The thing is...

So here's the thing.

Something odd has happened in an internetty group, and posts from several years ago have apparently become current again. Which means that members of this group believe my daughter has just died. And have been sending messages of sympathy all over again.

Not a problem really; I don't believe prayer is ever wasted, and whilst I feel bad that people were feeling bad on my behalf without need, I wasn't unduly upset about it.

And then I read back what I'd written at the time, and I had a hunt around for a decent news link so I could post it for anyone not sure what had happened. And there is too much news, too much analysis, too little Goldie.

This is the start of the sixth year without her. Only another year to go and she will have been gone for longer than I had known her. And I am losing her. I have a big collage I made, full of photos of her and her part in our lives. And I filled in the gaps with her scribble-talk; words and phrases she loved. And some things I haven't forgotten - sneaking up behind her and whispering "Bum!" in her ear and watching her dissolve into giggles is a sweet and precious memory. But other things are fading.

I can hear a voice saying "The fing is...."and I don't know. Is it Goldie, is it a child I used to know before I started fostering? I read back the phrases I wrote down, and I remember her saying them, but I had forgotten I had written them. I hear squeaks and see toes dancing, and I'm not sure if it's Goldie I remember or one of the many children in the school where I used to work. And even as I type this, I realise that tLP has been imitating Goldie, and not a child she never knew, when she lies in bed and flaps her arms wildly to make the bed creak. She knew Goldie for just a few months as a toddler; how can she remember things I've forgotten? Or not forgotten, but misplaced in my own mind, waiting for her to remind me?

Echoes.

Before I started fostering, I worked in a boarding school for children with profound and multiple learning disabilities. In my interview, I asked what proportion of the children there died; "None" was the reply. My first key pupil had a fatal heart attack on the floor of the school hall the very first week I was there. I see her twisted smile, remember her grin as we were introduced, and her long graceful fingers pointing in an entirely different direction from her chin, which was in a different place again to her feet, impossibly wrapped around each other as they were. Or were they? Am I seeing another child in a similar chair and conflating the two?

I remember three precious children, all with the same condition, one much frailer than the others. As two wandered around, needing a bit of support and balance, this third sat back, exhausted, in an armchair carefully padded to prevent sores. The others shouted and gesticulated, whilst he just gazed on with eyes which spoke volumes. And yet he lived six years longer than the healthiest of the three. More recently, another child with the same genetic quirk also died; the genetic twists which shortened life creating a child with such similar features that it was as if those three lived again. I remember sharp-toothed hugs, but from which child?

Two girls with the same name, both so similar to Miss Mog, both very different from each other. But when Mog was a baby, I could see her future self in either of them. And she does have aspects of both of them. I see echoes of one of them in Mog's smile, and echoes of the other in her grimaces. Both now dead.

One beautiful little girl with Leigh's who I met as a child, and who helped me to see where my future would lie. A precious precious child, much loved by all those who cared for her. And again, dead too soon. I have no problems remembering her smile or the way her body snuggled in for cuddles. And I can still smell the Worcester sauce and pasta sensory bath we gave her and another equally precious little boy. I don't remember his name though.

One child we only ever met at hospital or hospice, but who we met all too often in both settings. And who is now drumming in heaven instead of marching the hospital corridors. Mog's friends, my friends, my friends' children. Children from school, children from home, child on child on child. Children I only ever knew through their parents, and children whose hair was too irresistibly curly not to run my fingers through it at every available opportunity. Children I've holidayed with and children I've lived with, and how can I have lost count of them all?

And the thing is, it doesn't end. Children get frailer, get more complex, and this is happening again. And children die without any kind of a warning, and that will happen again too. And now I have tLP asking me "When I die, will I still be able to go to school?", and a tLP who has been present at too many of the informed consent discussions with Drs who forget that she may not actually need to be present when all the risks are spelt out, and who now asks if she's going to die every time she has an anaesthetic. And she knows too many children who have died, and she knows it's a possibility, and so she fights me and the anaesthetists all the way under. And I'm not convinced I want "I hate you Mummy don't make me no no no NO!" to be her last words if it does turn out that this next bit of surgery is in fact too much for her.

But they are still here. Both my precious girls. Two out of three though really, and I'm sure the hole gets bigger as memories I thought were safe fall into it. And I am so scared that the other two will fall into the hole with Goldie, and I will lose not only them but also memories of them; the way Mog's curves fit my body, or how tLP tells me I am the best mummy in the whole wide world and  can she have a lollipop, or the smaller things currently too unimportant to even think about trying to preserve as memories. And I want to look at them and enjoy them, but I keep seeing the gap they will leave. And no, neither of them is (as far as I can tell) likely to be leaving us very soon.

Too many memories, too, of last days I think I'd prefer to forget. A child being bagged over their ventilator, deep suction on a child who had never needed any kind of suction before. Stupid disposable aprons and gloves getting in the way of comfort and touch; harsh plastic chairs and unforgiving hospital lights and pain. And why can I remember this (even when I'm thinking of something else entirely) and yet forget "achAAAAAAOOOOWWWWW!!!!!!" until I hear its echo after pummeling my mind for something more pleasant?

And how can it possibly be right that I now know more children who have died than adults, despite having a wide extended family and despite having worked in nursing homes? 

