The last week was one of the most stressful for a long time, there were a number of things going on but mostly we were worried about my mum, she was in hospital all week following her fall. I didn't know which way to turn, I needed to spend time with my mum and support her, but I also needed to help my step father who is ill and frail and not used to being on his own. Then there were the ordinary demands of life to be considered, going to work, feeding the family and trying my best to keep on top of the house work. I seemed to rush from one task to the next with no time to stop and think – perhaps that was a good thing!
My mum had a deep wound on her head which was surrounded by a large area of severe bruising; they were worried that the force of my mum’s fall may have caused a bleed into the brain. The wait for the brain scan seemed endless, but thankfully it showed that we have hard heads in our family, there was no damage to her brain. More tests were necessary to determine why she blacked out, it seems her blood pressure is very high but at times her pulse becomes dangerously low. This may necessitate a pacemaker, but in the short term she has been sent home to recover from her fall and to stabilise her blood pressure with medication.
We picked her up from hospital on Friday evening and settled her in at home before going home to pack the car and do all the last minute jobs in preparation for our holiday. I was disconcerted but too tired to argue when Robbie announced that he was packing the Lego men. It left me wondering about his priorities because at that stage he still hadn’t packed his underwear!
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
