by the illness of another, woes upon woes upon woes. Where the foundations of family life are pulled apart, one brick at a time, until only bare earth remains.

How is it possible that I know of more than one family where a sibling to a profoundly disabled child has lost their own sight?

I could trot out some platitudes about how God doesn't give us more than we can handle. But I'm pretty sure most of these families know exactly how true that isn't, and know how much more than they can handle is being thrown at them, day after day after day. I could try saying that where there's life, there's hope; but I also know how hopeless some of my friends are feeling right now, and honestly? I'm not sure I'd be hopeful in their situations either.

There's an assumption that some kind of major negative life event ought to cover you. That one Really Bad Thing ought to be enough, and that, having been through the worst, the rest ought to be better and better. And I see so many families drowning under the evidence that it really doesn't work that way. Whilst other families go through something similarly awful, or significantly less awful, and then having been thoroughly scared by the what might have beens, go on to live a beautiful and rich and altogether lovely life. Which is great, but not for those who are still swamped by the ever rising tide of awful.

There's a lot of pressure on these families to somehow make it all be good. To find some kind of simple meaning in what's happening, to give hope to those around them, to protect their friends and supporters and acquaintances. I'm sure no one means to pile on the pressure. But every "Have you tried...", every "What about...", every "Oh a friend had that and they did this" just piles on the torment. Even a simple "So how's it going?" is exhausting when the answer is the same, or worse, than it was the week before and the week before that, and the week before that. And the week before that. Even if it's the last thing on the asker's mind, the act of dashing the hope for good news, having to recap the awfulness, bringing the situation back into the forefront of the mind, when it might have temporarily been pigeonholed behind closed doors to allow for a brief moment of thoughts of something else is just plain exhausting. When it's not devastating.

Waiting on God is hard work. Railing against God is even harder work, and possibly not helpful, but I do know He can take it; if his hands can hold the whole world, then his shoulders are definitely broad enough to absorb all the anger and sadness and frustration and fury and fear that's thrown his way. And I'm absolutely certain He'd rather hear all about it directly, than hear us all muttering to each other about the generally massive unfairness of it all whilst trying to avoid laying the blame at his door. And that's possibly just me, maybe my friends are much too mature to be doing any of that.

It's hard, being helpless. Knowing that absolutely nothing I can do can help, or change what's happening. I can watch Imogen on a difficult day (and there are some very difficult days now), and wonder how many more breaths she has left, scared that I might be counting her very last ones. And I can watch her on her better days, and celebrate the singing and the shouting, and revel in the smiles. And know that I have too many friends who aren't having any better days right now, and my own joy is bittersweet.

In my head, these past few days, the phrase "This is the year of The Lord's favour" (Isaiah 61). And this has been an amazing year for me. God is good, God has poured out amazing things on us this year. Deepening friendships, abundant rainbows, and two daughters still with me; not something I expected to be the case this time last year. I'm profoundly thankful, and profoundly confused - how about a little less for me, and a little (or a lot) more for my drowning friends? I wish I understood.

A story from a speaker back in February. I'm sorry, I don't remember who. The essence of the story; a baby with meningitis, a night of prayer and torment in hospital, a miraculous turnaround, and a family singing and praising God in the morning as they came home with a healthy baby; nice neat prayers being answered. And the question "Would you still praise if you'd been coming home without your baby?" My friend and I - who have both lost children - looked at each other and answered "well we did." Because we know, even when we don't understand, that God is Good. All the time, even in the moment of the unthinkable awfulness. And He remains good, even in the decade of awfulness some of my friends are living through. God is Good. It's a good job it's a short sentence; when things are hideous longer convoluted thoughts are just too complicated.

I don't understand. It isn't fair. My friends have suffered enough. My girls have suffered enough, if it comes to that, although this isn't really about them.

I want to make it better. I can't. And by trying, I only end up making it worse. All I can do is pray.

A friend will text me occasionally at three o'clock in the morning. One word; "Pray." I don't need the details, I don't even need to know which friend it is (and I don't always, as she sometimes has to borrow someone else's phone). Doesn't matter, because God knows exactly who and where and what and why and how. Sometimes a friend needs to know I'm praying for them. Other times, I think knowing that you are being prayed for adds its own pressures; it is a very hard thing to believe yourself to be somehow responsible for the faith of others. And unanswered prayer is a hard thing to live with.

I do know this though. That as certainly as God is Good, no prayer is ever ever wasted or unheard. I may never understand the reasons why some prayers are answered in such awesomely amazing ways, whilst others appear to be flat out denied (and I'll never believe it's as simple as Yes, No, or Wait - the God who intervened at the Tower of Babel surely has unlimited vocabulary up his sleeve). But my own understanding isn't what's important here. God is Good and Prayers are Heard.

The Spirit of the Sovereign Lord is on me,
    because the Lord has anointed me
    to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
    to proclaim freedom for the captives
    and release from darkness for the prisoners,
to proclaim the year of the Lord’s favor
    and the day of vengeance of our God,
to comfort all who mourn,
    and provide for those who grieve in Zion—
to bestow on them a crown of beauty
    instead of ashes,
the oil of joy
    instead of mourning,
and a garment of praise
    instead of a spirit of despair.
They will be called oaks of righteousness,
    a planting of the Lord
    for the display of his splendor.
They will rebuild the ancient ruins
    and restore the places long devastated;
they will renew the ruined cities
    that have been devastated for generations.

Monday 1 December 2014

Speedy(ish) brownie bottom cheesecake

Step 1. Offer to bring a pudding to lunch. 
Step 2. Forget until morning. 
Step 3. Decide only a brownie cheesecake will do. 
Step 4. Find multiple recipes, all of which require multiple stages of baking, multiple hours cooling time, or multiple ingredients not currently in the house. 
Step 5. Find some promising, nearly there, recipes, combine, increase, simplify, and come up with this. 

Melt 4 oz plain chocolate with 5 oz butter over a very very low heat. Dump a teaspoon of vanilla essence and 8 oz sugar into the saucepan, stir. Add 2 eggs, 2 oz plain flour and a goodly sprinkle of salt, stir until smooth. 

Pour into bottom of a greased ten inch loose bottom cake tin. Chill in fridge (or freezer, if you're a fast worker) whilst making the cheesecake layer. 

Preheat oven to 160C. 

Take 450g cream cheese, 2 eggs, a gloom of vanilla bean paste, and a big dollop Greek yoghurt (in this case, fat free Greek yoghurt, and half full fat, half low fat cream cheese as that's what I had. I might have gone for sour cream over yoghurt if I'd had the choice). Whisk until smooth. 

Pour very gently over brownie base, then bake at 160C until it looks about right. 57 minutes in this case. Turn off oven, leave cheesecake in to cool. Panic slightly about time, remove before totally cold and put in garden to finish chilling. 

Sunday 2 November 2014

Pictures. And words.

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 again
Making 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? 


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. 

Friday 29 August 2014

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

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. 


Tuesday 12 August 2014

New Wine in Words.

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

New Wine in photos

All 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. 
Team Blue 2014
Stunning sunsets and surprise wildflowers hidden behind the tents. 

Sleepy morning worship with sneaky cuddles. 

Not a bad week! 


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