Behind The Child

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Updated: 27 min 38 sec ago

Quality of life

Tue, 07/22/2014 - 09:51

Imogen can't speak. She can't form words with her mouth, she can't use eye gaze, she can't use sophisticated scanning devices, and she can't sign. But she's got a very good yes/no response, and she's got a pretty good talking book (file with lists of yes/no questions to speed up the 20 questions method of communication. And she is pretty good at letting us know what she needs.

There are obviously limitations. She is reliant on someone asking the questions. It's easy to avoid asking difficult questions, questions where I'm not sure I want to know the answer. It's easy to miss her initial shout/kick/huff which means "I'm talking, come over here." And on days when she's struggling to breathe, anything other than a very fleeting tongue thrust is impossible for her. But it works for us, it doesn't exhaust her, and she surprises us regularly with what she wants to say.

Despite these limitations, Imi very very rarely shows any signs of frustration. We might get the occasional eye-roll when I'm getting the questions completely wrong, or where I'm clearly stating the obvious yet again, but she has a fine line in non-verbal sarcasm, and that'll do for both of us. So when Imi started crying one evening, and wasn't in pain, wasn't tired, and was very clear there was nothing physically wrong, it was a big big deal.

And yes, she was fed up. Fed up of feeling poorly. Fed up of being tired so often. Fed up of the breathing problems, of not being able to cope with school any more, of spending so much time hooked up to machines. Fed up of watching the same videos, listening to the same stories, watching the world go by and slipping out of the mainstream.

So we had a chat about what make life better.

And Imi decided she'd like to make something. She'd like to create something. Not a picture with a piece of paper, not having someone hold her hand and help her glue things together, but talk to something and build something beautiful.

We found an artist who works in stained glass, Sarah Glover.  And we went over to meet her. Imogen chose some glass first, deciding on particular colours, particular effects (mostly water glass apparently, with a few different opaque bits and pieces here and there). Together, Sarah and Imi brainstormed a design, Imi picking shapes and a general theme, rejecting formal designs or copied pictures, and slowly an idea built up.

We then went away, whilst Sarah did the hard work of cutting and piecing the glass together. We came back, and Imi helped to fix copper foil around the edges of a few pieces, helped to paint flux over the whole design, polished the solder and then watched (o2 removed to a safe distance!) as the piece was soldered together. We washed the glass ourselves, then handed it back to Sarah for finishing.

And then we came back again, to find this.
Not the best photo, but a clock-shaped piece of stained glass, with the sun at the centre and a carefully selected and shaped set of glass shards surrounding it. Imi's colours, Imi's age, Imi's design, Imi's choice. And a thing of beauty sending light into our house.

Imogen is pleased with it, and proud of it, and ready for her next project. It's taken a bit of tweaking, and we're not ready to start it yet, but she'd like to do something with an old clock. She wants to buy one at auction, something I've never done, so that'll be an adventure for both of us (and not at all an indication that she watches too much daytime television sometimes!), and then make it beautiful. If we can find a local clock maker (and if anyone local knows someone with clock-mending skills, do please send them our way), she would like to find a non-working clock and fix it. If not, then we will find a working but shabby clock, and polish it up and add her own ideas to how it should look.

She's very clear that she wants to start with an old clock from an auction (which is a shame, because I could find a clock kit far more easily, but hey ho), she wants a clock with a big tick, and one which she can have in her room (so it's going to have to be fairly small).

Imogen also wants to look at other people working. She is surrounded by nurses, carers, doctors, cleaners, cooks, teaching assistants, therapists and even occasionally meets a teacher. So she would like to see other people at work. I'm not sure how we will sort that, but if you have an interesting kind of a job, work relatively locally to us, and could make space in your work for her and her entourage, she would really like to see what other people do with their lives.

Imogen doesn't have a lot of energy. We are finding that one thing in a day is enough, sometimes more than enough. Too much excitement, and she can and will sleep for the next couple of days. A trip to The Barns, a walk to the park, a hospital visit, a music therapy session, and that's pretty much a full week these days. So we are also looking for things she can do from her bed or a cool spot under a tree in our garden. We are hoping that we will have a dog at some point in the future. But in the meantime, if you have a portable one (who wouldn't eat our cats), then she'd love it if you could bring it for a sneaky cuddle. She's also interested in snakes, lizards, and rabbits, although probably not all at the same time!

