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.