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Time Out

March 8, 2017

I’m going to take a short break from writing this blog. Or rather, I’m going to take some time out from writing about the intimate stuff of Steven’s & my life. If St Andrews suddenly decide to build a new 2000 bed, person centred unit, I might want to have my say on the matter but for the moment, I want to rest the personal stuff and let it heal.

The intention of this blog has always been to present the “normality” of our lives, rather than the object or the animal that the system likes to present. Being so exposing can be a double edged sword. I can achieve my goal but it opens me and Steven up to judgements. Most of the time I can handle that but at times when I’m feeling sad or low, the attention (self induced) becomes an added burden.

I’ve been to the bank this morning and changed all the direct debits into Steven’s name as the OPG requested. It was very straight forward and took about 15 minutes. What I wrote about yesterday wasn’t about the specifics or process of what the OPG was demanding. It was about the sadness I was feeling about how another small part of our family relationship was killed off.

Feeling melancholy, I went from the bank to Tesco to do the shopping for my flat. Most of my trolley had stuff for me but I picked up a couple of bits for Steven for the weekend. As I put the plastic divider on the checkout between my bits and Steven’s, I felt sad. I noticed other families, a woman & her elderly mother, a woman and her son with downs syndrome, doing their shopping together and felt sad.

This all may be self indulgent bollocks. I know deep down, it says nothing about our actual relationship but I can’t begin to describe how wearing it is to have the constant refusal to acknowledge love and duty and mutual interest. After a while, I start to feel very sore.

I just want to say that I’m not criticizing anyone. This is the internet and it has been my choice to bring my private life into a public space. I stand by my intentions but now is the time to withdraw and rest the wounds.

But, I’ll be back šŸ˜‹

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From → Social Care

20 Comments
  1. Sarah permalink

    Thank you for all you have done by revealing the reality of people in your situation. It has been so educational to read about your experiences and has given me insight into your world for which I am very grateful. Take care.

  2. weary mother permalink

    All you write here, so honestly and so bloody brilliantly, reflects not only yours and Stevens reality but ours too. We …are all people; some are parents – some are family – but all of us care deeply and conscientiously for ours and other people’s vulnerable sons and daughters.. under a hail storm.

    You give us our voice and you return us our value – both are taken so casually – from us..and ours..

    Bless you.

    The other day I felt like advising you to fetch a good friend and go to pub – celebrate who you and Steven are – and are yet to be..

    and …..get stonking and gloriously and happily drunk.

    Cheers.

    xxxx

  3. Lisa Eaden permalink

    Hopefully your time out will help. I’ll miss your posts so feel free to keep in touch with us on here on less personal stuff. You and Steven take care!

  4. Sorry a really thoughtless person delivered such a wounding blow ( obviously no OPG guidance for staff re ‘ how not to be deeply offensive and crushing in your communications’ )

    Wishing you a thorough recovery from the hurt inflicted. Hope that time/energy and opportunities bring about good times with your family/friends.

  5. Angela Marsden permalink

    There is something to be said for a bit of me time x Take care of you and come back when your ready x

  6. David Rosen permalink

    Thanks for your honesty and integrity over the years. My week will be a little less fortifying without you. Take care of yourself and Steven in your own inimitable fashion.

  7. To be honest, I don’t blame you. The huge emotional labour that you have to do just to make sure Steven has the best opportunities he can which in the process negates the actual deep and meaningful connections, must be draining. Hope you come back soon. Liz Ellis

  8. Pauline Thomas permalink

    Will miss the honest5y, candour and your sense of humour in your blog.

    My eldest son and youngest daughter have bought me your books for my birthday so I will still have your humour and words of wisdom to hand. Good luck and take care

  9. Helen permalink

    totally understand – you have given many of us strength – relate to the family relationship too. this is not about process or proceedure but love, belief and balls- hope ypu come back – take care hx

  10. Trevor Richards permalink

    The information you put out is invaluable too people caring for a disabled person, who may possibly have no idea of the pitfalls that can occur when dealing with various authorities. I have a son with autism and I have learnt so much from your blogs.