We can't change Imogen's future. She is tired, she is fragile, she gets uncomfortable a lot, and at the moment she seems to be asleep more than she is awake during the day (and the opposite at night, sigh). But we can make her daily life more fun, more interesting, within the constraints placed on it by her health. So if you have any ideas for mini adventures, please do let me know, and I'll see if she's interested.

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Wed, 07/09/2014 - 10:00
"Mummy, I need to be a winter ice dancer." Costume: white, pale blue or silver, with snowflakes. In June. Nice.

Still, I don't think we did too badly, did we?

And a cancelled operation meant that Amana was able to be at all three nights of her school play; nearly compensation enough for the fact that we won't now be able to stabilise her spine until after the summer holidays.

Lands End to John O'Groats, via Facebook.

Mon, 06/30/2014 - 10:21
 605 miles (if you go in a straight line), a virtual race, with postcards every 50 real miles. Mostly exercise biked, often whilst watching television in the evening, but also walking this beautiful countryside with a friend and her mad chaos beasts.
 Old English churches Radley Lakes Mad chaos beasts of mud and destruction and maypole dancing. Nearly there! A farewell to Didcot Power Station, due for demolition this weekend. A final walk in the woods
 And the view from my 605th mile (and yes, those are neck high nettles)!

 My medal (hanging from the trusty steed).  605 miles, through virtual countryside via postcards, and through all too real and muddy countryside, but never through the rain. It's been fun, and motivating, and now I need the next challenge to keep me from sitting still.

12.

Thu, 06/19/2014 - 08:59
Twelve years since you made your entrance into this world. Twelve years since you first threw the unexpected at those who loved you the most. Twelve years since the first doctor first declared you'd have to make your own mind up about when to wake up. Twelve years since those first moments of joy and despair mixed, of wondering who and how you would become the person you are. 
I didn't know you then. But I've been here for every birthday ever since. And I know that joy and desolation, hope and fear, love and sorrow and blessing that you carry. 
There were times earlier this year when I didn't think we'd make it this far. You, so tired, throwing ever more complications our way. And yet, here you are, wide awake and singing at 5am. Genuinely, delightedly, excited for the day ahead. Laughing in anticipation, awake still when your sister was up, ready to open presents four or more hours earlier than your usual start to the day. 
Later, helping to blow out candles, choosing cuddles, taking your nurses for a walk to the cafe and drinking coffee with them. 
Family parties later still, and precious friends here the week before. A quieter birthday than last year's. But a beautifully gently perfect one nevertheless. 
Happy, happy Birthday my precious one. 



Dragonfly day.

Thu, 06/12/2014 - 17:03
Everywhere we stepped, blue damsel flies underfoot. A cuckoo in the treesBig green and brown dragonflies, iridescent black and blue ones, Swans and cygnets, geese and goslings, boats gently chugging, and the gentle hum of insects whenever we walked away from the water. 
Blue skies, a buzzing haze, water lilies and shoals of nervous fish. 
Happy dogs, wet dogs, tired out ancient dogs, and wildly over enthusiastic bouncy teenage dogs in search of the perfect stick. 
Lunch with this view, and a lazy amble home again. A beautiful gentle life-filled ramble. 
At one point, surrounded by neck high nettles, I took picture two. 
I lift my eyes up, where does my help come from. 
Tia. 

Gulp

Sun, 06/08/2014 - 18:32
I can: Break open glass ampoules without shredding my thumb (now someone has shown me which way to hold them). 
Squirt medication into cheeks and tubes (and unmentionables). 
Assess which medication might be best to give first, tweak a cocktail of meds to make a child more comfortable, draw up morphine whilst holding a discussion with another child about Peppa Pig and recorders. 
I can reposition aching limbs, bind up pressure sores, hook up non invasive ventilators, Hoover secretions out of airways, and cobble together broken wheelchairs. 
I can tube feed whilst nagging a child to drink. I can lose my temper and apologise for it. I can watch scoliosis ravage a spine, whilst planning a second op to fix another child's spine. 
I can bake strawberry cakes whilst giving nebs, cuddle children who either don't bend or bend in the wrong way, and play 20 questions to work out what a child would like for her upcoming birthday. 
But it turns out, I can't listen to a child singing along to the Downing Family's "When I Wake Up To Sleep No More." Not when that child then starts crying, and 20 questions reveals she is sad because she feels so poorly. 
http://www.artistdirect.com/nad/window/media/page/0,,7672954-21087395,00.html
"Glory to God I'll have a new body/changed in the twinkling of an eye/When I wake up to sleep no more. With the redeemed of all the ages/praising the one whom I adore/When I wake up to sleep no more."
Not without crying too, anyway. 
Tia


