Monday, 31 March 2014

Day is Done.

A little less than thirty years ago, I stood in front of my Guide Captain, blue air stewardess hat pushing my NHS glasses askew, bottle green necker fighting its way out of a woven leather woggle, shiny new belt pulling my itchy skirt in at the waist. And I promised that I would do my duty to God, to serve my queen and my country, and to keep the Guide Laws. I saluted the flag, I saluted my sister Guides, who were all holding lit candles as they welcomed me in, and I joined a worldwide movement of women. 

It was a powerful moment, and it was a promise I held dear. 

At 15, I became a Baden-Powell Guide, having worked quite ridiculously hard at tasks such as exploring the history of Guiding, learning about the history of the Commonwealth, doing my duty to God by serving as junior helper to Scramblers (the three year olds at church) throughout my time as a Guide and beyond, camping, crafting, laundering, attending junior councils and being involved in consultations on new uniforms, etcetera and so on. 

At 15, I stayed with our church Guide Company, and became a Young Leader, remaking my promise with pride.  At 17 and a half, I became an assistant Guider, again remaking my promise, and at 19, I was running my own Guide Company in Surrey. 

We'll take a five year break from Guiding; my services were not required in my new job, and so I became an assistant Scouter for a while instead, having enjoyed being a Venture Scout myself age 15. 

At 25, I came back to Abingdon, and stepped back in as an Assistant Guider once again, supporting Goldie at times, but continuing once she had left, spending Monday nights and summer weeks leading and encouraging girls to see what they could do, free from the distractions of boys and the pressures of the outside world. 

And I have loved showing girls they can make fire, cook with it, look after themselves, make decision, teach others. I have loved watching girls climb walls, bake bread without an oven, turn three odd props into plays about current issues. I have watched girls grow from shy Brownies, scared of the bigger girls, into confident teenagers, capable of leading the younger girls. I have helped girls to write prayers and pitch tents, read maps and send messages in semaphore, raise money for others and apply for international trips themselves. I've watched girls do things they never thought they'd manage, I've seen bin bags become haute couture, and marshmallows become the epitome of haute cuisine. 

I've watched sophisticated teenagers grow down and lose their self consciousness, go from girls who cannot face the world without mascara, to girls cheerfully leaping into the very centre of the deepest muddy puddle, secure in the knowledge that Guide camp is a place where they will not be judged and condemned for having fun. 

It has been good. Very good. And I have helped a generation of girls prepare to make their own Promise, changed a few years ago so the girls promise to "Love My God" rather than "Do my duty to God," and I have been confident that this is a meaningful change, and one appropriate for today's girls. I have happily renewed my own promise at Thinking Day services and at Guides' Owns, knowing that I can still mean every word, and hoping that I can make it meaningful to the girls. 

I can't do that any more. The new Guide Promise, designed to be more inclusive, now reads:

I promise that I will do my best:
To be true to myself and develop my beliefs,
To serve the Queen and my community,
To help other people
To keep the (Brownie) Guide Law.

Perhaps it isn't a huge change. I suspect serving the community is something which girls will understand more easily than serving ones' country. And for girls who may not be British Citizens, there's certainly less conflict of interest. 

I understand the reasons why Girl Guiding wanted to take God out of the promise too. But I can't teach girls to be true to themselves. Not when I believe Christianity is about denying self in order to be true to God. My Guide company, the one I attended as a Guide, the one where I was a young leader, and then for 15 years an assistant leader, is a church sponsored group. I can't pretend that this new promise has anything to do with Christianity. And I suspect that's the point. Freedom of choice, encouraging girls to make their own decisions, not wishing to exclude anyone, girl or woman, who feels unable to make a promise to God. 

But it isn't a promise I can get behind. Over the years, I've seen our inclusion within the church dwindle until we now have just one annual service where we are welcomed. It's a big change from 30 years ago, when we marched to the front to be welcomed to the services several times a year. That's not necessarily a bad thing, but for a number of our girls and their families, we are the one point at which they will ever connect with a church. Looser links mean looser connections. And now a Promise which invites girls merely to think about their beliefs, rather than directing them to our Heavenly Father, reinforces that separation. 

