Announcing to Your Community That Your Child Has CF

[edan]

My daughter is only 3 (soon to be 4). I want to announce it from the roof tops that my daughter has CF in order to fund raise and bring more awareness that will in turn bring this dreadful disease closer to a cure. However, I also want my daughter to be able to make her own decisions on when and how and if she tells people in the future. have any of you struggled with this as a parent?

Thanks,
Edan.

 

[edan]

My daughter is only 3 (soon to be 4). I want to announce it from the roof tops that my daughter has CF in order to fund raise and bring more awareness that will in turn bring this dreadful disease closer to a cure. However, I also want my daughter to be able to make her own decisions on when and how and if she tells people in the future. have any of you struggled with this as a parent?

Thanks,
Edan.

 

[edan]

My daughter is only 3 (soon to be 4). I want to announce it from the roof tops that my daughter has CF in order to fund raise and bring more awareness that will in turn bring this dreadful disease closer to a cure. However, I also want my daughter to be able to make her own decisions on when and how and if she tells people in the future. have any of you struggled with this as a parent?
<br />
<br />Thanks,
<br />Edan.

 

[welshwitch]

Hi,

definitely a good question!!!!

Here's my story:

When I was little growing up (in the 80s--I'm 31 now) my parents did what you did-they went to every fundraiser, did the newsletter, I did some press for CF, hung out with other CF families, (this was before cross infection was really known about) etc. etc. etc. Being a little kid I thought it was fun to get to be the center of attention and it wasn't a big deal to me. On the other hand, I really didn't get the consequences of having CF other than I got to eat more than my friends and my mom was always terrified of having me around other kids when they were sick.

Now I was lucky and I'm a really really healthy CFer (probably in part thanks to my parents' proactive role in my care) Anyway, I didn't get the piece about CF being a fatal disease until I was reading a book about it when I was probably in middle school. For me this was a huge shock. I mean my family had always been really positive and encouraging about my CF and really underplayed the lethal aspect of it. That really really freaked me out.

Basically at that point I fell into a 20 year period of denial that I just woke up from a couple years ago. This was mostly self-imposed fear, but I really didn't want to talk to anyone about CF and basically acted like I didn't have it.

My health is still really good but I finally realized the idea of acceptance and CF and although it is still a painful thing for me to talk about I really try to incorporate it into my life as a serious thing. It's a part of me, but it's not totally me.

In an ideal world I think I would have liked to be more active and positive about my CF when I hit middle school and high school. I wish I hadn't handled it the way I did, but my parents let me take the lead on it too.

However my parents just did the best they could and I don't fault them for my denial. It's just my long long long journey into acceptance and CF.

 

[welshwitch]

Hi,

definitely a good question!!!!

Here's my story:

When I was little growing up (in the 80s--I'm 31 now) my parents did what you did-they went to every fundraiser, did the newsletter, I did some press for CF, hung out with other CF families, (this was before cross infection was really known about) etc. etc. etc. Being a little kid I thought it was fun to get to be the center of attention and it wasn't a big deal to me. On the other hand, I really didn't get the consequences of having CF other than I got to eat more than my friends and my mom was always terrified of having me around other kids when they were sick.

Now I was lucky and I'm a really really healthy CFer (probably in part thanks to my parents' proactive role in my care) Anyway, I didn't get the piece about CF being a fatal disease until I was reading a book about it when I was probably in middle school. For me this was a huge shock. I mean my family had always been really positive and encouraging about my CF and really underplayed the lethal aspect of it. That really really freaked me out.

Basically at that point I fell into a 20 year period of denial that I just woke up from a couple years ago. This was mostly self-imposed fear, but I really didn't want to talk to anyone about CF and basically acted like I didn't have it.

My health is still really good but I finally realized the idea of acceptance and CF and although it is still a painful thing for me to talk about I really try to incorporate it into my life as a serious thing. It's a part of me, but it's not totally me.

In an ideal world I think I would have liked to be more active and positive about my CF when I hit middle school and high school. I wish I hadn't handled it the way I did, but my parents let me take the lead on it too.

However my parents just did the best they could and I don't fault them for my denial. It's just my long long long journey into acceptance and CF.

