Eye of the storm

Faith's a funny thing. Faith let me treat Mog's big seizure last week, then leave her at school to go swimming. And then enabled me to leave her at the hospice for a long weekend, as I went off for a weekend a couple of hours away. That couple of hours is significant - thirty minutes is my comfort zone, my ability to get back to her bedside to give her the second dose of emergency medication, my chance to be with her before it's all too late. Helen House is the only place I can leave her when I'm more than thirty minutes away, and even then I rarely do.

Logically, I know that Mog is just as safe in God's hands whether I'm sitting right beside her or on an island with a lengthy walk and then a ferry and then a too long drive home to get to her. But whilst my head says "God's in charge", my heart says "My beloved child; what if she needs me?"

Which makes Sunday all the more precious.

Saturday was a beautiful day. It was a day with 1477 other women (and a few brave men in the band!), an appointment with God which we'd booked up in the middle of a different storm, in January. Make a date with God and He tends to show up. And there was worship, and there were tears, and there was teaching, and because it was my friend and I, there was a certain amount of inappropriate laughing too. But God made us, and God gave us both a shared sense of humour, and I think He might have been laughing too.

A message delivered so fast that I'm finding different sentences floating up now; sentences I'd somehow filed away to think about later whilst trying to keep up with the next thing Christy Whimber was saying. And a message I didn't entirely agree with, but like an apple; plenty of sweetness, a hint of sharpness, lots to chew on, and some pips to be spat out.

And a beautiful sunny afternoon, a walk along the rocks, and as bonus light relief from some of the heaviness of the day, a big black lab bouncing along the waves, exuberantly retrieving the most revolting tennis ball ever from the black salty water.

And then another lovely meal at our hotel, and then tears and honesty and openness and a ridiculously late night (Sorry my friend!), followed by a good night's sleep.

Sunday was supposed to be cloudy and cold and somewhat grotty; we had gone to bed knowing that we'd had the best of the weekend on Saturday. But instead we woke to streams of sunshine forcing their way through the gaps in the curtains; a perfect day for our trip to the island.

And not once did I stop to think about how far away from Mog I'd be. After a wobble on Saturday night, I woke up without any of the "what-if she needs me"s on Sunday. Just knowing she was safe in God's hands, and in the hands of the hospice staff, and not even thinking very much about either girl, except to be thankful for them.

And the day was a gift. I think God likes to give us things, and on Sunday He just kept on giving. We had a slow start, but still managed to catch the first ferry of the morning. And the sun blazed down on us, and the water danced, and we landed on beautiful Brownsea Island. We walked through Scouting history, and we were surrounded by outstanding beauty, and the sun shone down on us. The ground was soft beneath our feet; moss carpets and bouncy clay; the ultimate in easy walking. I had forgotten how good it is to walk without either pushing a heavy chair or carrying a heavy backpack. And my friend carried our water and money, so I had nothing but my coat to hold me down.

It was a day for singing, a day for tree climbing, a day for dipping toes into icy cold water. A day for discovering that my friend's geocaching habit can actually be quite fun (Yes - I apologise to all of you for being rude about it in the past). A day for nearly being savaged by an angry peacock, a real "Taste and see that the Lord is good" kind of a day. A red squirrel. Birds. Scouts camping where Baden Powell held the first ever Scout camp. Bell ringers in a tiny church. Pink trees, blue skies, steep paths climbed gently. Laughing and smiling and talking and standing together in silence.

Finally time to start thinking about coming home. And so we meandered down to the ferries again, and, the icing on the cake, our own private upper deck (OK - the wind was up and no one else was silly enough to want to freeze) and so our own private tour around the other islands in the harbour. Sitting freezing feeling the force of the wind, and realising that what we'd expected to be the first step towards home was in fact the icing on the cake, an extra portion running over. God is good.

A clear run home, and a slow walk back to normality. The chance to get to an evening service (happens once or twice a decade), a peaceful night, and then a different kind of busy day on Monday.

And then back to reality with a bump and a bang and a whole lot of twitching. A Mog with a long long seizure - record long for her - and a Mog struggling either with whatever new breathing thing caused the seizure in the first place, or with whatever breathing thing the huge dose of diazepam has left her with. Hopefully temporarily. But a night full of alarms and beeps, and now a morning where she has woken up as I write this, but is unable to cope without her CPAP.

A morning where I'm back to "Help me, God, I don't know if I can do this", and a morning where the reality of the possibility of losing her (not immediately - I assure you I wouldn't be blogging if that were the case!) feels far too close. The sea is so wide and my boat is so small, protect me O Lord.

Is my faith any less than it was when I left here on Friday? No. Am I scared? Yes. But Sunday is a precious jewel of a memory, a bright shining reminder of how much God loves me, and how He is so much more immeasurably immensely everything than I can ever possibly begin to imagine. And tears and worship come hand in hand. This weekend we stepped briefly into the eye of the storm, and there was peace and beauty and perfection - and we were sheltered from the winds of life around us. And now I've stepped back into the storm again, and I'm breathless. Breathe on me.

Jesus, be the centre.
Tia

Blaze2013

Will you walk with Me through the fire and the rain?
Will you trust in Me through the joy and through the pain?
Will you love Me always when the world hates My name?
Will you take My Hand and lean on Me again?

Love this.
Tia

Tia's 10,000

No, I'm not leaving here. But I have set up a new blog too - my 10,000 reasons . If I can find ten reasons to be thankful every day, I ought to have 10,000 in less than three years. And I figure they might not be terribly interesting to everyone else. But if anyone else feels like joining me to find their own 10,000 then please do pop on over.



Tia

Two Sentences

Our Curate posed this question yesterday: "If you had to present the gospel in just two sentences, what would you say?"

Aha, I thought, from my nice safe seat near the back (have to be able to get out in a hurry in case the girls need me, don't you know?), that's easy.

"For God so loved the world, that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life." and maybe, Jesus said "I am the way, the truth and the life. No one comes to the Father except through me."

Except, oops, that's three sentences not two.

So then more verse from the bible, passages from the creed, liturgy we rarely use any more started floating through my mind.