14

Wed, 06/04/2014 - 17:44
Fourteen years ago this week, I was making cheese and potato pie to a recipe from the cook at a local children's home. 
I was shuffling mountains of easy care clothing (all from one shop, mostly one style in various assorted colours) into suddenly too small drawers. 
Working out how best to fit everything into the lift at once without tripping the sensors. And learning where exactly to leave the hoist so the cabling didn't strangle me. 
Saying goodbye to a breathtakingly beautiful boy who had shared my life for the past six months, and opening my home to a tangle octopus of a girl, with long dancing fingers and a habit of partying most nights. 
Out with the dungarees, and in with the hair bands. Out with the puddle jumping, and in with a wheelchair. Out with Teletubbies, and bring on the Three Little Pigs. And Elmo. And a large extended family. 
Imi is now the same age as Goldie was when she moved in. And this week, Imi is the same weight as Goldie was once she'd had a few months of eating my own version of cheese and 'atato pie. And choc-oh-late cayke. And chips. And oranges and raisins and the corners of more Ladybird books than you might think existed. 
My great big Goldie was in fact substantially smaller than Imogen when she was the same age. 
Goldie lived with us and shared our lives for just half of these past 14 years. Today, Amana has been with me for the same length of time that Goldie lived under our roof. And Goldie has very nearly been gone for more time than she was with us. 
Seven years go this week, Goldie moved into her own home. A bright new future, with 1:1 staffing so she could lead her own life, be independent, go out and do things she was interested in doing, be entertained, and busy. 
We visited daily in those early days. Taught staff how to make cheese and potato pie and porridge and crumble and custard and a cup of tea at just the perfect temperature. Trained staff in the importance of always having batteries for Elmo and how to avoid the books being eaten and why it was important to keep reading the stories. 
Today I cleared out one of the darker corners of Amana's bedroom. And two forgotten Elmos lay staring up at me, wide mouths silently shaping the ABC song, always and only the ABC song. One plus and shiny, sourced from eBay at huge cost, ready to replace a failing one once it had been chewed to death. And one ancient and beloved, singing stomach removed (that'll be the insert on the top shelf in the sitting room then, waiting patiently still for the new batteries which were never needed. 
Elmos, always. Fourteen years since I first spent a night hearing Elmo sing his ABCs whilst a small girl rocked her bed until I moved it away from the walls and willed her to sleep. 
And seven years since she last needed his comforting sameness. 

Amana's Amazing Pudding

Sun, 05/25/2014 - 15:31
Recorded here, for posterity. 
Take one large packet of digestive biscuits, remove six, crush the rest and mix with 2/3rds of a 250g block of butter. Press into base of an 11 inch pie dish. 
Next, take 400g cream cheese, one can condensed milk, and juice and zest of one fat round lemon. Blitz until smooth, pour onto the biscuit layer. Chill
Pause to thoroughly lick cheesecake bowl. 
Put 1/2 a pint double cream into a saucepan over a low heat. Add 150g plain chocolate and stir until melted. Drizzle in a good glug or so of Baileys, to taste. 
Pour over the chilled cheesecake layer, gently so it doesn't get mixed in. 
Slice strawberries and put them on the chocolate layer. Leave gaps for M&Ms, but then realise you accidentally bought the peanut M&Ms and you don't like them. Leave gaps as decoration. 
*Make your mother (who has assisted with pouring, slicing and strawberry placement) carry it round to Grannie and Grandad's house. Chill in their fridge whilst eating roast pork and asparagus.
Slice and spoon to serve. Taste. Decide chocolate layer is too grown up for you. Watch, baffled, as the adults all fight for it. 
Tia 



*this step optional. 

A Walk in the Cotswolds.