I wouldn't change this. Well, yes I would, I'd rather have my girl back I think, and if I can't, then I'd rather have some nice peaceful memories about her last days. But I wouldn't change who she was or who I am, I wouldn't rather not have known her and this army of others, however much it hurts. I'll take this hurt since it comes with such love, I'll take this life above any of the others I might have had. But just now, just this evening - and unexpectedly so; this wasn't the post I set out to write - I'm drowning.

Tia

Just for Today

Just for today, I am not OK

Autumn's beauty empty to me;

The sun, aching bright, so cold.

All around me lost and lonely

Leaves fall, no last blaze of glory, 

But tattered, decayed confetti.

Just for today, I am not OK

I crack with the puddled ice.

Knife sharp air cuts at my face.

There is no comfort here. 

Just for today, I am not OK

I will allow myself to feel

The weight of ages crushes and I fall.

I am not OK. 

And tomorrow I shall pick myself back up

put melancholy in its little box.

Put down the memories and find my thankfulness.

Tomorrow. 

More from Mog and Me

We spend quite a bit of time together, Mog and I, usually when she is unwell and the Little Princess is in school. It's nice, except the her being unwell part; tLP is naturally hugely exuberent and generally manages to ensure most of the attention is firmly fixed on her when she is around. Without her, it's Mog's choice of music, or peaceful silence. Or, of course, the suction machine, the siren song of the SATs monitor, the Grump-hiss of the oxygen concentrator and the steam train breaths of a rather poorly child. But still, it is as a rule a more restful environment when tLP is elsewhere.

tLP and I get our own time together when Miss Mog is in respite, and the dynamics are different again; freed from the necessity to compete we get silly giggly spontaneous expeditions or calm uninterrupted cuddles, and occasionally a swim, although these are trickier to sort out now that swimming lessons are back in session and pools are closed to the public after school. We get to go for walks holding hands, sneak out for fish and chips, or just sit and chat. And always, she likes to phone Mog at respite, and check up with the nurse that all is going well.

But this was a different kind of tLP free day; Mog and I went into Oxford to the Magic Cafe. And as I sat and stuffed myself silly with enjoying a tofu chana daal with cauliflower bhajis, Mog's other Mum entertained us all with a lovely selection of songs. Beautiful singing, a fine pianist, and Mog providing backing vocals where appropriate; a lovely way to spend a lunchtime. Even if the people at the table behind us seemed completely oblivious of the fact the music was live, and determined to talk on ever louder to drown it out. 

Didn't put Mog off though, although the change of pianist half way through did disconcert her a little.

And then Mog and her other mother went for another music session of a rather different kind, and I had a whole two hours to myself, to be spent pootling along the Cowley Road. Dipping into Oxfam, I found a book I'd been hearing good things about and thinking I ought to read, a copy of Swallows and Amazons, identical to the one I had loaned out several years ago and never had returned, and slotting beautifully into my newly pruned bookshelves beside the rest of the series, and a new Kipper book for tLP. And then the cashier disappeared with my books, returning after five minutes with an apology, and a discount as one had been wrongly priced. Hurrah!

A bit more of a wander, and the shops began to pall, so I slipped away from the traffic and into one of the more peaceful spots on this planet.

Closely supervised by a very nosy, but very upside down squirrel, I meandered through the churchyard and cemetary

propping myself up on a tree trunk to read a few chapters of my new book

and enjoying the beauty, and the greenness, just a solid brick wall away from the hustle and bustle and fumes of the roadside.

It's an odd place really. Where else would you find four bicycle shops all within a few hundred yards of each other? Twelve different barber shops, cuisine from around the world, little shops selling okra and yams and sharan fruit and rice, university students and staff and young families, two hospices, a couple of convents and some very adult shops and bars, all side by side with this peaceful woodland memorial churchyard and cemetery in the middle?

Old graves and newer graves, beloved husbands and mothers and children. And this:

"Not forgotten", says the inscription at the bottom. And, louder than the words, "Not Forgotten" proclaims the geranium clipping newly placed in a neat little pot. Not wife and mother now, but daghter and sister? Brother and son? Two deaths nearly a century ago, and someone still remembers. I hope they have the comfort of hoping for a reconciliation.

And so I think of Goldie. I don't visit her grave; she is not there; it is not a site which has much meaning for me. And it is, in any case, far more important to her other family, and it would only cause extra grief if we were to meet there unexpectedly. There are other places which are far more Goldie-ful than one small slice of earth. We will meet again one day, and what an amazing meeting that will be. Meanwhile I'll catch her echoes along school corridors and in quiet spots at church, in photographs and with friends and in the sudden wave of recollections which wash up,  released by a phrase or an expression or any one of a hundred unexpected things.

Never Forgotten.

So I paused to photograph the marker, and then paused again when I came to write this as to whether I would include it. It is, after all, someone else's story and not my own to tell. So I hope the flower-giver, the rememberer, will forgive any hurt if I have intruded upon his or her grief. And I hope those friends I have to do visit graves - and how can it possibly be that I have more than one set of friends who nurture a too-small grave? - will also understand that I mean no disrespect by not visiting, and cast no criticisms their way either. We just mourn differently. 