The 4Points have it down fairly pat (and some groovy sweatshirts):

• God loves me
• I have sinned
• Jesus died for me
• I need to decide to live for God

Now technically; technically - that's only one sentence. Less than one sentences since there doesn't appear to be any punctuation at all. And it's all very glib, and it's probably the shortest answer to "Teacher, what must I do to be saved?"

But I started thinking about who might actually be reading these two sentences. And I thought about the people I speak to most often, the people I spend the most time with. Friends, family, support staff. And I realised they've all, probably, heard these words a thousand times before.

So what would I say if I knew this were going to be the very last chance I'd ever have to say anything at all to them?

And that's a harder question, because the temptation would be to keep to "Goodbye, take care, I love you." Keep it casual, keep it light, or take it deeper, but still only surface deep. There is, after all, an enormous arrogance in starting a conversation which aims to bring up something along the lines of "Look, I'm saved, you're not; I'm right and you're wrong, fall down on your knees and repent for the end is nigh!" May God forgive me for the times I've ending up running down those lines. And may He also forgive me for the times when I've let the fear of sounding arrogant get in the way of speaking the Truth.

Because the truth is; I'm a very long way off perfect. There are logs in my eyes bigger than the Titanic, and capable of causing even more destruction. I am not patient, I do not have a proper and Godly amount of self control; I shout far too often for my own peace of mind (and possibly that of my neighbours' too). I'm way too happy when bedtime comes. I enjoy that chocolate-fudge-brownie-with-a-side-order-of-gingersnap-biscuit-and-maybe-a-small-helping-of-chickencasserole,asparagus-risotto,-ooo-another-couple-of-roast-potatoes-and-a-large-bowl-of-rice-pudding,-why-not far far too much, and dislike really quite intensely the thought of any of the exercise which might help burn it all off. My house is messy, and I'd far rather read a book or write a blog than do anything about that. And that's just the stuff I'm willing to share.

And with all of that, how can I possibly turn around to anyone at all and suggest I've got something they need? Especially if they don't know they need it? When a friend says they go to church because it's the right thing to do, but they don't believe in all of that stuff, and yet they busy themselves in church life(Not our church!) to the point of spending most of their time in church activities, serving those in need, helping out wherever most necessary, how dare I suggest that perhaps they should listen to the sermons from time to time?

When a friend has been deeply and seriously hurt by The Church in the past, how can I presume to suggest that hope may be found in that same place?

And the answer is, of course, I can't. We, the people who make up The Church, are broken, fallible, sinful, imperfect, flawed. There's nothing about me which is intrinsically better or worse than anyone else. I was born with the same balance of good bits and bad bits, and the same need to work things out. My own bad things might be different from yours, or they might be the same, but they're all still there. Perhaps there are those out there who don't struggle with something in their lives, but I've not found that person yet.

And so maybe that's the answer. It isn't about me. It isn't about looking at me, measuring my life against yours, or yours against mine. It's all about God. And if I measure my life up against God, I come quite a long way short. As do the most annoyingly perfect of my friends, Christian and non-Christian alike. We might be "not that bad", but nothing short of utter perfection, in everything, is ever going to be good enough. Happily, God loves me anyway. Jesus loves me, this I know, not because the Bible tells me so, but because His still small voice whispers to me when I open my ears to hear.  And I am His; and being His doesn't insulate me from any of the horrors of this world, but it does mean I am never ever facing them alone. And that Eternal Life bit; well that sounds pretty good too. Eternity spent at the feet of the One who loves me the most, or Eternity spent alone? I know which I'd prefer.

So perhaps my two sentences come down to this. "Jesus loves you and me, more deeply than you can ever imagine, no matter what we ever have done or ever will do, and there are no limits to what He can and has done for us." And "So what can we do in return?"

Great is Thy Faithfulness

New Whine

We're New Winers. From our first visit, with my most favouretest ever photos of tLP, to the disappointment when chicken pox cancelled our attendance the following year, to scarily awesome excellence in 2010, to sunshine and more conversations, I've always left with a very clear sense of direction, something big or small (and often unblogged-about, but knowing what I needed to be doing next and where Gad was in all of this. Hurrah.

Until this year.  Now, please don't misunderstand. New Wine was great. Despite crying and pleading to be allowed not to go (and then making a total nuisance of herself the one time we listened and let her come to the grown up meeting instead of going to her age group), the Little Princess says that Ground Breakers was the Very Best Thing. Mog opted out of Our Place (special needs group) and Rock Solid (age group) both, and chose to come with us. I don't think the fact her princely friend came along too had anything to do with that decision. But I couldn't swear to it.

And God was there and it was all good. Awesome. There aren't many times in life you can be sitting in a giant tent and watch a church friend come to the front, because God has healed his knees, and the stiffness and immobility he had following surgery a few years ago has gone. And then come back to the front a few minutes later, because not do the knees now work properly, even the scars have disappeared! Fantastic stuff. God is great.

Except.

At that same meeting, Mog was sitting on my lap. And as the speaker was praying for tendons, muscles, sinews, her arm, which is usually stuck fast up here

 relaxed beautifully and brought itself down into her lap.

Not a position where it will voluntarily move to; somewhere we can sometimes move it to when she is stoned to the wide on vast doses of diazepam extremely relaxed, but where as soon as we release it, it will ping back up to shoulder height.

This arm bothers Mog. Being in a wheelchair doesn't. Not being able to talk doesn't seem to, as long as she can get her point across with her Talking Book or adroit questioning. Seizures, except the painful ones, don't worry her. But having an arm which sticks out and gets banged on doorways and knocked against lampposts, and pulls on her shoulder and drags her body over, that bothers her.

When we've met surgeons, Mog has been pretty clear that she does not want to do anything about her back. Yes, it's twisting. But no, she doesn't want surgery to stop it twisting more. Which is a relief, because I don't want her to have that surgery either. But meeting the surgeon who has a special interest in arms, Mog was so clearly able to get her wishes put across that the surgeon stopped talking to me altogether and dressed herself entirely to Mog. Who responded, very clearly, that she wants something done about her arm.

