I don’t think there can be many worse experiences than having your son (with epilepsy) drown in the bath in a secure NHS setting.

But then, instead of being able to grieve ‘in peace’ (not that I can ever imagine feeling peace again), we have to deal with the monster that is the NHS and the procedures that kick into action when something like this happens. And this is fucking hideous.

This state run organisation, supposedly built on the premise of care, is able to investigate its own cock-ups and, at the same time, grind bereft, shattered and exhausted families to bits. How can this be? I’d heard terrible, terrible stories from other parents but thought timing wise, given all the recent talk of change and reports into the way the NHS is run, there would be some improvement in the way in which it deals with unexpected deaths.

Well you can chuck all the post-Francis, post-Keogh, post-Berwick talk in the bin. Post-my arse. So many cliches spring to mind thinking about these reports. Wind, pissing, paper, written, teapot, chocolate.. endless. Simon Denegri nicely illustrates how the language of these reports suggest inertia rather than action. Yep, inertia, surely a central feature of a monolithic structure. Oh, and you can lob ‘post-Winterbourne’ in the bin too while you’re at it. Given LB died in a treatment and assessment hellhole.  Empty, meaningless statements of change. Almost embarrassing really.

We (stupidly – well more me than Rich to be honest) thought that we were being listened to. That our concerns and our lack of confidence in an internal [yes, really, internal] review were taken seriously. Our CID guy even forwarded the link to my ‘letter to the internal reviewer’ to the person leading the review. Love him. The acronyms disappeared, LB was called by his name. And the Trust introduced some innovative levels to the review. Innovation Simon, not inertia. Some comfort. Movement in the right direction.

And then, yesterday, an about turn. Innovation suddenly reduced to a shell. A complete sham. It was a rug, feet situation. We walked round for the rest of the day reeling and raging. Truly battered. Our son died while in the ‘care’ of this organisation. And now, this same organisation is wielding a level of power over us that is astonishing in its wrongness. Astonishing in its hypocrisy.  Astonishing in its cruelty.

I went into the kitchen and was a bit taken aback. A black marble bridge type structure divided it in half. With small arches to the sink. There, sitting at the kitchen table, wedged in next to this new feature was LB. Wearing a bright red, knobbly knit jumper and red striped shirt I hadn’t seen before. It was a bit of a dodgy combo but he looked a complete chill pill. That cheeky half grin on on his face.

The next moment, he was standing next to me enduring the biggest hug I’d ever given him. He was never a hugger, love him. He chuntered away under his breath as usual.

“Do you like Irish lorries, LB?” I asked him.
He grinned.
“I love you matey”, I said.

States, rather than stages, of grief are becoming recognisable. I’m going to describe these here to chuck ’em into the general mix of grief discussion and well worn (out) Kubler Ross type models.

My fledgling states, in no particular order;

1. Delayed. A state of ok-ness. Open to distraction. Ability to function reasonably well. Happens in social/work situations. Able to have a good belly laugh. [Good.] Tends to end with a need to find some space to cry, to hold on to some memory of LB.
2. Intermittent. A peculiar dotting of terrible but fleeting grief moments that happen in the instant. Without warning. Generating a strange, dissatisfying, strangled cry without tears. Kind of easy to recover from, in terms of picking up where I’m at. Wearing and unexpected.
3. Raging. A star spangled, expletive drenched anger. Directed at the health and social (non) care LB received.  A constant and harrowing emotion fuelled by the contrast between the extraordinary (and unrecognised) level of care we (like other families of disabled kids) provided and the ‘care’ he received from health and social (non) care.  Ending with him dying so carelessly. In such a setting. There are no words. Just consuming rage. How could they?
4. Numbness. A temporary halt on emotions. Like yesterday, when my parents, lil’ sis and I were planting flowers around LB’s grave. The enormity of this action sort of generates a shutdown. To create a space to get through.
5. Fleeping. An almost cathartic state in which tears spill silently without control. Like a flooding, weeping thing but without the sobs. Or anything. Just tears. Last night the combination of curry and ‘Never Mind the Buzzcocks’ caused fleeping. Curry and/or the Buzzcocks always generated a cheeky appearance from LB. Either to scoff a plate of food (or two), or to seamlessly squeeze in next to Chunky Stan to watch Noel Fielding post bedtime. LB loved Noel. These appearances were always amusing and Rich kind of encouraged them. With hindsight they demonstrated a contentment LB had with himself. And we loved the way in which his cheeky rule breaking was accepted by the other kids. They never questioned the differential treatment he received. Instead they added it to family folklore.

