PDA

View Full Version : A Question from a single dad of a child with cf



anonymous
11-01-2004, 02:41 PM
Hi everyone.. I do not know if Ishould be posting here or not but I need a little help. My son Zach is 5 years old now and was diagnoised with cf at 3 months of age. Zach is asking me why he has to take meds and why he has to go to the doctor all the time.... When, how do you tell a child whats wrong with him? I love my sone more than life its self, but I struggle with knowing what to do. So if some of you could tell me who were you told and when and what effect it had on you. I cannot lie to Zach but I also dont feel like he is at the right age to be told. He already has it bad enough. When he was diagnoised at 3 months his mother ran out on us both. He knows that she is not arround and it hurts him not to have a mommy. I just need a little advice.


God Bless


Jason

anonymous
11-01-2004, 02:41 PM
Hi everyone.. I do not know if Ishould be posting here or not but I need a little help. My son Zach is 5 years old now and was diagnoised with cf at 3 months of age. Zach is asking me why he has to take meds and why he has to go to the doctor all the time.... When, how do you tell a child whats wrong with him? I love my sone more than life its self, but I struggle with knowing what to do. So if some of you could tell me who were you told and when and what effect it had on you. I cannot lie to Zach but I also dont feel like he is at the right age to be told. He already has it bad enough. When he was diagnoised at 3 months his mother ran out on us both. He knows that she is not arround and it hurts him not to have a mommy. I just need a little advice.


God Bless


Jason

Emily65Roses
11-01-2004, 03:10 PM
Okay I always hold a very particular standpoint on this type of question. Tell him the minute he asks any questions. I can tell you, as I was growing up, I always knew about my CF. When parents on the board have asked this type of question before, I've tried to sit down and think of when my parents told me. For the life of me, I cannot come up with it. I've known since before I can remember. I cannot pinpoint my knowledge of my CF to "the day!" (dun <u>dun</u> <u>DUN</u>) when my parents told me, because I've never known anything else. My parents were always very open and honest with me about it. I was a poster child for a few years around age 6. I know most people think little kids can't handle such a big issue, but you might be surprised. If you put it off too much longer, it's just going to become harder to tell him anyhow. I think you should take a cue from his questions. If he wants to know, tell him. I mean obviously, you need to use different words and phrases to explain it to a 5 year old, but I really think you should take his curiosity as a hint.

I also know a lot of other parents will tell you to wait. He's only 5, he won't understand. But in complete honesty, I cannot remember the day my parents told me. I've just always known it. And I'll be the last person to "toot my own horn" so to speak, but I've been told by many family members, friends, loved ones, teachers, etc in my life that I'm a very strong person. Of course I have my problems, as everyone does. But in general I think I came out pretty cool. I attribute that highly to my parents and the CF itself. It's made me a stronger, kinder, more compassionate and understanding person than I would've been without it. I've gone a little off track here, but basically my point is, I came out as a pretty "well-rounded" adult, and I have always always known about the CF.

If Zach is asking about it, he wants to know, and I think you should tell him. It is, afterall, within his own body and I think he has a right to know. Especially since he's asking about it.

Mind you, I didn't mean for any of this to come off as rude, so if it did, I'm sorry. I just tend to be rather opinionated (heh), and I think I have pretty good reasoning and back-up to do so. But you asked for people's take on it, and this is mine. <img src="i/expressions/rose.gif" border="0">

Emily65Roses
11-01-2004, 03:10 PM
Okay I always hold a very particular standpoint on this type of question. Tell him the minute he asks any questions. I can tell you, as I was growing up, I always knew about my CF. When parents on the board have asked this type of question before, I've tried to sit down and think of when my parents told me. For the life of me, I cannot come up with it. I've known since before I can remember. I cannot pinpoint my knowledge of my CF to "the day!" (dun <u>dun</u> <u>DUN</u>) when my parents told me, because I've never known anything else. My parents were always very open and honest with me about it. I was a poster child for a few years around age 6. I know most people think little kids can't handle such a big issue, but you might be surprised. If you put it off too much longer, it's just going to become harder to tell him anyhow. I think you should take a cue from his questions. If he wants to know, tell him. I mean obviously, you need to use different words and phrases to explain it to a 5 year old, but I really think you should take his curiosity as a hint.

I also know a lot of other parents will tell you to wait. He's only 5, he won't understand. But in complete honesty, I cannot remember the day my parents told me. I've just always known it. And I'll be the last person to "toot my own horn" so to speak, but I've been told by many family members, friends, loved ones, teachers, etc in my life that I'm a very strong person. Of course I have my problems, as everyone does. But in general I think I came out pretty cool. I attribute that highly to my parents and the CF itself. It's made me a stronger, kinder, more compassionate and understanding person than I would've been without it. I've gone a little off track here, but basically my point is, I came out as a pretty "well-rounded" adult, and I have always always known about the CF.

If Zach is asking about it, he wants to know, and I think you should tell him. It is, afterall, within his own body and I think he has a right to know. Especially since he's asking about it.