And then, because life's like that, and because time runs on even when it feels as though it has stopped, I walked back to one of the hospices, collected a happy singing Mog, and drove back home, picking up a very contented Little Princess on the way. And there was tea, and there were bedtime routines, and there was much silliness with the cat, and it was a good day.

Tia

On the move?

We've lived here for a while now. Nine years, almost to the day. This has been The Little Princess' address ever since she moved in with me, and it's been Miss Mog's since she was 15 months old.

We moved out of our old house because, beautiful though it was, it was not suited to the needs to two wheelchair users. Into our old house moved a family whose previous house was not suitable for their disabled daughter. And into that family's previous house moved another family, whose former house was not suited to the needs of children with disabilities. All change. And all, as far as I know, happy in our new homes - certainly, none of us have moved out just yet.

One of the first things to happen when we moved here was the installation of overhead hoists in what was then Goldie's bedroom. In what would turn out to be an interesting sequence of events, Goldie had been scheduled for a minor op the day after we moved in. This minor op had the unintended consequence of landing her in bed for more than a few weeks, as her healing was somewhat slower than anticipated. And so it was that the installers had to work around a bedbound Goldie, creating a den for her in her own bedroom, barricading her into a corner with her wardrobe and chest of drawers, draping a canopy of dust sheets over the bed as they drilled and hammered, and took eight hours to pound their way through a significantly more complicated than anticipated ceiling track installation.

She loved it - mammoth amounts of noise and chaos and confusion, and a captive audience for her retelling of the Three Little Pigs and "Gordilocks and the Three Beers."

I'm not sure they were quite so enamoured of the experience.

But still, eventually it was done, the hoist was installed, and over the next few years we would gain further hoists in the bathroom, Mog's bedroom, and playroom.  Each of these hoists would be serviced every five to six months, and so over the years we've had a number of different hoist engineers bringing slips to sign to prove their presence. Goldie's room became the Little Princess' room, green and gold moved via an underwater phase to its present extreme pinkness, the names on the forms changed, but the engineers have stayed largely the same.

And now, to facilitate tLP's independence, the hoist in her bedroom needed to be swapped from the standard button for up, button for down, pull it along the tracking to slide left and right type of hoist to one with four buttons, so she can slide herself left and right. I'm not entirely certain I like the idea of her being able to get out of bed by herself, but I suppose we can't put it off forever.

I had a letter a few days ago, informing me that the hoist would be swapped shortly. I had a phone call yesterday, confirming that the work would happen today. And then today, I had a phone call from the engineer, claiming to be standing outside our house waiting to be let in. Except that he wasn't; he was standing outside our old house, the one we moved from nine years ago.

Somehow, despite the letter having been sent to this address, the company have my old address listed as tLP's current address. I'd think this was simply outdated records, except that tLP has never lived there, so someone must have manually inserted that address into her file.

And then let's add Miss Mog's current address confusion; one branch of the hospital appears to believe that she lives at her respite centre. Medical records claim the only way we can change this is for Mog herself to write in with her correct address. Again, this is not an address which has ever been Mog's address, meaning that someone has taken the time to update the records, incorrectly.

Somehow, independently of each other and myself, both girls now have alternative addresses. I wonder if someone is trying to tell me something?
Tia

Stanker

Tonight, I am, once again, a STANK. I am stanky for opting for evening routines and bedtimes instead of unlimited Cbeebies, and Stanky for banning another repeat of Justin's House, and very very stanky for insisting that hands are more or less wiped with a flannel to at least attempt to remove some of the glitter paint used at Rainbows. And I am a stanker stanky stinkstank for wanting Mog to be able to enter the sitting room instead of being parked blocking the front door. But I am also apparently a lovely precious Mummy and MY Mummy and I need endless kisses.

Turbulent times. I'm not looking forwards to the teen years.

Happily, Mog finds this entertaining. Which is good, because she'd otherwise get lost in the battle. I am after all the biggest stank of all for taking "GO AWAY AND LEAVE ME ALONE" as a cue to go and get Mog sorted and into bed. How unreasonable of me.

It's been one of those afternoons. And I can't help thinking that actually, I probably am a bit of a stank, even if not necessarily a stanky stinkstank. Because most of the stankiness could have been avoided. tLP was expecting to come home to a sausage sandwich. I didn't make (or buy) bread, so she had sausage and potato instead. Change bad. Sweet potato even badder. If I'd moved a little faster on the way back from Rainbows, she wouldn't have run into the backs of my legs, and I wouldn't have shouted. If I hadn't been grumping about having just been run over, I would have been able to pre-warn tLP that her next move was to park her chair and hop into the bathroom. She needs warning of imminent lack of Cbeebies. Change, as I may have mentioned, bad.

And if I'd spent the day differently there would have been nicer things waiting for her. If I'd spent the hour she was at Rainbows differently, then at least evening drugs would have been drawn up, evening feeds set up properly, and the long distance Take your jumper off/YOU ARE A STANK cycle could have been swapped for a friendlier, more cooperative getting ready for bed closeness. But instead I mooched around and made "waiting in for deliveries" into an activity in itself rather than doing anything vaguely useful whilst waiting. And Mog had a music and bubbles day - pleasant for her, but perhaps a waste of a nice awake without attention-grabbing sibling day?

