Announcing to Your Community That Your Child Has CF

[AleksandraKaczynska]

I try not to tell everybody - just friends and family and people who teach Asia swim and ginastic teacher - but apart from that I try not - soemtimes people ask me why Asia does not go to kindergaden and I answere that I have little baby now and it works. I also try to make the cpt while there are no guests - esspecially family - they tent to look at Asia with such concern and worry - that I don't want her to see it so she will not feel bad it. She is 3 so she understands alot now. I also try not to talk about this while there are other kids listening - since they can be cruel and can hurt baddly.
<br />And for fundraising - well we deciced to go to a press meeting in two weeks to help our fund as a family with a child with cf - but we live in a big city - the capital - and it's not like telling your community. I often wonder what will I do when Asia starts school - tell the class or not... it's a chance to teach others about cf but I'm not sure it's a good idea - I guess we'll see- if her cf will be visible to other kids or not - the parents are howvere a different matter and I'll take it as it goes.
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[izemmom]

I struggle with this, too. My gut feeling is that it does Emily more good in the long run to talk about CF now than it does to "hide" it. I want her to be the kind of adult who knows who she is, and she IS a person with CF. I want her to understand her disease and talk about it to others with authority and confidence. I never want her to think that CF is a hinderance or a reason to be pitited.

I did a lot of thinking about the kinds of CF adults who post here and have posted here in the past. The ones who were the kinds of people I hope Emily grows up to be were very often the ones who had parents who were forthcoming and honest.

That being said, I know there will be a day when Emily will say "ENOUGH!", and that will be that. Until she changes her mind, of course.

Since she was a baby, I have made fundraising montages. When she was 2 1/2, she would cry everytime we watched it, because that year I had used the song "You are my sunshine." The line, please don't take my sunshine away made her sad. The following year, I used a Jack Johnson song (actually a very upbeat song) that ends with the words, "Please don't go away." Again, tears from her every time she hears it. It's played ALOT in grocery stores and had led to some interesting moments.

So, the year after that, when I started to work on the montage, she was very upset and said she didn't want me to make one. So, I didn't. There was no way I was going to upset her again, to that extent.

That brings us to this year. This year, I asked her how she felt about it. Initially she said she didn't want one. I planned to make one on the sly, anyway, because SO many people had asked for one to use in their fundraising (our friends and family and Great Strides walkers...)But, then she said she wanted to pick the songs. So, I am working on one with Firework and Live Like There's NO Tomorrow...two of her favorite songs.

My whole point here, I guess, is that it doesn't hurt to be "out there" as long as you follow the child's lead when she's old enough.

We do a presentation for her classmates at school/daycare each year, which she is very willing to do. Emily has to take Enzymes at school, and the kids see her feeding tube. Those things will always be there, so the kids might has well have some idea why. We send a fundraising letter to the parents of every kid in her class too, and explain the basics of CF. These things sure have made it easier to drop her off for birthday parties with her enzymes in tow!!!

If at some point she wants to stop this, so be it. Yes, everyone will already know, but my hope is that by then, everyone will know her as Emily the kid who is feisty, really good at gymnastics, a good student (if a bit naughty in class)and the cute blond with gorgeous blue eyes...and not just Emily with CF.

Sorry this was so long!

 

[izemmom]

I struggle with this, too. My gut feeling is that it does Emily more good in the long run to talk about CF now than it does to "hide" it. I want her to be the kind of adult who knows who she is, and she IS a person with CF. I want her to understand her disease and talk about it to others with authority and confidence. I never want her to think that CF is a hinderance or a reason to be pitited.

I did a lot of thinking about the kinds of CF adults who post here and have posted here in the past. The ones who were the kinds of people I hope Emily grows up to be were very often the ones who had parents who were forthcoming and honest.

That being said, I know there will be a day when Emily will say "ENOUGH!", and that will be that. Until she changes her mind, of course.

Since she was a baby, I have made fundraising montages. When she was 2 1/2, she would cry everytime we watched it, because that year I had used the song "You are my sunshine." The line, please don't take my sunshine away made her sad. The following year, I used a Jack Johnson song (actually a very upbeat song) that ends with the words, "Please don't go away." Again, tears from her every time she hears it. It's played ALOT in grocery stores and had led to some interesting moments.

So, the year after that, when I started to work on the montage, she was very upset and said she didn't want me to make one. So, I didn't. There was no way I was going to upset her again, to that extent.

That brings us to this year. This year, I asked her how she felt about it. Initially she said she didn't want one. I planned to make one on the sly, anyway, because SO many people had asked for one to use in their fundraising (our friends and family and Great Strides walkers...)But, then she said she wanted to pick the songs. So, I am working on one with Firework and Live Like There's NO Tomorrow...two of her favorite songs.

My whole point here, I guess, is that it doesn't hurt to be "out there" as long as you follow the child's lead when she's old enough.