Mind you, I didn't mean for any of this to come off as rude, so if it did, I'm sorry. I just tend to be rather opinionated (heh), and I think I have pretty good reasoning and back-up to do so. But you asked for people's take on it, and this is mine. <img src="i/expressions/rose.gif" border="0">

jenhum
11-01-2004, 03:17 PM
i'm the same as emily, i can't remember one "talk" where my parents told me, so i guess i've always known. i started really researching and learning a lot about it once i got to college, but i definitely knew the basics waaaaay before that. my suggestion is to just tell him honestly about the cf. he may not completely understand, but that's ok. later in life he'll be glad you never lied to him.

jenhum
11-01-2004, 03:17 PM
i'm the same as emily, i can't remember one "talk" where my parents told me, so i guess i've always known. i started really researching and learning a lot about it once i got to college, but i definitely knew the basics waaaaay before that. my suggestion is to just tell him honestly about the cf. he may not completely understand, but that's ok. later in life he'll be glad you never lied to him.

Dea
11-01-2004, 03:40 PM
I agree with both posts. I am 31...I dont ever remember a time when I didnt know I had CF. I was hospitalized alot at the same age he is now. I knew I was sick and needed medicine to make me better. I was in kindergarten and missed alot of school. I think if hes asking...hes ready to listen. CF kids are strong...its strange..but seems to come naturally. I hope this helps your decision...Good Luck!
Dea
31 w/CF and CFRD

Dea
11-01-2004, 03:40 PM
I agree with both posts. I am 31...I dont ever remember a time when I didnt know I had CF. I was hospitalized alot at the same age he is now. I knew I was sick and needed medicine to make me better. I was in kindergarten and missed alot of school. I think if hes asking...hes ready to listen. CF kids are strong...its strange..but seems to come naturally. I hope this helps your decision...Good Luck!
Dea
31 w/CF and CFRD

anonymous
11-01-2004, 04:17 PM
Thanks alot everyone. All of your advice will help me.

anonymous
11-01-2004, 04:17 PM
Thanks alot everyone. All of your advice will help me.

rachelsmom
11-01-2004, 05:29 PM
Ok Jason its Teri, I just left you a note on another topic, but since all your answers came from other CF people I am going to give you my opinion as a mom with a daughter who is 8 and has CF. I agree with the other people about answering his questions on a 5 year old level. I have never actually had a "talk" with Rachel. She pretty much knows she has CF. I think I told her around 4 or 5. I just explained to her that she had a disease that made her cough a lot and that she needed to take medicine to keep her healthy. Sometimes she would have to go the hospital for a clean out. There is an awesome book out there called CF and me and also Mallorys 65 roses that explains it very well for someone his age.

I dont think you need to tell him that his disease is life threatening. I personally feel that he is too young for that. The other people on this topic may disagree but I just think they are too young to process that. My daughter was in the hospital in October and a respiratory therapist came in to explain a new way to do the vest. She said they were doing a study in Minnesota and that their patients were living into their 30's and 40's right in front of Rachel. Needless to say I have been getting the question of "Mommy am I going to die?" Talk about a heartwrenching question. I tell her that if she does her treatments and takes her medicine she will stay healthier. I just try to tell her that I think she is going to live to be old and wrinkly but that only God knows how long any of us live and that we just have to make the best out of each and everyday. Of course this is not easy all the time.

Sorry I know I kind of went on a little much but I know it is hard. Ultimately you have to decide how you want to handle it. But I do know that these kids are stronger than you think and if he is asking go with the questions best you know how.

Hang in there let me know how it goes!

Teri

rachelsmom
11-01-2004, 05:29 PM
Ok Jason its Teri, I just left you a note on another topic, but since all your answers came from other CF people I am going to give you my opinion as a mom with a daughter who is 8 and has CF. I agree with the other people about answering his questions on a 5 year old level. I have never actually had a "talk" with Rachel. She pretty much knows she has CF. I think I told her around 4 or 5. I just explained to her that she had a disease that made her cough a lot and that she needed to take medicine to keep her healthy. Sometimes she would have to go the hospital for a clean out. There is an awesome book out there called CF and me and also Mallorys 65 roses that explains it very well for someone his age.

I dont think you need to tell him that his disease is life threatening. I personally feel that he is too young for that. The other people on this topic may disagree but I just think they are too young to process that. My daughter was in the hospital in October and a respiratory therapist came in to explain a new way to do the vest. She said they were doing a study in Minnesota and that their patients were living into their 30's and 40's right in front of Rachel. Needless to say I have been getting the question of "Mommy am I going to die?" Talk about a heartwrenching question. I tell her that if she does her treatments and takes her medicine she will stay healthier. I just try to tell her that I think she is going to live to be old and wrinkly but that only God knows how long any of us live and that we just have to make the best out of each and everyday. Of course this is not easy all the time.

Sorry I know I kind of went on a little much but I know it is hard. Ultimately you have to decide how you want to handle it. But I do know that these kids are stronger than you think and if he is asking go with the questions best you know how.

Hang in there let me know how it goes!