 

[welshwitch]

Hi,
<br />
<br />definitely a good question!!!!
<br />
<br />Here's my story:
<br />
<br />When I was little growing up (in the 80s--I'm 31 now) my parents did what you did-they went to every fundraiser, did the newsletter, I did some press for CF, hung out with other CF families, (this was before cross infection was really known about) etc. etc. etc. Being a little kid I thought it was fun to get to be the center of attention and it wasn't a big deal to me. On the other hand, I really didn't get the consequences of having CF other than I got to eat more than my friends and my mom was always terrified of having me around other kids when they were sick.
<br />
<br />Now I was lucky and I'm a really really healthy CFer (probably in part thanks to my parents' proactive role in my care) Anyway, I didn't get the piece about CF being a fatal disease until I was reading a book about it when I was probably in middle school. For me this was a huge shock. I mean my family had always been really positive and encouraging about my CF and really underplayed the lethal aspect of it. That really really freaked me out.
<br />
<br />Basically at that point I fell into a 20 year period of denial that I just woke up from a couple years ago. This was mostly self-imposed fear, but I really didn't want to talk to anyone about CF and basically acted like I didn't have it.
<br />
<br />My health is still really good but I finally realized the idea of acceptance and CF and although it is still a painful thing for me to talk about I really try to incorporate it into my life as a serious thing. It's a part of me, but it's not totally me.
<br />
<br />In an ideal world I think I would have liked to be more active and positive about my CF when I hit middle school and high school. I wish I hadn't handled it the way I did, but my parents let me take the lead on it too.
<br />
<br />However my parents just did the best they could and I don't fault them for my denial. It's just my long long long journey into acceptance and CF.

 

[Mommafirst]

This is something my husband and I talk a lot about. We are very involved with fundraising and on the hospital/Cf center's advisory boards. CF is not a secret, as we don't feel it will do our daughter any good to feel that she MUST hide CF from others. But we also try to be low key in our community so that she will have the option in her teens of telling her boyfriends or friends on her own schedule, rather than the information preceeding her.

I think a lot depends on the size of your community. We live in a smaller town, but not a teeny tiny one. We are still struggling with how much is too much sharing, but on the other hand I want Alyssa to know that she is much more than this disease.

Thanks for posting, I have no answers, but I share your quandry.

 

[Mommafirst]

This is something my husband and I talk a lot about. We are very involved with fundraising and on the hospital/Cf center's advisory boards. CF is not a secret, as we don't feel it will do our daughter any good to feel that she MUST hide CF from others. But we also try to be low key in our community so that she will have the option in her teens of telling her boyfriends or friends on her own schedule, rather than the information preceeding her.

I think a lot depends on the size of your community. We live in a smaller town, but not a teeny tiny one. We are still struggling with how much is too much sharing, but on the other hand I want Alyssa to know that she is much more than this disease.

Thanks for posting, I have no answers, but I share your quandry.

 

[Mommafirst]

This is something my husband and I talk a lot about. We are very involved with fundraising and on the hospital/Cf center's advisory boards. CF is not a secret, as we don't feel it will do our daughter any good to feel that she MUST hide CF from others. But we also try to be low key in our community so that she will have the option in her teens of telling her boyfriends or friends on her own schedule, rather than the information preceeding her.
<br />
<br />I think a lot depends on the size of your community. We live in a smaller town, but not a teeny tiny one. We are still struggling with how much is too much sharing, but on the other hand I want Alyssa to know that she is much more than this disease.
<br />
<br />Thanks for posting, I have no answers, but I share your quandry.

 

[rubyroselee]

From a CF patient's perspective....

My parents were EXTREMELY open about my CF and took every chance to had to tell people about it. They wanted me to live a normal life without feeling ashamed and thought I should go about my life as it was. However, this was difficult for me because I was a shy kid. I didn't want the world knowing about it sometimes.

For example, we would go camping on the lake every year and my dad would take me to the beach in the morning. He would just do my CPT on the beach. I would be completely mortified when people would see us and I wondered what they thought he was doing to me! But he would take the opportunity to educate people when he could.

But that is when I wished my parents would have asked me how open I wanted to be about it rather than just forcing me to be open about.

 

[rubyroselee]

From a CF patient's perspective....

My parents were EXTREMELY open about my CF and took every chance to had to tell people about it. They wanted me to live a normal life without feeling ashamed and thought I should go about my life as it was. However, this was difficult for me because I was a shy kid. I didn't want the world knowing about it sometimes.

