Wednesday, 6 December 2017

It's starting to look a lot like...

Tis the season to be jolly. Joy to the world. Peace to all mankind. Happy holidays, merry Christmas, church bells and jingle bells and cinnamon and oranges. Smile, laugh, be busy, spend money, see family, eat, drink, and be merrier than ever. 

No pressure there then. 

This year, I'm thinking of four more families who have entered the club no one wants to join; families facing their first Christmas without their beloved precious child. 

Families asking, how do we do Christmas now? How can we celebrate, with such a big hole? But also, how can we not celebrate, for the sake of our other children? 

Imi died four days before Christmas Eve. That tends to blow a bit of a hole in the whole excitement about the run up to Christmas. We buried her big sister on the last day of November, a whole three months after she had died. That also  has a bit of an effect on Advent. 

Grief runs like words through a stick of rock. Hard, inescapable, but achingly sweet. 

And I'm drawn back to that first Christmas. A tale almost too familiar in its repetition. A girl, pregnant, giving birth miles from home without a proper roof over her head. Angels celebrating. Humble shepherds gathering to worship. Heaven come down. 

Beautiful. Ageless. A miracle. God on Earth. We know the story. 

But I'm wondering about God the Father, God the Holy Spirit. One tiny baby Jesus, naked and vulnerable, entrusted to Mary and Joseph, sentenced before birth to a life none of us would choose for our child. And two thirds of the Holy Trinity stepping back, releasing their son, knowing what would happen, but easing him out of Heaven anyway. There was great rejoicing in the land. But I wonder if maybe there was a great mourning in Heaven? An anticipation of Easter? Things would most definitely never be the same again. 

Fast forward a bit, and whilst Jesus and his earthly parents become refugees in Egypt for a time (and don't tell me that was no loss to their own wider family and friends), Bethlehem weeps for the mass murder of every male baby under one year old. Somehow, I can't see Bethlehem continuing to celebrate that holy birth whilst weeping for their lost generation. 

A visit from wise men, or kings, stargazers certainly. And gifts. Gold, treasure. Frankinsence, for a King. And Myrrh, to annoint the dead. And Mary stored these up. Right from the start, the joy of life, and the forewarning of death. 

Did she dig out that myrrh when Jesus was hanging from the cross? Or was it lost in travels, sold for bread in hard times, or carefully preserved but never used as events took over so fast? I don't know. But I wonder, as she pondered on that visit in the times to come, did she know, as so many of us have come to know, that she would outlive her son? 

I don't know. 

Child death runs through God's story.  How long did Adam and Eve live without Abel? What did Moses' parents' friends and neighbours think, when he survived their great loss? How long did Naomi mourn her sons? The latter part of Job's life may well have been more blessed than the first, but I'm pretty sure it wasn't any compensation for such loss. David and Abigail dusted off their sackcloth, but their son won't have been forgotten. 

Rachel weeps for her children. 

And we weep for ours. 

But we do celebrate too. Because we knew our children, we loved our children, and because we know they are themselves preparing to celebrate with angels and archangels, and all the company of Heaven. 

How do we celebrate, when we have such empty seats around our table? That looks different for everyone. 

For some, it is good to carry on just as before. A friend pulls up an empty seat to her table, with her child's special things on it. Unthinkable to not set a place for him, so that place is set. Another hangs photos on her tree. One visits a grave and reads the Christmas story, another tucks her child up inside her heart, and keeps him there in that private place, a grief too precious to be shared. 

There is no wrong. For us, that first year, we just tagged along to plans made for us. Last year, we changed our traditions and hosted Christmas ourselves - easier to be in control than to be at someone else's beck and call. We decorated some rooms, left others plain, able to dip in and out of Christmas as we saw fit. This year things will be different again. 

But through it all, in every day, in the joyful times when things are going well, and in the ugly bitter times when it seems as though the world has not only forgotten but trodden on my memories in the forgetting, through all of this, I look up at God my Father. And I see Him looking back, and I know he did it too. He watched His Son die, through innocence, through chosen weakness, and not at his own hands. And He is there, He weeps. He mourns. He comforts. He knows. And that's how we do Christmas. 

A non update.

It's been a while. 

There's lots to say, but unfortunately it's news I can't share on line for another few months yet. Bear with.

We had a Spring, we had a Summer, A had more spinal surgery, and is loving life.  We had an Autumn, we are heading into Winter, we are very busy in a different kind of a way, and life is generally good. 

I'm fostering again, and A adores our little fosling. 

There's a post nagging at me but unwritten yet, but in the meantime, to people who have contacted me checking we are ok, yes, we are, I'm still here, still plodding along, walking this beautiful  road with friends and family around me. 

Thanks for your patience. 

Sunday, 22 January 2017

A walk down memory lane

A is off on a church youth residential trip this weekend. I spent the night, doing the grunt work for her, and left her this morning to get on with being an eleven year old without me. I'm told I wasn't too embarrassing; this is a relief. 

It was a glorious morning as I left them 
Much too nice a day to drive straight home again. And so I upset Pat the Sat, turned right instead of left, and found Isham, the village where Grannie lived when I was growing up. 

And I remember. 