We've had investigations. And, despite having said she'd never have another anaesthetic after her hip surgery five years ago, we've agreed to her having botox into her shoulder, in an attempt to loosen the arm and allow it to be brought forwards. A less radical option than cutting the bone in half, rotating it 180 degrees and pinning it back together agai; potentially not a long term solution, but at the very least worth a try to see if we can get the results we want.

So when we sat in the meeting place, and Mog's arm came down and relaxed, I thought that was an answer to Mog's prayer. Wonderful stuff. Very exciting. No need for surgery, a good solution to the thing about Mog's disabilities which bothers her the most.

And then we woke up in the morning, and Mog's arm had boinged back up to its previous position.

And there it sits.

And I don't know what to make of that. True; it's looser than it was. We can get it back to that midline position sometimes. And that's encouraging as far as the botox is concerned. I hope that means that when she does have the botox, she will cope with having it strapped down against her body as the botox takes effect, and that there will be fewer body spasms as a result.

But still. I'm very happy for our friend with his knees. I know he'll make hugely good use of them in all he does for God. But but but...

It doesn't make sense to me, I don't understand it, and I suppose that's another demonstration of how much bigger God is than I am. It does seem very unfair though - and I know Mog still wants prayers for her arm, although I think now we're praying that the botox goes smoothly and is surprisingly effective. It's difficult asking for prayers for Mog. People see her wanting prayer, and jump in enthusiastically to prayer her out of that wheelchair, or to heal her whole body. And she's never said that's what she wants. They don't always listen first. 

For me, I know that as she sat on my lap, she snuggled in. For a few brief moments, her whole body relaxed. Not as it does after much medication for seizures, but just as if she were any other child snuggling in for a cuddle. Her body doesn't do that. It's either medicated into floppiness, or there's a stiff resistance from her spastic muscles and contractures. I love cuddling Mog, but hers is a one-way hug. Sit her the other way around and her body leans out, not in. And selfishly, I'd love to experience that again. I'd love to see Mog not being slammed back against her chair with involuntary muscle spasms and seizures, just sitting, relaxed, and able to control things for herself a little more.

I'd like to wrap it up with a nice neat solution or a gently positive bon mot. But I don't really have one. It doesn't feel fair; I'm sad for her. I'm trusting God, of course I am, but I'd like to see the bigger picture. Why show us something and take it away? Was it real? Enough people saw it that I'm confident it was. But then, why so temporary? And other questions.

Tia

Christmas, it's Christmas, it;s Christmas once again

and if you've been at Christchurch for a while you're now singing along. If not, then just for all you lovely people who don't have the pleasure...

Christmas, it's Christmas,
It's Christmas once again.
The Birthday of Jesus,
Born in Bethlehem.

The Lord, who was that tiny baby
Existed long before the birth
He laid aside his heavenly glory
To be Jesus, Saviour of the Earth!

Christmas, it's Christmas....

The Lord, who was that tiny baby
Grew up to show the Father's love.
He laid aside his life to bring us back to God
Raised to life, he's back in Heaven above.

Christmas, it's Christmas...

I'd insert a video here but apparently we and Cupar Old Parish Church are the only people who ever sing it. In the gospel according to Google, anyway. I am truly sorry I can't share the earworm. Tried to find something equally irritating catchy for you, but failed.

So am sharing this again because it still makes me grin.


I'm finding myself wondering at the moment. Nativity stories love to include the innkeeper. The Little Princess has been Inky the Wife more than once (I guess innkeepers' wives spend a lot of time sitting down). But, you know, there's no mention of an Innkeeper graciously or begrudgingly allowing Mary and Joseph to sleep in their stable. Just the fact that they did. And I can't help picturing them waiting until the middle of the night, and slipping in amongst the animals, dragging themselves up early again the following morning before they were discovered. Or wondering how many other people were already crowded in with the animals in some kind of temporary refugee camp. I wonder how many nights they'd been there before Mary gave birth. And how many nights it took them to get there from Nazareth. And what they did for nappies. I'm thinking that a Heavenly Host of angels and a flock of shepherds probably blew their cover if they were hiding out.

And then, warned by angels, Mary and Joseph took the baby and fled to Egypt. Shortly before Herod killed all the male babies in Bethlehem. I wonder how much stigma they suffered there - a potentially illegitimate child, certainly one conceived before a betrothal became a marriage. Refugees, who somehow mysteriously managed to escape a mass infanticide no one else knew was coming. How long had they been in Bethlehem before that? How many of those mourning mothers had been Mary's friends, supporting her as a stranger in a strange town around Jesus' birth?

And I wonder what it was like growing up as Jesus' little brother or sister? We know the oldest in the family is always the perfect one (nb: I am the oldest in our family), but how must it be, realising your older brother really IS the Perfect Son? What must it have been like for Mary, having an average child or even an exceptionally wonderful child, after having the perfect, sinless one?

What happened when they finally went home from Egypt? What happened to Joseph? Did Mary save that Myrrh and use it on that fateful Friday 30 years or so later? Or was it sold, used for other relatives? Did that gold fund their exile in Egypt? And at what point did Mary realise her son's Kingship would kill him? How about Joseph? What was it like, being God's Stepfather?

Christmas; it's a time for children. The magic of a tiny little baby with cute fluffy animals, and kings and angels and fairy princesses, fat jolly men who provide endless wish fulfillment (or provoke a deep terror and tears at bedtime, because either you don't let Father Christmas in because he's scary and then you won't be scared but then you might not get presents either, or else you do let him in but then he's scary, and the suggestion he might not in fact be real is even scarier yet). Pantomimes and cinemas and "specials" for every tv programme. Whilst we the adults wish a longer labour on Mary as we wrap and shop and wrap and bake and clean and decorate and prepare and, well, and maybe, just maybe, manage to spend a bit of time forgetting the trimmings and cutting back to the meat of the story. Emmanuel, God with us, God humbling himself, pouring his might and majesty into a frail human body. Fully human and fully divine; a mystery still dividing the world two thousand years later.

Happy Christmas Birthday.
Tia

Stanker

Tonight, I am, once again, a STANK. I am stanky for opting for evening routines and bedtimes instead of unlimited Cbeebies, and Stanky for banning another repeat of Justin's House, and very very stanky for insisting that hands are more or less wiped with a flannel to at least attempt to remove some of the glitter paint used at Rainbows. And I am a stanker stanky stinkstank for wanting Mog to be able to enter the sitting room instead of being parked blocking the front door. But I am also apparently a lovely precious Mummy and MY Mummy and I need endless kisses.

