The day after

I made sounds at the John Radcliffe hospital yesterday I never expected to make. Or even knew I could make. Sounds of keening, howling, inconsolable, incomprehensible grief, sorrow, despair and darkness.

Our beautiful, hilarious, exceptional dude was found unconscious in the bath in the unit before a planned trip to the Oxford Bus Company. The psychiatrist from the unit who called me at work around 10am to say that LB had been taken to hospital, gave no steer he was pretty much dead. I asked her (as an anxiety induced after thought) if he was conscious when he left the unit in the ambulance. She said they’d cleared his airway but he hadn’t regained consciousness. She made no suggestion I should urgently go to the hospital or that I should go with someone. It was a care less call. Much like the ‘care’ he’d always experienced outside home and school.

I arrived at the hospital twenty or so minutes later, with a work colleague who (so, so kindly) insisted on coming with me. I was immediately faced with a LB has a ‘dead heart only kept alive by a ventilator’ story. This news generated my, to that point, unknown sounds.

I hugged him while he died.

Unspeakable horror.

Agonising pain.

The combination of work mate, A&E staff and my mate Mary, who works there, was outstanding as we gathered the kids and sat in the ‘relatives’ room. We will forever be grateful for their care and sensitive attention.

We are now in a space I can’t describe.

Tom hopes LB is hanging out with the old comedians he loved watching. Having a bit of banter. I can’t move beyond wondering how a hospital unit, with only four or five patients, who made such a fucking fuss about asking LB’s permission for us to visit on a daily basis, could let him die in the bath.

30 thoughts on “The day after

  1. He does sound exceptional. Though with a family like yours I’m not surprised. I’m sorry for the carelessness and the flippancy with which this was treated. I can’t understand it either. The one thing I can understand is that he was loved by all of you, in equal measure as a family.

    I was so saddened by the news as I know you are such a strong advocate for every shade of disability. I always wondered when you taught me where that understanding and easy rapport came from. Now I know. You and Rich and the rest of you may not be the cereal package image, but you sure as hell did your best for LB and he knew that I feel.

    You will no doubt question many things as you come to terms with your loss. One thing that you must never question is yourself. You did your best, and tried always to act in LB’s best interests, and including him in your family in his own way.

    The anecdotes and reversing lorries from this beautiful collection of words are etched on to my memory forever.

    I never met him sadly, but I met his Mum and Dad, and I am thinking of them and all of you at the moment.

    The message you have always tried to impart is that people with learning disabilities are people too. They are indeed, and that must endure.

    I know he didn’t like disableds much, but this disabled is thinking of you all.

    If I could, I’d come to Oxford and be there for you. I still will, when you are ready.

    And the noises, I’m glad you are making them. Don’t feel bad about that. You are human.

    Much love from a former frequent user of the number 15 bus,

    Hannah. x

  2. My heart aches for you Sara. There are no words. I just hope you can draw some comfort from the love and support of all your friends. Xx

  3. I don’t know you but a friend commented on your devastating blog,about LB’s passing,I’ve just read your next day and have been reduced to tears,I can’t imagine the heart break and pain you must be feeling,the absolute horror,words can not express how sorry I am. I have 2 SN children age 13 and 9, I can’t believe the very people there to help are responsible..my faith in the system has gone..I’m truly so so sorry for the loss of such a much loved son :0(

  4. Like many on here I only know you Sara and your beautiful LB through your blog but I was profoundly shocked by your loss yesterday. Today I am further saddened to hear of your treatment from a fellow human being and so called ‘professional’. My thoughts are with you Sara and your family.

  5. Where on heavens earth does anyone start – I have not the vocabulary to express my utter sadness at how this journey has ended. Over the last few months, I have read with admiration and complete respect of your endeavours and determination – coupled with complete frustration at the barriers you have come up against – not a field I’m familiar with but you put across so eloquently we were all able to share and feel your passion. I completely reiterate what Heather has said above, I cannot begin to imagine what you are going through Sara. Thinking of you all – my heart genuinely goes out to you all. x

  6. Hard to do anything else but howl with grief and rage at such a care-less end. I hope when the details and explanations come you can find something that will being you a crumb of comfort. Your son was loved, cared and fought for and your memories will console when they stop hurting so badly. Those of us who live with such vulnerable but precious young people know the dread of things like this and hurt for you but cannot help.

  7. Sara, you loved with all your heart. I know you will have unfinished work to do in holding the torch for proper choice, and real aspiration, and the right for families to be heard, but for now love is all.

  8. Sara I cannot possibly imagine what you are feeling or going through. LB was a constant source of inspiration to all who read about him. I cannot express my sorrow enough. My thoughts and love are with you all xx.

  9. I did not know him, I don’t know you, Sara, but I know your work colleague and some other dear friends of yours who care for you so so much. I can not even try to understand what you must feel right now. A mixture of feelings so so deep, scary, devastating, speechless, angry, sad, everything. Even if you don’t know me, please let me send you some energy to cope with the coming days, weeks, months. You will notice how many dear friends you have around you taking care of you and your family and how they will try to stand behind you, next to you supporting you when you feel you are falling. Feel safe with them.

  10. Sara, Ivor and I are thinking of you and your family and we send our love.The blog was heartbreaking to read,knowing how hard you fought to get a good life for LB and you gave him all the love you possibly could in those last moments.The absence when he has been so powerfully present in your life will take a long time to adjust to, but keep talking about him, and he will live on in all that you do in his name. in
    pre in the

  11. I am sorry. No parent . sibling or family should have to go through this. I know about NHS failings for complex conditions all too well, I have spent time in secure units because the NHS and Social services have no suitable options and the draconian practice needs to end. I truly hope that the CID answer questions for you and that it effects change for all other youngsters in Oxford with complex conditions who need the help and support they deserve.

    Hugs

  12. Please accept my sincere condolences. There are obvious issues here so if you like to speak to us at the Oxford Mail about these, please contact me on 01865 425500. Jason Collie, Assistant Editor

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  14. Although I only knew LB through your wonderful blog, and you, Sara, through Twitter, you’re very much in my heart at such a devastatingly sad time. Please know my thoughts are with you and your family. I hope you can find comfort and go on finding joy in all the unique gifts LB brought into this world, and that somehow, one day, things may change so that the “care” networks of the NHS & social services for all vulnerable people may one day really care. Please be gentle with yourself XXX

  15. I keep rereading and rereading this blog and am still in total disbelief that you have had to go through such a horrendous situation. My heart goes out to you and your family. You have fought so hard for 18 years to provide a loving family life for LB and in a matter of months placed in care it has ended in total devastation. It is so so wrong on so many levels. I wish there was something we could do and say that would help you through this terrible time and turn back the clock but be assured we are thinking of you all and hope in time you will be able to move forward and think of him as you have fondly called him – Laughing Boy

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  17. Ive been away and am now catching up with ‘news’. What agony. What anguish. What anger. Everything I write looks ridiculous, but I would rather write something than nothing. I can only send my heartfelt condolences, which are completely inadequate.

  18. I have only recently found your blog, and though I don’t know you, reading it gives such a strong sense of what an amazing person LB was, and what a brilliant family he had to support him. I am so sorry for your loss, I can’t put into words how much my heart goes out to you all.

  19. I have been reading your blog and about LB for a long while now and am shocked to the core to read about LB. Like many I only know you and LB through your blog but both of you have shown me a special, amazing world that he llved in, a world to be celebrated. My thoughts are with you and your family, I can’t express how shocked and sad I am to read this x

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