Updated: 4 min 25 sec ago
Fairytale Farm sounded like it might be a good spot for a visit, when friends came to stay over the holidays. http://www.fairytalefarm.co.uk/
Knowing that it was designed to be accessible, we thought we might manage a trip with four girls and two grown ups without too much of a struggle.
And we did! Smaller than its website would suggest, it is clearly still a work in progress. A nicely accessible cafe (no changing bench in the loo, but some good sized beanbags in the playroom did anyone wanting a stretch), a handily placed double socket so we could charge Imi's suction and Nippy, decent sandwiches for most of us, and friendly staff.
The accessible playground was a little disappointing; simple things like gravel making pushing tricky, and a step for small children blocking any hope of wheelchair access to a nice rubber duck racetrack - having a moveable step or else steps to half the racetrack and not the other might have been more useful for our girls. They s joyed watching two mad mothers pump water furiously down the gutter racetracks to push the ducks along though.
A nice wheelchair swing we ran out of time for, and a nest swing too, good fun I suspect. Lovely castle for anyone who can run and climb stairs.
We did enjoy the sensory garden - very feely noisy grasses as well as always lovely lavender and other herbs.
At the bottom of the playground, the animals. Ridiculously friendly goats and alpacas, a handful of miniature ponies and pigs, and snuggles with a baby rabbit. Lovely. A long walk back uphill though!
Would we go again? Yes, definitely. It was a nice quietish place to spend a few hours. Not hugely expensive, and not pricey food. The dressing up box was a big hit. Sadly the gongs and drums in the hands of one particularly enthusiastic fellow visitor drove our twitcher pair out of the playroom, but I think we all had a good time, and we will keep it on our list of possibles. I won't be buying an annual pass just yet, though.
"So, is it like, cos it's a Bank Holiday that you're going to church?" asked our carer this morning.
"It's kind of an important day for a Christian," I replied. Possibly not the clearest or most tactful of replies, but it hadn't occurred to me that someone who has grown up here, attended primary and secondary schools here, and probably even been to the occasional Christening or Wedding, might not make a connection between Good Friday and church. Hot Cross Buns for breakfast not enough of a clue.
So for anyone else not sure why some of us might be going to church whilst you are enjoying a day off (or being frustrated by closed shops and banks), here's a quick reminder.
Today's the day we call Good Friday. The day when Jesus, Son of God and God made man allowed himself to be nailed to a cross, and chose to stay there until he died. Betrayed by one of his closest followers the night before (proving that, right from the start, his followers aren't always the nicest of people), he chose not to defend himself in court, nor to step down from the cross, but to hang in shame and pain until the very end.
On the face of it, possibly not a very Good Friday for God or man.
Or it wouldn't be, if it ended there. But at the moment Jesus died, the separation between God and man died too, the temple curtain ripped from top to bottom, and one perfect sacrifice replaced unending pigeons and bulls and constant rivers of animal blood. Grace and mercy and forgiveness replaced the Law, a law which no man had ever been able to keep since it was written back on a mountain in the wilderness.
And it doesn't even end there, with a new covenant. But in just a couple of days, we get to celebrate the fact that not even death can have victory over God. And, just as Jesus himself rose from the grave, we know that death itself is not the end, but the beginning. Something all the more precious for those of us with friends and family who have gone on before us.
The celebration is ahead of us right now though. For today we come as a church to the foot of the cross, joining in thought with those first followers, watching with them as the Lord breathes his last. Lost in awe at the love which offers such sacrifice, thankful beyond words.
This is a suction pump.
For those not in the know, it's a Hoover type device we use to suck snot and slime out of Imi's nose, mouth and throat, to help keep her airway clean. Sorry.
This is a suction pump bag.
It is grey, utilitarian, discreet. Subtle maybe? Boring, definitely. For the last five years at least, it has hung from the back of Imogen's wheelchair, ready for use in an instant. Life saving at times, comforting always, a part of our lives.
The grey isn't bad. When Imi has had black and silver wheelchairs, it has looked nicely coordinated. But now her chair is a riot of pink and purple, and subtle doesn't begin to come into it. Bright girlie colours for a girl who doesn't always have the breath to shout, but who always wants to make her presence known.
So when Carrie-Lou (from http://www.carrielou.co.uk/) asked if anyone might be interested in testing out a jazzed up version, we were first in line.
And here it is
Just in case anyone was in any doubt about who was the lucky owner:
The pictures don't do it justice. Butterflies, dragonflies and hearts in tones which match both wheelchair and Love quilt, on side pockets and end pockets, and, as a special extra, a
zippered hidden pocket inside meaning I can put my purse and keys somewhere safe and leave my bag at home.
Here it is in action on our day out today.
Not the straightest or most focused or photos, but the only rear view I have right now!
