I spoke to someone from Cruse on the phone the other day, exploring options for counselling. I ain’t optimistic that it will help, but it’s on my list of potential strategies to ease the pain. Eh? What else is on the list? Erm, not an awful lot really. Time and wine basically. The former relentless and the latter not a good model for life in the long term.

Anyway, the Cruse woman was horrified by what had happened. Audibly horrified. Everyone has been. But her response, given that she works for a grief gig, got me thinking about what could be worse. Doing that ordering/othering thing we all do at some point or another. Measuring our own experiences against those who seem to have worse experiences to try and gain some sense of something. I decided that having a child taken by someone, treated violently and eventually killed was worse. Definitely worse.

This morning I thought about what had happened to LB. The extended restraints, the drugging, and the length of time he spent in the unit. In the ‘care’ of the state, rather than at the hands of a random individual.

It doesn’t get much worse.

I changed from being a cremation to a burial type of gal in the last five weeks. Well, to be honest I hadn’t given death much thought before (sort of ‘lucky’ enough to have largely kept a ‘hands over the ears, eyes squeezed shut’ approach to it up to now). That changed in a blink. On a sunny morning.  A day with innocuous work tasks ahead, lunch bought and, for the first time ever, put in the work fridge. Thoughts of whether or not LB might want to go to the school Summer Ball the following evening. And then the call from the unit and carnage.

One of the awful things (there are so many ‘awful’ things, awful really becomes meaningless) about unexpected death, is that you’re faced with unspeakable decisions to make in a very short space of time. A space in which you don’t want to make such decisions and you really ain’t really in a position to make such decisions. Major, major decisions. Decisions that parents should never have to make. With the accompanying screaming backdrop of disbelief, desolation and despair.  But the clock is kind of ticking and processes need to be set in motion.

The crem was out. Way too brutal. And final.

Our local cemetery was closed to new business. It overlooked the hospital where LB died, so wasn’t really an option. Rosie’s friend’s uncle had recently, sadly, been buried in the woodland part of Wolvercote cemetery. She said it was lovely space.  Our amazing funeral director said there was space available. And the decision was oddly straightforward in the end.

I went for a walkabout there with my mum and older sis the Sunday before the do. I liked the shade of the trees in the baking heat. I liked the peaceful feeling of the space. It felt right. And it still feels right. And, among so much that feels wrong, that screams wrong, this feeling is important. As it turned out, LB is in a lovely spot. On the edge of the woodland area, very close to the outbuilding housing the diggers. Under the trees but with sunlight, and a lovely view of the rest of the cemetery. Perfect.

But so, so fucking wrong.

Just a quick update to say that I won’t be blogging about the investigations into LB’s death (as much as I’d like to). The process has to be followed without me butting in publicly every five minutes, ranting and raging. Wearing out swears and expletives. The time for that will be later. I’ll just say that I find it slightly ironic in a good way, that the dude who had so much faith in his legal team while he was alive, now has a superb team* fighting his corner.

He would love that.

*Thanks to the support of the charity Inquest, a brilliant organisation.

Rosie and I sorted out two bags of stuff yesterday afternoon. We found these two notebooks that made us chuckle. The ‘LB rocks’ books.  On each page, he’d drawn a little figure holding something (a megaphone?) and had written what rocks in different colour neon marker pens.

This was largely him, with ‘LB rocks!’ pretty much on every other page.

London, suburban London, Mighty Boosh, Oxford, Son of Rambow and Europe all got a few mentions. Leeds was chucked in once. On the last page in both books, he’d written ‘The End’.

Love him.

I don’t know if I can find the words here, right now. Well they don’t exist, as far as I know. It’s late. I’m ‘grief-tired’ (I’m putting out a lazy shorthand term until someone creates the words to adequately capture this experience). ‘Grief-tired’ differs from ‘typical tired’, if there is such a thing, because it involves a lack of sleep combined with crushing sadness, anxiety, questions, agitation, being in a state of full alert (not sure what the full alert is for but anything less seems a betrayal of LB), worry and despair.

So much sadness.

This sadness isn’t confined to right now but extends indefinitely across time and space. Not only in the everyday but also the anniversaries, ‘special occasions’, holidays, the anticipation of events or places that LB (son, grandson, cousin, nephew, potential brother in law/uncle, family friend, pupil, friend, dude in the Wheatley Asda, acquaintance) should be present but won’t be. The pain associated with this absence, how we fill this space, is too enormous to think about.

But there’s right now to think about too. The immediate loss to layers of family and friends and others who loved LB, liked him, admired him, delighted in his humour, or hung out with him. And those who loved the (odd) socks off him. Like we did.

I’m raging against those who led us to this space. I want to say have a long look at yourselves. A long, hard look at yourselves. Have a critical think about what you did and what you didn’t do. What you could or should have done. Think about the processes you followed, the processes you ignored. The processes you should have challenged. The common sense you ditched, the indifference, thoughtlessness, carelessness, lack of humanity and empathy you demonstrated to him, and to us. Because there are a hell of a lot of other dudes like LB out there. Dudes who deserve better.

