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Just need to vent

S

skh

Guest
This kind of goes along with the post "non-CF friends don't get it" except I'm talking about family. I just received an email from one of my sisters and she stated how her daughter has a loose tooth. I know that those things are very important when it's your kid. But my daughter just had her CF appointment and her PFT's were 126 and she gained 2 lbs. I didn't want to "take away" from my sisters news but this is GREAT news to me. So I emailed back and stated how we just got back from a doc appt. and gave them the news (this was an email to all of my siblings) on the results.

Either my siblings don't "get it" or else they just don't want to. They know my daughter has CF and no I don't tell them every time she has an appointment (but I would if they showed an interest) so I am partially to blame but it would just be nice to know they care...which I know they do but...

We are pretty private and I don't expect them to call all the time to see how she's doing but it would be nice every once in awhile. The last time one of my sisters (there are 5 of us) asked about my daugher was after she had been drinking quite a bit and then the things she said/asked me I felt were inappropriate and hurt me. So maybe I am better off having it the way it is.

Sorry for whining but I just had to do it. Thanks for listening!

Sue
 
S

skh

Guest
This kind of goes along with the post "non-CF friends don't get it" except I'm talking about family. I just received an email from one of my sisters and she stated how her daughter has a loose tooth. I know that those things are very important when it's your kid. But my daughter just had her CF appointment and her PFT's were 126 and she gained 2 lbs. I didn't want to "take away" from my sisters news but this is GREAT news to me. So I emailed back and stated how we just got back from a doc appt. and gave them the news (this was an email to all of my siblings) on the results.

Either my siblings don't "get it" or else they just don't want to. They know my daughter has CF and no I don't tell them every time she has an appointment (but I would if they showed an interest) so I am partially to blame but it would just be nice to know they care...which I know they do but...

We are pretty private and I don't expect them to call all the time to see how she's doing but it would be nice every once in awhile. The last time one of my sisters (there are 5 of us) asked about my daugher was after she had been drinking quite a bit and then the things she said/asked me I felt were inappropriate and hurt me. So maybe I am better off having it the way it is.

Sorry for whining but I just had to do it. Thanks for listening!

Sue
 
A

anonymous

New member
Boy, I understand how you feel, but IMHO it's important to not get into a competition on this thing.

My sister-in-law (mother of 2 kids with CF) really did when they were little. Whatever happened to her kids (doctor's appointment, dance recital, you name it) was the most important thing in the world. She expected ALL of the uncles/aunts/cousins to drop everything and attend etc.

But, of course, couldn't make a lot of things for the cousins (and sort of dissed their usual childhood illnesses.)

I remember talking to her once about my husband's Marfans (another genetic thing that also ran in the family) and saying something like I was sure that many family's would find out that they had really serious things running through them - just didn't know it yet because the marker hadn't been found. And she said "well, NOTHING's like CF".

Yikes!!! What do you do with that kind of response?

If I'd been nicer I just would have changed the subject.
As it was I said dryly "Stop bragging."
 
A

anonymous

New member
Boy, I understand how you feel, but IMHO it's important to not get into a competition on this thing.

My sister-in-law (mother of 2 kids with CF) really did when they were little. Whatever happened to her kids (doctor's appointment, dance recital, you name it) was the most important thing in the world. She expected ALL of the uncles/aunts/cousins to drop everything and attend etc.

But, of course, couldn't make a lot of things for the cousins (and sort of dissed their usual childhood illnesses.)

I remember talking to her once about my husband's Marfans (another genetic thing that also ran in the family) and saying something like I was sure that many family's would find out that they had really serious things running through them - just didn't know it yet because the marker hadn't been found. And she said "well, NOTHING's like CF".

Yikes!!! What do you do with that kind of response?

If I'd been nicer I just would have changed the subject.
As it was I said dryly "Stop bragging."
 
J

JennifersHope

New member
Sue you are not whinning, you are sharing your feelings which is totally normal. I don't have any input for you other then when I was first dx, I was 29 and my father, who I know loves me spent the first year not able to even say the word CF.. (me either for that matter) but he was so upset, didn't know how or what to say, so he didn't say anything.. In fact, he yelled at me a lot..

I don't know if it is the same thing, but maybe your family does not know what to say, or how to be.. Maybe your family is afraid to bring it up to you because they think it can remind you of it, or they don't know what to say, or maybe they feel gulity because you have a sick kid and they don't. You just never know.. A lot of times in my life, I have misunderstood or midjudged someone before I understood why they acted a certain way.. I still tend to do that, and always kick myself later.

Jennifer
 
J

JennifersHope

New member
Sue you are not whinning, you are sharing your feelings which is totally normal. I don't have any input for you other then when I was first dx, I was 29 and my father, who I know loves me spent the first year not able to even say the word CF.. (me either for that matter) but he was so upset, didn't know how or what to say, so he didn't say anything.. In fact, he yelled at me a lot..

I don't know if it is the same thing, but maybe your family does not know what to say, or how to be.. Maybe your family is afraid to bring it up to you because they think it can remind you of it, or they don't know what to say, or maybe they feel gulity because you have a sick kid and they don't. You just never know.. A lot of times in my life, I have misunderstood or midjudged someone before I understood why they acted a certain way.. I still tend to do that, and always kick myself later.

Jennifer
 
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