Trundling around the garden, with my cousin my playmate, no siblings for either of us yet. Was there really a bottomless well at the corner of the croquet lawn? 

The farmyard behind, the comings and goings and "don't go in there." 
Closing the house up at bedtime, the thick wooden shutters on the windows. 

A whole room just for trains, with stars on the ceiling. The men playing backgammon; my uncle's laugh booming  loud against the quiet night. 

Milk bottle crates; I don't know why. 
And so many lovely hiding places. 

I walk a little farther along the road. 
The gate is open; beyond the wooden door, the service has begun. 
And I remember. 

Sunday mornings, my legs swinging in the high pews, listening to a service which sounds a little like our own, but which is largely sung not spoken. All rise for the Gospel. Chorused Amens and Alleluias; I wonder as a child if Heaven will be this choreographed. 

"from thence he shall come, to judge the quick and the dead." The quick? And are the slow already dead then? I wriggle faster, I do not wish to join them just yet. 

Echoes of Grannie playing the organ, or perhaps it is just this morning's service, decades later. Is it still 1662 inside? 

Outside, in 2017, I cross over the road. 
I turn back, to see the church, and Langton House, and beyond it the village store. And now I am an infant, and my brother and I are staying with Grannie for a while. 

I go to the village school. As a temporary pupil, they do not wish to waste resources, and so with the discovery that I am left handed, I am seated on the seat to the right of an existing pupil. She writes in the front of her exercise book; I write in the back. I do not remember her name, or her face, but I can still see her fingers clutching her pencil, still feel the clash as we both reached the middle of the page. 

I don't remember playtime. Just her shoulder against mine as we sat writing sides to middle in her exercise book. Looking back, I wonder if a new book would really have broken the school's budget? 

After school, I remember Grannie and Colin coming to collect me. An ice lolly from the village stores, and a walk to blow the cobwebs away. 

The same walk, always, then and every other visit. Down the lane, and over the railway bridge. 
The stomp and clang of the metal bridge, and then the delicious thrill of standing on the top as a train came through. The screech and clatter of the train, and the shriek and squeak of the children, terrified as the bridge shakes, but desperate to wait it out and do it again. 

But not today. 

Today, on and over the bridge. A bridge so perfectly designed for pooh sticks, that all other bridges seem mere imitations. After the danger and trauma of the railway bridge, this is a wooden footbridge to stand calmly on, watching the water flow, hunting for trolls maybe, and to run across and into the freedom of the field beyond. 
The horses are new. 
I cannot find the trees we used to climb. Trees with long, low branches, where half a dozen cousins could climb and swing together, with roots for tripping over, and upturned trunks tantalisingly close to the river's edge. 

Nor can I find the flooded millpond, where Grannie let us make rafts from abandoned building supplies, and punt ourselves around until we were thoroughly wet and ready for tea. Perhaps this is just as well. 
Breathing in, all I can smell is crisp, fresh, country air. No hint of the Weetabix from the factory over the field. 

A new generation of dogs and dog walkers; I look in vain for Sally's Dachshunds, and remember carrying them over stubble fields on half term holidays. 

And so back to the village, and more memories there:
 Grannie's new house. The door is the wrong colour now, but the rest seems the same. I wonder if the new owners have a decaying caravan at the bottom of the lane, ready for a new generation of cousins to camp out? 

The dubious privilege of being the eldest; sleeping not in the cosy double but in the precarious plastic hammock. Every wiggle threatening not just my safety, but that of my cousin lying inches below me. 

Musty curtains, dodgy deckchairs, and the ever present croquet set. 

Back in the house, the joys of a proper coal fire. Bagatelle and Shove Ha'penny. Cousin concerts. Lying in bed under the eaves, knowing that anything dropped will roll across the floor to the window; wondering if one night the bed might follow. A dozen blankets, an eiderdown and a quilt. Waking in the night and trying to decide whether to creep through Grannie's bedroom to the upstairs bathroom, or else brave the steep stairs, and the achingly cold kitchen floor, in return for more privacy. 

Melting Moments and Queen of Puddings, and tiny, tiny cereal bowls, my brother's nemesis. The breakfast cloth on the table, always removed before lunch. And napkins with rings, and which one was mine? 

And just around the corner, the garage. A house now, I cannot reconcile this with the concrete floor, the coracle hanging on the wall, and the enormous potting shed table. No ricketty wooden ladder to a treacherous half floor now, I assume, just order and cosiness, and a cottage which looks to have been there forever. 

And now I have walked past the school, and past Mrs Swannell's house, and past Sally's house. Past the kindling shop, and past Mrs. Someone Else's house, past The Lilacs, which looks unchanged, and past the other pub, which has definitely changed. 

Someone is growing vegetables in the chapel grounds, and there is a vast house with a swimming pool where I remember rubble. I see three small cottages being turned into one, and remember that Langton House has itself been divided into two. The railway bridge has been made taller; standing on it, I cannot see over. But the graffiti remains the same. 

The bus shelter is still a bus shelter, and there are people in it waiting for a bus. As I walk past the church again, a lone woman files out and walks back up the road. Surely not the only congregant? 

But I am back to my car, and I must step back into 2017, and drive home ready to be an adult again. I have enjoyed the walk. 


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.

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. 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. 



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