Blimey. This is a right old tough gig. Just shite. The enormity is not getting any less enormous. I still blub at the oddest things. The (craphole) pub up the road closed the other week and is boarded up. That set me off as I thought ‘LB will never know the Quarry Gate shut…’ We only went in there once for a firework display about 10 years ago? Why would that matter to him? Then other things I’d expect to upset me, don’t.
I got to thinking about sweet day sweets today. Every Saturday morning the kids got 50p each to spend on their ‘sweet day sweets’. They bargained and bartered with each other to do deals and ‘sharesies’ to maximise the sweet to cost ratio (threefertwos always a hit). Discussions would sometimes open on Friday evenings and they would even roam further than the local Co-op in search of the best sweets. But not LB. He chose a packet of fruit pastilles every week.
One of the things I’m struggling with, is making sense of him no longer being here. I’ve read accounts where people say things like “X wouldn’t want me to spend my life mourning for her or him”. Our lovely minister woman sent through her suggested words before the do which included something about LB not wanting us to have any regrets. This caused me to weep for a couple of hours, as I ferociously tracked changes through the draft. LB wouldn’t think that. That’s threefertwo/shifting sweet source sort of thinking. Not fruit pastilles every week.
He loved us. He loved buses, lorries and septic tanks. He loved Chunky Stan. He couldn’t stand David Cameron and he found Simon Mayo boring. He believed the police protect people and catch criminals. He had complete faith in the legal system. Fruit pastilles. He didn’t have the ‘nuanced’ thinking that means I can ascribe abstract thoughts to him around what he would be thinking from afar (wherever that may be, if anywhere). He would be thinking about going to Trax tomorrow. Or whether buses were roadworthy.
I get to this point and it becomes too much to think about LB being failed so devastatingly by the crapshite system that is health and social care for dudes. He was better than the system.
And he’d probably have been better off if we’d taken him to the pub up the road in March. Rather than the unit.
There is no sense to this at all.
mydaftlife 
I know there are no words that will help you but my heart is with you (and my prayer)
Still no answers to the same old questions. How can it EVER be acceptable that families who spend nearly two decades heroically advocating for their children who cannot self-advocate, are actively prevented from advocating for them after some arbitrary date, i.e. 18 years after the children’s entry into the world? If an eighteen-plus-year-old cannot self-advocate, they NEED parental/family advocacy – no-one else has the same level of motivation and commitment.
You’re absolutely right, Sara, it is crap to the power of infinity.
NO SENSE, NO TRANSPARENCYAND NO ACCOUNTABILITY. SO BLOODY WRONG!
On my way to oxford for a meeting. Not looking out of train window as do not want to see what john can’t see. Avoiding his college and memorial bench which is for other people but too painful for me. Grief is exhausting.
Sent from my BlackBerry smartphone from Virgin Media
Hope the meeting went ok, Nicki. It really is. Hope we can meet up soon. xx