Turbulent times. I'm not looking forwards to the teen years.

Happily, Mog finds this entertaining. Which is good, because she'd otherwise get lost in the battle. I am after all the biggest stank of all for taking "GO AWAY AND LEAVE ME ALONE" as a cue to go and get Mog sorted and into bed. How unreasonable of me.

It's been one of those afternoons. And I can't help thinking that actually, I probably am a bit of a stank, even if not necessarily a stanky stinkstank. Because most of the stankiness could have been avoided. tLP was expecting to come home to a sausage sandwich. I didn't make (or buy) bread, so she had sausage and potato instead. Change bad. Sweet potato even badder. If I'd moved a little faster on the way back from Rainbows, she wouldn't have run into the backs of my legs, and I wouldn't have shouted. If I hadn't been grumping about having just been run over, I would have been able to pre-warn tLP that her next move was to park her chair and hop into the bathroom. She needs warning of imminent lack of Cbeebies. Change, as I may have mentioned, bad.

And if I'd spent the day differently there would have been nicer things waiting for her. If I'd spent the hour she was at Rainbows differently, then at least evening drugs would have been drawn up, evening feeds set up properly, and the long distance Take your jumper off/YOU ARE A STANK cycle could have been swapped for a friendlier, more cooperative getting ready for bed closeness. But instead I mooched around and made "waiting in for deliveries" into an activity in itself rather than doing anything vaguely useful whilst waiting. And Mog had a music and bubbles day - pleasant for her, but perhaps a waste of a nice awake without attention-grabbing sibling day?

And now the girls are in bed, and the stankiness of the day was relieved somewhat by the snuggliness of the evening, and huge and vast sighs of relief all round at jobs done, routines over, and the gentle hum and whirr which passes for silence in this house. And I'm sitting here stewing over my own inner stankiness, frustrated that one of the deliveries didn't turn up, and annoyed that I think I've recycled one of the smaller deliveries without actually removing the delivered item from the packaging first. Is that stanky or just stupidity?

And I'm thinking that four years ago today we buried Goldy today. And we've tried to commemorate her life in various ways. Friends bought us a tree - it died. We bought some cats which linked to other parts of Goldy's life - and one of them died, and one of them is now not stanky but decidedly stumpy. And there wasn't even time or thought tonight to eat a Goldy Pizza. And I know she wouldn't care - if she wasn't eating it herself then there wasn't much point to it. My purple-headed pizza eater, we have for the past few years enjoyed troughing doughy slabs in her memory. I think perhaps forgetting her funeral pizza might count towards further stanky behaviour. It's also just possible that deciding to move her out of our house and into the supported living placement which ultimately caused her death is pretty stanking too.

So there you have it. A few of the reasons why I am in fact a Stanky stinkstank. Mog could, I am sure, add to the list. I'm reasonably certain she think's it's very stanky of me to object to her midnight singing. I think tLP is right. I am a stanky stinkstank, a stanker and a stank.

Which is precisely why I am so thankful for this

Stankfully yours,
Tia

Somewhere in the Middle

Mmmmm
Tia

New Wine

Lots to think about, lots to process. Beautiful weather, lovely friends, speakers I could have listened to for hours except that one hours' speech was enough to think about for the rest of the day (and week and month).

For the first time ever, I am not at the annual Special Kids in the UK summer camp, the dates having clashed. So I'm even more pleased we were able to import some of our Special Kids friends, as well as making new ones.
I just love how these two can go months without seeing each other, and still be the very best of friends when they meet up.
And I love how much of a cool dude my Princess is getting to be.
but never too cool to do the washing up.

Good to spend time with God too; I do like it when He comes on holiday with us. Almost too much to think about; a very differently deep and rich week which I shall be feeding off for a while.

I'm seeing a different kind of a future now to the one I thought I had even a few weeks ago, and I'm very interested in seeing how it will all work out.

And, my potted thought for the week, "There are no distorted mirrors in God's House." So if we are all made in His image, and if He is beautiful...

Tia

Happiness?

Our Preacher this morning spoke on John 11, vv 1-44. Very cool passage. Lots of stuff. Doubting Thomas, ready to die with his Lord. Lazarus dying. Martha, trusting. Mary, rebuking. Jesus weeping. God working, Lazarus living. All good stuff.

Drawing on his own experience, he told us about a time in his own life when he had been deeply depressed, and how a vision he had had of Jesus weeping with him had been the start of things turning around for him. I'll go along with that. I don't know why there's so much suffering in this world, but I know absolutely that I'm never alone; that for every tear I might shed, Jesus is right there beside me, and He knows all about it and feels it all far more deeply than I do.

There is huge sorrow in this world. And my God is bigger than all that sorrow. But that doesn't dispel the sorrow, it just means I'm not grieving alone. And there is huge joy in Christ - but that doesn't take away the sorrow either. Jesus wept. Jesus weeps. Wholly human, and wholly Divine, He shares in both our sorrow and our laughter. Which is, on the whole, pretty awesomely amazing and excellent.

But our preacher also suggested that this current "epidemic of depression" is because this generation of depressed younger women do not know Jesus. And I have to take issue with that.

I know Jesus, I walk with Jesus and trust in Him and believe in Him and love Him as Lord and Author of my Life. And yet, I've been deeply, profoundly, depressed at times. I've been depressed and on anti-depressants, I've had counselling (both Christian and secular), I've seen psychiatrists and I've spoken to concerned and loving friends. And I am disappointed that a man, who has himself suffered from depression, should suggest to the congregation - and therefore to those within the congregation currently struggling with depression - that depression is due to lack of knowledge, or lack of faith in Jesus.

