Tuesday 13 December 2016

The house that love rebuilt.

This is a tale of two houses. 

I wonder if I've ever shared the story of our first home here in Abingdon? 

From a very early age, I knew that I was going to foster and adopt children with disabilities. All through my teens, all my studying was towards that end. I assumed that I would go to university, get a degree, meet my husband whilst doing so, get married, work for a few years, have birth children, and then foster. 

And then I crashed and burned four months in to a four year teaching degree, and ended up working in nursing homes for a pittance. £1.17/hour. Be thankful for the minimum wage, which came in a couple of years later. 

So my plan wasn't going so well, but I still knew I would be fostering and adopting. I just had no idea how I'd get there. 

Fast forward a few years, and I'm working in a boarding school for children with profound and multiple learning disabilities. My first key pupil dies when I'm on induction. My second key pupil turns out to have been adopted by a single parent; suddenly I realise this is possible. 

I approached our local authority, to be told "we only have teenage boys with challenging behaviour, and we wouldn't place them with a single woman." 

I approach various adoption agencies, and am rejected repeatedly. 

And so I concentrate on work, grab some qualifications, know this is still my future but consign it to the "one day maybe" pile. 

Until one day several years later the phone rings, and it is a social worker, wanting to know if I am still interested. She has a baby who needs a home ASAP. 

I don't have a home, but my parents say I can have a couple of their bedrooms, and we start moving full speed ahead, until suddenly there's another family, already approved, who can take this baby straight away. 

Good for the baby, another closed door for me. 

The SW wants to finish our assessment; I tell her to go away and come back when she finds me a house. An impossible task; fostering social workers have no housing connections. 

I nurse my wounds. 

And then, months later, another phone call. She has a house, am I still interested? 

It turns out she had been visiting the adult SW team, when a phone call came through from a housing association. Does the team know anyone who needs a through floor lift, as they have a vacant property with one in, no disabled tenants, and so will be removing it the following weekend turning the adapted house back into normal housing stock? 

And so I had a house. A beautiful Victorian terrace, with through floor lift and lots of upstairs space, and a little concrete yard to hang washing in, and a wonderful (and usefully, very deaf) neighbour. 

We finished the assessment, went to panel, and my first respite placement moved in the following day. As I worked my notice, I commuted two hours each way, picking him up on my days off, then dropping him to school and driving cross country to be up near Cambridge in time for my late shift. 

We furnished the house piecemeal; social workers from across the county had rugs, tables, even a sofa to pass on. Everyone seemed to have an old computer desk, although only one was actually needed. 

I gave up work, and came back to my home town to do what I'd always known I would be doing. It was precarious, going from a live-in job with no outgoings, to having to find rent and bills, food for whoever was with me, and so on. God was very good; for several months until I had a full time placement, every time a big bill came through, ache whe would come in the same post. Bonus checks from various organisations privatising themselves, a late payment from work, over and over again, and always enough. 

Let's skip ahead a few years. 

The house was lovely. But it was a three storey building, and the lift only went to the first floor. By now I had Imogen, and her bedroom was on the top floor, next to my own. Fine carrying her as a baby, but not safe in the longer term. 

And then an advert in a local property paper; a ground floor, three bedroom flat for sale just around the corner from my parents and church and school. 

On the day we moved in, Imi had her first ever stay at Helen House. The next day, Goldie had a minor op. What should have been a swift recovery turned into three months bed bound, as her wound refused to heal. 

And so we redecorated around her, painting whenever Imogen was elsewhere overnight, and fitting hoists and shower benches and other bits of kit around Goldie as she lay in bed. Fun times. 

Our vendors had had interesting taste. Seven different tiles in the bathroom; bathroom tiles floor to ceiling in the kitchen, and kitchen lights wired to a motion sensor, making it necessary to stand up at regular intervals whilst eating, or else be plunged into darkness. 

Still, it was our home, it was accessible, we were all on one level, and I loved it. 

That's the background. Possibly the longest introduction ever. 

We will fast forwards another few years. Picture, if you will, a toddler Amana learning to drive a power chair. The walls bear scars. 

And as Imogen gets older, and sicker, painting at all is no longer an option, unless we move out for a week. Hastily decorated rooms are beating signs of damage. Wiring is beginning to show its age, and with every new adaptation, more holes, more trunking, more battering around the edges. 

And more exhaustion. Imi may have more respite, but I need this time to sleep, to breathe, to recharge before taking back her care. 

