stupid hope

[irismarie]

we know there is none so why do we go on thinking we will fight to live this little bit much longer just in case things get better?
OK, tomorrow will seem a little better and we shall start to make plans again but the day after?
Somehow it does not seem to be the illness that is the focus of my anxiety, my hurt, my despair. But of course it must be . I could fight the other horrors better otherwise.
Oh friends oh friends, i feel so ashamed not to be cheering yhou and encouraging you but these depths this time are so murky I cannot iimagine ever rising above them again.
I love you all

 

[Miss]

Dear Irismarie, I am so sorry I don't have the words to comfort you. Know that you are loved. Even if we cannot be there to hold you, we are there in spirit.

 

[joelc]

I am extremely sorry that you are so down these days. The doctor should be able to help with medication. Have you explored that possibility?

 

[pops66now]

Hello Irismarie, I don't know you personally, but from what I have read you show
a lot of Love for others and I know a whole lot of people out there Love you.
Just being on here and talking to them lifts them up and gives them HOPE.
You have a lot of knowledge you can share with people who are scared and
searching for answers. It is good to have a friend like you.
LOVE YOU WAYNE

 

[tdamess]

right now i ask my self the same question , why hope ... hope was keeping me going untill tonight when my son fell twice and now dispear has set in , i am going to his house tomorrow so his wife can go to work so , our hard journey has now begun and i am so afraid help will not be in time for him and i know i am being selfish in my fear right now as so many of us are facing this but , no the cure will not be here tomorrow morning when we wake up but we need to try for our loved ones your kids are the reason you need to keep going , your friends here need to have you keep going we dont want to lose anyone else , more than enough have been lost this year .. we may of lost hope but we have love and that what can give the comfort and the will to endure ... i hate being strong ..

 

[sadiemae]

I had so much hope for the Diaphragm Pacer, and have now found out that it will only be able to help about 10% of PALS. My husband is devastated that he is probably not going to be able to be helped by it. Sometimes hope hurts.

 

[irismarie]

rdarness so sorry about your son, but i think he has a long way to go vyet and he is young so there IS far more hope. tHERE IS TIME? EVEN IF HE HAS TO BE IN A WHAEEL CBAIR WHICH IS FAR FROM BEING THE worst thing about the illness. I understand the longing but to be strong but to wat=nt to curl in a foetal ball and be helpless and leave all the work and worry tooithers for a change.
love to you all.

 

[tdamess]

so sorry sadiemae , i had my hope here for that also so did my son i didnt know that till just now more hope gone ...

irismarie i dont blame you the way you feel i am agreeing with the loss of hope.. i just want you to hang on ... i know the worst is yet to come but the fall's are the beginning of reality slap for me as it started in his hand and i knew he couldnt pick up a pen and write but could still use for bigger task and still can without strenght thou . and i think we are all allowed to have our selfish moments and pity parties i actually think that they are what makes you stronger in the long run