How to live life once a child dies? In such a terrible, unnecessary way?  Rich and I have moved beyond a state of shock, of saying repeatedly ‘I can’t believe it..’, to saying ‘I bloody hate this’.

And added by my mum and sis;

• I find the night-time silent sobbing without tears the worst – either not getting off to sleep or waking after a couple of hours with a real pain in the chest and trying not to shake the bed with silent sobs. We are all feeling totally bereft, not just losing our beloved eldest grandson, but realising that the rest of his family will never be the same again, so we have lost the funny family unit they used to be as well. It’s a double whammy.
• For me its still the driving to Oxford …possibly because I do it most on my own and have time to think about LB (quite often in the present then have to remind myself he is no longer physically present) and no amount of Radio 2 or Heart or cd of the day can distract the thoughts……sad sad sad.

   

  Whatever grief state is in play, life is crapshite now.

Rich took this photo on his phone. He left his phone on the bus. It was handed in.

My plan to avoid the weekly countdown, the terrible events of that morning, were scuppered yesterday. I did the early to work thing, avoiding the raging ‘real time’ weekly tweets. Firmly focusing on cracking a few (more) candycrush levels on the bus. I walked a different way to the office.

Got through the work stuff. Went home. Rich was at Warwick. Tom in the park playing football with his mates. I hunkered down with Bess and Chunky Stan. Thinking time. Space to cry.

Then a sickening noise. My (defunct) health and safety mechanism instantly re-engaged. Outside a crowd. Several people on their phones. A motorbike lying in the road. A shattered looking person moving their car off the road. A sense of collective doing and being. Such a contrast to what happened to LB. Locked away from social life. Cut off from goodwill and sense.

Various emergency vehicles pitched up. The sirens. Those fucking sirens. On our doorstep.

I gave in to irrational nerves after about 25 minutes and wandered across to the park to check on the footballing boys.

They were sauntering back home. Past the cavalcade of flashing vehicles carving out a recovery space for motorbike guy. On the London Road.

He was being lifted into some seated stretcher thing. Chattering to the paramedics. The crowd still clustered collectively around the police. There was an atmosphere of cheer. People sharing their recollections, their evidence. Their input into an episode of sensational everyday life. Motorbike guy was seemingly ok-ish. Alive.  (My new bar).

‘You got any homework, Tom?’, I asked.

Time for a ‘grief’ update. Ahead of the usual Thursday morning countdown that I tend to save for twitter. A sort of minute by minute remembering of the catastrophic events that unfolded on that sunny July morning. Today I’m planning to try and trick the misery by going to work early. Instead of lying in bed tweeting my rage about what happened while sobbing at the inevitable sound of passing sirens, and signing off with a ‘stay classy NHS’ you bastards.

So, life is pretty much awful now. Transformed and coated with darkness. With OK bits. And then lovely bits that involve the kids, family, friends, colleagues and people we don’t know.

I’m back at work, firing on a cylinder or two. (Not sure what the minimum number necessary for action is, but there is some action). And I’m crying a lot. Rich is the negotiator/mediator of my tears. He hunts patiently for my missing x, y or z. Things I always lost in the past (and yes I know it was always hugely irritating), but things I find harder to lose now. He listens when I say over and over and over and over again that I can’t believe LB drowned in the bath. Drowned in the bath? That I will never see him, be with him, chat with him again.

That I miss him beyond words.