I'm fairly certain this preacher would not suggest the same thing about cancer, about 'flu, about physical or learning disabilities. So why make that assumption about mental illness? I know that Jesus heals - but even 2000 years ago, He didn't heal everyone. When He went to the pool at Bethsaida, He spoke to just one of the men lying around the pool. I'm sure He could have waved a hand and healed the lot, or spoken to the waters and commanded them to heal all who drank from them. But instead He picked out just one man. Was that man better than all the rest? Did he happen to have the one form of disability which was fixable, as opposed to all he others? Were the others worse sinners than he? Was he simply the nearest to Jesus as he walked by? Or the loudest? Or, after 38 years of lying by the waters, the most disabled? I've no idea. But I'm pretty certain God loved the un-healed ones just as much as the healed. And I'm pretty certain He was just as fond of the dead He didn't choose to raise as he was of Lazarus.

Depression is an illness. It can be disabling. It's overwhelming. The Lord is my refuge and my strength, and He walked with me through the valleys of the shadow of death. But the Prozac restored the chemical balance in my brain; the pills helped to overcome the depression, just as my daughter's antibiotics clear infections from her lungs, and her anti-epileptic drugs subdue her seizures. Yes, God could have done it in a sudden miraculous supernatural healing. But He chose not to - and he walked me through it instead. Just as He chooses to walk with my daughters through their own illnesses, both acute and chronic. It is not my girls' lack of faith (nor their birth parents') which caused their disabilities. And it was not my lack of faith which caused my depression.

Jesus saves. Jesus heals. Jesus brings hope and light and life, and it is my prayer that everyone might one day come to know Him. And the young woman with depression may find Jesus as much of a comfort and a companion as the older woman with cancer. But it would be irresponsible to suggest that cancer patient stop treatment and rely solely on prayer.

God made man, and gave Him the tools to treat illnesses - from the most basic first aid through to the most sophisticated and futuristic medical procedures. And of course prayer is important. If I'm going on holiday, I might pray for a safe journey. But I won't get anywhere at all if I don't get into the car and drive.

And this post has ended up at a rather different destination to the one I originally thought I was heading towards. So I'll leave it with a request please for prayer for a few friends I have who are themselves in hospital right now, and for a few different friends who have children in hospital, and who are having to make difficult decisions this coming week. For friends who are not in hospital but who possibly should be, for friends who are facing the reality of life without their treasured children, and for other friends who are starting different chapters in their lives just now. And if this is cryptic, I apologise. But God knows the details.

Tia

Believe and Trust in Him.

A Confirmation and Baptism service at church today. We're a good Anglican church; we have Baptisms by full immersion and by sprinklings of Holy water. We have affirmations of Baptismal vows both underwater and on dry land. We have adults and teenagers Confirming their faith in Christ, and at other times we have infants Baptised or Dedicated or left to make their own choice later.

It's easy to mock this our muddled church. But, the thing is, it's not about who's right and who's wrong, about what I did as opposed to what she did or what he did and what they say. It's about obedience. It's about the willingness to stand up in front of the congregation, to make a declaration of faith, to reject evil and to turn to Christ. And to believe and trust in God and in no other.

There's a picture on my parents' dressing table. Or there was; it's been a while since I left home and longer still since I was in their bedroom. My father in a smart suit, my mother in a smart set of clothing, and myself as a tiny baby in a beautiful white Christening Gown. Standing as a family outside this my church. And, well, it's been a while since we discussed it, but if I remember things correctly, the Christening played a part in bringing my parents into the church.

And so I grew up, obviously not remembering any part of my Christening, but knowing that I was a child of God, and a child of Christchurch. Sunday mornings spent making fans out of the order of service sheet and leafing through to find page 49 of the mysterious green booklet which had so many pages missing. "And we have sinned against You, in thought, in word, in deed. Through negligence, through weakness, through our own deliberate fault. We are truly sorry, and repent of all our sins." And knowing forgiveness, and hoping not to sin again until next week, and then skipping through to various Sunday Schools and "For You gave me a heart, and You gave me a smile. You gave me Jesus and You made me Your child. And I just thank You, Father for making me, me." And pennies in the collection for Tear Fund, and endless colouring in of sheet after sheet of whatever this week's story might have been, and learning that you don't have to close your eyes if you're going to pray in the school playground so the bullies don't see.

And then Pathfinders, and CYFA, and summer camps in wet fields in Windermere with green porridge and collapsing latrine tents and "At the name of Jesus" sung to beyond the point of insanity. And the realisation of the need to make a personal decision, to take this faith and this knowledge and this Jesus and stand firm for myself, not relying on the faith of others to see me through it. It's not about believing - I believe in God as firmly as I believe in mountains and sea and sky, family and friends and the internet. But making the decision to stand up and be counted, to put my trust where my belief already lay.

And so to being Confirmed, at a service which happened to be on my 15th Birthday, and so spending my birthday with the multitude of relatives who had come to see the service, and eating a cake with frosted grapes on the top - elegant but disgusting - and speeding through the day to the evening, to the moment where Bishop Bones would lay his hands on my head, and I would be filled with the Holy Spirit and all would be wondrous and magical and somehow super holy and wise.

Or... to the moment where I would kneel in front of the Bishop, he would lay his hands on my head, and pray, I would whisper my Amen, and feel nothing. No new wisdom pouring in, no conscious realisation of these Companion and Helper and Comforter and Comer-alongside who was supposed to have met with me at this point of Confirmation (and not before). Just the same old God, and me with the same old prayers, the same old faith, but now allegedly a "proper" Christian and entitled to take Communion.

And, setting aside the silliness of teenagers kneeling around a man in a dress, there is such comfort in that Communion. Taking the bread and the wine, as others have done for two thousand years, remembering Jesus and welcoming Him again. And a weekly cleansing from all sin, and renewing a right spirit within us. And knowing that it is indeed right, our duty and our joy, at all times and in all places, to join with angels and archangels and with all the company of Heaven, forever praising You and singing Holy, Holy, Holy, Lord, God of Power and Might. Praying, and having prayers answered, receiving pictures and later walking into the landscapes I've dreamed. But feeling like a dry river bed, not a mountain stream. Cracked and parched, and wanting more.

So on to college. A Christian Union, meeting Christians who were actually Christians and not necessarily Anglicans. And realising the two are not the same. Attending a Baptist church, and being taught that only a Believer's Baptism counts. And wondering if this is it, this is what I've been missing out on. Stepping into he Baptistry, and being Baptised once again in the name of the Father, the Son, and the Holy Spirit. And knowing that once again, that wasn't quite right, that there was still something missing.