Things ain’t getting any easier. They are changing though. Largely through the support and actions of family and friends (and wider). This week there has been a collective effort to sort out the chaos we live in (serious hoarding tendencies) and transform/create space. Space for us to try and recover.

This has involved packing up LB’s stuff. A task I couldn’t go near.

The kids, under the watchful eye of Tracy P* (“…we packed absolutely everything, even what looked like the chewed off corners of cereal boxes”) set too, decanting LB’s life into a mountain of boxes and boxes now stacked up around me, downstairs.

Heartbreaking.

Sue and Tina (Charlie’s Angels) pitched up among the chaos. We laughed about some memories. Particularly LB’s delight in sending a message in a bottle to the mermaids. Off the bridge at Marston during a nifty detour on the school bus. And the answers he received from the mermaids on postcards sent from various holiday destinations. He had some magical experiences, that dude, which he embraced in his straightforward, ‘does what it says on the tin’ manner. A cheeky grin and a chuckle.

We again shared disbelief/rage about what had happened. And how it could happen. As Sue said, a constant loop going through her mind. Impossible to make any sense of.

They left to go to the cemetery and the clear up continued.

After my smell descent earlier this week and the physical removal of LB’s stuff from what was his and Owen’s room, for so many years, I’m struck by a silence, as well as the continuing raw pain.  An enormous silence. I don’t know if this is because LB never stopped talking, either to himself or through repeated (bus and lorry related) questioning. Or whether it’s a more symbolic silence. It’s as if someone has switched off a background channel somewhere. Odd and unsettling.

But we now have new (and clean) spaces in which to be. I have an armchair in the bay window in what was LB’s room with a view of the London Road and the buses. And a large empty chest ready to store the special things/memories when we are able to sort through the stuff. Around the ring road, at the cemetery, a sparkling Eddie Stobart baseball cap has appeared on LB’s grave. Under the trees, in the sunshine.

No words from me today. Here is Rich’s speech from the do:

Now, before I go too far into this I should make a quick observation – if LB could speak to us right now he would have already said ‘shut up and sit down Richie’ as he did on many family or other occasions when I thought I should say something – so in keeping with the spirit of his wishes I shall not speak for long.

As many of you know it wasn’t the most conventional of family structures – taking the form of a reconstituted, blended, multi-locational one or whatever it might be called – but it worked (well most of the time; you try going through UK border control with seven people pretty much all of whom have a different surname on their passport) and LB shared his love, his sense of humour and fun, with all of his brothers and his sister, his mum and dad as well as his grand-parents – along with a number of others whose specific family designation was less clear but just as important – I spent a good ten years being known as the Amazing Geoffrey – not sure why but it worked for LB and so, for me.

As you can see from today, LB’s unbounded personality touched many, many people – not only those who lived with him – but, on occasions, people none of us had ever met or even heard off. A whole set of people across the region that knew him by name, sight or by his habits. He was simply known, or example, as the ‘tall, lanky young man’ at the much visited Oxford Bus Museum and frequently we would run into people on our daily errands who LB knew and who knew him – always quick to win hearts and friendship as well as any free food that might be up for grabs.

And food was something LB loved – certain foods more than others its true – but food was a passion – whether it was secretly eating 21 deserts at his grandparents birthday party or savouring the regular Sunday lunches with his Dad and family.  It was particularly unwise to leave lemon, coffee or chocolate cake unguarded if you hoped to have a slice yourself.

One special thing (amongst many) that LB taught us and we would all do well to remember, was how to take special pleasure in simple things. In the love for the everyday, for the gentle pleasures of just being with each other, of our surroundings and in the immediate. He loved nothing more than lounging in the sun and enjoying the warmth of a slow, sunny afternoon. He simply enjoyed being, being himself, being with all his family, his friends and, especially with Stan the dog – who towered over the rest of us in the hierarchy of LB’s love.

Gentle and compassionate, his innate understanding of the way of things would be imparted in quiet chunks of insight, determined questioning and, at times, reassuring homilies. One holiday in Devon he spent many hours talking to three fine Aberdeen Angus bullocks who faced their last few days before slaughter in a nearby barn on the campsite. Touched by their plight LB sought to reassure them that despite the inevitability of their impending doom, they would feel little or no pain, that they were headed for better things and as this was their destiny they should embrace it and not worry or be distressed.  When asked where this ‘better-place’ might be he replied the supermarket and the dinner plate – his compassion real but also realistic.

All this said and despite his generally relaxed approach to life he had a fertile and lively imagination and at times would live out complex life scenarios in very short spaces of time with awe-inspiring intensity. Be this managing his football guys to World-Cup triumph or tackling local crime and disorder issues.

His biggest dream was to run his own transport company – ConnorCo as it became known – which was to be based in County Mayo. He had the livery, the range and number of vehicles, the routes and even the pay-scales and overtime rates all worked out. It was the best transport company you could ever imagine– and those trucks and trailers, flat-liners and box-vans will rumble on forever in our hearts and in our memories of this beautiful and magical son, grandson, brother, nephew, cousin, friend and young man.