More supplies, more kit, more everything squeezing into what feels like an ever shrinking home. When incontinence supplies are delivered three months at a time, and when you have two, sometimes three children requiring them, where do you keep it all? Feed supplies, medications, syringes, ventilator circuits, catheters; a fortress of boxes to somehow shuffle into some kind of order. 

And then Imi even sicker, and ultimately, Imi in Helen House for the very last time, and finally, Amana and I returning home on Christmas Eve, to a house both too full and too empty. 

We survived. 
God is good. 

And then, in the new year, a new beginning. With a lot of help from family, and from some truly amazing friends, love poured into this place, and together with a builder, recreated it. 

A kitchen fully accessible to Amana, where she can get under the counters, reach the oven, and heat things safely on the hob.  
These units pull out so she can reach the work surface. 

A sitting room, fully redecorated for the first time since we moved in. 
A hallway, with strengthened kick plates around the bottom of the walls, to guard against more power chair experiments. 
And space to hang coats up, for the first time in fourteen years. 

A strong new front door, where damp had rotted the old one. 
And, bittersweet, a bright and cheery new bedroom ready and waiting for whoever might need it. 
Because Anana and I have been approved to foster, and we are now waiting for our first placement. 

This wasn't ever going to be an easy year. But so many people have helped us in so many ways. Giving us this beautiful beautiful house is perhaps the most tangible, but we have been so surrounded by love and support, kindness in so many different ways. 

So many memories wrapped up in our house
And now we have the hope and courage to start living in it again. 

It's beautiful. 
It's home. 
Thank you. 

Saturday 24 September 2016

Blackberry and apple brownies, version 2.

Our apple tree is groaning, branches bent low and brushing the ground with the weight of their burden. But still not quite ripe for harvest, each stem clinging tightly and resisting the twisting and pulling to be plucked. 

So, we are making do with the occasional windfall. Small, hard, no good for eating raw but capable of becoming a sharp green applesauce. 

We went blackberrying two weeks ago, and stumbled on the mother lode, returning home with seven pounds of them to freeze, on top of whatever was eaten before it got that far. 

And this morning we needed to bake. Something chocolatey and delicious, something decadent and gooey. And a memory of blackberry brownies was tugging at the corners of my mind. 

I searched our books, no luck. I turned to google, and there it was. Four years ago, our own recipe for blackberry and apple brownies, created under fairly similar circumstances. http://behindthechild.blogspot.co.uk/2012/09/blackberry-and-apple-brownies.html?m=1

Tasty, in memory, but our eating has changed a little since then. 

So here's today's version. 

150g butter
50g cacao powder
2 desert spoons honey
250mls apple purée
100g coconut sugar 
Teaspoon vanilla powder
Teaspoon baking powder
2 medium eggs
50g gf flour (would have been ground almonds but A objected) 
225g blackberries, frozen. 
Good pinch salt. 

Melt the butter with the cacao and honey, giving a good impression of someone who really didn't want to get out of bed at all this morning. 

Remove from heat, stir in apple purée. Add sugar - adjust to taste, you might need less of your apples are riper. 

Add vanilla powder and eggs, then baking powder and flour. 

Stir in frozen blackberries, then spread batter into a greased and lined dish. Sprinkle with salt. 

Bake at 170c for around 40 minutes - you want a good hard crust but some wobble in the middle still. 

Cool, cut, cool some more and serve. 


Definitely best warm and fresh, possibly with Greek yoghurt or ice cream. 

I'll be keeping any leftovers in the 'fridge, as they are very definitely on the gooey-er end of the brownie spectrum. 

I wonder what 2020's version will look like? 

Monday 29 August 2016


Life is risky. 

This is a risk. I couldn't have done this a few years ago; Amana's brain condition meant that tipping her up caused her pain. 

It doesnt hurt now, but an unbalanced bounce could still cause damage to an unprotected bit of brain stem which happens to be in the wrong place. 

It's something we shouldn't do. And yet we did. Why? Because Amana has never been allowed to bounce on bouncy castles. Or trampolines. Or ride a horse. Or do anything which might bump that bit of her head. 

And it hurts. Not the doing, the banning. It hurts that she doesn't even ask any more, just looks at all the other children having fun then slips away quietly. It hurts that whilst her personal circumstances qualify her for an amazingly wonderful once in a life time wish trip, the complexities of her disabilities mean the medical staff can't agree to take her. 

And so, I rebalanced the risk assessment. Yes, there is a risk that we might do catastrophic damage to her brain stem (and believe me, brain stem injury really really isn't something you want). But alongside that, there's the risk to her emotional wellbeing, the risk to her development, the risk to her quality of life, which has her sitting in the corner longing to join in, but giving up on even asking any more because it hurts to be told no. 

