Friday, 18 April 2014

Bank Holiday?

"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.


Friday, 11 April 2014

Bright Ideas.

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 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. 

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. 


Monday, 7 April 2014

Working Together.

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. 


Friday, 4 April 2014

Minster Lovell

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. 

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. 



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