I can't pretend that being a Guider is doing God's work for the youth of today. Which is not to say it is a bad thing to be doing. But as Imogen is ill, and I am tired, I no longer have the patience to be gentle with the girls who, full of youth and the joys of Spring, choose enthusiastic exuberance over listening to what they need to be doing. I don't have the energy to listen to good-natured girls grumbling about trivial inconveniences when I have left my daughter struggling to breathe in order to spend time with them. And I don't have the thinking power to find a dozen five minute activities when the planned activity turns out to be shorter than expected, to think on my feet when no one has brought blu-tac and the string is too short and all the pioneering poles have bent. 

And so, tonight was my last night as a Guider. I'm coming home - I am home - and I will not now be committed to any regular evening activity. 

It's not a sudden decision, and it's not solely about the new Promise. But there it is. I am no longer a Guider - something I didn't think I'd be saying for another twenty years or so.  

I'm not entirely sure what I am now. Not a foster carer, not a Guide Leader, just a Mum. Let's hope I can be the Mum the girls need, for as long as they need me to be the just Mum. 

Day is done, 
Gone the sun,
From the sea,
From the hills,
From the sky. 
All is well, 
Safely rest,
God is nigh. 

Goodnight, Guides

Saturday, 29 March 2014


I'm not quite sure how it happened, but here she is, nine! 

A McDonalds and Lego party is what she requested, and a McDonalds and Lego party is what she got. Drive through with Grannie and Grandad, since Imi decided the excitement was all a little much, followed by chaos and mayhem and wildly overexcited and hyped up shrill girls rampaging around the house. Fun and games and balloons all round. 


Sunday, 23 March 2014

It isn't all picnics and popcorn.

Life is rich. God is good. I find myself, over the past few months with more opportunity than ever before to leave the house and temporarily walk away from all the worries. And walking, alone or with friends, has been the perfect way to spend time in God's company, appreciating his creation, recognising his awesome power and majesty. 

Standing on the top of a hill, I can see how big this world is, how much bigger the creator has to be, and just how tiny I am. Leaning against a tree in deep woods, I can marvel at the intricacies in the bark, lose myself in a fractal fern, wonder at the amazing diversity even amongst the grubs and mini beasts. 

Seeing how small I am, I can see how minuscule my worries and fears are, in comparison to the rest of this world. And yet at the same time, I can know more thoroughly than ever that God hears me, and is so much better able to carry those concerns than I am. 

It's an exercise in trust, and it is soul refreshing, just as much as it is at times physically exhausting and somewhat sweaty. Walking away from my car, I am increasing the time it would take to get back home with every step I take. That's significant. When Miss Mog (who I think needs her own name back now; I can't pretend this is an anonymous blog any more), Imogen, our beautiful and precious Imi started school nine years ago, I needed to be on call whenever she was there. For nine years, I needed to be no more than thirty minutes away, in order that I could give second and third line rescue medications, and beat the ambulance if I had to. 

And now, Imogen is no longer well enough to attend school. And I am both more tied to home than ever before, and more free to travel further when I do go out. Tthree days a week, nurses take over Imi's care; in pairs they come, and I go out. 

She really isn't well, this most precious child. For two hours last night, and four or more on Friday, I stood over her bed, pouring more medications into her stomach, her cheek, her nebuliser chamber, adjusting her oxygen therapy, running down the battery on her suction pump, calling hospice and community services, and willing her to just slow down and take a few good deep breaths. Horribly aware that this takes its toll on her. That four hours of not being able to catch her breath must be utterly, overwhelmingly exhausting for her - it is tiring enough for me, and I only have to watch. Giving more medication, or knowing I have given all the medication I can, and having to just watch and wait and hope that it takes effect. Knowing each time that this might be the time when it is all too much effort for her, and that this might be the time when she just decides she's had enough. 

We've looked at alternatives. We've had the big discussions. We could, in theory, open a hole in her neck, and attach her to a ventilator, and take these breathing problems away. Except that the breathing issues wouldn't necessarily go away, the ventilator would bring its own complications, and the one certain thing which would disappear forever would be her voice. And Imogen loves to sing. I think it wouldn't be unfair to say Imogen lives to sing. She can't talk, but she can sing in pitch. Before she understood language, she understood harmonies and was soothed by them. Rippling consecutive sixths, variations on the harmonic series, deep deep hums and piercing whistles; she loved them as a baby and loves them still. 