It was a very quiet bouncy castle. Alongside her, two friends taking similar but different risks. Three parents weighing up the theoretical a, and choosing this moment over possible futures, choosing this joy over potential future pain. 

This was a risk worth taking. 

Others aren't. 

And, for one example of a risk not worth taking, don't  test bath water temperature with your hands, whilst wearing gloves. Use a thermometer. Or dip your elbow. Double check. For the sake of a bit of training, a £5 bit of kit, or possibly a bit more of a delay in setting up a new house, my daughter lost her life. 

Some risks aren't worth taking. 

9 years. 

Summer of fun.

Amana is not built to be an only child. And there's no doubt she loved Imi hugely. But, there's equally no doubt that having Imi placed big limitations on what we could do as a family. We'd bother rather still have those limitations. But, in their absence, I was determined to make this summer a pretty special one for A. 

 Or at least, I was determined to try. 

It started well. A weekend surfing, at Caswell Bay. Beautiful sunshine, warm wetsuits, good friends, and only the knowledge that friends were missing out due to unfortunately times broken legs to spoil it. Well, that and the pain involved in removing a skin tight wetsuit from a body aching from having been battered by the ocean for five hours when that body is already pretty battered from multiple surgeiries and dodgy nerves. But she's definitely tell you it was worth it. 

A weekend in a hotel, just the two of us in the room. That's a first. Just getting down onto the beach into the soft sand, without wheelchair wheels getting dragged down, that's a first too. Something I used to manage with Goldie and Imi, and just wore out my own enthusiasm for by the time A came along.

Small, simple things, so easy. We arrived at the hotel, friends were just off out for an icecream, so we threw our suitcase in the hotel room and went off to join them. Wouldn't have been possible with Imi - shelve needed to rest after the journey. 

Two very late evening meals. Again, an impossibility for Imi. But such simple fun for Amana. 

Home for a few days, and then New Wine. 

A very very Imi place, especially last year. And harder thank I'd anticipated for Amana without her sister to anchor her. Without knowing that I would be with Imi, she couldn't trust that I would be there for her. Much rage. Many tears. Much shouting. Some fun. Beloved friends. Fabulous carers. Silly moments. 

And so much sadness. Our tent, so empty. Too empty; we will not sleep in it again. And God, always. A thin place, New Wine; the veil between Heaven and Earth so faint, glimpses shine through. Bittersweet, with half our family now on the other side. Strength within the sorrow. Beauty within the brokenness. Promise and hope. And a struggling eleven year old. 

A safe few days at home. Much colouring. A big day out with cousins - of which she managed half, before needing to come home and decompress. And then Special Kids. Www.specialkidsintheuk.org. Us. Our friends. Their friends. New friends. Old friends. A field full of alpacas, pigs, goats, and 200 odd people; families with children with all kinds of additional needs. 

A safe space. Where no one bats an eye lid when the teenager has the third meltdown of the morning, when the only stares at wheelchairs are people wondering why yours is better than theirs, and possibly the only place in the world where the manual wheelchair (carer pushed) race has to be run in heats because there are too many entrants. And where no body minds if the wobbly walkers set off in the wrong direction, and so where this is an entirely acceptable way to finish the race. 

It's a place where Amana is utterly free to be herself. To join in with others, to go off with friends she's grown up with, where she can take charge of some little ones or hang out with the older ones. Or, this year, where she can rant and scream and rage and fury and refuse to allow herself to enjoy things. Imi was missed here too. And her panic at feeling that loss turned into a determination that I must not ever touch Imi's friends. 

There were happy moments too. 
A very gentle bouncy castle bounce. Another first. But finally (I hope) big enough that a little bounce wouldn't be big enough to knock anything major. 

Coming second in the power chair race. 

Fun with firemen. 
A quiet paddle around a beautiful lake. 
(And then raging fury because it wasn't lunch time yet). 

And then home. Safety. Silence. iPad and colouring and undemanding activities, no need to put up a front, just space to be quiet. 

And church holiday club. Always a hit. Except this year, when A's temperature rose as it started, and stayed high enough to have her admitted to hospital before the end. So her very last holiday club fizzled out instead of finishing with a bang. And instead of a barbecue and a party, she had cannulae and antibiotics and fluids and late nights watching her heart rate come back to normal and an admission that maybe she'd been feeling a little poorly, but she didn't want to miss out. 

