Tuesday, 22 July 2014

Quality of life


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.

Wednesday, 9 July 2014

"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.

Monday, 30 June 2014

Lands End to John O'Groats, via Facebook.

 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.

Thursday, 19 June 2014

12.

video
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. 




Thursday, 12 June 2014

Dragonfly day.

Everywhere we stepped, blue damsel flies underfoot. 
A cuckoo in the trees
Big 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. 

Sunday, 8 June 2014

Gulp

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



Wednesday, 4 June 2014

14

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. 

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