It's not been an easy decision. We have friends with tracheostomies, and we've seen the improvement in life it has given them. TLP (who also deserves her own name now, I think. Amana then) uses a ventilator each and every night, in order to compensate for her brain's lack of respiratory drive when sleeping. 

But, different children, different issues, different decisions. And so for Imi, and with Imi, who has an interest in these kinds of decisions about her, we have decided that we will do all we can to support her where she is, to make her life as rich and deep and meaningful as it can be, and to give her as much help as we can, whenever things get difficult for her. But we have set her ceiling of care at a point where she has to make the effort to breathe for herself - and at a point where she has the option to stop doing so if she needs to.

And the trouble with drawing a line, as a wise friend said, is that there comes a time when you cross it. And whilst we know what that means for Imogen, and will rejoice for her, we also know what that means for those of us who are left behind, and just how impossibly hard that's going to be for us all. 

The temptation to do anything at all to postpone that hour, to delay what we know is going to come at some point, to take charge and to refuse to allow it to happen is overwhelming. I want to be in charge, I want the driving seat, I want to force a way through and to keep on going. But "Not by might, nor by power, but by my spirit" says The Lord Almighty, and that's the verse he gave me for Imi on the morning of the biggest discussions, and it's the verse which is driving these decisions. 

It isn't up to me. There's nothing I can do. Even if we went for full intervention, throwing everything physically, medically and surgically at Imi, even then whilst we might delay her dying, we would do nothing to prolong her life. I can't add a single day or hour to those ordained for her. Not by my might, nor in my own power. I have to leave it for her to settle with God in her own way. 

And so my world shrinks, as I am home with Imogen when times are likely to be worst for her (normally just as the nurses are leaving), and my comfort zone when she is with her regular sitters shrinks until I am no more than a few minutes away, with good phone signal, at all times. 

But at the same time, my world expands, as I am more free than ever before during those times when she is in the care of our lovely nurses. 

I need to leave the house (unless I need to sleep); three adults all with ideas about how things should be done is never easy, and is a waste of resources. And I need to leave the house, because it is getting harder to predict when it will be ok to leave the house with Imogen, and when she just needs to be in bed. 

And I need to leave the house, because I need to be able to get back outside, where the horizon is vast and my own self is so small. I want to say I need to leave the house in order to centre myself properly, but the truth is, I need to leave in order that I can get myself properly back off-centre. It isn't about me, it's about putting God back in the centre and fitting myself in where I am supposed to be as precious daughter and imperfect reflection. 

I started writing this this morning, when the house was silent and still. And then had to stop, and let the day begin. I gave Imogen her breakfast, and she slept. Sorted her nebuliser, and she slept through that too. Changed her, hefted her into her wheelchair, tweaked her position, threw a hat over her seriously wild hair and a lovequilt over her twisted body, and still she slept. We walked to church, where the seating hat been sorted so her perfect spot was perfectly aligned, and she slept on. The band was loud, the sermon like drops of rain to a parched soul (and followed on so beautifully from what is started to write here), the worship was beautiful, and she slept on. But quiet sleep with only a few little twitches. Restful sleep, with numbers on her monitors perfect and reassuring. Gentle sleep,with unlaboured breaths and a delicate, untroubled face. 

A gift, after two stormy nights. And the reassurance I needed in order to be able to drop her off (awake, finally) at respite, where, through the CPAP she hadn't managed without all day, and over the buzz of the nebuliser she decided to demand as we walked through the door, she smiled and created a list of demands for the staff. For the next two days, she wants to use the jacuzzi, have lots of stretches, listen to her choice of music uninterrupted by her little sister, and generally relax and be pampered. I can live with that. 

She isn't, I don't think, at the end of her life just yet. But she's definitely more fragile than she was a year ago. The decisions we've made have not, in fact, changed very much at all. We have reverted to the plan we made for Imi several years ago, when it became apparent that plans needed to be made. And, typically, having signed off on the paperwork which enabled us to opt out of hospital treatments and surgeries, she went on to have one of the best years of her life. Could that be the case again? Maybe. Or, any one of these breathing episodes could be the one where she just gets too tired and stops. 

