A Question from a single dad of a child with cf

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EmilysMom

New member
Emily has known for as long as we knew (since she was two days old). There was never really a "talk". It was just always a part of our daily life and there it was. CF. When she was about 7, we actually met a family who had two kids with CF at a meeting. Emily's dad was wearing a shirt for a fund raiser that said "Make Cystic Fibrosis History" on the back and "Emily's friends" on the front. The dad asked why he was wearing the shirt and Emily's dad explained about a fund raiser we were having. He asked if he wore shirts like that out in public and Emily's dad answered "of course". The man was shocked and said he would never wear a shirt like that because then his whole family would know that his kids had CF. HIS KIDS DID NOT KNOW THEY HAD CF (they were 6 and 8). They knew they were "different" but didn't know why. Try and put your kids in that situation and imagine where they might be today. They would be about 21 and 23 today. I wonder about them occasionally and hope they are doing ok, but have to wonder if and when their parents ever told them about the CF.
(Emily's CF doc told us this once) He believes CF kids were made smarter and better looking because they had more physical sh*t to deal with. So, they are more resilient and smarter and better looking according to Dr. Tom Dolan.
I'll take it! Mine is on the Dean's List at Northeastern University in Boston, Mass and (I am biased of course), she is a beautiful young woman with a lot to offer the world. I'm done bragging now!<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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EmilysMom

New member
Emily has known for as long as we knew (since she was two days old). There was never really a "talk". It was just always a part of our daily life and there it was. CF. When she was about 7, we actually met a family who had two kids with CF at a meeting. Emily's dad was wearing a shirt for a fund raiser that said "Make Cystic Fibrosis History" on the back and "Emily's friends" on the front. The dad asked why he was wearing the shirt and Emily's dad explained about a fund raiser we were having. He asked if he wore shirts like that out in public and Emily's dad answered "of course". The man was shocked and said he would never wear a shirt like that because then his whole family would know that his kids had CF. HIS KIDS DID NOT KNOW THEY HAD CF (they were 6 and 8). They knew they were "different" but didn't know why. Try and put your kids in that situation and imagine where they might be today. They would be about 21 and 23 today. I wonder about them occasionally and hope they are doing ok, but have to wonder if and when their parents ever told them about the CF.
(Emily's CF doc told us this once) He believes CF kids were made smarter and better looking because they had more physical sh*t to deal with. So, they are more resilient and smarter and better looking according to Dr. Tom Dolan.
I'll take it! Mine is on the Dean's List at Northeastern University in Boston, Mass and (I am biased of course), she is a beautiful young woman with a lot to offer the world. I'm done bragging now!<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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anonymous

New member
I would tell him as soon as possible. He might not full understand what it is but in time he will find out exactly what it is. When I was diagnosed as 2years of age my mother told me that I did have CF and at the time I did not fully understand but as I grew up I learned more and more of what it is. If you wait to tell him when he is older, you risk someone else telling him first then he might resent you from the shock of finding out. This way he will learn about it slowly and be able to cope with it, even though he might not fully understand now.

There where things that my mother did not tell me that a doctor told me when I was older. This made me upset with her because she did not tell me.

m/24
 
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anonymous

New member
I would tell him as soon as possible. He might not full understand what it is but in time he will find out exactly what it is. When I was diagnosed as 2years of age my mother told me that I did have CF and at the time I did not fully understand but as I grew up I learned more and more of what it is. If you wait to tell him when he is older, you risk someone else telling him first then he might resent you from the shock of finding out. This way he will learn about it slowly and be able to cope with it, even though he might not fully understand now.

There where things that my mother did not tell me that a doctor told me when I was older. This made me upset with her because she did not tell me.

m/24
 
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rachelsmom

New member
This is to emilys mom. I think that is great what that doctor said. How hysterical. I of course also believe it to be true. My daughter is the smartest and prettiest girl in the world. Isnt everyones child? Ha Ha. It does make sense though.

Thanks for the laugh!