Visiting the Pentecostals. And learning that all believers speak in tongues; therefore, if I do not speak in tongues, I cannot call myself a Christian. Wondering what I am, if not a Christian, but willing to give it a go.

And speaking to my Saviour, Lord God, in English and in tongues, praying and praising, but knowing this is also no different somehow to the relationship we have had all along.

Moving again, and picking a church by the timing of the morning service, knowing I must start my shift at noon on a Sunday. A brief fling with the United Reform Church, long enough to be visited at work (in a boarding school) by the minister, thus ensuring 18 small boys would run up to let me know a man in a dress was looking for me.

A new job, a new location, back to the Baptists and some lovely women's fellowships, and bowling nights and beautiful services and genuine Godly friendship at difficult times.

And then home, back to Abingdon, and back to Christchurch, but to a church which seems to have transformed itself in the years I was away. New friends, new relationships, new orders of service, altered liturgy and a new ministry team. And the same old reliable, faithful, trusty, God, still present, still waiting. And God who speaks, through His word, through friends, through the church. And God who maps out my life so much better than I could. And me, still pushing, still searching.

And God who is there when my children arrive, and God who is there when my daughter dies, and somehow sees me through it. And God who is there as I give evidence at the inquest, and God who is there as we hear the court verdict, three long years after her death. And me, dry.

And another daughter ill. And me knowing and believing absolutely that there is no safer place for her than to be under God's wing. And yet the realisation that I could not leave her there, that actually I quite liked my plans for her life and I was afraid God's might be different. And an impasse.

And then, New Wine. And a friend who was able to listen, and who, in a very brief conversation, was able to move on from "this was not your fault" to "then you need to forgive yourself". And a change of heart. And then God. And a seminar, and a "please come forwards for prayer" and a pressing forwards for prayer - and then too many people coming forwards for prayer and not enough time, and yet another missed encounter and more disappointment. And then God. And more prayer. And come forwards not in a nice small safe little side tent full of strangers, but press forwards past everyone you've ever met. And watch as the woman next to you is clearly filled with the Holy Spirit and taking three pray-ers to contain her and keep her safe, and feel that you've been missed out again - and another stranger grabbing an arm and saying "Stay."

And staying. And standing. And feeling very silly, standing and standing, with someone coming back every wee while and repeating "Stay." And then a woman with a big long love letter from the Lord, reaching out through the clutter and the contempt and getting to the heart of things, speaking into my fears and my frustrations and not just breaking down the barriers but removing them completely. And then surrender, and the hand of God on my shoulder, pushing me down so gently. And I stay down, and I know that this, this is what it is all about. Not anything I can do - I can at this point do absolutely nothing. But about finally accepting there is nothing I can do.That all my own efforts count for nothing, and that it is all God. And I go to get up, and the hand on my shoulder tells me to Stay Down. And so I rest for a while, and then stumble back to my feet. And write down what I can remember, and wobble back to the tent with a friend who has waited. And I haven't had the words to explain it until now, but maybe she's reading and it'll make a little more sense. Or not.

I could leave it there. On top of the world, at the foot of the cross, and pretend it's all been bliss and simplicity ever since. But in the interests of honestly, let me say I'm a failure. I'm rubbish at this. Thankfully, God is not. And I don't have to wait until Sunday, and say the right words (which is just as well, because they've changed again and I stumble over them), and I can trip over a hundred times in an hour and need forgiveness another hundred times. And that's ok. Well, obviously it'd be better if I didn't stumble and fall at all, but I'm still working on that. Some days go better than others.

Tonight I watched my friend's son stand up and make a public declaration. I watched him enter the Baptismal pool, I watched the Vicar and the Bishop Baptise him, and then I watched him drench the Curate as he climbed out of the pool. Because God has a sense of humour too, and just loves to cut through the solemnity at times. And I remembered my Confirmation, and I remembered my Baptism, and I remembered all the pushing and the running around and the dry times. And I remembered that peaceful, quiet surrender, in the midst of the rumble and thunder of a rattling good Praise and Worship session,and I know that it was all planned out that way.

And so when the Bishop invited the congregation to reaffirm their own Baptismal vows I dipped my fingers into the water and asked Jesus once again to rule my hands, my heart, my head. And I know I'm not perfect, and I know I rely on His Grace and Mercy every moment of every day. But tonight I'm just thankful for His love. And praying that all those who stood up for Him this evening will remain under His protection all the days of their lives.

I believe and trust in Him.
Tia

Emmanuel

The glory and the majesty, the mighty come to worship

The humble, the lowly, setting aside their work to come and find Him. The son of God, born not in a palace but in the squalor of a stable
Emmanuel, God With Us
God With us, in the midst of us, at the centre of all this daily life
A baby no more, still at the centre of it all.
Tia

A different kind of normal

Nikki over at Blogs for a Cause is trying to raise money for Sarah's Covenant Homes. She interviewed me a few days ago, and here's her post, take a look. We can't all do what Sarah does, but if lots of people helped a little, what difference would that make?

Excuse my lack of wordiness here; I haven't left the house since Tuesday (Mog's been a little unwell), and apparently, when I don't leave the house, I lose all desire to communicate with the outside world.
Tia

Obedience

Slippery as her nickname, Little Fish squirms around just outside my grasp. I take hold, and we make contact, and she realises that I really do mean it. And she submits, and eats her breakfast without complaining, or gets her clothes on without screaming, or settles for the night without calling me back into her room a dozen times. And it's great, and I think she's finally learning that I might just actually be in charge, at least some of the time, and I start to relax a little.

And then I notice that she's still slipping away. That I ask her to eat her breakfast at the table, and she agrees, and doesn't scream, but flips her legs around so she's sitting sideways on to the table, leaving a lovely Marmite or Cheerio trail across the floor and her clean clothes. She gets her clothes on, but her pyjamas are stuffed down the side of the bench and left in a puddle of stagnant water from the shower. She settles for the night, but only if I leave the door open.