And then there are droplets of magic, of fairy dust, that make me think that change is possible. A collective outrage to what’s happened. A resistance to accepting the unacceptable. This manifests in various ways. The police were exceptional in their sensitivity and handling of the investigation. They seemed to genuinely care which was remarkable after months of no care and disregard. The Families and Disability module at Sheffield Hallam University is dedicated to LB, and this blog is being used as a resource on various health and social work courses. I’m pleased about this, as a firm believer in the importance of personal experiences feeding into policy and practice.

Anna Myers is running the Oxford Half Marathon on Sunday in LB’s memory, raising money for KEEN (a fab venture by Oxford Brookes and Oxford University students providing activities for young disabled people and kids). Beth Hill helped Anna run a cake sale at Brookes recently that raised over £200.

The Oxford Bus Museum have agreed to open especially for LB’s birthday, laying on a celebration bus ride. What a gesture. And yesterday I contacted a highly recommended online printing company to discuss getting some medium prints of LB’s Trax painting for fundraising. (We’re planning to set up a ‘fighting fund’ to raise money towards the cost of legal representation at the inquest)*. The sales manager said they would print 100 for free.

More tears. But ‘good’ tears. Which are kind of different.

*I know I keep saying this, but baby steps and all that.

I keep saying there aren’t words to describe this experience. Devastating, shattering, life changing…? Nah. Too insubstantial. Brutal is possibly close, but even that remains a limited enough descriptor to be pretty much useless. Brutal doesn’t capture the ongoing and unfolding devastation/horror/despair/rage. Of trying to understand LB’s death. Without adequate words, it’s almost impossible to articulate. And given we’re (largely) social beings, and life turns typically on talk, being and doing, this is tough.

Having a child die isn’t a common experience in the UK, though I suspect it’s most parents biggest fear. It was mine. And to have this fear realised is worse than I imagined. (Possibly because the thought of it was so unbearable, I couldn’t really go there). The way LB died makes it harder to make sense of. I don’t know how many people drown each year in the bath in the UK, but I suspect it’s a tiny number. The number of people who drown in the bath in an NHS setting must be pretty much a count on one hand jobby. Or one finger.

2013: LB.

This makes my brain scream relentlessly. 

People don’t know what to say. What is there to say? Nothing? Anything? Something? Only one person has said the wrong thing so far, and I think she was shocked into a space of spilling words without thought. She gabbled on about how her grandson who was supposed to not live beyond babyhood and “never amount to anything” had just started university. “Er, good for him..” I mumbled, awkwardly, before walking on.

People can’t help asking “How are you?” And then quickly backtracking with “Silly question, I know…” But there ain’t an awful lot else to say really. I tend to answer either “Crap” or “Ok considering what’s happened”. The former is true, the latter is a softer version of the former; ‘I got up this morning. And got here. And I’m still standing. But crap all the same’. Neither answer really does anything other than fulfil a social obligation. But the exchange is preferable to pretending that nothing has happened.

Rich and I walked along the canal again this morning to the cemetery. So many people walking along in the sunshine, seemingly oozing joy filled lives. Fragments of conversation. Fun, friends, nights out, kids, more fun. When we moved aside to let people pass, I wanted to say where we were going. But I didn’t.

At the cemetery It was a bit of a shock to see LB’s got new company.  A grave to his left. A woman who died aged 90 a week or so ago. Ninety? Now that ain’t bad. Only 72 years more than LB.

Seventy two more years?

Crushing sadness.

Collecting memories is a core activity at the mo. Rifling through stuffed drawers, surfaces and pulling together discs with school photos, tiny Hornby figures, school diaries, paperwork and printed photos. Thank fuck for hoarding. It’s all here. Somewhere.

Tonight I spent a few hours browsing through thousands of digital photos. In thumbnail mode.

Thumbnail life. Layered snapshots of family times. Of holidays, hanging out at home and family do’s.

The timings jar.

Was this really so long ago? It seems like yesterday. Did this happen straight after that? Before that? Really??? 