Home again, and the major op she should have had this week cancelled now due to infection. So I had a look around at various late break type places, and found some super cheap deals. Would she like to go to France, to Disneyland Paris, to Belgium, to a chocolate factory, to a hotel somewhere by the sea, to somewhere in this country to eat chips and share a bed, to somewhere near friends? Nope. She wants to stay home and colour. And bake. She doesn't want day trips, she doesn't particularly want visitors, she definitely doesn't want to go out tomorrow morning (hard lines; it's booked and I need to talk to another adult at least once a week), she just wants to colour, to draw, and to sit with the iPad. And make plans for when we aren't a twosome any more. 

I get it. It's hard. It's been a fun summer. We've done a lot of things we always do, and a good few things we'd never been able to do before, and maybe won't ever do again. 

Seeing Imi's friends without Imi has been unbearably difficult. A boy only, where there should be a boy and a girl. A boy and a girl holding hands, where there should be a third in the middle. 
These two, without their teammate. So hard to watch. But above them, I. The last day of Special Kids, this: 

And things will be ok. And things have been ok. It's hard to argue with a smiling rainbow. 


Everybody's surfing...

There was once a girl, who wanted to run a race with her Dad. Not a problem, you might think, except that this girl happens to have cerebral palsy, very little control over her own body, and whilst she can drive her power chair pretty fantastically with her mouth, it doesn't really go fast enough to let her take part in your average race. 

It would have been easy to say sorry, but not this time, Poppy. But instead her Dad, her family, a bunch of people from the university, and Cerebra all got together, and came up with the solution, and Poppy got to enter a triathlon. Not content with that, they ran the Severn half marathon this weekend. 

So far, so amazing. 

But it doesn't stop there. Because whilst training for the triathlon, they met Ben from Surfability (http://www.surfabilityukcic.org/). 

And another friend declared an interest in surfing. Which, as a child with a vey wobbly walk and an interesting set of seizures, isn't something her family had ever considered possible for her either. 

And so, as Poopy trained for her triathlon, another team sat down and started to make another dream happen. And one child's dream grew, and Special Kids in the UK (www.specialkidsintheuk.org) got involved, and a team of families were invited over to the Gower to have a go. 

And Amana and I were there. 
This was Amana's first ever experience of sitting in the sea. Her first time to feel the waves, her first experience of wet sand being sucked from under her, her first  chance to discover that the sea is salt. 
I'm in that photo somewhere...

It's safe to say she loved it. 
Lunch with friends, and then back into the water for the main event. 

On a specially adapted surfboard, with Ben behind to steer, she rode the waves 
And she loved it! 

But it doesn't stop there. Because after sitting back and surfing from up high, she wanted to go back into the water. 
And when she'd finished playing, she saw the regular surfboards, and decided she'd like to try solo. 
And so she did! 

Not bad for an eleven year old who had never even sat at the waters edge letting the waves lap her toes up until that morning. 

So thank you, Rob and Poppy, than you Surfability, and most especially, thank you Special Kids in the UK for making it happen. 

(And thank you David and Ashleigh for the photos!) 


Sunday 3 July 2016


There's a song we used to sing the Guides to sleep to at summer camp. 

"Protect me, O Lord, for my boat is so small/protect me, O Lord, for my boat is so small/the sea is so big and my boat is so small/protect me, O Lord."

The fisherman's prayer. Small boats in a big ocean; small tents in a big field. Either way; it's a big sky and we are very tiny. 

And I'm reminded of it sailing through this grief ocean. Mostly, it's a manageable ocean. The tide rises, the tide falls, and sometimes I rise with it, and other times I stay put and let it wash over me. 

There's the predictable waves. Significant dates. Poignant places. People who were frequent visitors to our home, now seen only occasionally. Big decisions; redecorating a bedroom, scattering ashes, sorting through the flotsam and jetsam of a child's life and deciding what to keep and what to pass on. Ebbs and flows; my boat caught in the currents and sailing where it needs to go, not necessarily where I want to be. But always somewhere beautiful. 

And then there are the tsunamis, the tidal waves which come from nowhere. Like the butterfly's wings causing hurricanes half a world away, from the other side of church a mother juggles child and feeding pump. 

And I am knocked sideways. Memories of so many days doing the same. Dancing with a child and untangling the tubes, standing up and shuffling sideways; a special twist knowing just how far to move to avoid dislodging anything (and a hundred memories more of getting it wrong, of accidental disconnections or unintentional tube-ectomies. Knowing just how to flick the shoulder so the tube slides sideways and doesn't catch on the elbow or handlebar, Remembering to smile graciously at those who rush in to help and pull things the wrong way, genuine thanks for those who know to rest the pump the right way up. And my heart aches. It aches to juggle everything just one more time. It aches for the time my child was small enough to do it with ease, and it aches with the still present physical aches from the years when she was too big, but we did it anyway. And it aches for the tiny baby, for the new family, for knowing what their future may hold. 

