Hi all
Sorry to have let this thread slip -- offline for a couple of days...
Thanks to everyone for these thoughts -- everyone seems to so UNDERSTAND. So valuable. Twitchy and Sugarbum: I completely see what you mean about where family is coming from...I know this so deep in my heart...and feel maybe I should talk to them...BUT all they could do is listen. This is so right. And perhaps their main drive would be to *do* something. To help. And this is really impossible.
I think it's hard for some people to know/understand that support *is* a way of helping?
Twitchy, I think maybe Christmas struck me hard -- just for the time of year, the added stress of it...But the truth is, we haven't even been around these particular family members (the close ones I mean) since E's diagnosis... not on our own. We're all very busy. I'm thinking that maybe when we do get together I should just open the can of worms, and say how I'm feeling. I think you are right too in that they would be truly mortified. They will be feeling helpless.
And bex -- yes, so many chronic conditions have this. The real root of my feelings also lies in the fact that my nephew suffers from MANY chronic conditions...His life expectancy has never been great, but he thrives nonetheless. Things are very rough there. Same side of family. One of his conditions is Type 1. Fact is we have always, always asked about him, about how things are going -- and so rarely have ever had the chance to ask after the parents and siblings. We have witnessed it, and OH and I have spoken at length about it all over the years...But it's hard to speak about something so all encompassing from a place of real ignorance...AND they are not the relatives we are hugely close to...They are family, less so friends, I guess.
So the knots are tied up all over in our lives, as in so many lives! On one hand I feel we have not asked the right questions over the years, not been there for my sister in law and her family...On the other hand, our situation is so much more subtle, more insidious, and easier to ignore...I don't expect things from her, but I do from other family members....
Will this ever untangle? I doubt it. But thanks to all of your responses here, I think that in time I may bring all this up with those who are in the emotional position to give and understand. Not everyone is, as you've all said...
Shiv, your situation is different and rather heartening. I hope and pray that my son says what you say, that we are here for him when he wants, and that he can discuss things as and when he wants. Please do send your parents this way. They will find so much familiar here!
Katie, again, I really hope that we can keep up to date with things as E grows. This must be deeply frustrating for you. People's ignorance -- esp your close family's -- is possibly the *worst* kind of ignorance, the worst kind of frustration. Because it also has disappointment thrown in... I'm thinking that sitting down with your mum may be a thought? A la Twitchy's suggestions?!
Another very close friend of mine -- who has gone through her fair share of things -- has been in touch about all this...and her phrase for what seems to strike with most force, and unexpectedly, is 'the comfort of strangers'. This drawing of strength from people -- like on this forum -- and like a random parent of my daughter's friend -- and feeling truly understood and supported -- people who are in effect strangers -- and sometimes these people are medical professionals who somehow just *know* and *get* things -- this is the comfort of strangers. Unexpected, but gifts. And enough to get us through.
xxoo
Sorry to have let this thread slip -- offline for a couple of days...
Thanks to everyone for these thoughts -- everyone seems to so UNDERSTAND. So valuable. Twitchy and Sugarbum: I completely see what you mean about where family is coming from...I know this so deep in my heart...and feel maybe I should talk to them...BUT all they could do is listen. This is so right. And perhaps their main drive would be to *do* something. To help. And this is really impossible.
I think it's hard for some people to know/understand that support *is* a way of helping?
Twitchy, I think maybe Christmas struck me hard -- just for the time of year, the added stress of it...But the truth is, we haven't even been around these particular family members (the close ones I mean) since E's diagnosis... not on our own. We're all very busy. I'm thinking that maybe when we do get together I should just open the can of worms, and say how I'm feeling. I think you are right too in that they would be truly mortified. They will be feeling helpless.
And bex -- yes, so many chronic conditions have this. The real root of my feelings also lies in the fact that my nephew suffers from MANY chronic conditions...His life expectancy has never been great, but he thrives nonetheless. Things are very rough there. Same side of family. One of his conditions is Type 1. Fact is we have always, always asked about him, about how things are going -- and so rarely have ever had the chance to ask after the parents and siblings. We have witnessed it, and OH and I have spoken at length about it all over the years...But it's hard to speak about something so all encompassing from a place of real ignorance...AND they are not the relatives we are hugely close to...They are family, less so friends, I guess.
So the knots are tied up all over in our lives, as in so many lives! On one hand I feel we have not asked the right questions over the years, not been there for my sister in law and her family...On the other hand, our situation is so much more subtle, more insidious, and easier to ignore...I don't expect things from her, but I do from other family members....
Will this ever untangle? I doubt it. But thanks to all of your responses here, I think that in time I may bring all this up with those who are in the emotional position to give and understand. Not everyone is, as you've all said...
Shiv, your situation is different and rather heartening. I hope and pray that my son says what you say, that we are here for him when he wants, and that he can discuss things as and when he wants. Please do send your parents this way. They will find so much familiar here!
Katie, again, I really hope that we can keep up to date with things as E grows. This must be deeply frustrating for you. People's ignorance -- esp your close family's -- is possibly the *worst* kind of ignorance, the worst kind of frustration. Because it also has disappointment thrown in... I'm thinking that sitting down with your mum may be a thought? A la Twitchy's suggestions?!
Another very close friend of mine -- who has gone through her fair share of things -- has been in touch about all this...and her phrase for what seems to strike with most force, and unexpectedly, is 'the comfort of strangers'. This drawing of strength from people -- like on this forum -- and like a random parent of my daughter's friend -- and feeling truly understood and supported -- people who are in effect strangers -- and sometimes these people are medical professionals who somehow just *know* and *get* things -- this is the comfort of strangers. Unexpected, but gifts. And enough to get us through.
xxoo
