Further to Cathie's question on 'RA info for children' I thought I'd write about RA through the eyes of my wonderful 4 year old (five years old next weekend I keep being told to remember he is a big boy now!)
The thing that has always upset me most about having RA is that I feel that I am not able to be the mother I want to be, going to the park and playing rough and tumble, going for bike rides, the list is endless. But I had never once stopped to think what it must be like for my children having a mum that can't do the things that other mothers do, that is until about 6-9 months ago...
Firstly I'll just say my children are the most important thing in the world to me and they give me a reason to live, I am in no way being horrible about them, I just thought it might help some families to know about how my son has reacted to having a mum with RA.
My son had been through a lot in the last year; new baby in the house, starting school, grandfather in hospital for six weeks, poorly grandmother and then his great grandfather died. We put all the behavior that followed down to these things, but then he started directing his behavior at me and me only. It started with just being rude, then not following instructions, being messy in his room (emptying his book selves everywhere, toys everywhere, etc) then he started being a bit physical towards me knowing that I could not do anything about it. In the end he would be coming home from school and saying "I wish you would die so it is just daddy, baby and me" In the end it seemed as though we were always shouting at each other.
Then out of the blue he opened up to my mother about what was wrong and why he was being like this. Simply, he did not really understand what was wrong with me and thought that God was doing this to me to get at him He felt that everyone he loved was getting hurt so if he started being really horrid to me then God would think he did not love me and leave me alone. It broke my heart to hear this, I felt as though once again I'd let him down.
After this we sat down and had a really honest chat about my health. As I say he is a clever boy so he was asking about different types of bloods cells, immune systems etc. His way of understanding it all was this: we have two types of blood red and white. The white ones are our special knights who carry shields to fight infections and all the bad bits so we stay healthy, however my knights attack me so they are bad knights.
Now whenever I'm not feeling too good he all but gives me mouth to mouth to try and give me some of his good knights! He is caring and kind and when is is horrid now we just put it down to his age!
Mel
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Mel_
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9 Replies
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This is so lovely. It's amazing because there is so often a real reason why kids play up and of course more often than not it is the adults fault - not necessarily parents but significant others It was brilliant he was able to speak to gran and you could talk to him about We never know just how much they can take in and I am a firm believer is letting them know everything that life can through at them rather than shielding them
Well done Mel.
Julie xx
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No sorry not adult's fault - wrong word - I am sure you know what I mean??
Hi Mel, Yes I agree. It doesn't do children any harm to know if a parent is unwell or they are suffering from something like RA. Children have great understanding- I know my little grandchildren (6 and 3) are always very sympathetic and caring if "granny" is not feeling too good and can't play with them as well as "Gandar" can (hubby).
Strangely enough, when my mother was ill with cancer, she envisaged her good blood cells as white knights galloping along to spear the bad cells and throw them out of the window. She was convinced it helped. When I had cancer 17 years ago, I used the same visualisation and it does work.
So good luck with your white knights. Your lad has great insight. LavendarLady x
well handled.. children often smarter than people perceive!!. xx
That's brilliant Mel. Its heartbreaking not being able to get down there and play with a child. And when they reject you like that - I'm pleased that you were able to make that connection and explain what was happening.
I had a relevant experience with my mother who developed RA when I was about 8. She had never been terribly well, as she was also asthmatic. So she developed RA in the early 1960s. It wasnt what we would say was under control, so she must have been in a lot of pain - and her joints became terribly deformed. As a teenager I really resented the way in which our home and lives revolved around my mother and we just didnt do the things that normal families might do - long walks, camping, exploring the unusual.
So I have resolved that I have to give people around me space to do things, and that sometimes I will be left out. that's not easy to accept, but that is my way of coping. And there are things I can do, and I try to make the most of those!
It must have been really hard for your mother living with RA then, it's amazing how far medications have come and that's something we have to be so grateful for. You've hit the nail on the head about not wanting to be resented due to ones illness, I too find that sometimes I have to miss out on things and put a positive spin on it so that others don't feel that they are pushing me out and feel bad about it. A lot of the time it's a matter of painting on the war paint (to cover my dark rings under my eyes!) and get on with the day. Mel
Yes, its keeping going isnt it that is the secret. But at the same time it helps if our partners/ people close to us, remember that when we do things its often a huge effort. So tlc should go both ways.
I have tried to tag along with expeditions, staying in comfortable places with a sketchbook to do drawings. There's a nice cafe at a nearby climbing wall, so I can go and watch and there's the illusion that I have autonomy because I get chatting to people quite easily. Its not the same as being an active participant but its a coping strategy isnt it.
Hi Cathie, too right it's a coping strategy. I go along as well with most things my son and his wife suggest but like you take a sketch book or a camera to record what is going on. The children are always popping back to see what granny has drawn and if they are in it. Not. If no cafe nearby, we put a comfortable folding chair into the back of the car which is high enough for me to sit down and get up and I am in charge of the picnic basket, towels, blankets etc (and looking after the favourite toys). It is very hard when a little person is saying come on granny, I want to show you something and you find you have stuck to the chair or the joints won't allow you to get up quickly. But I do find the children seem to understand the good and bad days. Also my son is very good and his wife's mother has RA as well so she understands too.
My hubby is very good most of the time but sometimes he forgets I am not as active as I once was - perhaps we put on such a good front we fool everyone including ourselves! Hope all goes well. LavendarLady xx
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He felt that everyone he loved was getting hurt so if he started being really horrid to me then God would think he did not love me and leave me alone. It broke my heart to hear this, I felt as though once again I'd let him down. 
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