Tue, 05/13/2014 - 12:15
Ignoring the weather forecast, and failing to check the traffic reports (with hindsight, a mistake), we set off for another tramp around the Cotswolds. A Roman Villa discovered after a mad scramble through a poorly planned diversion (sending pedestrians onto the railway line instead of over the bridge seems a little excessive, even if the road is being used by lorries and diggers). 
Walking through a field of very stare-y cattle. Who turned out to be less fearsome and more friendly, once we were the other side of the fence. And who lined up for head scratches and petting. And then somehow managed to open the gate (not our fault; we used the stile!) and try to follow us. 
Stepping inside this 14th Centuary church, and finding wall paintings. 600 years as a house of God. 
How many weddings, Christenings, funerals, confirmations as this church hosted? How many times have Christians gathered to take communion, how many prayers have been uttered here? 
Round and along and down a bit, and into Blenheim Great Park. Walking with stile! Lots of Spring lambs, all nearly old enough to play alone, but all running for Mum when the scary walkers got to close. 

Along the Oxfordshire way, through ancient woodlands Up a ladder and down the wall, through rape fields Along another Roman road, then back up a final hill to Stonesfield and the car. 
Home, with sun-kissed faces, and aching legs, in time to watch the heavens open and enjoy a rather beautiful double rainbow. 

This walk http://www.oxfordshirecotswolds.org/dbimgs/Walk_AONBStep3.pdfMore or less, with a little bit of a longer loop around Blenheim to enjoy a picnic lunch by the lake, and with a slight short cut at the end to make it home before the school bus. Still, 9.5 miles in beautiful countryside, and mostly only ourselves within sight. Lovely. 
Tia

I am not a warehouse.

Sun, 05/11/2014 - 18:08
And no, before you comment, I'm not talking about body size. 
I'm talking about the rôle of the foster carer. 
Adoption has been a bit of a theme lately. Channel 4 gave us "15,000 kids and counting", and now ITV has "Wanted: a family of my own." I'm enjoying them both. I think the ITV one seems to go into a bit more detail about the complexities involved in becoming an adopter. Insulting questions from panel members, frustrating delays at court, the intimate details of your own life to date, hopes and dreams, gathered by one stranger and spread before a group of strangers who then hold the power to decide whether or not you should be allowed to have children. 
The Channel 4 programme is more about the child's journey into and through fostercare, where adoption is the happy ending. The ITV series so far seems to be more focused on the adoption process itself, and very much more about the couples hoping to adopt. 
So far, so good. But I've now heard several different jarring comments, and as I couldn't easily condense my thoughts into a Facebook post, I thought I'd blog them instead. 
Comment 1. From training materiel given to the prospective adopters "he slept on a dog bed. He was starving." 
Comment 2. From a discussion with adopters "he's never been read to, he's never known about jumping in puddles, he's never had tickles or cuddles."
Comment 3. "Yes, global developmental delay, but I'm sure once he's with a family, he will catch up and be just like other children. 
And here's where my warehousing comment comes from. Because children do not, as a rule, move directly from birth families to adopters. Most children spend  time with fostercarers. Sometimes just a few months, sometimes years. 
The child who meets the adoptive parents is not the child who came into care. Adopters will not be the first people to cuddle a child, to help them jump in puddles, to work on areas of stunted development. 
The child did not sleep, starving, in a dog bed in fostercare (unless the fostercarers were themselves abusive, in which case why were the children left there?). 
Children don't spend their time in fostercare wrapped in a cardboard box, with social workers paying storage fees until a home is found. 
We care. We parent. We love. We bathe bruised bodies and we darn that ratty t-shirt which is the only link with the mummy they loved even when she spent all day every day spaced out whilst her friends did unspeakable things. We listen. We comfort. We file reports, contribute to assessments, shout and jump up and down to get the children the help they need. 
A child who spent the first few years of life unwanted (or wanted in the wrong way) isn't going to overcome that in a few months in my house. But not am I going to limit their new experiences until the ideal forever family can come and experience them together. 
True, children do often make startling progress once they are settled with adoptive parents. Permanency can be a wonderful thing. For the child who is willing to take a chance on it. But that progress started with the foster carers. And it may take a lifetime. 
Something touched on in the C4 documentary was a fostercarer calling herself Mum to the babies she fostered. The Social Worker was critical, and it was clearly a bone of contention between them. 
I too used to disapprove. And it isn't always appropriate - many older children already have a Mum and Dad, thank you very much. But I changed my mind on this when I adopted my youngest. 
For most of her short life, she had lived with the foster carers she now considers to be Aunt and Uncle. As one child in a large family, she was used to hearing the adults called Mummy and Daddy. What rejection would she have felt, learning that she was not allowed to call them the same names? 
I was worried when she came to me. How could she learn that I was now Mummy, when she was mourning the woman she knew by that name? 
As it happens, it made it easier for both of us. Over and over again, I would console her with the words "Mummy loves you." I knew I was talking about myself. She was probably thinking of the other mother in her life at that point. But she came to me to hear me say it, and it was comfort for us both. 
I'm not fostering now. But if I was, then I'd argue children need parents. Not custodians. If you've never known a Mummy, how can you relate to a new one? But if you've known me as Mummy Tia, then you can learn that there's a Mummy Sue, or whoever else it might be when the time comes. Mummy remains a special word, and the love transfers with the title. 
The series hasn't finished yet. I know that foster carers aren't the focus, although they do feature. But I hope there is time to recognise what a vocation they have. Foster Dad summed it up this week. His heart breaks with every child they move on. But we do it because it is the right thing to do, because it is right for the child, because it is who we are. 
If you give me a child for six months, that child will not be the same child they were six months ago, and nor should they be. Time doesn't stand still, and nor do children. We stand in the gap, doing the best we can, bringing security to the children we have, and then helping them to move on. No warehousing here. 

