To speak of CF or not...

[ktsmom]

Jody - I was warned by a mom who has a Down Syndrome child that people would say some STUPID things!

We have a similar situation, but my tears (and frustration) about speaking of CF happen when people offer support and kindness!

As word has gotten around the school where my daughters attend, parents have approached me at football games and other school functions offering support, sympathy, etc. Sometimes I can hold it together and sometimes I can't - usually at the point in the conversation when they look me dead in the eye and say "and how are YOU doing?"

Last night was the Fall Carnival and a very very kind mom, who is also a physician, asked me if I was on anti-depressants when I started to finally tear-up during our conversation. And told me that I should be on them when I told her no I wasn't! This is our reality now, and I'm not going to try to medicate myself through it. (I did use Xanax to help me through the first 30 days or so). Can you spell anxiety?

And today during Katy's parent-teacher conference (for preschool! LOL!) I clutched a McDonald's napkin in my hand for the inevitable - yup, when the teacher told me that folks wanted to help and what kind of help did we need, I broke down and said I was saving that (asking for help) for what I feel is inevitable - some day Katy may have to be hospitalized for IV's or whatever.

To any non-parents reading this, you may think that I think it is all about me. It's not; I know that. It's just very complicated.


Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

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[gr33nie]

What a great topic.<br>
<br>
I haven't had to deal with this yet.  We just found out that
Eli had CF less then a month ago and have been at home with only
close family.  I let family and friends know through e-mail
which I think was easier because I didn't have to look anyone in
the eye.  I have yet to talk that much about it in person and
I'm glad that I've read through the responses to prepare myself for
what might be coming.

 

[gr33nie]

What a great topic.<br>
<br>
I haven't had to deal with this yet.  We just found out that
Eli had CF less then a month ago and have been at home with only
close family.  I let family and friends know through e-mail
which I think was easier because I didn't have to look anyone in
the eye.  I have yet to talk that much about it in person and
I'm glad that I've read through the responses to prepare myself for
what might be coming.

 

[gr33nie]

What a great topic.<br>
<br>
I haven't had to deal with this yet.  We just found out that
Eli had CF less then a month ago and have been at home with only
close family.  I let family and friends know through e-mail
which I think was easier because I didn't have to look anyone in
the eye.  I have yet to talk that much about it in person and
I'm glad that I've read through the responses to prepare myself for
what might be coming.

 

[Abby]

I'm not usually shy about telling people about Abby's cf. It's a huge part of our life and hard to keep secret. I do cringe at the looks of pity and usually say something if I see it coming. Something like we all have our issues to deal/live with and this is ours. For the most part she's healthy and a wonderful kid, what more can I ask for.

For the most part, my tears have dried up. Now, I only cry if we have to go to the hospital because that is such a huge reminder that she is not like all the other kids.

I did cry like a baby recently when we were reading a book about a little girl that has cf and she talks about all her treatments and why she needs them. (It's a book for kids) Abby said, look mommy, she has cf just like me!!! She was so excited just to see somebody else doing what she does and I just started crying. That was too much for me to handle.

I was at a restaraunt last year and I had some Great Strides posters that I had made with Abby's pictures on them for a fundraiser a friend was doing at her office. Anyway, I was meeting this friend for lunch so she could take the posters with her and the server saw them. She looked at them and said, "oh cf, those kids don't live past the age of 12". I was in utter shock!! Talk about insensitive. When she came back I told her very kindly that my daughter was the person on the poster and that she does have cf and yes, in the past, most children died at a young age and unfortunately some still do, but that advances in medicine and care have come along in leaps and bounds and most cfers live into adulthood and lead pretty normal lives. Not easy lives, but they are surviving. She had this look of horror on her face because she knew she was an ass with her first comment and apologized. I just said thank you and left it at that.

 

[Abby]

I'm not usually shy about telling people about Abby's cf. It's a huge part of our life and hard to keep secret. I do cringe at the looks of pity and usually say something if I see it coming. Something like we all have our issues to deal/live with and this is ours. For the most part she's healthy and a wonderful kid, what more can I ask for.

For the most part, my tears have dried up. Now, I only cry if we have to go to the hospital because that is such a huge reminder that she is not like all the other kids.

I did cry like a baby recently when we were reading a book about a little girl that has cf and she talks about all her treatments and why she needs them. (It's a book for kids) Abby said, look mommy, she has cf just like me!!! She was so excited just to see somebody else doing what she does and I just started crying. That was too much for me to handle.

