We’ve been pitched into such a strange, howling ‘non space’ in the last six weeks. Yep, it’s six weeks tomorrow morning. My head remains in a ‘shrieky/turmoil ridden/too, too awful to fully engage with anything’ state of agitation. My heart? Well, I can’t go there. Not sure I ever will.
We had two days this week in London with Tom and Owen. As we’ve done for the last couple of years. This was ok-ish. Thanks boys. We had fun. We chatted, we wandered about. Rich and I walked round the Serpentine while they explored Oxford Street. The open water/countryside type space that allows me to breath. Later, I swallowed my irrational fear when the two of them went on the Star Flyer ride on the South Bank.
I managed to keep the anguish largely confined to moments in between family time. When it was just Rich and I. Between remembering LB moments. The camping trip a couple of years ago when LB announced “I know nothing about fishing, I just know about women”. Re-living memories of the ‘do’. The do that’s becoming a cornerstone of our reflections about LB. That it was as good as it could have been, an enormous comfort.
And then the many memories of LB in London. The space he loved. He consistently wished from an early age that he ‘was a Londoner’. On the ‘Just you and me mum’ trips that was one of the few things he’d say. On the South Bank this weekend, we reflected on how much LB would have loved the busker standing in the Thames. Singing about Pentax pens. The flame proof moth. What a guy.
I spoke to little sis Sam today. She’s got a rocking bereavement counsellor friend who is happy to give me a call, love her. When you get a waiting list for this sort of gig, it ain’t really that helpful. The Oxfordshire based children’s service, Seesaw, are on it.
Rich and I sat out in the garden earlier, talking about what’s happened. As we do all the time. He thinks I’m doing ok really. In the circumstances. Grief is total crapshite. How could it be anything else? He just wanted me to know that. And I am. It’s unspeakably, indescribably awful. A stifling cage of enduring, unstoppable shite. The whole ‘investigation/inquest and beyond’ stuff is unthinkable. I’ve read and re-read the unit and social care notes. I have some idea about what lays ahead.
What upsets me most in all this is where is LB? Where is our hilarious dude? How can the processes that will (or are, or may be) creaking into being ever capture who he was? Who he should have been? I want to know how our beautiful, funny boy will remain visible? As a person. And not just be another ‘case’ to be briefly picked over in some sort of faux ‘important’ investigation/review only to be ultimately ignored. Parked in the graveyard of learning disability and indifference.
I don’t suppose for one moment I’m alone in howling about this. Thankfully.
But I’m doing ok overall on the grief front. I agree with Rich. It’s just a festering pile of fuckingcrapshitebollockfilledtosswank.
You are amazing …. I know you don’t want to read that, why should you ? It’s not what you wanted to be,when it comes to grieving . My heart completely hurts when I read your phenomenal blogs about LB . I have always read your blog and l have loved them and they have informed & educated me but since your tragic loss I have been moved beyond words and taken to a place of darkness and reality a place I daren’t visit with my thoughts since our dear daughter went into residential care. It’s such a sad lonely place for a parent who no longer has full control of their beloved and precious offspring . I think of you all so much without knowing you or LB personally through your blog, I feel I do . You as a family will continue you do grief ok because ye strike me as a family and as parents & as a couple, that love will conquer all even during the awful inquest that lays before ye . I will offer prayers and hope for all of you . You are as I said , amazing – don’t forget it .
Your story, your blog and your wonderful son have given me the courage and determination to stand up to the social work department that are dealing with my daughters post school placement. I know it’s not going to ease your personal pain or heal the loss of lb but your son is making a difference to others like him. His situation has given me the backbone to stand up to the council and insist that my daughters get the support they need to live a full and happy life. There has been a government report just published on early deaths of disabled people, I am assuming you have seen it but if not I could post up a link?
That is very good to hear, Polly. I have seen the report if it’s the one that recommended that the government set up a review board to look into these deaths?
Click to access Six_lives_2nd_Progress_Report_on_Healthcare_for_People_with_Learning_Disabilities_-_full_report.pdf
Thank you Polly.