Here it is on Carrie-Lou's website. http://www.carrielou.co.uk/deVilbiss
Carrie-Lou has also made some of the girls' button pads - check out her Minions if you get the chance!
Thank you Carrie-Lou; you've turned something utilitarian into a thing of beauty and a joy for us all.
Imogen's a bit poorly today. With hindsight, she's not had the best few days, really, but when you're busy dealing with the bad days, there isn't often time to take stock of how things are going.
And so it wasn't until I'd finished packing for respite, and had time to sit down between folding clothes, counting meds, delving deep into the freezer, giving her nebs and suction and chest physio, that I had time to work out that she probably wasn't really well enough to go. Sitting, panting, watching me pack, was a girl with a purple face, a rising temperature, and the beginnings of a glazed panic stretched across her face.
So I tossed her back into bed and cancelled respite. And, of course, she instantly calmed down, her breathing eased, and if it weren't for the gentle twitching and general "not really here-ness" of her face, you wouldn't know there was anything wrong.
But we tweaked our plans; an online shop instead of a physical one, suitcase gradually unpacked and bits of kit resuming their spots in her over stuffed bedroom.
Grannie was going to take Amana as I dropped Imi off; they went out for fresh air anyway. A phone call from the hospice, and a home visit offered right when I'd been aiming to call them to query antibiotics. A protocol being rewritten to clarify the links between hospice and community nursing.
More phone calls then, and my simple phone call cancelling respite had set a series of links in action. Respite sent staff out this afternoon, and Imi has been enjoying a shower, a beauty session, and some music making. She's just getting into bed as I sit and type this; respite still even if not quite what was planned.
And more respite on the way; a seamless linking of respite nursing and homecare tomorrow, with the offer of more help later on if I need it.
One phone call from me, and one happily timed hospice contact, and one support package for the next two days and beyond. Others taking on the administrative work which can be almost more exhausting than the caring, taking over to ensure that my own energy can be concentrated where it's most useful.
Result? One calm household, one child who has had a lovely afternoon even if only really semi conscious, one parent who has had a peaceful afternoon, and who has had a physical rest from caring and a mental rest from being the on site entertainment, and one little sister who is reassured that her own needs can be met.
There was a time when cancelling respite would have meant nothing but extra work for me, when the burdens would increase right at the time when the burden was already over stretched.
I'm so thankful for the way in which all these different agencies are working together. Not just alongside each other, but actively working together. Community respite nurses going into the respite centre. Respite centre consulting with hospice and hospital. Hospice Drs advising community staff. And me, kept informed, but not having to steer everything. It's good.
A last chance to grab a walk with a friend, before the mayhem of the school holidays begins.
Ruins and well-loved houses, and an ancient church.
A duck with how many ducklings, oddly scared of us and trying to hide, rather than coming up and demanding bread. Which was probably just as well, as we didn't have any.
The gentle Windrush, whispering a watery commentary to us as we walked alongside it for a while.
And then, rising up in front of us as we turned a corner,
The reminders of medieval days and echoes of former glory.
What stories could these walls tell? And why, in the 12th century, did they build this manor house so close to the river and the fish ponds?
A pair of donkeys as guardians.
And then, abruptly, after a field of unfortunately in photographed llamas, our car park and today's civilisation. A short stroll back into the village, for a rather posh lunch and a game of musical tables.
Then home via a rather less posh garden centre for a final cup of tea.
A refreshingly good day. Tia
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 peopleandTo 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.
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.
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.
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. http://www.ifootpath.com/walking/walkshow.php?walkID=2476&username=
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.
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?
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.
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.
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.
Is a very lovely place
And it's starting to look like there might actually be a Spring sometime.
A very satisfying plodge around stomping grounds I haven't visited for about ten years. Empty hillsides, birdsong, beautiful views and a wind which blew me up the hill on the way out, and still blew hard enough to keep me sliding all the way down again on the way back.
Now if it would just kindly blow the water away from all those fields and back into the rivers where it belongs...
When a child dies, your world stops. A peaceful passing or a struggle to the bitter end, an expected event or a tragic accident, is irrelevant; your world stops.
Problem is, the rest of the world doesn't. It might pause for a while, but eventually the world moves on. And you are left with a dislocation, the knowledge that you are forever slightly out of step with the rest of the world. You may connect, you may mesh, but like a broken zipper, there are places where the cogs which once held you so closely to the world just gape open. And you can paper over them, and move around them, you can get used to avoiding them, but you can't ever really pull the two worlds back together in the way they used to be.
When Goldie died, she was in a hospital a long way from home. Prayers and love, pain and suffering, nursed by strangers but thankfully surrounded by many of the people most important to her. I don't know, I can't know, what she was feeling at the time. But I do know what what carried me through was the knowledge of the love of God, his presence tangible at my side, his sorrow and his grace flowing over us in that busy little room. And over the next however long it was - because time flows differently too, when you lose a child - the only respite from the suffocating sadness was to fall back into worship.