I was at a restaraunt last year and I had some Great Strides posters that I had made with Abby's pictures on them for a fundraiser a friend was doing at her office. Anyway, I was meeting this friend for lunch so she could take the posters with her and the server saw them. She looked at them and said, "oh cf, those kids don't live past the age of 12". I was in utter shock!! Talk about insensitive. When she came back I told her very kindly that my daughter was the person on the poster and that she does have cf and yes, in the past, most children died at a young age and unfortunately some still do, but that advances in medicine and care have come along in leaps and bounds and most cfers live into adulthood and lead pretty normal lives. Not easy lives, but they are surviving. She had this look of horror on her face because she knew she was an ass with her first comment and apologized. I just said thank you and left it at that.

 

[Abby]

I'm not usually shy about telling people about Abby's cf. It's a huge part of our life and hard to keep secret. I do cringe at the looks of pity and usually say something if I see it coming. Something like we all have our issues to deal/live with and this is ours. For the most part she's healthy and a wonderful kid, what more can I ask for.

For the most part, my tears have dried up. Now, I only cry if we have to go to the hospital because that is such a huge reminder that she is not like all the other kids.

I did cry like a baby recently when we were reading a book about a little girl that has cf and she talks about all her treatments and why she needs them. (It's a book for kids) Abby said, look mommy, she has cf just like me!!! She was so excited just to see somebody else doing what she does and I just started crying. That was too much for me to handle.

I was at a restaraunt last year and I had some Great Strides posters that I had made with Abby's pictures on them for a fundraiser a friend was doing at her office. Anyway, I was meeting this friend for lunch so she could take the posters with her and the server saw them. She looked at them and said, "oh cf, those kids don't live past the age of 12". I was in utter shock!! Talk about insensitive. When she came back I told her very kindly that my daughter was the person on the poster and that she does have cf and yes, in the past, most children died at a young age and unfortunately some still do, but that advances in medicine and care have come along in leaps and bounds and most cfers live into adulthood and lead pretty normal lives. Not easy lives, but they are surviving. She had this look of horror on her face because she knew she was an ass with her first comment and apologized. I just said thank you and left it at that.

 

[CFTwins]

I always find this board so amazing... it seems like every time I turn a corner, there you are in the same place! Tonight I asked my husband, "do you feel like everyone talks to you like you're wounded?" We were at his work party and his boss cornered me about how I was doing and how I should be taking care of myself and all that crap (you know I don't mean crap.. but you know how it feels).

Everything was so dramatic at first (2 months preemies with MI) and we live in a small town... so everyone knows... even people who we don't actually know - who see me in the grocery store. If they don't know us.. I just use the "rough start" answer. For the most part everyone knowing is a blessing... help, donations, support, kindness. But just sometimes I want people to see us as "whole" and as a family with two great twins... not as wounded.

Anybody have great succinct answer when someone says "how are the kids?" They often don't take "fine" for an answer, especially when they know.

THANKS! - Stacy

 

[CFTwins]

I always find this board so amazing... it seems like every time I turn a corner, there you are in the same place! Tonight I asked my husband, "do you feel like everyone talks to you like you're wounded?" We were at his work party and his boss cornered me about how I was doing and how I should be taking care of myself and all that crap (you know I don't mean crap.. but you know how it feels).

Everything was so dramatic at first (2 months preemies with MI) and we live in a small town... so everyone knows... even people who we don't actually know - who see me in the grocery store. If they don't know us.. I just use the "rough start" answer. For the most part everyone knowing is a blessing... help, donations, support, kindness. But just sometimes I want people to see us as "whole" and as a family with two great twins... not as wounded.

Anybody have great succinct answer when someone says "how are the kids?" They often don't take "fine" for an answer, especially when they know.

THANKS! - Stacy

 

[CFTwins]

I always find this board so amazing... it seems like every time I turn a corner, there you are in the same place! Tonight I asked my husband, "do you feel like everyone talks to you like you're wounded?" We were at his work party and his boss cornered me about how I was doing and how I should be taking care of myself and all that crap (you know I don't mean crap.. but you know how it feels).