And now the girls are in bed, and the stankiness of the day was relieved somewhat by the snuggliness of the evening, and huge and vast sighs of relief all round at jobs done, routines over, and the gentle hum and whirr which passes for silence in this house. And I'm sitting here stewing over my own inner stankiness, frustrated that one of the deliveries didn't turn up, and annoyed that I think I've recycled one of the smaller deliveries without actually removing the delivered item from the packaging first. Is that stanky or just stupidity?

And I'm thinking that four years ago today we buried Goldy today. And we've tried to commemorate her life in various ways. Friends bought us a tree - it died. We bought some cats which linked to other parts of Goldy's life - and one of them died, and one of them is now not stanky but decidedly stumpy. And there wasn't even time or thought tonight to eat a Goldy Pizza. And I know she wouldn't care - if she wasn't eating it herself then there wasn't much point to it. My purple-headed pizza eater, we have for the past few years enjoyed troughing doughy slabs in her memory. I think perhaps forgetting her funeral pizza might count towards further stanky behaviour. It's also just possible that deciding to move her out of our house and into the supported living placement which ultimately caused her death is pretty stanking too.

So there you have it. A few of the reasons why I am in fact a Stanky stinkstank. Mog could, I am sure, add to the list. I'm reasonably certain she think's it's very stanky of me to object to her midnight singing. I think tLP is right. I am a stanky stinkstank, a stanker and a stank.

Which is precisely why I am so thankful for this

Stankfully yours,
Tia

Would you rather?

WARNING: This is NOT a post for the weak-stomached. Non-carers may wish to back away now.

So, Sunday morning, there I was all dressed up for church, and then there I was, with the elderly contents of a suction pump cascading down my back and into my pants.

I thought I'd reached a new low. There's something about cold bodily fluids, so much more unpleasant than ones still at body temperature. Reach round into a wheelchair to straighten a child's hips and come up with a hand coated in poo? Annoying (where are those spare wheelchair covers?), but not too gross. That squidgy warm sensation when you realise the child on your lap has just overflowed their pad? Ho hum. Even the great tidal vomit of 2004* was somehow less disgusting in its freshness.

Stale suctionings were, I thought, a new low point. Until today. I emptied the nappy bin. The liner in the bin split as I was emptying it, and somehow, a used anal catheter leapt out of the bin and hit me in the face.

So my question for today is, which would you rather?
My supplemental question would be, anyone want to come and look after the girls whilst I go on holiday somewhere far, far away from here, with endless hot water and expensively luxuriant bath foam?

Tia

*The Great Tidal Vomit.

Long ago, when Mog was just a little wee thing, she used to sit on a Tumbleform on our kitchen table. Wedged between the wall and the 'fridge, she was beautifully safe, and perfectly placed to join in with our mealtimes. Goldie used to sit facing her, and I'd sit between them, where I could slow Goldie's eating down and try yet again to wedge another teaspoon of mush between Mog's reluctant lips.

We had savoury rice one night. Mince, rice, cheese, veg. Nicely prepared, deliciously scented, reasonably mashable, and apparently good enough that Goldie wanted two big bowls of it. Possibly a touch over seasoned; at any rate Goldie was also extremely thirsty and had a couple of drinks too.

Meal over, I pushed Goldie away from the table to reach around her and wipe up the debris. It was at this point which Goldie opened her mouth and poured forth not just two helpings of savoury rice, but also her lunch, and even the Weetabix, toast and poop goop she'd had for breakfast that morning. Together with all the drinks she'd had for the past 24 hours. With impressive velocity, she managed to hit the opposite wall. With remarkable spreading capacity, she managed to coat myself, the table, the floor, and the 'fridge. Oh, and herself too.

Mog, showing early promise for the daintily elegant child she would grow into, sat quietly beautiful, Piedro-booted feet tap dancing gently in the ocean of vomit, the rest of her totally untouched and apparently unaware and above such things.

Where do you start? Dripping with vomit, I stripped myself off rather than spread it further. I then stripped Goldie, and used the cleaner bits of her and my clothing to do an initial mop up. Depositing Goldie on the shower trolley, I hosed her down, mopped the floor and finished sorting the cupboards, and then, shivering, opened my bedroom door to find myself some clean clothes. I flung the door open and walked into my room. Heading for the wardrobe, I approached my large, ground floor, window. And realised that much of the population of two local secondary schools was walking down the road, staring back in at me. Dropping to the floor, I commando-crawled across the carpet, reached up towards my wardrobe and blindly tugged at whatever I could reach, throwing it on ducked down under the window and then attempting to gather what little dignity I had left and walking out of my room without a backwards glance.

I bought net curtains the next day.

22

My candle burns at both ends;
It will not last the night;
But ah, my foes, and oh, my friends--
It gives a lovely light!

Happy Birthday, Goldie

Because it bears repeating

Are you a carer? Something not quite right about the place where you work? Missing equipment, water too hot, lacking training? Don't sit on it - speak up and if your managers don't listen, go over their heads.

Are you responsible for bathing someone who can't bath themselves? Test the water. If there's no thermometer shout loudly (or buy one). If you're using your hands, take the gloves off.

Are you caring for someone and realise there's been a terrible mistake and the person you are caring for has been badly burnt? Get them away from the heat and under cold running water and keep them under that cold water until help comes.