Compromise? Or control? She's still in control, still deciding how much she'll allow me to have things my way. I don't mind compromise; I'm all for negotiation and thinking problems through and mutual decisions. But I'm not sure I'm supposed to be the puppet on her strings.

So I take hold of her, and draw her in close, and she squirms one little bit of her out from my arms, and suddenly the whole of her is somewhere else entirely, and I'm left holding her shed skin. And there's a still small voice at my shoulder saying "Sound familiar? Don't you do this to Me all the time? The appearance of obedience, a semblance of submission, and I go my own way again even as I say "Yes" to whatever it is I ought to be doing. But, like Little Fish, I like to think I'm doing the right thing; I'm doing most of it, aren't I? I can do it and do that other thing at the same time, can't I?

Maybe I can. But can I do it and expect to teach my daughter what it means to be wholehearted at the same time? I'm not so sure about that.

Tia

Without God, the best we can do is the best we can do.

Been turning this sentence over and over since I heard it at New Wine.

The best I can do is never ever going to be good enough.

It's not good enough for Little Fish; she wants more of me, she wants me so close that she dribbles on my feet all night when we camp, she wants me so glued fast to her side that I can scarcely get out of her bedroom at home and close the door before a desperate wail calls me back in to tweak a strap or tug a sleeve or inch the duvet up her shoulders.

It's not good enough for Mog, who needs someone to interpret for her all day long, to push her glasses back up her nose and empty her stomach of bubbles and massage away the neck spasms and uncurl her toes and pick her nose and smile at her and stroke her cheek and tickle up her dimple.

It's not good enough for the people who phone, whether friends or loft insulation salesmen (really guys, do your research - ground floor flat!), who get half of me whilst the other half wrestles to silence a small child, or else locks herself away from the screaming child and then wonders what the child is doing out of earshot.

It's not good enough to win me any kind of place in Heaven, if getting there is going to rely on my own efforts, on me achieving any kind of perfection all by myself.

It's not all bad. The best I can do is sometimes quite good really. I can bake a chocolate brownie cheesecake whilst holding a small child and mopping a floor and listening to the radio and holding half a conversation with someone in the next room and keeping an ear out for the school bus and testing the fish tank and doing the washing up and writing a shopping list, and I only end up testing the dishwater for ammonia and sprinkling fish pellets in the brownie mix occasionally. At my very very best, I can even sometimes manage to get all three of us up, dressed, hair brushed and out of the door on time despite our carer not having turned up. And generally only one out of the three of us will be wearing odd socks or strangely stained clothing, and as long as that one is me and not the girls I'll take that as job done.

But it's still not ever going to be quite good enough.

Last term, after a year of trying to sort school transport, I stopped trying. I sat down, wrote a long letter to anyone I thought might be even vaguely interested, telling them exactly why I couldn't do the impossible. And after a year of trying to make it work, fretting over it not working, putting one child's life at risk in order to get the other child to school, we now have a solution. A solution which was out forwards within days of me stopping trying.

And I'm thinking about those days when the alarm doesn't go off, when the carer doesn't show up and the bus is late, when book bags have done a runner and the girls have both woken up with birdsnest hair, when uniforms are in the washing machine when they should have been hung out the night before, and when there's no pen to sign the permission slip and no change in my purse to pay the optional charge. And I wonder, I wonder, what would happen if, instead of me taking a deep breath and leaping into the fray shouting orders and trying to do sixteen things at once, I instead sat down quietly and texted God "I can't do this - help!" And then actually waited for a reply.

Trust in the LORD with all your heart and lean not on your own understanding. Prov 3.5

For I can do everything through Christ, who gives me strength. Phil 4.13

Tia

The Illusion of Depth.

Living with children with profound disabilities can provide a short cut past the social chit chat sometimes. Forget the weather (easy to do when you haven't been outside all week), forget politics (except how they might impact on various policies and allowances), and forget the regular child stress about my child possibly not having very many friends or maybe getting a cold or whether or not to allow your teenager to pierce her ears; we're concentrating on whether this child will survive their latest illness, that child will ever be able to sit upright again, or if the other child should have surgery which might help but might kill them.

It cuts through a lot of the clutter.

So we meet friends, online or in person, for cake or for a week away. And there are smiles and laughs and tears and we swap fears and we talk about stuff which terrifies a large proportion of the population of this country. And we know that death is not a distant stranger, and somehow in talking about it, by acknowledging the reality that we probably will outlive our children, we make that truth something we can live with. And then we do talk about the general life clutter too; we dip deep and we float about in the shallows of conversation, and we make another date, and we do it all over again.

And it's refreshing, and it is so good to be with people who understand.

And it serves to hide so much.


Did you know, for example, that I have been blaming myself for my daughter's death for the last three years? And before you rush in to say I mustn't blame myself, that there are in fact good and solid reasons why I do bear some responsibility. Did you know that I've been totally unable to forgive myself for that? And unable therefore to accept forgiveness from anyone else?

Did you know that I have been unable to praise God freely, with my heart as well as my head, stumbling about over my prayers (well actually, you might know that if you've ever heard me), that I have been unable to trust God with the lives of my other girls, despite blaming not Him but myself for Goldie's accident?

Did you know that I have been weighed down, browbeaten, by my guilt and shame over things both recent and long past? And that through all this, I have been calling out, apparently unheard?

If you did know all that, congratulations, because I didn't know it all myself.

I have just been on holiday with friends, with church, and with God Himself. Which is fairly awesome really. And God, and God's people, met with me, and didn't hate me for the things I have done. And I am forgiven, and I am loved, and this is a new day that the Lord has made. And that was just the beginning.

I think things just got real.



Tia

It's not all about the afterlife

I was having a conversation with a friend a while back, and it got derailed halfway through, as all too often happens when there are children in the room. An interruption, a side track, and then twenty three other bits of conversational thread get picked up, and somehow the bigger point got left behind.

We were talking about faith, about beliefs, about being a Christian.

I'm not sure what I understand about Heaven, except that I'm pretty sure I don't understand. The thought of meeting up with friends, children, loved ones; the idea that death isn't final, that is a comfort. But it's not the hope of Heaven which gets me through the day. It's chocolate. Heaven's great; I quite fancy the idea of a new body myself if it works out that way, although I can't really picture Mog walking and talking, and I'm not at all sure she needs to be able to walk and talk in order to be any more of a person than the person she is right now. So I'm happy to sit back and not worry too much about trying to understand how this whole afterlife thing might work.

