The do

ryan5-331Well, as far as these kind of do’s go, it was bloody brilliant. It was a gig I dreaded with every bit of my being. I felt such a strange sickie/fainty sensation in the morning, visiting LB for the last time, I couldn’t see how I could get through the day. I did not want it to happen.

But it was a good day. A day of sunshine, celebration and buses. The journey to the cemetery started from outside our house. We wanted LB to come home one last time, as he’d consistently wanted.

He was in a shiny, red London bus coffin, and we followed behind the hearse in a beautiful old Routemaster bus, customised with the name of his planned bus company. The funeral director walked the hearse from our house, part way along the London Road. A road LB loved for the volume of bus traffic. It was where he filmed his youtube bus film.

The tiny woman with the chair was sitting up near the roundabout. She leaned forward when she saw LB and waved at him. Unbelievable. And strangely magical.

There were so many people at the cemetery. From different times and spaces, wearing  bright clothes. Two of Charlie’s Angels, Sue and Tina, were pallbearers. Dressed in red and black, they helped carry LB to a beautiful spot in the woodland section of the cemetery. Delivering to the very end. The service was brief; some words about love and life by Ann, an interfaith minister, a bus poem by Izzy, who looked after LB when he was younger, and thoughts about LB by Rich. Between them, they nailed the dude LB was.

Busker John, who was going to play the guitar, broke down on the M40 but Lea stepped in. He sat down under a tree next to the grave and played a rousing version of ‘Here comes the sun’. We scattered bus tickets that the kids and their friends sourced from LB’s room a few days ago. A bucket full, dating back to 2006, and rose petals.

Then it was back on the bus to a soundtrack of ‘Build me up buttercup’ and ‘Summer Breeze’. Laughter and chat. At the Cowley Sports and Social Club there were even more people. The kids played football outside while people shared funny stories about LB, ate sandwiches and cake, and drank ginger beer. One old friend said; “The funny thing is, if anyone who hadn’t met LB asks me what he was like, I can’t describe him. He wasn’t like anyone or anything. He was just LB. That’s what he was like.”

Yep. That’s exactly what he was like. And the day was just right for him. Quirky, funny, full of love and buses.

This perfect do allowed us a day of sunshine and celebration at a time of unspeakable horror. A remarkable organisational achievement by some mates who picked up a clipboard and ran with it*.  Fran, Becca, Clare, Gail and Lorna (aided by partners and children), sourced and booked the venue and the bus, organised bus badges, arranged technical detail, decorated the room, sorted timings to/from the cemetery, laid on a great spread and cleared up afterwards. No words really. I don’t know how they did so much in such a short space of time. But they did. 

Apparently everyone they approached bent over backwards to help. ThisBus.Com provided the customised bus at short notice and (and a very kind and sensitive driver/conductor on the day). The Oxford Bus Company provided materials to decorate the venue. Jenny, at the Sports/Social Club did her utmost to make everything happen before and on the day. Leopard Press did an excellent job on the order of service, with the help of Tracy and Mike. Beth (and Susan) sorted the portable sound system at the graveside. SR Childs, the funeral directors, went over and above what was expected of them, organising an exceptional coffin, togging the pallbearers out in red ties, even shooting off in the car to try and get Busker John to the gig on time. He missed it but made up for it with a candlelit request session in the garden, late into the evening. 

*They are now turning their attention to campaigning, and if anyone can effect change in the way in which learning disabled children/adults are treated, I’d lay my money on a bunch of (raging) mothers of disabled children.

14 thoughts on “The do

  1. Sounds like LB had a really wonderful tribute. You have all been in my thoughts this last week. Let the bus journey continue, I’m one raging mother that isn’t coming off this bus xx

    • Happy to help all raging mothers as I recognize the need! Eight years since my son died (in a bath) in hospital “for his own safety” and I have learnt a lot since then! Peace and warm memories are wished for all. A’int no stopping us now!

  2. one thing that has struck me about your blog. It does appear that it is the parents know best and there are many diverse needs that must be met. Perhaps the government should hand over all the dedicated funds for this area to the parents and they could arrange all the services they need in their area . There should be no profit making companies involved only trusts. I am so pleased that you and your friends managed to arrange such a personal send off .

  3. …..eloquently written………

    Stand up and fight until you hear the bell,
    Stand toe to toe,
    Trade blow for blow,
    Stand up and fight like hell!”

    Solidarity………………….

  4. Raging mothers, yes, with raging disabled adults right here alongside you. I’ve done my ‘time’ – 9 months in a nursing home due to, yep, failure of local authority to fund appropriate care – and I’d do preeeetty much anything not to see anybody else face the same.

    I’m so desperately sorry about LB, and I’m glad he got a sendoff that reflected who he was and what was important to him. You all remain in my thoughts.

  5. I’m so glad to hear everything went so smoothly and that you managed to sort such personal details like the bus at such short notice. You wouldn’t believe how hard it was to simply find a wheelchair accessible vehicle get my dad to my mum’s funeral.

  6. Do keep in touch with me. I have Ideas and knowledge changes are needed , written care plans,definition of parental responsibility . Etc

  7. My heart is breaking for your pain.you described your beautiful son the only way us autism mothers can,He was just him,a beautiful indescribable human being and precious soul.

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