Exploring

Sun, 05/04/2014 - 13:30
 You never know
 where a casual stroll may take you. What's hidden just out of sight The bark polished by generations of explorers
 random features
Views unchanged

random diversions
paths less explored.

Coping.

Wed, 04/30/2014 - 18:01
The story of the deaths of three children with SMA, and their mother, under arrest on suspicion of murder, has been on my mind this week. 
http://www.theguardian.com/uk-news/2014/apr/24/tania-clarence-charged-murder-three-children
That poor family. Those poor children, and their poor parents. Devastating.  
One sentence in the story has been tugging at my mind. "The couple appeared to be coping." 
Let me tell you something about coping, as the mother of children with very complex medical needs. We all cope. From the outside, looking in, you tell us we are marvellous, wonderful, saintly. Of course we cope; that's what marvellous, wonderful, saintly people do. 
You don't see the cracks forming. You look at me, when I turn up at church with both girls, and you might compliment me on how clean and shining they are, and wonder how we manage to get out of the door so easily at such an early time of day. 
It's meant well, and I do love to hear that the girls are beautiful, but in the allotted "say hello to someone next to you" slot, there isn't time to say anything other than thank you. And I wonder how you'd react if, instead of me smiling and saying "we have help", I explained that I have already been up for four hours by the 9.30 service time. That I've given ten medicines to one child, four to another, carried out several intimate medical procedures, scrubbed my hands repeatedly in a failed attempt to lose the smell of poo (and no, gloves don't really help with that), done a tube feed and wrestled with a hoist or two, dealt with a meltdown and a tantrum, dismantled overnight medical equipment in order to assemble a more portable (in the loosest possible sense of the word portable) wheelchair based day kit, thrown food at cats and fish, and attempted to throw clean clothing somewhere near my own body in the hope it'll fall together in the end. 
Then there's the hunt for the car keys, which turn up in the bathroom as one child was desperate for a catheter last time we came through the front door, the effort it takes to shut the front door, due to constant battering by power chair, and finally we are able to coordinate ourselves for the short walk to church. Where we will probably be drawn up short, stuck on the ramp, as whoever is opening doors hasn't practiced opening a second door, and so inadvertently locks it in an effort to be helpful. Believe me, if you're a greeter under those circumstances, any hint of grace and love in my smile is God's, not my own! 
So yes, we cope marvellously. Just keep the coffee coming. And keep the wheelchair space available for the child in the wheelchair. And the guitarist out of the path to the altar. 
We cope. We more than cope; I love my life and I love these girls who make my life so rich. And as news comes today of another friend's child who has had her last cuddle, I hold my girls tighter and pray I will always continue to cope, and more than cope. 
But what do you see, when looking at me? If you pass me, more than slightly dishevelled, I'll probably smile at tell you we're fine. Because we are. And in that moment, when we've got it all together to leave the house, we are loving the sunshine, and all is well. 
But coping is a fragile beast. Like the family in the headlines, our house is adapted. We have hoists, shower benches, hospital beds. Oxygen, ventilators, controlled drugs, the works. That makes this life possible, it doesn't make it easy. 
This coping, it is fragile. It comes at a cost. Hoovering your daughter's lungs every ten minutes or so gets old fast. Trust me. Thankfully, it isn't something we have to do all day every day. But there are times when it might be pretty much all I'm doing for an hour or more. And if I'm standing suctioning and setting up nebs, hunting for that perfect position and the precise dose of oxygen, I've not got a lot of energy left to quiz another child on their two times table, or admire their story. We find time, we carve out time, we make a few stolen minutes count. We cope. But it isn't always easy. 
