why

jordansmum

hi guys why is this disease so horrible i have just spent the last last half hour cuddling jordan to sleep because he feels he is a berdon (sp) on me i can't believe it wether something has happened at school i don't know or maybe it's something i have done i don't know but all i know is i feel so sad the tears are streaming and i feel so guilty, i wish i could take arther away but i cant it's so horrrible

chicara

Hi jordansmum

I'm fairly new to the forum but was diagnosed with Still's Disease when I was nine. I can empathise with how Jordan is feeling but please, please believe me when I say it will have absolutely nothing to do with anything you have said or done. I too went through a terrible time when I was younger feeling I was a burden to my family and feeling as though everything had to revolve around me. I remember one particular day we were supposed to be going on a day out to the seaside but my parents wanted to cancel as they felt I was having a bad day and didn't feel I was up to it. I cried and sobbed because I felt so guilty that my disease was stopping my brother and sister from having the day out they'd be promised and looking forward to for over a week. So I understand how Jordan feels, it's hard to accept that your disease has such a major impact on the whole family and that it isn't somehow your fault.

But please don't think you have done anything to upset him, all you can do is be there and keep reassuring him.

I hope you and Jordan have a better day tomorrow.

Take care

Chicara

daylily

poor young man. I feel for him and you.
Extra cuddles and hugs all round for a few days.
Take care of each other
anne xx

valval

just because he is so young will not stop him getting down about arther from time to time and it worse for him as he does not have this place to let off steam and know we will understand the reason so many of us have a moan on here is so we do not have to burdon our familys with all we feel and are going through he must feel the same things but worse as he is so young it would be normal for him to feel this way from time to time and the best thing you can do for him is what you did reasure him and give him a cuddle you are doing a great job with something that is hard to cope with hugs for you and keep up the good work we are here for you val

barbara12

Hello jordansmum
You feel guilty because you are such a good mum, It must be so hard for you all.
Jordan will have bad days, but he will get there and have lots of good days, all you can do is your best, keep talking to us, we are always here for you.
Sending you all loads of hugs ((((((())))))
Love
Barbara xxx

angel1

Your post had me in tears with you, whilst, at the same time, feeling so much admiration for you.

To have such a caring, feeling little boy, is testament to your devotion as a mum. Many sick children, understandably, would think only of their own needs, and not how their illness was impacting on their loved ones. Not Jordan, however, thanks to your total devotion. What a lovely lad.

Carry on just as you always have. Love him, talk to him, and be so very proud of him. Your username says it all.........Much love.......Ange.

dorcas

Oh Jenny

what can I say? words are so inadequate!

I am so so sorry to hear of Jordan's sadness and pain and your anguish for him as a loving and caring mum.

he is a sensitive and loving child, that's for sure, and this is a very difficult time.. but you will come through this together...you are doing all you can and he will know that.

hold each other close.

Sending you much love, strength and hope that today's a better day.. for both of you.

love and ((((hugs))))

Iris xxx

dreamdaisy

This disease is wearing for eveyone involved: it's tough on Jordan and tough on his family. It's probably toughest for you as there is nothing you can do: you cannot do the one thing you really wish, which is to make it all disappear. All you can do is reassure your boy that he never was, never is and never will be a burden and that he is much loved. Better times will come back, you don't know when, but they will. DD

beowolf

hi jordansmum.... nice to meet you

sorry you're going through such a bad time at the moment

he sounds like a great son.....i bet you are really proud, and he is so lucky to have a caring mum like you

just wanted to srnd my best wishes and a few hugs
(((((((((((()))))))))))))))

love

Beo

lindalegs

Poor Jordan, we know just how he feels

You're doing all the right things Jenny and the best thing is that he's telling you how he feels and not bottling it up that would be the last thing you want. There will be days when he feels like this but other times when it's not as important to him and it's probably because it was late and he was very tired.

I hope today's a better day for you both.

Luv Legs

speedalong

Hi Jordan's mum,

arther is cruel disease and it is hard on the suffer and their family. Hope you enjoyed your cuddle and both had a restorative sleep last night.

Perhaps you need to find out about play therapy/counselling/a support group for Jordan. Us adults find the forum so helpful because we can unburden ourselves without having to always involve our friends or families - perhaps he would benefit from that too.

I hope you have a better day today.