    Thank You and Steven.

  11. LizzzieD permalink

    I am very sorry to her you are feeling so raw – but understand only too easily. I have had a similar experience myself recently. We see the best of our children, and are constantly battling those who believe they know better than we do, and don’t get what we know. (On very flimsy evidence, in my view.)

    I have very often found comfort here, as you have expressed feelings I sometimes struggle to put into words. In the face of all this horrible certainty that parents are a waste of space, it is sad and you will be missed.

  12. I can’t add more really to the comments that everyone has made, except a personal thank you for your enlightening, cheering, sometimes sad, though very honest, super blogs. So much of what you say has resonated with me, and my daughter. Take care, find peace and joy in whatever you do…

  13. simone aspis permalink

    let’s hope time out will mean not getting sworn at – I have never sworn at anyone or use deligrative language. Whilst I have offered challenge – it was done in a way to make people think rather than offend. Yes I did feel I was harshly treated as a disabled person.

  14. Definitely time for time out. You’ve done a great deal and now it’s time for yourself. You deserve a while to be private and focus on building up health, strength and peace of mind. Wishing you all the best. xx

  15. Cathy B permalink

    Stay strong. Stay you. We’ll be here if and when. Thank you for sharing your journey – it’s been an education. Best wishes to you and yours. Take care.

  16. Cathy Hodge permalink

    Wish you well as you spend time away from personal public media.
    I have truly enjoyed reading your posts these past few years.
    It’s been a pleasure to ‘meet’ you & Stephen via your blog.
    Best wishes,
    Cathy Hodge

  17. Mark, I have never read your blog as a manifesto or some sort of bleeding heart complaining diatribe but as an insight into the daily grind of living for you and Steven. The insensitivity of the “caring Professionals” and the general lack of recognition of the importance of family and family relationships. I will miss your missives. I wish you and Steven well in your future and look forward to your occasional returns to the blog. And again thanks for sharing yours and Steven’s journey with a bloke who had no idea of the traumas you and thousands of others have to live through each and every day.
    If you are ever in Worthing, please pop into my Micropub and have a beer on me. You deserve it.

  18. weary mother permalink

    One other thing:

    Mark you express the bleakness weariness and outrage of us all – from the ‘stuff’ that we keep on sucking up – for fear of repercussion on son/daughter. Today is such a day,,,

    We are weighed down by this ‘stuff’…from the paid people who dump power dotty dogma, and arrogance – (sometimes all at once) – all over our our son/daughters lives…and …… all over ours.

    If it was just aimed at us – it only offended us – for some this ‘stuff’ is so bonkers we could laugh -just walk away – giving the finger …But we cannot…for it can diminish, and damage or even worse ..our son or daughter.:

    My son is a pretty chilled chap – he has been round the ‘care’ block for decades… and has experienced all – and he knows when he is being diminished and or treated badly….and hurt.

    If he reacted .and if he got as angry as I feel today – and expressed it – he would by now live in isolation in a place like St Andrews – drugged insensible..

    That he and so many of our sons and daughters do not…is because we mums and dad’s.tell them l all will always be OK…we will always sort it…

    and we ‘suck’ it all up ..for them. again.

    Instead of saying …

    .’Why don’t you just do your f’ing job and stop pissing on my son/daughters life.’.

    ‘And mine’.

  19. Thank you, Mark.
    I couldn’t help writing constantly on your blog, and tried to resist, but you’re such a useful parent to make it so easy for others.

    I don’t believe any of this not understanding the importance and value of parents for people with learning disabilities – they (professionals) all do understand – we just live in a selfish society where people make a living from others’ misery. What those people call ‘work’ is anything but – it’s the most dishonest work there is.

    Of course you’ll be back, and I’m sure you’ll write about events, but you did a public service and it’s draining.

  20. MJD permalink

    I’ve found your blog so inspirational and honest about the reality of living with and protecting the LD member of the family. Thousands of parent-carers are in the same situation; fending off official interference as much as possible while trying to make things right for the person they look after. The sheer lack of understanding from those who run the system is pretty staggering. Take time for yourself; you are more than due it.

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