And if I am praising some amazing homework (and Amana can write the most lovely and surreal stories about monkeys and elephants farting in the kitchen and dancing in the bathtub), whilst I'm suctioning, I'm pretty sure the door knocking chugger wouldn't think I was coping in the way I opened the door to him. And if I do somehow draw on grace to deal with him, you can guarantee all memory of that important phone call, ordering up supplies and drugs, will get forgotten until it is too late. 
It is a fragile coping. Our nurses, our respite stays, the hospice, and our carers all have a place in keeping this family on the road. As do our cleaner and gardener. And I know how thankful I am, to have access to all these people and services. They make the difference between clinging on badly and coping really well. I can stand and suction, draw up morphine and beat a frantic tattoo of chest physio, knowing that at some point, someone else will step in with some kind of support. 
Yesterday, I got a letter about a summer play scheme. It's a scheme we don't use any more, not really being suitable for either girl. But when we did use it, it was a lifeline. And it still is that lifeline for the families who do use it. Knowing that you will have even just one day when you don't have to be absolutely everything your child needs, and don't have to decide between meeting conflicting needs of siblings, means that the six weeks of summer become hard but bearable, rather than impossibly awful. 
The letter stated that provision would be more limited than in previous years, and would possibly be unavailable at all for children under 8. This doesn't affect us. But it will have a potentially devastating impact on many families. Imagine parenting a child who cannot be left unsupervised for a single minute, whether that is due to medical needs, or because said child will run off, bite siblings, drink all the shampoo in the bathroom before blocking the toilet with play dough. Or a child who may be safely left, but who is unable to anything at all meaningful without hand over hand support from an adult. 
Suddenly, and without warning, these parents have been told their lifeline might not be available any more. When they are at the end of their rope, instead of a buoyancy aid, there's an anchor. Is it any wonder some families will feel they are drowning? I wonder what caused the mother in this story to fall from her tightrope? Something as small as a letter, warning of possible changes, really can be the difference between coping and not coping. 
We are coping. And more than coping. Short staffedness and sickness mean we have had only a portion of our regular help over the past month, and none whatsoever this weekend. And it is OK - the girls are happy, I am fine (apart from this cold which will not clear), we are coping. But there have been times when this would have been enough to tip the balance from coping to not coping. Not, please God, to send me to a place as desperate as that mother must have gone to. But into a place where mistakes happen, feeds are forgotten or spilt, medicines are muddled. It's scarily easily done. 
We are fine. We are more than fine. But locally and across the country, more and more families are finding it harder and harder to cope. Benefits are being squeezed, social services budgets are being slashed, and services are being cut and rationed. Perhaps a play scheme doesn't sound very important - children can after all play at home. But when a play scheme is the only chance you have to sit down all summer, or to spend meaningful time with another child, to shop or even to sleep, then cutting it and other services like it may lead to even more cases of parents no longer coping. 
Tia


  

Friendship.

Thu, 04/24/2014 - 16:52







The healing power of this particular friendship; after a dodgy Friday, three days in a row with late nights, no CPAP, and minimal suction. And Imi's new chair means they can now reach to hold hands without help. 
Lovely. And even our vegetables were celebrating! Tia

Fairytale Farm.