Everything was so dramatic at first (2 months preemies with MI) and we live in a small town... so everyone knows... even people who we don't actually know - who see me in the grocery store. If they don't know us.. I just use the "rough start" answer. For the most part everyone knowing is a blessing... help, donations, support, kindness. But just sometimes I want people to see us as "whole" and as a family with two great twins... not as wounded.

Anybody have great succinct answer when someone says "how are the kids?" They often don't take "fine" for an answer, especially when they know.

THANKS! - Stacy

 

[point]

Another CF'er responding vs. a parent of a CF'er.

I find it really difficult to tell people sometimes. When I first started working after college graduation, I worked within my department and made friends, etc for a year before I told anyone. I passed my cough off as allergies and sinus problems.

I understand what you are saying in regards to getting into the whole story. I realize how outrageous it must sound to people when I am 29 and telling them that the average life expectancy is 36.whatever years. They look at me as if I am from another planet!

 

[point]

Another CF'er responding vs. a parent of a CF'er.

I find it really difficult to tell people sometimes. When I first started working after college graduation, I worked within my department and made friends, etc for a year before I told anyone. I passed my cough off as allergies and sinus problems.

I understand what you are saying in regards to getting into the whole story. I realize how outrageous it must sound to people when I am 29 and telling them that the average life expectancy is 36.whatever years. They look at me as if I am from another planet!

 

[point]

Another CF'er responding vs. a parent of a CF'er.

I find it really difficult to tell people sometimes. When I first started working after college graduation, I worked within my department and made friends, etc for a year before I told anyone. I passed my cough off as allergies and sinus problems.

I understand what you are saying in regards to getting into the whole story. I realize how outrageous it must sound to people when I am 29 and telling them that the average life expectancy is 36.whatever years. They look at me as if I am from another planet!

 

[Mommafirst]

Oh my gosh, thank you so much for bringing up this topic.  I
am so interested in reading everyone's answers.  <br>
<br>
When we going through the testing process, we went in for like 4
sweat tests and 3 blood draws over maybe a two month period -- we
kept getting borderline, not enough sweat, and weird results.
 Well my daughter isn't showing symptoms, and "doesn't
look sick", so the lab tech actually said to me as we were
doing the last blood draw, "oh CF, some lad here had 2 kids
die of that in their teens."   All I could think
was, don't you realize that this testing is miserable and emotional
-- hearing about the deaths at this point is unbearable!!!
 And this was the lab tech for the CF center!!!!<br>
<br>
I've started telling people pretty nonchalantly.  I know what
you all mean by the pity looks, so my revelation always comes with
a follow up of, "but she's doing great!!  Really!!
 We are very hopeful."  I feel like I have to make
them feel better, because I know they feel bad and uncomfortable.
  I want people to know, because it is a huge part of who
we are right now -- who we will be for ever -- and I couldn't
imagine connecting with other people if they didn't know.  I
also feel it is sooo important to educate willing others.  I'm
a college professor, and I don't often tell personal stories
in my class unless they are relative to the concepts we are
discussing (which happens a lot, LOL, I teach communication
classes).  But in my classes, I have used examples from the CF
stuff and discussed it as a way of educating my students a
little.<br>
<br>
I always have mixed feelings when bringing up CF, but for the most
part I have discovered that most of the people in my life are
incredibly kind and generous.  My daughter was diagnosed less
than 5 months ago, and already my MOMS group has formed a team for
the Great Strides walk here and my moms bridge group is holding
monthly bridge tournaments to benefit the CFF -- all because of the
work of people who want to help.  <br>
<br>
<br>
<br>
<br>

 

[Mommafirst]

