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.

Mum. An enormous word. For a tiny set of letters.

Mum.

LB eventually understood I was his ‘mum’ and ran with it. As he tried to make some sense of a sometimes challenging world. He used the word ‘mum’ more any other (even the old favourites like buses, Eddie Stobart, septic tanks…) For 13-ish of his 18 years (he arrived late to speech but made up for it), the word ‘mum’ consistently prefaced sentences when I was anywhere near striking distance. ‘Mum…Mum?’ ‘Mum?‘ There could be twenty ‘mums’ before anything else was said.

It drove me to distraction at times.

Now I ain’t claiming any special status, or a ‘super-mum’ identity. I was no super-mum. Quite the contrary. Particularly when it came to domestic type duties. Cough. Cough. And I could go away without him missing me. He was more than happy hanging out with Rich and the other kids.  But I was his mum. His constant.

A constant in a life that became increasingly bewildering, confusing and incomprehensible.

Mum. Someone he could rely on. The ‘just you and me Mum’ outings. The foyer incident. The re-assurer, after he learned about his diagnosis of a chromosome abnormality and then later, epilepsy, that everyone had got ‘something’. And if they didn’t now, they would at some point in the future. He’d often ask what people/animals had ‘got’, and we had a chuckle mixing it up; Chunky Stan had glaucoma, LB ‘trucks’, Steve Wright ‘dj-itis’.

“Dj-itis Mum?”

I was, like other mums of dudes like LB, a fighter, defender, protector, advocate, manager. A key worker trying to craft an imagined future for him. In a world in which imagined futures for dudes like LB are rare. The bar set so appallingly and unacceptably low. On every count.

A person who loved him beyond life.

He fully expected his mum to collect him from the unit.

But I didn’t.

Had a long kip this afternoon and woke feeling sadder than sad. Tears and darkness. Payback for trying to reduce grinding exhaustion. Bloody grief. Bloody crap old everything. Time to draw on happy memories and have a ‘fun times’ breather. And what better place than the trip to the London Dungeon? August 1st, 2006.

I took Rosie, Will, LB and Owen. Tom not happy that he wasn’t old enough. We fast-tracked to avoid the queues (Yeah, fast-tracked. Give it up you fast-track enviers/doubters/deniers/challengers.  You don’t know the half of it. Fast-track. A rarely spotted perk for the “disabled family”. One of the few times unusual challenges are openly recognised and responded to effectively). We fast-tracked. Clutching the blue disabled parking badge to prove our fast-track credentials (Yep, it ain’t a perfect system). Anyway, we were in. Quickly, smoothly and without agitation.

Kids (ours and others) instantly on edge. Darkness, chilly stone corridors, fear lurking in every corner. Growls and groans. Buckets of blood and gore. Staff who delighted in generating terror.

And LB was off. From the moment a ‘statue’ brushed a cobweb across his cheek, causing one of his (unnamed) brothers to do a cartoon, on the spot, scarper of fear, LB had a joyful time. Drenched with magic, fun and laughter. Not surprising really given the combination of London and a Horrible History type engagement.

We were herded through each horror area with a cohort of families. LB consistently picked out. He sat in the dock and received a sentence by the judge. Giggling uncontrollably, infectiously, as he was sentenced to death by boiling, or some other hideous punishment. He laughed his socks off as he was dragged out of the crowd to be the plague doctor’s sidekick. His merriment and joy a perfect foil to the mix of banter and horror chat.

His laughter, engagement and fearlessness a balm for terrified children there (including our own, erhem, no names and all that…)

When you have a child who is so far removed from being picked for anything because s/he is systematically and structurally removed from the ‘pick pool’, it’s a magical moment when they suddenly/unexpectedly are.

Dazzling. And priceless. A good day.

Dear NHS Trust internal reviewer,

I understand you are about to start an internal review into what happened to our son. An internal review. I’m not sure how you can effectively investigate the potential failings of your own organisation but hey ho. It’s as if we now exist in some bizarre netherworld where nonsense rules.

“Hey guys, what happened here?”

“Nothing guv. We followed the rules. Honest.”

“Okey dokes. Well crack on with the good work. Catch you laters.”

I don’t know if you are aware of this, but LB never once left the house without someone with him.  He needed more care than most. He needed actively protecting. This is probably the part that breaks my heart the most. We gave him that level of care and protection for just over 18 years. I was, like most mothers, a mama lion. Fiercely protective of my cubs. Instinctively protective. Particularly the one who needed it the most.

We assumed this level of care and protection would be replicated in the unit (without the love of course, and without genuine empathy even). We assumed he would be safe.

Somewhat ironically, we’d already made an official complaint against the Trust and local authority in April. A PALS complaint or something,  I still have no idea what PALS stands for. It was a comedy complaint really. The outcome was an assertion that LB received an acceptable level of care before he entered the unit. He died two weeks later while I was still in the process of responding to this.

He died two weeks later while I was still in the process of responding to this. 

There isn’t an awful lot more to say after that sentence. It’s a bit of a game stopper really. And this is a game. A crappy old game in which we have little power and no say over the rules. A game we never wanted to play. A game I despise.

I haven’t just written to rant as that would be a bit unproductive, although vaguely satisfying for me. So I’ll end with two requests. Please don’t use acronyms or jargon in whatever you end up writing.

And please don’t lose sight of the exceptional dude LB was.

Yours faithfully,

Sarasiobhan.