I am fragile today. Protect me, O Lord. 

Sunday 26 June 2016

Let's talk politics

“Do not seek revenge or bear a grudge against anyone among your people, but love your neighbour as yourself. I am the Lord."
Leviticus 19:18

 "The foreigner residing among you must be treated as your native-born. Love them as yourself, for you were foreigners in Egypt. I am the Lord your God."
Leviticus 19:34

"God is our refuge and strength,
    an ever-present help in trouble. 
 Therefore we will not fear, though the earth give way
    and the mountains fall into the heart of the sea, 
 though its waters roar and foam
    and the mountains quake with their surging.
 There is a river whose streams make glad the city of God,
    the holy place where the Most High dwells. 
 God is within her, she will not fall;
    God will help her at break of day. 
 Nations are in uproar, kingdoms fall;
    he lifts his voice, the earth melts.
 The Lord Almighty is with us;
    the God of Jacob is our fortress.
Come and see what the Lord has done,
    the desolations he has brought on the earth. 
 He makes wars cease
    to the ends of the earth.
He breaks the bow and shatters the spear;
    he burns the shields with fire. 
 He says, ‘Be still, and know that I am God;
    I will be exalted among the nations,
    I will be exalted in the earth.’
 The Lord Almighty is with us;
    the God of Jacob is our fortress."
Psalm 46

"Hearing that Jesus had silenced the Sadducees, the Pharisees got together.  One of them, an expert in the law, tested him with this question:  ‘Teacher, which is the greatest commandment in the Law?’
 Jesus replied: ‘“Love the Lord your God with all your heart and with all your soul and with all your mind.”  This is the first and greatest commandment.  And the second is like it: “Love your neighbour as yourself.”  All the Law and the Prophets hang on these two commandments.’
Matthew 22:34-40

"And now these three remain: faith, hope and love. But the greatest of these is love."
1 Corinthians 13:13

Sunday 19 June 2016









Friday 6 May 2016

To The New Parents.

Congratulations! You might not feel like celebrating right now, and that's ok. But I want to congratulate you anyway, onbecoming parents, and on this precious bundle of life your child. 

I'm sure this isn't imagined how your birth announcements would be. I'm certain you didn't expect your early weeks to look like this. And I don't underestimate the heartache you're going through as you try to work out what kind of a future you're going to have. 

I want to say this. You have a future, and it is bright and glorious. If miracles happen, then alleluia, praise the Lord, and I know all Heaven will be rejoicing with you. But you know what? If miracles don't happen, then alleluia, praise the Lord, and all of Heaven is still with you. 

Whatever happens tomorrow, next week, next year, you are on a journey that is going to be unimaginably awesome. Does that sound tactless? Possibly, and that's why I hesitate to send this. But I think maybe I still need to say it. 

You will see life more clearly than ever before. You have already tasted that clarity - that first precious unassisted breath, followed by another, and another, and another. They took too long, and maybe you weren't able to be there when they finally happened. But they did happen, and they are worthy of huge celebration. 

I need to tell you, that taste for celebration; itss addictive. All those milestones parents take for granted; they are going to be so infinitely precious to you. But I want to talk about the inchstones. The first time that tongue sticks out, the first time those eyes track a light, the first time fingers twitch under your touch. And there will be hundreds of those. And whether your child shakes off this early start and becomes one of those "this exact thing happened to my friend's son and he's just got a first from Oxford" children, or whether your future looks more like my past, you will find things to celebrate. 

And it will be ok. It will all be ok. Even when it's not - and there were many times in Imi's life when things were very very not-ok. But our God is bigger. And He has this. And there will be a rightness to this wrongness, a peace to this panic, and asense of wonder even in the wrongness. 

I could tell you things which might be helpful. I could say that Amana had a feeding tube until she was 9, that I was told she would never talk, sit up, support her own head. I could tell you her brain damage was so severe that she wasn't expected to survive infancy. 

I could tell you that Imogen's cerebral cortex was destroyed at birth, that she should not have been able to see, think, communicate, understand.

I could show you so many of our friends, with so many varied and complex lives, in the hope that you could find some resonance with some of them. But I'm not sure that's what you need right now. 

