Saturday 10 March 2012

Tears at times have the weight of speech - Ovid

I will probably get into trouble for writing this, but sometimes you need to find words to express the way you really feel. In the last couple of weeks Robbie has said two things that have brought tears to my eyes. The first was so unusual and so out of character that I had to check with him that I had understood him properly. He said that he felt as if he should wear a label saying ‘I may look alright but I’m not’. Robbie has had to cope with spina bifida throughout his life and he has such a good attitude towards his disability that most people don't even notice it - he just gets on with life. So his comment came as a surprise.

He explained that it was very hard to cope with chronic pain. I am well aware of that, but I learnt long ago that he doesn’t want to be treated differently because of it. When I have tried to avoid situations or protect him in various ways I have had my head bitten off and been told loud and clear “I'm not a (insert expletive) cripple you know”. He is determined to be Robbie, a person who just happens to have a disability rather than being defined by it. He can do almost everything that everyone else can; he just needs to pace himself and to be creative about the way he does things. He doesn’t need a lot of fuss, all it takes is just a little bit of understanding and the freedom to do things his own way without constantly having to make reference to his disability. His comment reminded me that even if he is his usual bubbly self with a big smile on his face it is still hard, but in true Robbie style he is ‘just getting on with life.

The second thing that he did that brought tears to my eyes was something he wrote on Facebook

“....as they say, 'behind every great man, there's a great woman', I am far from great, but I would not have survived the last two and a half weeks, without the love and support of Mrs J! Thank you Mrs J, I love you very very much x ♥ x”

I am certainly not a great woman, just a very determined one. I am like a Jack Russell Terrier, I may lack height but I am as brave as a lion and I never give up. Robbie isn’t the only man in my life with a hidden disability; my son has autistic spectrum disorder. He manages reasonably well these days, but it hasn’t always been that way and there have been times when it has taken all of my strength and determination to ensure that he had the right support. Apparently I became a bit of a legend among his school friends because on a couple of occasions I had to deal with teachers who failed to take account of his specific needs. Thankfully most of his teachers were excellent.



Robbie’s words meant a lot to me. I am pleased that he values my support, I often feel useless because there is so little that I can do to make things easier for him. Perhaps just listening and trying to understand is more helpful than I realised - and heaven help anyone who makes things harder for him!

Robbie, I may be understanding but I don't miss much - don’t think I haven’t noticed that the quote you chose was suspiciously close to a Groucho Marx quotation!

“Behind every successful man is a woman, behind her is his wife.”
                                                 Groucho Marx

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