And I'm happy to do that, because for me, the whole faith thing isn't so much about what happens next. It's about what is happening now. It's about never ever being alone. It's about a constant dialogue - in which my voice is all too often drowning out the other half of the conversation - but the replies are there, when I'm ready to listen.

Faith is not about being a saint, and it's not about being perfect or even good enough, and it's not about some kind of cosmic balance. It gets a bit messy when I mix it with trust; do I trust God with my girls' futures? Absolutely. But do I trust that His will and my will are going to be perfectly meshed in this matter? Not right now. Do I trust Him to keep the girls safe overnight? Definitely - but I'll keep the monitors and the breathing machines please. Just in case.

And yet, time after time I've been woken just in time, even without them. "Something" woke me and made me go down and check on a fosling in the early hours of the morning, a fosling I never disturbed once he was asleep as I knew he'd wake and need entertaining. I walked in; he was having a totally silent seizure. "Something" prodded me to go in and check on Goldie one morning on my way downstairs, when my usual habit at the time was to bypass her bedroom, make a cup of coffee and her breakfast, and come back upstairs with it. And as I walked into her room I watched her, pinned on her back by a medieval torture device sleep system, vomit totally silently and whilst totally unable to turn onto her side.

As I write the above sentence, I'm sitting here wondering why that same God Prompt did not intervene to save Goldie from a scalding soak, seven years later. And I'm reminded that there were many many different factors involved in her death, many hands all playing their own tiny part. If the bath had been correctly fitted, she would not have died. If the bath had left the factory with the thermostat set to cold, she would not have died. If the carers had had a thermometer, she would not have died. If Goldie had moved to a Care Home not Supported Living, she would not have died. If I had said she could stay with me, she would not have died. If we'd had her home for that bank holiday weekend, if there had been more training, more time,if, if if...

So many different factors - and an apparently blindingly clear hindsight. We all have free will, we can all choose to do the wrong thing, and we can all make choices which have a negative impact on others. Give me a God who intervenes to prevent us making the bad choices, and ultimately God's people become robots, slaves, with no freedom and therefore no ability to make the right choice either. If I accept that we should all be free to make our own choices, then I have to be willing to accept that some people, probably not the right people, will face the consequences of those decisions.

Another derailed conversation, and I can't blame the girls this time as they're both in bed.

Back to Faith. Faith is remembering that the same God who woke me to clear Goldie's airway seven years earlier was right there with us as the rest of her body packed up. Faith is knowing that He was with her in her suffering and with me in my mourning. Faith is choosing to believe that God probably does have Mog's future in His Hands, even if I can't see it myself. Faith is knowing that God loves my girls so much more, and more perfectly, than I ever can or will. Faith is knowing, without understanding how or why, that Goldie is and was and will be safely held. Faith is knowing that, no matter what happens, no matter how it happens or when or why or where, that neither I nor the girls will ever be facing it alone.

Faith is believing that no matter how horrible I've been, there's no way in which I can fail which will ever cause God to stop loving me. Faith is believing, without necessarily rationally understanding, that it will all be alright in the end. And that it is all alright right now, even when it isn't. Faith is being sure of what we hope for, and certain of what we do not see. And faith is what gets me through the day.

I'm pretty sure what's more or less what I wanted to say to my friend.
Tia

Woeful Wednesday

A woeful start when Little Fish woke ridiculously early, and tried to place the blame on Monty, the class monkey, who had come home with her last night. A wobblily woeful breakfast and plod to school, with a thankfully lightning switch to happiness on spotting classmates and having time to chase them around the playground.

A spot of woe is me back at home with confirmation that the hospice will not be increasing our respite provision, despite recognising the increased need. And the rueful realisation that my freehand embroidery skills are sadly as lacking as the ivories on my piano keys. I would not make a very good Austen herione. Then again, I suspect being a single parent would rule me out of her cast list anyway.

A woeful shoal of fish, sixty of them now in a sixty litre tank - is there really no one out there who wants some baby mollies? Free. Breed them yourself, feed them to your loaches, I don't care...

Suddenly the day is mostly over, and time to collect Little Fish. She runs her chair over my foot and into my ankle seven times on the walk home. I start with a gentle "watch where you're going, sweetie", moving on up through "OW!" and "please focus on what you're doing" to my final "WILL you watch what you are doing that REALLY HURTS and YOU HAVE TO STOP IT NOW" delivered at top volume right at the corner of the road; I turn away from Little Fish and limp stomp briskly ahead of her, promptly bumping into our Vicar. Bang go this week's good Christian parent points then.

We cross the road, we cuddle, we watch out for Grolly who has taken to waiting for us in a driveway and joining us for the last part of our walk home. She is not there, and a woeful Little Fish has to be persuaded to walk on without her before Mog's bus beats us home.

We have a nice gently giggly couple of hours before we do the bedtime thing, and we all feel all the better for it. Mog continues to giggle for the next few hours, until her own bedtime arrives; on landing on her bed she promptly locks into a full body spasm, and lies, rigid and screaming, fingers frantically hunting for something to hold onto and scratch, for the next hour and a half. Our sitter segues into washerwoman, hander-out-of-medications and cleaner, whilst I transform myself from Woman On Her Way to Housegroup into Stay at Home Mum. I'm not sure where that leaves me in the whole Christian Parent thing.

Peace eventually returns; diazepam and painkillers eventually force Mog's body to relax and she falls into an exhausted sleep. The CPAP is now fighting losing battle with the diazepam's ability to relax everything; it's a quieter snore I suppose than before, but I wouldn't suggest it's completely better. We increase the settings tomorrow; I hope that helps.

I've just turned Little Fish so hopefully that's her for the night. I've just repositioned Mog for the fourth time and she's still managing to obstruct, so now I have the choice to either sit and hold her jaw for the next we while or roll her onto the hip which seems to be the cause of much of her spasm and hope she's in a deep enough sleep that she won't notice. Something tells me it could be a long night.

Tia