Speedy

Would Jordan keep a diary? It could be traditional or in pictorial form or even like a comic strip. Might be a good outlet for him.

nanasue

Hi Jenny,
So sorry to hear Jordan is having such a bad time and you also. He sounds like a lovely caring little boy and you are obviously a good Mum, it must be so hard for both of you. I don't really have anything to add except to say I agree with the others, keep reassuring him that you love him no matter what and he will never be a burden. Sending you lots of love and (((()))),

Sue xxx

dorcas

Hi Jenny,

still thinking about you and Jordan and sending you more (((hugs)))

hope today has been better for you both.. and tomorrow even better.

lots of love,


Iris xxx

skezier

Hi Jenny,

All I can do is send you ((( )))'s and hopes that both Jordan and you have a better day tomorrow. Cris xx

julie47

Hi jenny

I hope you and jordan are feeling much better today.

Sending you both hugs((((((())))))

Juliepf x

dreamdaisy

Hello to you both. I hope you are all OK today, thinking of you. DD

jordansmum

hi guys thanks so much again for your support jordan feels much better now he is feeling in control again ,i think alot of his problems were going back to school that has gone through loads of changes ,new teachers, longer day's and a new routine, i am waiting to see the senco leader as i am not sure that all the new teachers know about jordans arthritis so this could be having an impact on him.He also had 2 hospital appointements last week and i feel he was very very tired
hope you are all well today xx jenny.

marion1952

Glad to hear he's had a better day..

Marion x

woodbon

Hi, I'm sorry, it must be hard for you to see your little boy like that. You may never know why he feels like that tonight, so if you can, just wait, he may well be fine or he may want to tell you in his own time.

Its easy for me to sit here and say that, I know, but it must be so much harder for you. I wish I could say something really helpful, but I can't, all I can do is offer you my love. Sue xxxx

dreamdaisy

I know this is asking a lot of you, but would it be possible to put together a sort of 'info pack' on arthritis and how it affects Jordan? Many teachers will be completely unaware that a child can suffer from this, will have no idea how it affects the child and have no idea about what they could do to help him, and any others also affected. You do need to make sure that everyone knows about it: I know from my own experience as a private tutor that schools are sometimes dreadful at passing on essential information to teachers about a child with health problems. DD

jordansmum

thanks DD thats food for thought i shall do that also the oc health are writing to the school to see what provisions they have in place for him. Yesterday he came home in pain and said it is the seating he finds it so uncomfortable he takes a cushion but this is not helping he also played badmington as well in pe and even though he said he couldnt sit on the floor he was told he had to grrrrrrrrr i thought i had sorted this all out before it's so frustrating , well hope everyone is having a good day xx jenny

dreamdaisy

I think you need an info pack. Seriously, some teachers won't have a clue, I know 'cos I am one and I have had to deal with pupil health issues in the past. I always wanted to find out what I should be doing, how I needed to react - some were not bothered in the slightest. Some teachers are totally intransigent when it comes to dealing with those who don't 'fit' the profile of the children they are used to. I've seen that in the past at work, and in my current employment as a specialist tutor. I hope he has a good day today - children find it hard to stand their corner against the 'authority' of a teacher when they shouldn't need to. (Rotten grammar but you get my drift!) DD

julie47

Hi jordansmum

Glad to hear jordan was feeling a little better and I think DD has had a good Idea for you , making up a pack.

Poor jordan making him sit on the floor, I too would have been angry and upset for him.

Hope he has a good day today

sending you both a hug

juliepf x

jordansmum

hi guy's ,i have a copy of"chat 2 teachers" a booklet sent from the arthritis care people god bless them they are so wonderful so i am taking that into school today its a teachers guide to juvenile arthritis it goes through what ja is, school life with arthritis ,teachers check lists understanding the effects of arthritis contacts for them and there legal obligations so hopefully this will help. I don't know what i would do without this forum thanks again keep well xx jenny

frogmorton

Hiya

Poor Jordan and poor you I am so sorry I missed this yesterday :oops:

Those leaflets should help no end. My youngest has epilepsy and i did something similar for her. You dont want them treated too differently so they 'stand out' but at the same time I think teachers should lok out for them and not do something as ludicrous as make the lad sit on the floor!!

They have benches dont they?

:x :x

Love

Toni xx

barbara12

Hi jordansmum
Thankyou for the update, I was so worried about you both, like you say, he had some big changes to put up with, I am glad he is feeling a little better.
Hope you are coping ok, don't forget to look after yourself has well.
Love and hugs (((((()))))
Barbara xx