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. 
Tia

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. 

Enjoy. 

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

Risk.

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. 

Tia



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!) 

Tia 

Sunday, 3 July 2016

Waves.

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. 
Tia 




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

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