We do a presentation for her classmates at school/daycare each year, which she is very willing to do. Emily has to take Enzymes at school, and the kids see her feeding tube. Those things will always be there, so the kids might has well have some idea why. We send a fundraising letter to the parents of every kid in her class too, and explain the basics of CF. These things sure have made it easier to drop her off for birthday parties with her enzymes in tow!!!

If at some point she wants to stop this, so be it. Yes, everyone will already know, but my hope is that by then, everyone will know her as Emily the kid who is feisty, really good at gymnastics, a good student (if a bit naughty in class)and the cute blond with gorgeous blue eyes...and not just Emily with CF.

Sorry this was so long!

 

[izemmom]

I struggle with this, too. My gut feeling is that it does Emily more good in the long run to talk about CF now than it does to "hide" it. I want her to be the kind of adult who knows who she is, and she IS a person with CF. I want her to understand her disease and talk about it to others with authority and confidence. I never want her to think that CF is a hinderance or a reason to be pitited.
<br />
<br />I did a lot of thinking about the kinds of CF adults who post here and have posted here in the past. The ones who were the kinds of people I hope Emily grows up to be were very often the ones who had parents who were forthcoming and honest.
<br />
<br />That being said, I know there will be a day when Emily will say "ENOUGH!", and that will be that. Until she changes her mind, of course.
<br />
<br />Since she was a baby, I have made fundraising montages. When she was 2 1/2, she would cry everytime we watched it, because that year I had used the song "You are my sunshine." The line, please don't take my sunshine away made her sad. The following year, I used a Jack Johnson song (actually a very upbeat song) that ends with the words, "Please don't go away." Again, tears from her every time she hears it. It's played ALOT in grocery stores and had led to some interesting moments.
<br />
<br />So, the year after that, when I started to work on the montage, she was very upset and said she didn't want me to make one. So, I didn't. There was no way I was going to upset her again, to that extent.
<br />
<br />That brings us to this year. This year, I asked her how she felt about it. Initially she said she didn't want one. I planned to make one on the sly, anyway, because SO many people had asked for one to use in their fundraising (our friends and family and Great Strides walkers...)But, then she said she wanted to pick the songs. So, I am working on one with Firework and Live Like There's NO Tomorrow...two of her favorite songs.
<br />
<br />My whole point here, I guess, is that it doesn't hurt to be "out there" as long as you follow the child's lead when she's old enough.
<br />
<br />We do a presentation for her classmates at school/daycare each year, which she is very willing to do. Emily has to take Enzymes at school, and the kids see her feeding tube. Those things will always be there, so the kids might has well have some idea why. We send a fundraising letter to the parents of every kid in her class too, and explain the basics of CF. These things sure have made it easier to drop her off for birthday parties with her enzymes in tow!!!
<br />
<br />If at some point she wants to stop this, so be it. Yes, everyone will already know, but my hope is that by then, everyone will know her as Emily the kid who is feisty, really good at gymnastics, a good student (if a bit naughty in class)and the cute blond with gorgeous blue eyes...and not just Emily with CF.
<br />
<br />Sorry this was so long!

 

[zeeannie]

This has never been a struggle for us. We have striven to behave as if CF and everything associated with it is a normal part of our lives, which for us it is. We have nothing to hide, just like someone who has allergies for example. It's not something we announce, but it comes up and we talk about it. Any concerns we may have had that our daughter would be shy about it were allayed when, in the second grade, she decided out of the blue that she wanted to do a classroom presentation about CF and how it affects her. She's 14 now and certain aspects of CF bother her, bloating, etc., but she's not embarrassed about CF itself. So she tells us. <img src="i/expressions/face-icon-small-wink.gif" border="0"> She's KibblesSezHi on this forum, she'd be forthcoming if you'd like to hear another CF'er's opinion.

 

[zeeannie]

This has never been a struggle for us. We have striven to behave as if CF and everything associated with it is a normal part of our lives, which for us it is. We have nothing to hide, just like someone who has allergies for example. It's not something we announce, but it comes up and we talk about it. Any concerns we may have had that our daughter would be shy about it were allayed when, in the second grade, she decided out of the blue that she wanted to do a classroom presentation about CF and how it affects her. She's 14 now and certain aspects of CF bother her, bloating, etc., but she's not embarrassed about CF itself. So she tells us. <img src="i/expressions/face-icon-small-wink.gif" border="0"> She's KibblesSezHi on this forum, she'd be forthcoming if you'd like to hear another CF'er's opinion.

 

[zeeannie]

This has never been a struggle for us. We have striven to behave as if CF and everything associated with it is a normal part of our lives, which for us it is. We have nothing to hide, just like someone who has allergies for example. It's not something we announce, but it comes up and we talk about it. Any concerns we may have had that our daughter would be shy about it were allayed when, in the second grade, she decided out of the blue that she wanted to do a classroom presentation about CF and how it affects her. She's 14 now and certain aspects of CF bother her, bloating, etc., but she's not embarrassed about CF itself. So she tells us. <img src="i/expressions/face-icon-small-wink.gif" border="0"> She's KibblesSezHi on this forum, she'd be forthcoming if you'd like to hear another CF'er's opinion.