Are you a parent or decision maker considering Supported Living over a more traditional Care Home environment? Fewer regulations and more freedom and a more homely environment is great, but bear in mind some of those regulations might just save lives, even if they're cumbersome and unwieldy the majority of the time.

Are you a manager? Consider that emergency first aid possibly ought to be a priority when training your new staff; if the unthinkable happens you want your staff to be able to act without thinking and act in the right way.

And are you hospital staff? Please review your policies and allow Foster Carers to be considered Next of Kin; it is just possible that the woman who cared for the injured adult for 7 years might know that adult better than the carer who has only been with her for a handful of days.

Tia

Hanging around

The only thing better than swinging in a hammock tied to a tree by a river
Is swinging in a hammock tied to a tree by a river with your sister!
Housegroup barbecue today. A summer social, and a chance to say goodbye to friends who are moving away.

About eight years ago, I was walking through our shopping precinct with Goldie. Goldie was doing her usual "I'm excited about the possibility of eating a burger" thing; squealing and rocking and waving her hands up above her face, grinning and giggling, and generally being loud.

A few shops up from us, a little boy stopped. "LOOK, Mummy!" he shouted, pointing at Goldie. His mum looked, embarrassed, wondering what her son was going to say, as he chatted on at the top of his voice. She held his arm and encouraged him towards their next shop, but he turned around anyway - "no LOOK, Mummy! There is MY FRIEND!"

He's a bigger boy now, and he's moving away, with the rest of his family. On to new schools, new lives, new friendships. And I'm sure he'd be dreadfully embarrassed to be reminded of his three year old self. But he won't be forgotten.

Tia

Lasting impressions

Playscheme today for both girls. An empty house - bliss.

Playscheme happens in Mog's school, which was also Goldy's school for a while. For a long time, Goldie's pictures lined the corridors - photographs of her riding her trike in the snow, doing some "traditional Tudor wheelchair dancing", taking in part in Christmas plays, just generally being part of the school. Over time, the coridor displays have gradually changed, swapping the class of '05 for more recent displays.

It's got harder walking down the coridor; I know memories aren't erased as the displays are replaced, but they're photos I don't see at home, different pictures, different glimpses of wild hair and shiny eyes and glee glee glee. Last time I walked the coridor, the last photo had gone, school well and truly moved on. As it should; it would be a little hard on the newer children if their achievements were never marked. But still, a little difficult to be reminded there won't be new memories ever.

And so today I collected the girls from playscheme, coming not down the main corridor but through the pupil entrance. A few minutes early, I paused to look up at the mural, made a few years ago, when Goldie was a pupil. It's not a picture I get a close look at very often; parents don't tend to use that entrance. I hadn't appreciated the trees and grass were made using pupil handprints, although I do remember the whole school being involved at the time. Looking closer, I realised all the handprints were marked with their owners' initials. I also realised there were an awful lot of children whose initials I couldn't translate into names. But, tucked in amongst the DCs and JWs was one set of initials very familiar and totally unique. So her face may have gone from the walls, but I think it's fair to say she will always have a hand in the school. That'll do me.

Tia

Good News, Bad News...

The good news is, Mog's CT scan was today.
The bad news is, the hospital forgot to tell us.

More bad news; the van failed its MOT yesterday.
More good news; only on brake pads and the garage will fix them tomorrow.

Little Fish is having driving lessons this week. There's a worrying concept. Whizz Kidz are running a three day course for wheelchair users, and she's getting to join in. Getting there with her various chairs and Mog is interesting without our van.

We called a taxi this morning; just as it arrived the phone rang. A neurologist wishing to discuss sedation for the CT scan we didn't know Mog was having. Frustrating. But, more good news, they can rearrange it for next week, and have found a day when our only other appointment is at 9.20. So now all I need to do is find a way of keeping Little Fish entertained whilst we photograph the inside of Mog's head.

One hugely tiring day. Lots of concentrating for Little Fish, lots of waiting around and cheering loudly for Mog and myself. New friends, always nice. And old acquaintances; bittersweet as I had to break the news of Goldie's death to one of her old classmates.Huge giggles for Mog who chose the most inappropriate time possible to create a noxious code brown cloud; not the time to discover I'd forgotten the wet wipes. And who on earth puts just one changing bench into a building designed for people with physical disabilities, and who then puts that changing bench into a giant room without a loo or sink?

Home via taxi again, making the decision to leave Little Fish's powerchair there overnight. Rethinking that decision when the taxi was forty minutes late; my arms may never recover from the wait.

One small child very tired, one medium child equally tired; two girls into bed and then a builder here to come and look at finishing the many many jobs our other various builders have not completed.

A Little Fish-ism - "Mummy, I wear my shrink wrap tonight?" Shrink wrap? Shrink wrap? Ah yes; chin strap!

Tia

To Dream, perchance, of sleep

Sadly Friday night was not repeated. I thought I'd had three hours straight Saturday night but but it was 2 hours plus an automatic loss of hour due to British Summer Time. Side note: how can it now be BST when they're still predicting snow later this week? Ridiculous.

And last night? Last night Dad and I spent four hours assembling the flattest of flat packs (you know it's not going to be a simple job when there are 20 different kinds of screws, and the flat bits are labelled not just A-Z but then move to AA, AB, AC, etc right the way through to AM), creating something rather fabulous for Little Fish, but not finishing until nearly midnight. Photos to follow when she's had time to see it for herself.