I wake up and momentarily orientate myself. I’m in bed. Daylight. Car door slamming. A bus passing on the London Road. Must be morning

And then I remember all over again. LB is dead.

Not sure how to even start to type this. Words skit around, like random bugs /moths in the now chilly candlelight. Wrong, inappropriate. Out of place. Fucking inadequate. It’s exhausting being in a place that is so impossible to make sense of. A space so beyond awful that the usual rules of anything are suspended. It’s a terrible space to be. But one we can’t escape from.

Big sis came over today. We made a start on LB’s clothes. The ones on his bedroom floor. A mixture of ‘unit clothes’ and ‘pre-unit clothes’. We made a superficially good start with a ‘pile to keep’, ‘pile to shift’ and ‘pile to return to school’ (LB had a bizarre habit of acquiring school uniform without ever appearing to come home in anything other than what he’d left the house wearing). The top layer we dealt with was clothes from the unit. The boiled stuff. Clothes washed so regularly and at such a high temperature, they were like fake clothes. Slightly smaller, slightly tighter and no longer resembling LB. But hey, I admire other people’s efforts at hygiene when I fail so regularly at my own (particularly now as baths are out of the equation).

The ‘keep pile’ at carpet level (yes, we are that cluttery/cruddy) had t-shirts from four months ago that smell like LB. I syphoned some off into a pile to remain unwashed. The Homer Simpson t-shirt he always slept in is rich with LB whiff (a mixture of body odour and deodorant as Tom describes it). The power of these smelly smells is indescribable. They take me straight back to the days of saying ‘Phwaor LB, you stink mate’. They create a here and now presence of the dude that I know is temporary. An almost false, teasing way of trying to hang on to his essence for a tiny bit longer.

This is kind of in contrast to our experience of losing him so catastrophically. Without warning. Of dealing with seeing him dead in such terrible circumstances.  We never saw our dude again outside of institutional spaces. But here at home, with these clothes, I can start to remember him as he was. Not what he became. The potential fading of the smelly smell of the t-shirts is, in itself, heartbreaking. But we can’t stop it. The smell is probably already diluted through a combination of fresh air and my tears this evening. ‘Maybe put ’em in a sealed plastic bag’, suggested Rich, love him.

In the background to today’s smell journey, we received the ‘TOR’ of the NHS internal investigation. TOR???  [Rage]. Terms Of Reference. These ‘terms’ decided by some NHS bod as s/he hands out industrial size brooms, layers of carpet and buckets of tipex. Pre-written scripts carefully worded (and drenched with jargon) to say absolutely nothing of any meaning.  The predicted outcome; a collective shrug with a ‘We didn’t do it guv’ chorus. Internal investigation? What a farce. With a right old pong attached to it.

We went to London this morning, to change the contract phone Tom got for his birthday two weeks ago. (Don’t ask, but Three mobile did not come out well in this episode and Rich nearly got arrested). We did a back street traipse to the Apple store in Regent Street, to avoid Oxford Street. Way too many memories in Oxford Street. But memories are everywhere. Dripping from everywhere.

In the entrance to the shop, was a large picture from Up. LB had the first seizure we recognised as a seizure during Up. He became hugely distressed about the mild peril to grandad, Russell and Dug and behaved so oddly we started to think about epilepsy. Back in the day.

After that, we got a referral to neurology, but were discharged by the neurologist who said he needed to control his anxiety (more star chart type advice). Yes, the writing on the wall – of catastrophically poor care – was apparent even then. A set of tonic clonic seizures involving the (lovely, lovely, as always, paramedics) a short while later led to a re-referral. The fact he had, in the interim, grown too old for children’s services, meant the referral was bounced back from the hospital and the GP had to re-refer him to adult neurology. Delay was also an integral part of catastrophic care (as was the persistent lack of listening to us as LB’s parents). But there was no concern, no reflection about the delay in diagnosis (and potential risk of this delay to LB). We just had to suck it up.

The diagnosis of epilepsy arrived in the end. I mean I ain’t no medic but having witnessed him having a tonic clonic seizure in our living room with the backdrop of the paperwork detailing the previous seizures, I could have diagnosed him myself with complete certainty. But process are processes. And, with the NHS, the wheels of bureaucracy turn pretty slowly when you’re negotiating the healthcare of learning disabled people.

The medication prescribed at that point controlled LB’s epilepsy for over a year until new drugs were introduced to try and contain/control/reduce his increasing mental ill health in December 2012. And the seizures re-started.

I walked behind Rich, Tom and Owen after the phone was replaced. Reflecting on the enormity of the loss of one of of our cubs. The one who arguably needed the most protection. But then the rage kicked in again, as I thought about how we’d kept him safe for 18 years. How we slept in his room the night after he’d had his seizure at the end of December, last year. The thought of leaving him alone that night was too awful. Rich and Tom piled in too.  A sleepless, uncomfortable, stressful night. In the morning, after bed shifting and movements, it was LB and I. He’d slept brilliantly.

Sadness on sadness. With a rage topping.

Bastards.