A long drive home, and yet my hands steered my bus not to my driveway but to the church car park. Wanting a while to rest before picking up the rest of my life; anticipating a quiet space; instead I found a hundred children and a crowd of volunteers in fancy dress staffing the annual holiday club.
I thought I wanted solitude; instead God found me friends. Arms around me, a physical comfort and a sharing of the sorrow; a strengthening before I stepped back into family life. God is good.
It was a messy death, Goldie's. A long delay before the funeral; a longer delay before the inquest. And eventually, confirmation that it was an entirely avoidable death. This need not have happened. Goldie could, even now, be singing her way through the wee small hours, waking her housemates and laughing at her carers. Or, of course, she could now be crippled with pain from various conditions, she could be suffering from prolonged seizures, she could be the victim of sustained and systemic abuse. We'll never know, because it didn't happen that way. Her life was cut short, at the age where many young people consider life to be just about to begin. A catastrophic catalogue of errors means she will be forever 18. Dancing in heaven.
Grief is a lonely path. We all walk it differently. But that friend who first greeted me in the car park, who allowed me to weep for my loss instead of carrying others, she now walks this same path. And friend after friend after friend follows on, until the circle of friends I have who have lost a child is, unbelievably, wider than the circle of friends who have not.
When your world stops, worship is all that's left. I don't know that it's even necessarily a conscious choice. But when you fall, and God is right there underneath, what else is there?
We talk about being living sacrifices. Sacrificial praise; the act of stepping out of the loneliness, the bitterness, the despair. The deliberate decision to look up, hold up our hands and worship, not necessarily leaving it all behind, but reaching up from the middle of the mess and acknowledging God as sovereign over all of it; that's a choice. And not an easy one. But the instinct to cling to The Rock; the reaction a hurt child crying for a parent, that I think goes deeper than any kind of choice.
It's hard to explain, impossible to rationalise. God is good, all the time. And yet, the unthinkable has to be thought about. Children die. The world suffers. And we weave our way through it, somehow.
We turn to God in the dark times. It's easy to pray, to beg and plead, when your child is sick. To ask for healing, wisdom, clarity of mind to make the right decisions. To pray before exams, before job interviews, when we don't know where the next meal is coming from, whether that's because there is no food in the house, or no mental energy to assemble that food into something resembling a meal our families will eat.
And it's easy to give thanks (and easy to forget to give thanks) in the good times. To praise God for the exam results, the driving license, the clean bill of health.
It can be suffocatingly hard to go on praising God from the depths of torment. But it can also be the only thing worth hanging onto. To receive another phone call, to know another friend's world has stopped; what else is there but to turn up the volume and lose oneself in an ocean of praise?
It feels wrong. The temptation is to feel guilty, to resist the escape and instead to rely on ones own strength. To surrender to worship, even or perhaps especially messy, snotty, snivelly, crumpled on the floor in a heap praising whilst simultaneously daring to tell God how we really feel about the massive unfairness of it all type of worship, feels like failure. I should be stronger than that.
But we were built for this. Jesus was broken for this. Not to plaster on a smile and pretend everything is alright, not to paper over the gaping loss, not to dance to someone else's artificial timetable. But to take our brokenness, to pick up the pieces of our lives, and to give them back to God. We don't have to fix ourselves. Which is good, because I can't.
God in his goodness gave me friends for the journey. Friends who understand, who I don't have to hide from, but who will also let me hide behind an "I'm fine" knowing that sometimes it takes too much energy to explain. We're a mess. A broken people living in a broken world. But worship allows our brokenness to join God's great dance, it takes our pieces and places them in his mosaic. And when that's all we can do, it is also the only thing we need to do.
Escaped for a couple of hours, revelling in the luxury of nurses here for Mog.
And despite the weather forecast promising sleet, snow, rain and general misery, we had an hour of absolute beauty. Geese honking, ducks flying, pooh sticks swirling without a current.
Damaged fences, footpaths feet under water, the Thames having long since burst its banks and occupying much of the surrounding countryside.
But this small part of one tiny corner of England was just peaceful. Soft ground to walk on, a brisk wind to keep us moving, other people's dogs to laugh at.
An unexpected bonus gift of a morning.
Taking time out of looking into the future in order to appreciate the present.
I'm for it, Tia
I've been pondering forgiveness since we left Blaze on Saturday (talks available here if anyone fancies a listen http://www.new-wine.org/node/1704 )
I think it's safe to say Arianna Waller didn't mince her words. We talk a lot in the church about how awesome it is that Jesus has paid the price, how thankful we are to have been forgiven, that each and every single one of our transgressions has been wiped clean until we are whiter than the snow. And it is awesome; grace and mercy, truth and love; freedom in Christ.