Oh my gosh, thank you so much for bringing up this topic.  I
am so interested in reading everyone's answers.  <br>
<br>
When we going through the testing process, we went in for like 4
sweat tests and 3 blood draws over maybe a two month period -- we
kept getting borderline, not enough sweat, and weird results.
 Well my daughter isn't showing symptoms, and "doesn't
look sick", so the lab tech actually said to me as we were
doing the last blood draw, "oh CF, some lad here had 2 kids
die of that in their teens."   All I could think
was, don't you realize that this testing is miserable and emotional
-- hearing about the deaths at this point is unbearable!!!
 And this was the lab tech for the CF center!!!!<br>
<br>
I've started telling people pretty nonchalantly.  I know what
you all mean by the pity looks, so my revelation always comes with
a follow up of, "but she's doing great!!  Really!!
 We are very hopeful."  I feel like I have to make
them feel better, because I know they feel bad and uncomfortable.
  I want people to know, because it is a huge part of who
we are right now -- who we will be for ever -- and I couldn't
imagine connecting with other people if they didn't know.  I
also feel it is sooo important to educate willing others.  I'm
a college professor, and I don't often tell personal stories
in my class unless they are relative to the concepts we are
discussing (which happens a lot, LOL, I teach communication
classes).  But in my classes, I have used examples from the CF
stuff and discussed it as a way of educating my students a
little.<br>
<br>
I always have mixed feelings when bringing up CF, but for the most
part I have discovered that most of the people in my life are
incredibly kind and generous.  My daughter was diagnosed less
than 5 months ago, and already my MOMS group has formed a team for
the Great Strides walk here and my moms bridge group is holding
monthly bridge tournaments to benefit the CFF -- all because of the
work of people who want to help.  <br>
<br>
<br>
<br>
<br>

 

[Mommafirst]

Oh my gosh, thank you so much for bringing up this topic.  I
am so interested in reading everyone's answers.  <br>
<br>
When we going through the testing process, we went in for like 4
sweat tests and 3 blood draws over maybe a two month period -- we
kept getting borderline, not enough sweat, and weird results.
 Well my daughter isn't showing symptoms, and "doesn't
look sick", so the lab tech actually said to me as we were
doing the last blood draw, "oh CF, some lad here had 2 kids
die of that in their teens."   All I could think
was, don't you realize that this testing is miserable and emotional
-- hearing about the deaths at this point is unbearable!!!
 And this was the lab tech for the CF center!!!!<br>
<br>
I've started telling people pretty nonchalantly.  I know what
you all mean by the pity looks, so my revelation always comes with
a follow up of, "but she's doing great!!  Really!!
 We are very hopeful."  I feel like I have to make
them feel better, because I know they feel bad and uncomfortable.
  I want people to know, because it is a huge part of who
we are right now -- who we will be for ever -- and I couldn't
imagine connecting with other people if they didn't know.  I
also feel it is sooo important to educate willing others.  I'm
a college professor, and I don't often tell personal stories
in my class unless they are relative to the concepts we are
discussing (which happens a lot, LOL, I teach communication
classes).  But in my classes, I have used examples from the CF
stuff and discussed it as a way of educating my students a
little.<br>
<br>
I always have mixed feelings when bringing up CF, but for the most
part I have discovered that most of the people in my life are
incredibly kind and generous.  My daughter was diagnosed less
than 5 months ago, and already my MOMS group has formed a team for
the Great Strides walk here and my moms bridge group is holding
monthly bridge tournaments to benefit the CFF -- all because of the
work of people who want to help.  <br>
<br>
<br>
<br>
<br>

 

[lemonstolemonade]

As always, Heather, it seems that you and I are on the same
wavelength. It has been a struggle. We are pitied even in our
pedi's office. Our infant is doing very well and we have high hopes
that she will never show symptoms, but it is amazing to me how
inconsiderate folks can be when they talk about CF related deaths.
I think it has to do with lack of education, experience, and tact
on their part.<br>
<br>
Things that even make me cringe...the respiratory tech at our last
appointment said, "hum...interesting," after listening to
our infant's chest and then she walked out! I was panic-stricken.
The doctor had nothing to say about it, but my husband and I both
agree that next time we'll call her on it right there.<br>
<br>
What do you do? I'm proactive in telling folks that we have a
genetic diagnosis of CF, but, like your daughter, we're doing great
and we are hopeful. There are folks who think we are germaphobes
now because we carry antibac everywhere we go. Until folks want to
be educated and want to see our children as a child, not a horrible
disease, I'm afraid that we'll continue getting those sort of
comments.<br>
<br>
I'm learning I need to grow a thick skin. Maybe we need to start a
thread of oneliners to use to retort to these folks. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Life is
hard enough on us as parents to keep our child's CF diagnosis to
ourselves. I believe the more that know, the better, however, we
have got to make people understand it isn't a death sentence any
longer for the majority. It is just our way of life now. Have you
all noticed the dynamics of your friendships change as well? What
about family ones? Ok, I'm hijacking. SORRY! Don't answer. But
those were the hardest things for us to overcome...<br>
<br>
Thanks you all for posting. This is a great thread.<br>
<br>
A