Meanwhile Mog decided to keep life interesting, alarming and needing repositioning at 9.30, 11.30, 1.20, 2.30, 3.20, 4.00, 4.20, 4.30-5.12 (oops slept through that one), 6.10, and 6.50. And Little Fish decided to reflux somewhere around 4AM, obviously keen to ensure she wasn't ignored overnight. One sheet with nice neat coffee grounds on it, one stomach full of air; deflated, she then slept through til 8. Now why couldn't she have done the sleeping late bit over the weekend?

Photos for Tina - sorry I didn't get them to you before bedtime but there were one or two things grabbing my attention!and with the chin strapFull Face mask photos not here yet as still waiting for replacement full face mask - come on, Mr Postman.

It's not as if I'm not used to being awake at nights. Goldie used to have a monthly sleep cycle - awake all day and night at the top of the cycle, and asleep for a week at the bottom. Somewhere in the middle a happy medium. But even on her most awakiest of nights she didn't actually need me. She'd lie in bed, fizzing over with the joy of being alive, waving her hands in front of her face and ScrEeEEEEeeeeEEEEEeeeeeeEEEEEEEEEching, and rocking the bed so that we had to move it into the middle of the room. And, barring the odd occasion when she'd call for me*, most of the time she'd just entertain herself. So I'd shut every door between her and me, stick a pillow over my head, and be thankful that she was happy. And try hard not to care about how noisy happy was. This is less fun.

And now excuse me, bed is calling.
Tia

*My favourite night time memory; being summonsed in our old house, which meant staggering down a flight of wooden steps from my room to hers, not pleasant in the depths of winter and never fun at 4AM. I walked into her room and asked her what she wanted. It's possible I was not terribly polite. And she grabbed my hands from her bed, and lifted her head up to call "you put your left hand in, your left hand out, OOOOooohhhhh the Hokey Cokey!" Hard to be cross about that really.

It is finished

It's not about the sentence, it's not, really, about who is to blame. It's about raising awareness of what should be a self-evident risk, and hopefully about ensuring this never happens again.

Tia

Twenty One

Today would have been my Goldie's twenty-first birthday. I don't have to wonder how we'd have celebrated; I know there would have been pizza, chocolate cake, candles and nursery rhymes. From her first birthday with us to her last, this is how she chose to celebrate.

Presents weren't really relevant to her, although if they had shiny paper or were exact duplicates of things she already had then they'd probably go down ok. People were important to her; her best present was your presence.

Well, now we're here and she's not, but her favourite pizza place still is, and so we had pizza for lunch on her behalf.

Happy Birthday, my beloved Pizza-Eater.
Tia

Two years on

We buried my Goldie two years ago today.

The collage I made for her funeral is still hanging on its temporary nail in our hallway; I should probably either decide that's really where it needs to be and hang it properly, or else decide what else to do with it and do it. I think it needs to stay really; it holds so many memories.

I can still hear her, you know. Shopping sometimes, I am sure she's squealing in the next aisle and then I remember she can't be. I dreamed the other night we were all running dreadfully late for something (not a rare occurence), and that we'd forgotten to pick her up. Things were getting impossibly tangled, and we were getting further and further away from collecting her. And then I woke up, and realised we weren't late for the appointment at all, and I still had plenty of time to call her carers and arrange things. And then I picked up the telephone and scrolled down to her number, and then I realised I didn't need to make that phone call after all...

Her phone number is still in my telephone. I thought I'd lose it when I switched phones, but somehow it travelled on the SIM card and is still there. How do you delete it? How do you not?

Today the Health and Safety Executive officer who investigated the circumstances surrounding Goldie's death phoned me with a date for the final part of the investigation. It'll be two and a half years since the accident, and the very last official part of her story.

It might be time to take down the order of service from its resting point on the kitchen window sill. Then again...

I wish, I wish Little Fish had had more time to get to know her biggest sister. I wish I had a decent photograph of all three girls together. I wish so many things about her last few months. Do I wish I'd known? An impossible question; if I'd known we would have so little time I'd not have agreed to her moving out; if she hadn't moved out she wouldn't have had the accident and so then she'd still be here.

Doesn't matter what I wish though; she did move out; I pushed hard for her move for so many reasons, and then she died. And then we all sat around and waited, and waited, and eventually we were allowed to have a funeral and then we buried her.

And in the three months between her death and her funeral I sat and hoped that having the funeral might help bring some kind of relief. And it did, sort of, but the pain and loss and separation was of course still there. And then I hoped the inquest might help. And then I hoped the court case might feel like some kind of an ending. And now this last piece of the official process, and I can't imagine that'll change things either.

It isn't all doom and gloom. I can't imagine Goldie being terribly happy amongst doom and gloom. In fact I know she'd have hated that; she didn't like people being upset around her, it frightened her. And I can't imagine her sitting quietly whilst people talked of her in hushed voices; she'd get the giggles and squeak, and shout out lines from her favourite stories.

Echoes in my mind - "That was absoLUTEly perfect, and Baby Beer SQUEAKED...Time to go home, come on, AMEN!"