Teri
 
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rachelsmom

New member
This is to emilys mom. I think that is great what that doctor said. How hysterical. I of course also believe it to be true. My daughter is the smartest and prettiest girl in the world. Isnt everyones child? Ha Ha. It does make sense though.

Thanks for the laugh!

Teri
 
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Emily65Roses

New member
Oh man. Looks like I had no need at all to "toot my own horn." LOL. Thanks mom. Hahaha. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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Emily65Roses

New member
Oh man. Looks like I had no need at all to "toot my own horn." LOL. Thanks mom. Hahaha. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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NoDayButToday

New member
I'm with everyone else that now is the best time to tell him. There's no need to tell him it is a life threatening disease, like Teri said, and because he is so young, the thought of death will probably never cross his mind, as it might when he gets a little older.

I know of a boy who was 16 or 17 years old, and his parents had never told him he had CF. He thought he had bad asthma. The doctor was in a bind because as he got older, he was becoming more involved in care, and visits etc., but he was still not to know that he had CF, on parents' orders. The doctor said that if he asked point blank "Do I have CF?" she would have to answer the truth. I can't imagine not knowing about having CF... and I don't remember a 'talk' where I found out- it's always been a part of my life.
 
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NoDayButToday

New member
I'm with everyone else that now is the best time to tell him. There's no need to tell him it is a life threatening disease, like Teri said, and because he is so young, the thought of death will probably never cross his mind, as it might when he gets a little older.

I know of a boy who was 16 or 17 years old, and his parents had never told him he had CF. He thought he had bad asthma. The doctor was in a bind because as he got older, he was becoming more involved in care, and visits etc., but he was still not to know that he had CF, on parents' orders. The doctor said that if he asked point blank "Do I have CF?" she would have to answer the truth. I can't imagine not knowing about having CF... and I don't remember a 'talk' where I found out- it's always been a part of my life.
 
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Emily65Roses

New member
Oh man. As a disclaimer, I'm not saying any of the parents here have done, or are doing this, but just to respond to you, Coll. I've heard stories like this before, where the parents have outright lied to the children about the CF, and they don't find out until their teen years. You had better believe anyone in that position is going to be PISSED OFF at their parents! And I do NOT blame them at all. I just had to share a quick opinion, because I really really hate people that do that. That is one of my biggest hates as far as CF goes. Ahhh!!! <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
 
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Emily65Roses

New member
Oh man. As a disclaimer, I'm not saying any of the parents here have done, or are doing this, but just to respond to you, Coll. I've heard stories like this before, where the parents have outright lied to the children about the CF, and they don't find out until their teen years. You had better believe anyone in that position is going to be PISSED OFF at their parents! And I do NOT blame them at all. I just had to share a quick opinion, because I really really hate people that do that. That is one of my biggest hates as far as CF goes. Ahhh!!! <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
 
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anonymous

New member
Teri, your right it is difficult but I am much better emotionally than I was when I started. It's hard to not have a support system in place. I had to find my way to them. As an adult Dr's are very reluctant to even tests you because you don't fit the "profile". To this day I beleive my younger brother has CF. He's 30. I have tried very hard to get his dr's to test him and they won't. I was tested 3 times as a teen. The test was always negative. They say now it was false negatives which you can have but it's rare to have more than one false negative. As I look back I had symptoms my whole life. I had migraines everyday, they said it was stress. I was 15. Stress at 15. Ha! Sinus, they said allergies. Lung infections, one after another. Scar tissue on the lungs. They said it was normal with all the coughing I did because I was allergic to dust. Ha! Coughing. Skinny as a rail. Not now. It just goes to show you how much md's dont know about CF. We all have to educate ourselves to teach them so when the next person comes along maybe they won't have to wait for a diagnosis as some of us our mis-diagnost terribly for 30 yrs. Eva
 