Thu, 04/24/2014 - 15:28





Fairytale Farm sounded like it might be a good spot for a visit, when friends came to stay over the holidays. http://www.fairytalefarm.co.uk/
Knowing that it was designed to be accessible, we thought we might manage a trip with four girls and two grown ups without too much of a struggle. 
And we did! Smaller than its website would suggest, it is clearly still a work in progress. A nicely accessible cafe (no changing bench in the loo, but some good sized beanbags in the playroom did anyone wanting a stretch), a handily placed double socket so we could charge Imi's suction and Nippy, decent sandwiches for most of us, and friendly staff. 
The accessible playground was a little disappointing; simple things like gravel making pushing tricky, and a step for small children blocking any hope of wheelchair access to a nice rubber duck racetrack - having a moveable step or else steps to half the racetrack and not the other might have been more useful for our girls. They s joyed watching two mad mothers pump water furiously down the gutter racetracks to push the ducks along though. 
A nice wheelchair swing we ran out of time for, and a nest swing too, good fun I suspect. Lovely castle for anyone who can run and climb stairs. 
We did enjoy the sensory garden - very feely noisy grasses as well as always lovely lavender and other herbs. 
At the bottom of the playground, the animals. Ridiculously friendly goats and alpacas, a handful of miniature ponies and pigs, and snuggles with a baby rabbit. Lovely. A long walk back uphill though! 
Would we go again? Yes, definitely. It was a nice quietish place to spend a few hours. Not hugely expensive, and not pricey food. The dressing up box was a big hit. Sadly the gongs and drums in the hands of one particularly enthusiastic fellow visitor drove our twitcher pair out of the playroom, but I think we all had a good time, and we will keep it on our list of possibles. I won't be buying an annual pass just yet, though. 
Tia

Bank Holiday?

Fri, 04/18/2014 - 15:08
"So, is it like, cos it's a Bank Holiday that you're going to church?" asked our carer this morning.

"It's kind of an important day for a Christian," I replied. Possibly not the clearest or most tactful of replies, but it hadn't occurred to me that someone who has grown up here, attended primary and secondary schools here, and probably even been to the occasional Christening or Wedding, might not make a connection between Good Friday and church. Hot Cross Buns for breakfast not enough of a clue.

So for anyone else not sure why some of us might be going to church whilst you are enjoying a day off (or being frustrated by closed shops and banks), here's a quick reminder.

Today's the day we call Good Friday. The day when Jesus, Son of God and God made man allowed himself to be nailed to a cross, and chose to stay there until he died. Betrayed by one of his closest followers the night before (proving that, right from the start, his followers aren't always the nicest of people), he chose not to defend himself in court, nor to step down from the cross, but to hang in shame and pain until the very end.

On the face of it, possibly not a very Good Friday for God or man.

Or it wouldn't be, if it ended there. But at the moment Jesus died, the separation between God and man died too, the temple curtain ripped from top to bottom, and one perfect sacrifice replaced unending pigeons and bulls and constant rivers of animal blood. Grace and mercy and forgiveness replaced the Law, a law which no man had ever been able to keep since it was written back on a mountain in the wilderness.

And it doesn't even end there, with a new covenant. But in just a couple of days, we get to celebrate the fact that not even death can have victory over God. And, just as Jesus himself rose from the grave, we know that death itself is not the end, but the beginning. Something all the more precious for those of us with friends and family who have gone on before us.

The celebration is ahead of us right now though. For today we come as a church to the foot of the cross, joining in thought with those first followers, watching with them as the Lord breathes his last. Lost in awe at the love which offers such sacrifice, thankful beyond words.



Tia

Bright Ideas.