Imogen has made it very clear she isn't interested in surgery. She wants to breathe, but she wants to breathe for herself. She has an active faith, she walks with God already, and she knows that one day she will be running to meet him with a new body and legs that really work. She will have a lot of friends waiting for her there, and a sister who might just be wondered what took her so long. 

I can't control this. And there's peace in remembering that. All I can do us all I have to do is trust in God and Imi to make it right between them. And in the meantime, we work together to give her a life that is rich and deep and wide, even if it may not be terribly long. Of course, it could be very long indeed. I have no idea. But a life that is rich and deep and wide is going to be good, whether it is months or years or for however long it will be. 

And in the meantime, I will walk. With God, with friends, with whoever wants to come alongside. And I will make popcorn and brownies when I am at home, because life is good, and these are some of the things which make it so. 


Wednesday, 19 March 2014

Sweet potato and coconut soup and another sunny ramble.

Pinching a friend's photo as it is the only one I have. 

A bit more virtuous than the previous recipe, but still completely delicious, surprisingly healthy, and if you eat it all day the popcorn probably isn't as awful as it might be for those of us attempting to shrink a bit. 

Bake 4 sweet potatoes. 
Meanwhile, dice and fry an onion, 2 ribs of celery, one sweet pepper, and a good shake of ancient garam masala powder from the back of the pantry. 

Add stock, then add potatoes, and top up with stock or water until potatoes are covered. Blitz with a hand blender. 

Add a can of coconut milk (I used half fat stuff which worked beautifully), taste, choke on strings from the potato skin, and blend in Mog's super whizzy beast blender. Or don't be like me, and do peel the potatoes before throwing them in the pot. 

Bring back to the boil, then allow to simmer for a moment or two whilst you utterly fail to find the thermos flask. Decant into two smaller flasks, then share with a friend whilst enjoying a jolly good walk around Besselsleigh. 

Definitely best shared and slurped outdoors. About 3/4 of the way around here, ideally, after an unfortunate but not unpleasant detour which handily pushed our arrival at the picnic field back to lunch time.

Sticky salted caramel popcorn

No photos; it was too good. But posting the recipe before I lose it forever. 

Dump a cup of sugar and 1/4 cup water into a saucepan, heat. Stir until the sugar is melted, then leave to boil until syrup becomes a nice toffee colour. 

Take off heat. Dump in a big lump of butter (4oz ish?), most of a small tub of single cream (4 floz ish?), and a teaspoon of decent salt. Poss less if butter salted. Stir really fast and be careful; the syrup will boil up against the sides of the pan when you add the butter and cream. Allow to cool slightly. 

Whilst syrup is boiling, air pop a load of popcorn. Tell yourself this makes what you are about to do much more healthy. 

Tip a load of popcorn into a bowl, drizzle sauce over the top generously, and stir. Win massive Mummy points (from everyone except the paediatrician and dentist) by calling your daughter in to share the treat, grab two spoons, and dig in. 

Be exceptionally generous to your daughter by allowing her to lick the bowl. Later, finish the remainder of the sauce yourself whilst watching an old episode of Two Fat Ladies on YouTube, and pedalling frantically on the exercise bike. 

But if you're rather more restrained, it would make a wicked sauce for ice cream. I'm thinking it ought to be possible to ripple a layer of it through a thickish chocolate brownie batter too. 


Sunday, 16 March 2014

Out came the sunshine, and dried up all the rain

And Tia and the girls went walking once again. 

I do love Mog's new chair. The tray underneath holds everything, the chair itself is stable and solid. And it is pink, which makes Mog very happy. But oh, my, is it heavy! 

Six miles we walked yesterday, through town and Abbey Meadows over to the lock and weir, and then back through Box Hill and finally home via Budgens, having totally forgotten to stop in town for any of the things we'd originally left home for. Six miles of pushing a very heavy shopping trolley equivalent, with its own strong feelings about the inadvisability of turning corners. Six miles, I say again, having carefully logged the route on my phone then totally failed to manage to work out how to show it off. Ow my shoulders! 

Six miles of tLP riding her bike, and even occasionally using manual effort rather than relying on battery power. A picnic on the way home, and short meetings with at least half tLP's school friends and staff. 

And six miles, mostly in the sun, hopefully going some small way to top up both girls' seriously deficient Vitamin D levels. A very healing kind of a day, if you ignore my shoulders, which are still protesting tonight. 