And so instead I'll just say this. You're going to hear a lot of things from a lot of different people. Some of it might be helpful. Some of it is going to be horrifically hurtful and insensitive, and I wish I could spare you that. You will learn to dance again. It's a different kind of dance. But it's beautiful. 

Congratulations on your precious, precious child. It is going to be ok. Our Daddy says so. 

Sunday 1 May 2016

Here and Now

My mind was wandering during the sermon this morning. Don't judge me; there were reasons. The passage? The beginning of 2 Corinthians 5. I was struck by the first verse; "For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands."

I don't think I quite followed all our preacher was suggesting. It seemed very complicated. Whereas, to me, it's very simple. I've put one of Imi's favourite songs below us here, together with the lyrics she loved (she preferred the Downing Family version, but I couldn't find that online). Glory to God I'll have a new body, changed in the twinkling of an eye, when I wake up to sleep no more. 

Walking with Imi, particularly in her last month, was to walk with her as she walked towards Heaven. She was absolutely certain that's where she was going, and I'm equally certain there was a measure of Heaven already present in her room. She slipped between here and there, between here and eternity. The canvas of her earthly tent became a burden to her; we patched it and tended to it, but she was so keen to shed it. 

And I am certain that she took her final not-really-a-breath-because-it-was-just-too-shallow once she was already standing on Heaven's shore, shedding this tent as she stepped into eternity. She was not left unclothed, not left suspended, she is not currently somewhere in a state of waiting, but is fully completely and perfectly Imogen, whole and new and forever praising. She is with her sister.

Our God is the Lord of time (Potentate if you will; ineffably sublime. I have hymns in my head tonight). He rules time; He is not bound by it. 

Time matters immensely to us. We measure not just the days, but the seconds; I get twitchy when my kitchen clock is two minutes out. It matters to us, because we know these lives are short. Because we know they are finite. But in an infinite eternity, how can time have any relevance at all? 

Heaven touches Earth; we all have moments when we know this. Times when the curtain is thin, where we can almost glimpse the angels and archangels and all the company of Heaven. Where echoes of joy ring out across our souls, moments of true deep happiness. It's there in the wonder of an infant's first smile, in a true belly laugh with a trusted friend, in the bliss of a beautifully crafted sentence in a truly lovely book, in the glorious rainbow after the darkest storm, in the galaxies shining on the darkest night. 

And it is entirely possibly I totally misunderstood what our preacher was saying. My mind was wandering. But on the offchance that what I heard was what was actually said, I'd like to reject utterly the idea that all our dead are simply waiting, waiting until the gates of Heaven open on that last day. Because there's no way at all Imogen was trudging towards a waiting room; she was running to her King. 


What a glad thought some wonderful morning 
Just to hear Gabriel's trumpet sound 
When I wake up when I wake up 
To sleep no more (to sleep no more) 

Rising to meet our blessed redeemer  
With a glad shout I'll leave the ground  
When I wake up (when I wake up) 
To sleep no more (to sleep no more) 

When I wake up some glad morning 
To sleep no more jewels adorning 
How happy I'll be over in glory 
On the beautiful shore telling the story 

With the redeemed of all the ages  
Praising the one who I adore 
When I wake up (when I wake up) 
To sleep no more (to sleep no more)  

Glory to God I'll have a new body 
Changed in a twinkling of an eye 
When I wake up (when I wake up) 
To sleep no more (to sleep no more)
Leaving behind all troubles and trials 
Bound for the city up on high 
When I wake up (when I wake up)
To sleep no more (to sleep no more) 

Monday 4 April 2016

Tenby time.

I think this will be our eighth trip to Tenby. 

Which makes it Amana's sixth trip. 

This year, we are staying in the Wheelabout. A house I first stayed in with my big girls, long before we ever thought about adding an Amana to the family. 

A hundred different memories. 
This year. 
Last year. 
A few years ago. 

And a hundred different memories, precious now but deleted from my phone as being repetitions of a dozen different themes. I had that luxury then, forgetting that one day there would be no more new ones. 

It's hard. Two girls echo through the walls here, and it isn't the two girls who are currently sitting in the room next door to me, complaining about having to be quiet as the rest of the house sleeps. 

And I'd forgotten how hard it might be for Amana too. Lining up to take a photo in the place we've posed before, often with different friends, but never without her big sister. I wonder if I underestimated how hard it was for Imi, to come back here without Yelena in past years. And I wonder whether we should go to new places, find spaces to be where memories don't trip us up around every corner. 