I hope she's having fun today.
Tia

Flashbacks

Out today, and a child (not mine) was burnt. Scalded with hot coffee. Instinct takes over; clear a path to the nearest cold water and toss her in it. She'll be fine - shock more than damage I think. New (dry) clothes and an icecream did much to repair the damage. Pink knees which will no doubt be a little tender, but looking no worse than sunburn. A complete accident.

She'll be fine.

Me? I'm back at the end of the phone, hearing that there's been an accident. I'm back in A&E, being told that I can't see Goldie as I'm not next of kin. I'm watching a doctor assess her, looking in disbelief at the sheer vastness of her injuries. I'm with her in an ambulance, driving miles over bumpy roads to the nearest burns unit.

I'm trying to split myself in two, needing to be here at home and simultaneously 120 miles away. I'm trying to contact family on holiday overseas, I'm trying to give staff lessons in how a very profoundly disabled individual might demonstrate pain.

I'm watching my daughter inpain more than anyone should have to endure, and without the understanding as to what has happened to her. And I'm standing by her bedside watching her die.

And I'm looking at the damage done by boiling coffee, and comparing it to the damage done by a cooler, but still too hot bath.

I'll spare the details.

But looping, round and round, still images from the week. And I want to fit thermostats to every tap, ban kettles and hot drinks andbaths and open fires and boilers and going outside in sunlight, and ovens, and anything else which might cause anyone to suffer as she did, anything which might put any other parent where I was, watching the damage. And it isn't going to happen; I need my coffee as much as the next woman; I like my baths as much as anyone else, and turning nocturnal isn't terribly practical with small children.

So, deep breaths; move on. Children to feed and entertain and medicate and care for, a house that won't clean itself (I have offered to pay it but it won't listen), distractions everywhere if I can but pull my head out of this loop.

It's there still though in the silent spaces.

Tia

Two years ago

Two years ago this week my Goldie moved out of our house and into her own, the first young adult to move into what would become a shared Supported Living house. Not a Group Home, but her own home, her own tenancy with her own staff to support her. Better than a Group Home, we were told - and still believe - more freedom, fewer regulations, and better funding leaving more money for holidays and general life enhancers rather than just the basics.

Two years ago this week, Little Fish and Mog and I were spending all day every day giving Goldie's new carers a crash course in Goldie. Goldie herself was wildly excited by all the attention, a little overwhelmed by the huge change in her routine, and totally lacking in understanding about the permenancy of the arrangement.

A brand new house with keen new staff, lots of kinks to work out but masses of enthusiasm to do so.

Somehow, just six weeks later, the unthinkable happened and my beautiful Goldie had her hideous accident. Two years later, I believe we now know as much as we ever will about the how and the what and the where and the when. And the why is something we'll never know. I'd like to tell her story. But still the legal process rumbles on; inquest over half a year ago and now the prospect of a criminal court case later on this year. And still the need to keep events fresh, to preserve my account to produce in court when needed.

I have no interest in this court case. My daughter died. I miss her. I chose to move her into her new home - or at least I chose to move her out of my home. I'm still reasonably sure it was the right decision. But the fact remains, if I had not, if she had stayed with me, she would probably still be alive today. My part in her death doesn't call for Legal proceedings to be taken against me; how can I be involved in prosecuting others who may have paid a part? And whether or not I play a part in this, once this is all over, she's still dead. So what's the point?

Tia

Nine

Nine years ago today, Goldie moved out of her respite home and into our family. At eleven, she was just about small enough that I could carry her on my hip (short distances only!). Once she realised cuddles were allowed, she clung on like a limpet as we got to know each other better.

After a perfect attendance record at school, she decided home life was good, and despite her profound disabilities developed the ability to fake illnesses. Time and time again I'd get a call to collect her, limp and sorrowful, from the classroom, only to have her bouncing off the walls as soon as we got home. She blew her cover one day by not even waiting until we were safely in the bus. Instead, she started singing as I pushed her down the corridor, running straight into the head teacher. We bought the class staff a thermometer after that; if it showed a fever I'd come and collect her, otherwise they'd tell her "nice try" and she'd have to sit it out.

She shot up those first few months, filled out, and lost her little Orphan Annie looks. Not that there was anything at all wrong with the care she was receiving where she had been living - it was just that capital H thing. There's a world of difference between A Home and home. She was finally home, and she seemed to know it straight away. Even during our introductions she would start shouting when the care staff turned up to take her back.

She wasn't the easiest child to live with, but she was definitely very easy to love. Her needs were relatively simple - her stories, her music, her structure and keep it coming. Once we her minions realised our place in her world then everything was wonderful. Try to pull Goldie out into the world the rest of us lived in and then you'd hit more problems. But she was always happy for people to enter hers.

Nine was Goldie's age in the first reports I read on her - she was eleven when she moved in.

And nine is Little Fish's nemesis - she can do four and six piece puzzles now, but the edgeless middle piece confuses her.

Tia

Pieces

Little Fish moved in with us forever in January/February 2007. Back in September 2006, she visited with us for a fortnight whilst her regular fostercarers went on holiday. We were still working on getting our approvals sorted out to adopt, so having a chance to get to know her as a baby still was great. In preparation for her coming, I made a nice soft snuggly blanket.