And then, today, another gently beautiful day. Happy Families out in the sunshine, Benjamin posing (and stalking the nesting birds), more red kites wheeling overhead, and just the right amount of gentle sun to bring a healthy glow to Mog's cheeks. Didn't help my shoulders though; did I mention they're a little achey? 


Tuesday, 11 March 2014

Marrowbone Soup

One of those accidental recipes I need to archive here because it was too delicious not to attempt to repeat. 

Soak a good handful of soup mix (assorted lentils, barley, marrow fat peas, etc.) overnight. 

In the morning, roast two marrow bones (beef) very hot for around 15 minutes in a large casserole dish. 

Meanwhile, chop 4 elderly carrots, two celery stalks, 1.5 marginally dodgy red onions, one very bitter green pepper, and one much sweeter red pepper. 

Remove casserole dish from oven, scrape marrow off bones, drop diced veg into dish and fry in marrow fat. Yum. 

Add a kettleful of hot water and a good slug of bouillon powder. Or add your own best stock, if you're that way inclined. 

Stir about a bit and simmer gently for half an hour or so whilst getting your daughter ready for school. Add in the remainder of yesterday's vegetable soup (puréed carrot, swede, celery and onion). If no leftover soup, either skip this step completely or else remove a handful of the cooked veg, blitz them with a hand blender, and put them back in. 

As the bus reverses up the drive, add the soaked (and rinsed) soup mix, then remember you need to be somewhere else, so bring up to the boil, then cover, switch off, hunt for your keys and fly out of the door. 

Return home four hours later, taste, dribble because it smells so good, turn the heat back on and simmer gently until the lentils have vanished and the marrowfat peas have finally softened. 

Fish out the bones and scrape off the last of the good stuff. Sop up the frothy bits with kitchen roll and bin it. Then ladle into a bowl, butter some fresh crusty bread, dunk, and decide this might just be how heaven taste. Realise your grandmother was right when she complained there was no flavour in vegetable soups without a bit of meaty bone stock. 

Repeat bowl and bread until far too full. Selflessly blend remainder to make rather spectacular meal for Mog, reserving just one small bowlful for lunch tomorrow. Mmm ymmmm. 

Monday, 10 March 2014

The quieter road.

More plodging about today; scarcely another soul abroad, just the red kites, their prey, and the occasional random muddy dog.  

I wonder if red kites soar like eagles, or if each bird has a different way of flying? 

Steep runs of steps, flattened out here, but definitely felt whilst walking. 

Spring definitely breaking through; clearings carpeted with daffodils and the hints of other bulbs to come. 

Blossoms, birdsong, and the silence which comes when everyone else has read the weather forecast and checked out the clouds, and is choosing to spend lunchtime sitting in the car park watching the skies and listening to the radio. 
Leaving me, temporary queen of all I can see, sole inhabitant of these ancient woods. Lovely. 

Marching, walking, stumbling, panting, getting up a good pace and then swapping speed for introspection and admiration of the ever present moss. 

Mud on my boots, wind in my hair, and thoughts shuffling themselves into some kind of proper order.

God is good. Always. Some days, that's all there is to hold onto. Thankfully, that's always enough. 


Thursday, 6 March 2014

Five and a half thousand years ago

A group of people moved stones, dug earth, built and dragged and created a tomb for fourteen bodies. 

And then, about three thousand years later, another group of people dug earth, built up walls, and created a hill fort. 
At some point, a white horse was painted on the side of the hill. 

People moved away. Different people moved in. Vikings invaded. And Romans. And Frenchmen. Not necessarily in that order. Christianity spread. Legends grew.     

At the foot of White Horse Hill, a small mound has two bare spots. As St. George killed the last dragon in England, the dragon flew over this hill, and shed two drops of blood. Nothing has ever grown there since. 

And the Neolithic burial mound gained a new notoriety as Wayland's Smithy. Perhaps on wilder nights, his hammer can be heard across the Downs, showing travellers' horses and helping them along the way? 

History, legend, the mythology of our nation. And today we walked along just a tiny stretch of one of the oldest roads in England. A friend, her dogs, a handful of lost sheep. And the echoes of ancient times. It's all good. 



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