But then Amana comes out of her grumps to remind me of somewhere else she'd like to go. And loses her fear, puts her face in the water, and submarines her way across the swimming pool with just three breaths. 

We have been here with family, with friends, and it is different and the same every time we come. For a girl who has seen too much change, it is safely familiar, and there is joy in the remembering. Security in planning each day, with a hint of panic still when memories of her sister swim to the surface, despite her best efforts to squash them down. 

Maybe it would be kinder to find somewhere new. But maybe too, she needs this familiarity, these stumbling stones across her path, these reminders that her sister did exist. 

And because her life is never that simple, in addition to being busy working hard not to remember her sister, she now has to make decisions about further surgery, an op which would probably improve her daily life, but would be fairly unpleasant in other ways. And it's got to be her decision, and that is a lot to place on a grumpy grieving-although-she'll-never-admit-it eleven year old. 

So here we are. And we will have a good time. Zoo trips and pottering around town and racing wheelchairs on the beach. Friendship and fresh air. And echo shadows of my two big girls around every corner. 

Wednesday 17 February 2016


Three months ago today, I phoned Helen House in desperation. Imi was in agonising pain, untouched by morphine, unsedated by midazolam, brief relief with strong anti spasmodics. 

Helen House suggested a) stopping trying to feed her, and b) bringing her in. 

Which means that three months ago yesterday was the last time I attempted to feed Imi a meal. A quarter of a year ago. 

We'd had discussions in the past. We had acknowledged Imi was having increasing difficulty absorbing her feeds. We'd switched to bland blends, and back onto formula, halved her quantities, given her days of rest with no food. 

But three months ago today came the realisation that this was it. End of the line. A body worn out. 

We stayed in for a couple of days, time to adjust to this new normal. And then came home. And the rest, if you've read this blog, you already know. 

Pain. Exhaustion. And then peace. Peace beyond understanding, a peace which surrounded Imi and sustained her for the next month, and a peace which persists and helps me to carry on without her. 

Just twelve short weeks ago. And yet it feels light years away. 

Eleven weeks ago then, I was sitting with Imi on my lap for what would turn out to be her last cuddle at home. Our lovely respite team arrived, and Imi swapped to sit on our nurse's lap. And I came to The Barns Café, where I had a drink with a friend, whizzed around a Cheistmas craft fair, and sat back in my favourite cosy corner for another drink, when I got the call. And Imi had started fitting, run through all her rescue meds, and needed help. 

Today that same nurse is back in our house, giving respite to Amana. And I am back here at The Barns, with my knitting. 

I was knitting a shawl then. I'm knitting one now, the third to the same pattern. The first I finished sitting beside Imi, pausing to hold her hand or cream up her skin, as she gently got floppier and drier without fluids. The second I started then. And the wool for this one I ordered still sitting at her side. This pattern is in my fingers now; I can knit it without thought, losing myself in the intricacies of the lacework. I'm not sure I will be able to let it go, to learn a new rhythm on my needles. This wool connects me to those weeks. 

Three months. Three shawls. Three hours' respite. Enough for Amana to welcome a change of face. Enough for me, to be able to sit and breathe without my little shadow, working so hard to fill the silence caused by her sister's absence. But a stark reminder of the hole we have now - three hours for the first time in three months, rather than three visits a week for so long. My sociable child is struggling with the emptiness of the house, although she is still working hard never to acknowledge the gap. 

An utterly self indulgent post, as I sip a chai latte and watch families of giggling children from my perch on high, trying to avoid overhearing a quiet conversation in a different corner, and being baffled by the rules of Killer Bunnies over the way. Life goes on. Except, sometimes, it doesn't.  

Sunday 17 January 2016

This Is The Day

Browsing blogs the other day, I came across a sentence written by a man whose wife is dying of cancer. I can't find the blog, I can't find the exact quote, but it boils down to "This is the day which The Lord has made. It must be, because I would not have made a day like this." 

It stuck. I read it for the first time as the nice oxygen lady came for the last time, to unhook the concentrator from the great long line, to wrestle the giant cylinders from the depths of the wardrobe, to pack up the mini cylinders and the chargers, and to leave me with a hole and a pile of gently used tubing. 

I pondered on it as the nice man from Millbrook came to dismantle the bed and heave it into his bus. And as the courier came to pick up the feed pump. 

And it came back into my mind powerfully this morning, as I sat in the short pew, in the space beside the gap marked out with gaffer tape on the floor, arms empty and nowhere to hang my bag. 

I did not choose this. 