Fri, 04/11/2014 - 17:13
This is a suction pump. For those not in the know, it's a Hoover type device we use to suck snot and slime out of Imi's nose, mouth and throat, to help keep her airway clean. Sorry. 
This is a suction pump bag. It is grey, utilitarian, discreet. Subtle maybe? Boring, definitely. For the last five years at least, it has hung from the back of Imogen's wheelchair, ready for use in an instant. Life saving at times, comforting always, a part of our lives. 
The grey isn't bad. When Imi has had black and silver wheelchairs, it has looked nicely coordinated. But now her chair is a riot of pink and purple, and subtle doesn't begin to come into it. Bright girlie colours for a girl who doesn't always have the breath to shout, but who always wants to make her presence known. 
So when Carrie-Lou (from http://www.carrielou.co.uk/) asked if anyone might be interested in testing out a jazzed up version, we were first in line. 
And here it is Just in case anyone was in any doubt about who was the lucky owner: The pictures don't do it justice. Butterflies, dragonflies and hearts in tones which match both wheelchair and Love quilt, on side pockets and end pockets, and, as a special extra, a
zippered hidden pocket inside meaning I can put my purse and keys somewhere safe and leave my bag at home. 
Here it is in action on our day out today. Not the straightest or most focused or photos, but the only rear view I have right now! 
Here it is on Carrie-Lou's website. http://www.carrielou.co.uk/deVilbiss 
Carrie-Lou has also made some of the girls' button pads - check out her Minions if you get the chance! 
Thank you Carrie-Lou; you've turned something utilitarian into a thing of beauty and a joy for us all. 
Tia. 

Working Together.

Mon, 04/07/2014 - 14:36
Imogen's a bit poorly today. With hindsight, she's not had the best few days, really, but when you're busy dealing with the bad days, there isn't often time to take stock of how things are going. 
And so it wasn't until I'd finished packing for respite, and had time to sit down between folding clothes, counting meds, delving deep into the freezer, giving her nebs and suction and chest physio, that I had time to work out that she probably wasn't really well enough to go. Sitting, panting, watching me pack, was a girl with a purple face, a rising temperature, and the beginnings of a glazed panic stretched across her face. 
So I tossed her back into bed and cancelled respite. And, of course, she instantly calmed down, her breathing eased, and if it weren't for the gentle twitching and general "not really here-ness" of her face, you wouldn't know there was anything wrong. 
But we tweaked our plans; an online shop instead of a physical one, suitcase gradually unpacked and bits of kit resuming their spots in her over stuffed bedroom. 
Grannie was going to take Amana as I dropped Imi off; they went out for fresh air anyway. A phone call from the hospice, and a home visit offered right when I'd been aiming to call them to query antibiotics. A protocol being rewritten to clarify the links between hospice and community nursing. 
More phone calls then, and my simple phone call cancelling respite had set a series of links in action. Respite sent staff  out this afternoon, and Imi has been enjoying a shower, a beauty session, and some music making. She's just getting into bed as I sit and type this; respite still even if not quite what was planned. 
And more respite on the way; a seamless  linking of respite nursing and homecare tomorrow, with the offer of more help later on if I need it. 
One phone call from me, and one happily timed hospice contact, and one support package for the next two days and beyond. Others taking on the administrative work which can be almost more exhausting than the caring, taking over to ensure that my own energy can be concentrated where it's most useful. 
Result? One calm household, one child who has had a lovely afternoon even if only really semi conscious, one parent who has had a peaceful afternoon, and who has had a physical rest from caring and a mental rest from being the on site entertainment, and one little sister who is reassured that her own needs can be met. 
There was a time when cancelling respite would have meant nothing but extra work for me, when the burdens would increase right at the time when the burden was already over stretched. 
I'm so thankful for the way in which all these different agencies are working together. Not just alongside each other, but actively working together. Community respite nurses going into the respite centre. Respite centre consulting with hospice and hospital. Hospice Drs advising community staff. And me, kept informed, but not having to steer everything. It's good. 
Tia

Minster Lovell

Fri, 04/04/2014 - 03:29
A last chance to grab a walk with a friend, before the mayhem of the school holidays begins. Ruins and well-loved houses, and an ancient church. A duck with how many ducklings, oddly scared of us and trying to hide, rather than coming up and demanding bread. Which was probably just as well, as we didn't have any. The gentle Windrush, whispering a watery commentary to us as we walked alongside it for a while. And then, rising up in front of us as we turned a corner, The reminders of medieval days and echoes of former glory. What stories could these walls tell? And why, in the 12th century, did they build this manor house so close to the river and the fish ponds? A pair of donkeys as guardians. And then, abruptly, after a field of unfortunately in photographed llamas, our car park and today's civilisation. A short stroll back into the village, for a rather posh lunch and a game of musical tables. 
Then home via a rather less posh garden centre for a final cup of tea. 
A refreshingly good day. Tia