And then she didn't want the blanket, and it dwarfed her, and Mog loved it, and I made something else for Little Fish and Mog adopted the blanket as her own. Two years on, she still wears it to school every day, snuggles under it when she is ill, uses it as a pillow at the hospice - I'd say it was definitely meant to be hers.
Which is all well and good, and Mog had a smaller blanket made by a friend which she had outgrown so which became Little Fish's when she moved in. And the girls have beautiful Project Linus quilts, and we have a small stack of crocheted blankets courtesy of my late Grandma, and a pile of fleecy ones given as presents. She's not been deprived.

But, for the past few nights she's been smuggling Mog's blanket into her bed at night. And asking for "me blanket same Mog". And asking "you make me blanket yet?", and not wanting any of the others.

So yesterday we shopped for fabric. Always fun. Little Fish said she wanted red and yellow, so naturally we came away with this:
And it's a long way off being finished, and it's definitely not perfect (I do not like cutting and piecing. Unfortunately, this shows). And it's so far off being anything like Mog's that I hope she doesn't reject it as not "me blanket same Mog".

But it's a start.

In amongst all this cleaning I am realising how much everything has stalled. It's not just the sorting out Goldie's stuff. It's the realisation that although I have walls of photos of Goldie and Mog, I have only printed out half a dozen of Little Fish, and only framed half of the ones I have printed out. I have dozens of nice pictures of Goldie, Mog, and myself; I have lovely photos of Mog and LF together, nice ones of Mog and I, and nice ones of LF and I. But no decent one of Mog, LF and I. And I have avoided getting one taken, because Goldie can't be in it too.

We can't stay stalled forever. Sooner or later things have to start ticking over again. It's been a bit of a shock really to see how much I have stopped, when I thought that actually I'd been keeping things moving along nicely.

The new blanket is a good place to begin, I think.

Tia

Stalling

It's hard work, this cleaning stuff. Not just physically hard, but emotionally draining. Every pile of clutter contains something to remind me of Goldie. What's important, what do I need to keep? And what to I need to let go?

I have a box of files relating to her education - they're irrelevant now; they can disappear. I have bags of bits relating to her medical stuff - copies of old reports, out of date letters, they can all go. Christmas cards, Easter cards, Get Well Soon cards; all these have gone. But for some reason letting go of the Birthday Cards is harder. Goldie's Birthday was near Christmas; as far as she was concerned, Christmas was just one long celebration of her own birth and life. Cake after cake after party after party; how many other children have the whole school hold plays and concerts in honour of their Birthdays? Short of confidence, she was not! And so many people who didn't see her very often used to send her cards. I saved them all, planning to put them into her journal one rainy day.

Well the rain came and the hot floods rose, and the book never got finished. And I'm not sure that I want to finish it now. Ending it with her Birthday cards would be false; ending it with sympathy cards and funeral cards would mean either drastically editing them or else having more than half the book be about her death instead of her life. So I'm stalling on that; a handful of birthday cards is not the mountain of clutter which had overtaken this house before I started.

Photographs. So many photographs. A computer full of them, a hard drive filling rapidly, and so many printed off. Many which I printed for her funeral collage and then didn't use. I have electronic copies; I don't need the physical ones. A few I could frame, but to frame them all would be to fill even more of our walls with Goldie Composites; and whilst her smile was pretty spectacular, I don't really want this house to be a shrine to Goldie. An Album might be sensible, but do I really want an album full of rejects? And yet, to throw them away means sorting through them carefully; double checking that I do have the digital copy and haven't confused my own photos with gifts, and it means doing it at a time when the girls aren't around so Little Fish doesn't get cross with me. She likes sorting through Goldie photos. Maybe that's reason enough to keep them still in their little box, watching the numbers of them slowly drop as they get chopped up, scribbled on, dribbled on, and force fed yoghurt. And it's only a little box, not as if it takes up too much space, right?

Unused emergency personal casette players. Who uses these any more? Goldie used to get through one a month; one a week in holiday time. Not just chewing through the headphones (got a fair few of them too) but clattering them to the floor and munching on the buttons and dribbling into the battery cases. And they're only small packages, they don't need much room...

Back up voices from Elmos past. Goldie loved a particular singing Elmo. Only one type, only one song, and only one particular version of that one song. No substitutes. And again, loving destruction rate fairly high. The bears seem to have disappeared (although I think there may be three lurking in my bedroom somewhere), but the guts, the noise boxes, are stacked behind my knitting needle boxes. And they're Goldie's voice - how can I throw them away? And yet, how can I bear to let anyone else play them?

More photographs. A gift photograph. Not a beautiful photo necessarily, but a representative ragamuffin photograph, a happy smiling relaxed Goldie chilling out in her new home, Elmo beside her, legs all over the place, hair wild and hands dancing. Precious to me because it is proof that she was happy even when I wasn't there. That's reassuring. And only one copy, so important to keep it safe.

In another pile, an unused photo frame. Not a perfect match, but the right size, good and solid, and nicely protective. It is as I slide the photo into the frame that I notice the date. It is dated the evening before Goldie had her accident. It is, therefore, a photograph of her last whole day. The last day she danced without pain, the last day her body worked in the way it worked for her, the last day she sat up or sprawled on the floor or ate or drank or did anything but suffer. The last day she wore clothes.

And I lie; it is a beautiful photograph.

And my heart hurts.
Tia