I did not choose not to be exhausted by the end of every day. I did not choose to have more space in my house. I did not choose to have an only child. It was not my choice to be able to sit through a meal uninterrupted, to sleep without listening for seizures, to sit at home in an empty house, and for this to be the norm not a special treat. Yet this is the day that The Lord has made. 

I did not choose to ache with longing to hold my girl just one more time. I did not choose these empty, relaxing hours. I did not choose this pain. But this is the day that The Lord has made, and I would choose this all over again, because all these exhausting stressful confusing days were so completely worth it. 

I would not have made a day like this. I would not have made a day like any of the four weeks since Imi died. I probably wouldn't have made many of the days in the past few years either. But I wouldn't want to be without them. 

Hard, but beautiful. Polished diamond days in memory. I remember. Shining bright, and stabbing pain. Hard. But beautiful. 

And it occurs to me that I would not have created many of the days we had together. I would not have created days watching Imi struggling to breathe, days counting the minutes between morphine doses, earlier days waiting for surgeries to finish and counting the minutes until we were together again. But they were the days with The Lord made, and they are days I treasure now; times we shared, when my heartbeat child was with me still. Days I would not have edited out of her life, for then her life would have been measured in weeks and months, not the years we were blessed with. 

This is the day that The Lord has made. Let me find a way to rejoice and be glad in it. 


Tuesday 5 January 2016

Remembering Imi

When I first met Imi, she was completely and utterly Little Girl Lost. She didn't know who she was, where she was, what this world was meant to be.

She knew she was hungry, but she struggled to suck.

She knew she was tired, but seizures snapped her body into wakefulness.

And she knew love. She knew that she was safe snuggled into someone's arms, sucking on an adult's little finger with an intensity she never managed with either bottle or dummy.

And so I carried her. For two years, if she was awake, she was tucked up next to my heart, and perhaps the warmth of my body helped a little to lessen the spasms which twisted through her.

Right from the start, we were a part of a team. Her neurologist forever tweaking the balance between seizure control and sedation. Surgeons fixing bits of her body the spasticity pulled out of joint. Physios and other therapists encouraging her body into functional positions. Helen House providing a safe space so we could take time to just be a family, letting someone else juggle the meds and other regimes.

Imogen was a lot brighter than most of us realised. Incredibly limited by her body, she realised language had meaning when she was two. It took her another three years to find a way of making herself understood.

These were her golden years. Happy, small enough to be portable, we took holidays across Europe and Florida, and she loved the warmth and the attention. Roller coasters, cable cars, mountain railways and feeding dolphins. 

And illnesses. Prolonged seizures and spasms contorting her body into painful asymmetry. Chest infections from which she never quite recovered, each one leaving her a little bit weaker, with more breathing problems.

Finally, two and a half years ago, she had the illness I think of as her tipping point. She lost her laugh. Smiling still happened, but it was hard work. There was pain. A lot of pain. School became too much for her, crowds overwhelmed her, and despite the morphine, she began spending longer and longer in bed.

She was still Imogen. She still had her wicked sense of humour, accusing respite staff of locking her in a dark cupboard, taking gleeful pleasure in kicking small children. Not able to howl with laughter any more, still she would grin widely and shout a yes if there were ever a chance to insult a friend.

And she loved. She loved to lie beside her best friend. She loved to have Amana brush her hair, or rub her hands. She loved to lie in bed and listen to everything happening around her in her en suite house.

And she loved God. New Wine was a highlight of the year for her; she managed to be up and awake hours earlier than at home, in order to make the morning worship sessions.

In her long wakeful nights, she chose to listen to her audio bible or gentle hymns.

Even in her last week at home, no longer able to tolerate any kind of food, in huge amounts of pain, she was still very clear she wanted to come to church. And with every breath she could muster, she sang.

It would be her last outing.

Imogen was tired. Exhausted. After that Sunday, she went to bed. And she was very clear she had no further wishes. She did not want to make the long trek up north to watch her friend be baptised. She didn't want to see anyone, do anything. She was done.

She knew exactly where she was and what was happening. As she got weaker she could no longer open her mouth to say yes, but settled for very clear, intentional blinks. Even the morning she died, she was able to let me know the song she was listening to was important to her, and that we should sing it today.

There were other conversations. And then there was rest.

Maybe looking at Imi, you'd think her life was sad and grim, and maybe you question the point of it all. I'm standing here to say it was all completely worth it. There was so much love, so much laughter. She lived a life that was deep and rich and full of joy. Imi knew what was important. She had a relationship with God that was deeper than many of us will ever know, and she was absolutely certain where she was going and with whom. When the time comes, I hope I can say the same.


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