I watched a montage of home movies made by LB’s granddad Pat yesterday evening. He put it together from over 9 hours of footage in the weeks after LB’s death. I couldn’t get beyond the first moments till yesterday. When I wanted to re-capture insights/memories … I dunno. What are they? Precious moments that add texture to a shortened life…?
I saw LB as a babe. That beautiful face. Seriously, seriously cute. I mean, seriously cute. That laughter. Pure delight. That bounciness. Waiting and expecting and receiving the spray with the garden hose, the circuit of granddad’s garden on the sun lounger. The infectious laughter. The repeated Christmas rituals, unwrapping a truck/bus or lorry that needed full on package removal. More bouncing. Joseph in the nativity play. Joseph? I’d forgotten that. And what a serious Joseph he was. An exercise in concentration among the typical, noisy, joyful chaos of a John Watson school performance.
I was reminded of LB’s mannerisms, his character, his intense quirkiness. And that ease in lying on the floor, pretty much anywhere. Completely immersed in moving a bus/lorry backwards and forwards. Time and place irrelevant. A completeness of being. Magical and remarkable rule breaching.
Watching him now, on these fading home movies, I’m winded by indescribable loss. And enraged at the vile system that defined him as deficient. That muddied who he was for us for a while. And ultimately killed him.
My beautiful, beautiful dude. One year on, I carry you around in my heart and think of you every moment I step outside and look up at the sky. And with each bus, coach and Eddie Stobart lorry that passes. You were, and always will be, a bloody legend.
xxxx
mydaftlife 
In your own way Sara you too have become a legend by simply refusing to be manipulated by the system. Like you I have learned that silence is not golden, unless of course it comes from guilt ( SH NHS.Trust ) in which case it speaks volumes.
Thankyou for letting us share this terrible journey with you, I totally admire your strength and determination to see justice done, your blogs make me laugh, cry, and get angry, LB would be very proud to have such a fantastic mum! Sending you lots of love and strength today !
Reading this made all the hairs on my body stand up. It’s almost like I can feel the love, care and commitment you have for Connor through your writing. Sending you strength and love x
Just sending love xxx
beautuful, sad and crap all at once …. thinking of you today and so many other days x
My son is not disabled. My son is only 6 and full of his own quirkiness. I sometimes look at him and get overwhelmed by the fear of losing him.
This – LB’s death and what followed – should not have happened to you, LB and your whole family. Or anyone else.
I would like to say I know how you feel but I don’t think I’m anywhere close knowing.
Thank you for your courage to share your pain.
It will not be forgotten.
I am thinking of you and your family today. And of Connor. A man I truly wish I’d had the pleasure of meeting. He deserved better. You deserve better. I know I’m not going to stop until better is the norm. What an amazing legacy that will be. He is a Legend. And he inherited that from you.
I am so sorry for your loss and your pain Sara xx
Thankyou for sharing, through such difficult times. I read your post and remembered my own brother as a child and young adult, at home, on the floor, at ease with the people he knew well. If he had lived he would be 58, a year older than me. His death was different, at age 29 and through a different kind of neglect and well-meaning interventions. But I mourned him deeply and still rage at times for the injustices in a world that fails so completely to understand. Your line, ‘A completeness of being’ took me right back to the brother I knew through my childhood, played alongside, followed through make-believe adventures and listened to his stories. He stomped and stamped sometimes but inside he was my brother, and I never knew how to help.
xxxxxxx
I am heartbroken for you today. So so very sorry for your loss.
Beautifully expressed Sara.
LB was a lucky dude too – to have you as his mother. Love Angela xx
Your son has touched the hearts of many , I have his artwork in a frame in my house. I look at it daily and it inspires me, it helps me to keep pushing forward for my girls. Your son was an amazing boy, he will not be forgotten by family, friends nor strangers like me. xxxxxxxxx
Sara, I am thinking about you all the time, but especially as I drove into work this morning. You and LB are changing the world! X
My heart is with you all, all the way xxxxx
You are in our thoughts every day, even more so today.
Sending love and hugs to you all Sara xxxxxxxxxxxxx