I take so many photos that thumbnail life is saturated. Edited, unedited, selected for greater things and barely looked at. Photos rarely deleted. Thumbnail life shows how LB just was. As everyone was. We all just were.

Except of course, LB wasn’t. Because he wasn’t allowed to be.

I went to Trax today with Sue (Charlie’s Angel) and Fran. And Fran’s baby g-niece, Ruby. LB loved going to Trax every Wednesday with Sue. He was there the day before he died. Taking apart a Nissan engine. The staff wanted us to have a painting he’d done there. Lots of tears beforehand, and tears there. This is a fucking tough old gig.

The staff were lovely, and sensitive. After a coffee and a catch up, Lyndon who runs it gave us a tour. And what a fab outfit it is. We went round the quad bike shed and quad track, a lovely old barn, gardens and canteen. We walked past the smoking area where LB initially raged about young people smoking. By his last session, he’d stand back from his engine and mimic having a puff. Hilarious.

We passed the rows of work boots, painted with shoe size, the neon jackets, the lockers. And saw his engine. Still on the trolley as he’d left it. That Wednesday afternoon.

It turns out that as well as car mechanics, Trax offer catering and gardening activities/courses. And they include learning disabled people up to the age of 24.

Eh? Really? Did you hear that Oxfordshire adult social care? Bung it on your list of potential opportunities for young learning disabled dudes will you?  And remind me; what do you actually do?

Nope. I won’t rant and rage. I’m too tired. Worn out with misery and crap. And then more crap.

Instead, here’s his painting.

Pure brilliance.

Heartwarming post arrived yesterday lunchtime with a set of stitching materials from Janet, my PhD supervisor some years ago now, and a funky, customised phone pouch from H, a young family friend who went into hospital recently. Love em both.

Janet is a stitcher. An exceptional stitcher.

We organised a ‘Crafting space for Conversation‘ workshop at a Disability Studies Conference in 2010.  This was with a game colleague who said he’d bring an unfinished Airfix model from his childhood to crack on with. Both he and I stitching novices. The session was a bit wacky but it worked. We sewed, scribbled, knitted and quietly talked for the hour. The idea of the workshop grew out of our increasing  resistance to the circular, sometimes dogmatic and stale ideas that tend/ed to dominate disability studies. From the conference blurb;

“While this form of activity is more often associated with women and the domestic sphere, there is a long and honourable tradition among both men and women of using stitch to express identity, facilitate communication and offer resistance, particularly at times of confinement or oppression. For example, in the Pinochet years groups of Chilean women recorded scenes of their lives, First World War soldiers embroidered ‘trench cards’, Arthur Bispo do Rosario, fifty years in a psychiatric hospital, created stunning representations of ideas significant to him, using scavenged materials and so on. While the ‘artefacts’ and what they represent can be important, what happens to individuals and interactions during the process of creating something (however modest and private) may prove to be equally interesting.” 

Janet wrote and said she’d been thinking about stitching a copy of one of the pictures LB drew of a bus. Splashes of bright red and blue. A vibrant, lively, quirky picture.

On reflection, she sent me the materials and explained why.

The letter made me cry. I was so moved that she’d thought about doing this, and her thoughts about doing this. I wondered if I might join the stitching sisterhood (even though my stitching skills have always been pretty rubbish). Maybe it was time to learn to stitch as a form of resistance.  Resistance to the deeply oppressive process that lies ahead. Resistance to the rage, futility and despair generated by communications and nonsense going-ons that surround an internal NHS ‘investigation’. An ‘investigation’ into something that should never, ever have happened.

And stitching as a way of focusing on and delighting in LB’s unusual brilliance.

H is also passing time crafting and stitching. A kind of bricoleur working within the confines of a different NHS setting. Drawing on materials to hand to create. Engaging in action, activity and communication. The process as therapeutic in different ways, I hope, as it is a delight to receive such a gift in the post.

So, warm thanks to both of you. Stitching army extraordinaire.