But we don't always talk so much about the other side of that. The fact that we just as we are forgiven, we must ourselves forgive. More than that; Jesus said - and we pray in the Lord's Prayer - that as we forgive others, so shall we be forgiven.
And Arianna - who works with young women who have been massively wronged by the world around them - had for me a new insight into what that forgiveness is.
It is not forgetting. To forgive does not mean pretending there was no wrong, no harm done.
It is not taking responsibility for the sin myself - although where I share the blame, I need to forgive myself too.
And for me, the part I really needed to hear, it is not necessarily a once for all time thing. Arianna used the analogy of a pair of scissors. Every time you choose to forgive someone - and it is a choice, an act of will - you snip away at the cord which binds you to their debt, and transfer that debt to God. We forgive - and go on forgiving - until the memories of the sin are no longer painful. Not because we are numb, but because we are freed of the burden. No longer defined by that act.
It's a challenge. There are things in my past I tend to skip over, try not to think about. I have pretended I am ok with things, turned real hurts into dark jokes, not allowed myself to feel the anger. And in order to forgive, I have to acknowledge that there was wrong done. Ouch.
But, as I'm snipping away, new memories are surfacing. As I allow myself to see the sin for what it was, rather than attempting to work out what I myself did wrong, I can sort out the middle and see more clearly. A recognition of a fault, an act of will to forgive that specific wrongdoing, and as I did so, so God reminded me of a loving act of grace from the very same person.
Removing the blinkers is helping me see people through God's eyes. Forgiving, cutting the ties, is clearing the way for me to see people - including myself - the way God sees us.
It's hard. But its good. It's an ongoing project, and I need the Holy Spirit to open my eyes to the truth of situations. To stop attempting to justify or minimise the hurt, but instead to see it for what it is, and forgive it. And keep on forgiving it, until it doesn't hurt any more.
We've only been home a few days, and perhaps I'm still floating on a high God tide. But I can already see how this makes a difference. To forgive, that I might be free. Free to love. Free to be the child of God I was created to be.
Arianna's book "From Pain to Pearls" is here http://mercyministriesuk.oxatis.com/Mobile/MBSCProduct.asp?pdtid=13523247
and I'd recommend it. This isn't a sponsored post though; it's the thoughts of a woman awake at 2am who knows some of what she needs to do, and hopes it might help someone else too.
It's a good thing my friends know me. Surprisingly, I was actually early this morning when meeting a friend for coffee. Early enough that as 10,000 Reasons hit the speakers, I thought I'd turn up the music and sing, rather than turning off the engine and getting out of the bus. Note for future reference; always a good idea to check your friend wasn't even earlier than you, and isn't in fact watching you through the window. Laughing.
Oh well. It broke the ice.
A child-free cup of tea; mine at school and respite, and hers one grown and the other much grieved for.
I remember first meeting my friend's jewel of a daughter; she and Mog were at a holiday club together. And I realised this was the precious child whose photo sat above Mog's on the almost empty hospice board (a board now full to overflowing). Dancing hands and a hidden smile, full of secret joy.
We became friends, her mother and I, over shared outings without children, and shared "oops she's really poorly this time" stays in hospital and hospice. It cuts through some of the clutter which gets in the way of building friendships when life is so caring-busy.
And then Ruby got sicker, and it was clear she wasn't going to get better. And life slowed right down for my friend, and for a while her world shrank to the four walls of her daughter's bedroom, with brief escapes to check the rest of the world was still around.
We buried Ruby the same day another friend's son died. Last year was utterly relentless.
And now Mog is still sick. And whilst she did, technically, have a very successful op last month, it didn't have the effect we were hoping for. And now we are going to have big meetings about what we think we should be doing for the best for her. It's a road my friend has travelled, and it is good to have someone who has walked it.
As another friend says, I don't know what the future holds, but I know who holds the future. That has to be enough, but friends who have walked this route know how hard that is.
And this past year has been tough on my friend. Things don't stop when your child does, there are still 24 hours in every day, and the world out there still moves to its own rhythm. How do you deal with the disconnect between our world and the wider world?
My friend has found a way.
A collection of poems, from Ruby's life, and from the life which will insist on going on, even when your child doesn't. It's a beautiful book. Raw, real, precious. (And available here http://www.lulu.com/shop/julie-forth/jewel/paperback/product-21339856.htmlif you'd like to read it for yourself).
So we talked life and poems, practicalities and dreams, and then it was time to come home and get on with the next bits of life again. But because we'd had our chat, when the next professional helper phoned, I was all ready with my next suggestions, knowing what I needed rather than trying to work out what might be helpful. An instantly useful outcome, as well as the soul-food which is time spent with a friend.
I'll take that, Tia