For example, we would go camping on the lake every year and my dad would take me to the beach in the morning. He would just do my CPT on the beach. I would be completely mortified when people would see us and I wondered what they thought he was doing to me! But he would take the opportunity to educate people when he could.

But that is when I wished my parents would have asked me how open I wanted to be about it rather than just forcing me to be open about.

 

[rubyroselee]

From a CF patient's perspective....
<br />
<br />My parents were EXTREMELY open about my CF and took every chance to had to tell people about it. They wanted me to live a normal life without feeling ashamed and thought I should go about my life as it was. However, this was difficult for me because I was a shy kid. I didn't want the world knowing about it sometimes.
<br />
<br />For example, we would go camping on the lake every year and my dad would take me to the beach in the morning. He would just do my CPT on the beach. I would be completely mortified when people would see us and I wondered what they thought he was doing to me! But he would take the opportunity to educate people when he could.
<br />
<br />But that is when I wished my parents would have asked me how open I wanted to be about it rather than just forcing me to be open about.

 

[Ratatosk]

There's a fine line between wanting to fundraise, awareness and having your child lead a normal life. We DID agree to do an article on CF awareness for the walk when DS was very little -- 2 and he does attend the CF walk with us. For the longest time he was the only "baby" in our small City with CF. Once newborn screening came into play there were 5 babies diagnosed in our area wcf the first month!

As his parents we particpate in several fundraisers -- one at a nightclub, a pancake feed, rummage sale, but DS really isn't involved in those. Quite frankly, kids can be cruel and it's hard enough being a child without health issues in this day and age. I don't involve his school or daycare in the CF fundraising. Our letters and emails regarding events go to business contacts, relatives, friends.

We're not trying to hide it, we're honest with DS about CF. But feel he can make a choice in terms of how active he wants to be. And unfortunately, there are plenty of adorable new babies in our area being diagnosed each year who I'm perfectly willing to let be "the face of CF" as DS is getting to that age where he's starting to become embarrassed by his parents. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

There's a fine line between wanting to fundraise, awareness and having your child lead a normal life. We DID agree to do an article on CF awareness for the walk when DS was very little -- 2 and he does attend the CF walk with us. For the longest time he was the only "baby" in our small City with CF. Once newborn screening came into play there were 5 babies diagnosed in our area wcf the first month!

As his parents we particpate in several fundraisers -- one at a nightclub, a pancake feed, rummage sale, but DS really isn't involved in those. Quite frankly, kids can be cruel and it's hard enough being a child without health issues in this day and age. I don't involve his school or daycare in the CF fundraising. Our letters and emails regarding events go to business contacts, relatives, friends.

We're not trying to hide it, we're honest with DS about CF. But feel he can make a choice in terms of how active he wants to be. And unfortunately, there are plenty of adorable new babies in our area being diagnosed each year who I'm perfectly willing to let be "the face of CF" as DS is getting to that age where he's starting to become embarrassed by his parents. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

There's a fine line between wanting to fundraise, awareness and having your child lead a normal life. We DID agree to do an article on CF awareness for the walk when DS was very little -- 2 and he does attend the CF walk with us. For the longest time he was the only "baby" in our small City with CF. Once newborn screening came into play there were 5 babies diagnosed in our area wcf the first month!
<br />
<br />As his parents we particpate in several fundraisers -- one at a nightclub, a pancake feed, rummage sale, but DS really isn't involved in those. Quite frankly, kids can be cruel and it's hard enough being a child without health issues in this day and age. I don't involve his school or daycare in the CF fundraising. Our letters and emails regarding events go to business contacts, relatives, friends.
<br />
<br />We're not trying to hide it, we're honest with DS about CF. But feel he can make a choice in terms of how active he wants to be. And unfortunately, there are plenty of adorable new babies in our area being diagnosed each year who I'm perfectly willing to let be "the face of CF" as DS is getting to that age where he's starting to become embarrassed by his parents. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[edan]

Thanks everyone for your thoughtful answers. Looks like I am not the only one struggling with this issue.

Edan.

 

[edan]

Thanks everyone for your thoughtful answers. Looks like I am not the only one struggling with this issue.

Edan.

 

[edan]

Thanks everyone for your thoughtful answers. Looks like I am not the only one struggling with this issue.
<br />
<br />Edan.

 

[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.
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.

 

[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.
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.