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anonymous

New member
Teri, your right it is difficult but I am much better emotionally than I was when I started. It's hard to not have a support system in place. I had to find my way to them. As an adult Dr's are very reluctant to even tests you because you don't fit the "profile". To this day I beleive my younger brother has CF. He's 30. I have tried very hard to get his dr's to test him and they won't. I was tested 3 times as a teen. The test was always negative. They say now it was false negatives which you can have but it's rare to have more than one false negative. As I look back I had symptoms my whole life. I had migraines everyday, they said it was stress. I was 15. Stress at 15. Ha! Sinus, they said allergies. Lung infections, one after another. Scar tissue on the lungs. They said it was normal with all the coughing I did because I was allergic to dust. Ha! Coughing. Skinny as a rail. Not now. It just goes to show you how much md's dont know about CF. We all have to educate ourselves to teach them so when the next person comes along maybe they won't have to wait for a diagnosis as some of us our mis-diagnost terribly for 30 yrs. Eva
 
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anonymous

New member
Thanks alot everyone. I read this and realize that there are so many good people in this world. I wish all the best for all of you and your loved ones. I will take all of this in and decide how to go from there.
 
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anonymous

New member
Thanks alot everyone. I read this and realize that there are so many good people in this world. I wish all the best for all of you and your loved ones. I will take all of this in and decide how to go from there.
 
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anonymous

New member
My son is 4, diagnosed 1 year ago. I personally choose to answer the questions as they come, honestly and in words he understands. Right now, they are pretty basic: Why do I have to take so many pills? Why do I have to do treatments? I tell him that he takes the pills so that his tummy won't hurt so much. I tell him that he does treatments to "stay healthy", "to help you from getting sick", "to help you cough up boogies". <img src="i/expressions/face-icon-small-smile.gif" border="0"> I don't foresee me sitting down with him to have a formal, moment of truth, talk. Of course, as he gets older I am sure there will be important things to talk about, but I just want to be as honest with every question as they come up. The only other thing I try to do is correct some of his misunderstandings. His little 4 year old brain thinks that everyone does treatments, and that we (his mommy and daddy) also did treatments when we were little.... I simply correct him and tell him that we did not do treatments and that not everyone does treatments. I make no effort to hide his CF. I hook him up to the vest and nebulizer right in front of friends, family, including cousins just a few years older than him. I answer their questions as they come. While his cousins don't have a full grasp of what's going on, they don't make an issue of it and play with him while he does his treatments as if the mask and vest weren't even there. It is just normal to those who have us in their lives.

Jena
mom to 4 year old son with cf
 
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anonymous

New member
My son is 4, diagnosed 1 year ago. I personally choose to answer the questions as they come, honestly and in words he understands. Right now, they are pretty basic: Why do I have to take so many pills? Why do I have to do treatments? I tell him that he takes the pills so that his tummy won't hurt so much. I tell him that he does treatments to "stay healthy", "to help you from getting sick", "to help you cough up boogies". <img src="i/expressions/face-icon-small-smile.gif" border="0"> I don't foresee me sitting down with him to have a formal, moment of truth, talk. Of course, as he gets older I am sure there will be important things to talk about, but I just want to be as honest with every question as they come up. The only other thing I try to do is correct some of his misunderstandings. His little 4 year old brain thinks that everyone does treatments, and that we (his mommy and daddy) also did treatments when we were little.... I simply correct him and tell him that we did not do treatments and that not everyone does treatments. I make no effort to hide his CF. I hook him up to the vest and nebulizer right in front of friends, family, including cousins just a few years older than him. I answer their questions as they come. While his cousins don't have a full grasp of what's going on, they don't make an issue of it and play with him while he does his treatments as if the mask and vest weren't even there. It is just normal to those who have us in their lives.

Jena
mom to 4 year old son with cf
 
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Emily65Roses

New member
Jena just wanted to say, I love the way you're doing it. It sounds just about perfect. If you keep this up, your son will be a damn awesome adult some day. Hehe. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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Emily65Roses

New member
Jena just wanted to say, I love the way you're doing it. It sounds just about perfect. If you keep this up, your son will be a damn awesome adult some day. Hehe. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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