Teri

Dea
11-01-2004, 06:28 PM
I just wanted to say...I agree with you Teri about not telling him that it is life threatening. There is no need for that at his age. I found out at a young age that I could die...but...things have changed sooo much since I was diagnosed in '73. No one actually came out and told me...but I wanted to learn more about CF...and read alot...and seen it in articles about CF. I am 31 and still doing very well...I have a strong will..and plan to become OLD! I pray for all others with CF that they will too! Take Care!
Dea
31 w/CF

Dea
11-01-2004, 06:28 PM
I just wanted to say...I agree with you Teri about not telling him that it is life threatening. There is no need for that at his age. I found out at a young age that I could die...but...things have changed sooo much since I was diagnosed in '73. No one actually came out and told me...but I wanted to learn more about CF...and read alot...and seen it in articles about CF. I am 31 and still doing very well...I have a strong will..and plan to become OLD! I pray for all others with CF that they will too! Take Care!
Dea
31 w/CF

cfgirl38
11-02-2004, 12:00 AM
You have a very tender heart, Teri. It shows in your words. The advise you have given these gentleman was really nice. I wish I had found this site when I was diagnost 5 years ago. But I just found it 1 year ago. I have learned so much from all of you. Eva 35w cf diagnost at 30.

cfgirl38
11-02-2004, 12:00 AM
You have a very tender heart, Teri. It shows in your words. The advise you have given these gentleman was really nice. I wish I had found this site when I was diagnost 5 years ago. But I just found it 1 year ago. I have learned so much from all of you. Eva 35w cf diagnost at 30.

rachelsmom
11-02-2004, 12:40 PM
Thanks Eva,

I appreciate that. I too wish I would have found this site sooner. It has been a wonderful blessing to be able to talk with other parents and other people with CF. I was just curious and if you dont mind my asking did you have symptoms of CF your whole life. I just think it is amazing that people get diagnosed so late in life. How are you handling that? I am 35 also and that would be quite an adjustment to find out something like that. Good Luck and again thanks for the nice comment.

Teri

rachelsmom
11-02-2004, 12:40 PM
Thanks Eva,

I appreciate that. I too wish I would have found this site sooner. It has been a wonderful blessing to be able to talk with other parents and other people with CF. I was just curious and if you dont mind my asking did you have symptoms of CF your whole life. I just think it is amazing that people get diagnosed so late in life. How are you handling that? I am 35 also and that would be quite an adjustment to find out something like that. Good Luck and again thanks for the nice comment.

Teri

HollyCatheryn
11-02-2004, 05:06 PM
I concur. I do not remember ever having "the talk." I do however remember a story of going to the coffee shop with my grandfather and he told everyone who came in to ask me why I took so many pills (cause he thought my answer was so cute). I'd say, " I have sixt-eye two-brosis and my tummy doesn't work right." That's as much as I needed to know at the time. As I asked more questions they tried to answer just what I asked. "Why do I have to do treatments and aerosols?" "Because you have mucus in your lungs that needs to come out so you won't get sick." Try not to let it ever be a big ugly secret. Secrets are scary and build fear and misconception and erode trust. Do you know any other kids with CF from his clinic that you can let him play with sometimes? I always enjoyed getting to eat lunch with someone else who took pills. Kids need connections with people like them, just like adults do. If you want to send me your mailing address, I have&nbsp;some copies of a booklet my mother wrote for kids about CF that is now out of print. I will send one to you and you can use it to look through and get ideas, if you feel like it fits your son's needs you can read it with him. My email address is <U>[email protected]</U>

HollyCatheryn
11-02-2004, 05:06 PM
I concur. I do not remember ever having "the talk." I do however remember a story of going to the coffee shop with my grandfather and he told everyone who came in to ask me why I took so many pills (cause he thought my answer was so cute). I'd say, " I have sixt-eye two-brosis and my tummy doesn't work right." That's as much as I needed to know at the time. As I asked more questions they tried to answer just what I asked. "Why do I have to do treatments and aerosols?" "Because you have mucus in your lungs that needs to come out so you won't get sick." Try not to let it ever be a big ugly secret. Secrets are scary and build fear and misconception and erode trust. Do you know any other kids with CF from his clinic that you can let him play with sometimes? I always enjoyed getting to eat lunch with someone else who took pills. Kids need connections with people like them, just like adults do. If you want to send me your mailing address, I have&nbsp;some copies of a booklet my mother wrote for kids about CF that is now out of print. I will send one to you and you can use it to look through and get ideas, if you feel like it fits your son's needs you can read it with him. My email address is <U>[email protected]</U>

EmilysMom
11-02-2004, 06:27 PM
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">

EmilysMom
11-02-2004, 06:27 PM
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">

anonymous
11-02-2004, 06:34 PM
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

anonymous
11-02-2004, 06:34 PM
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

rachelsmom
11-02-2004, 07:18 PM
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

rachelsmom
11-02-2004, 07:18 PM
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

Emily65Roses
11-02-2004, 07:31 PM
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">

Emily65Roses
11-02-2004, 07:31 PM
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">

NoDayButToday
11-02-2004, 09:42 PM
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.

NoDayButToday
11-02-2004, 09:42 PM
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.

Emily65Roses
11-02-2004, 09:59 PM
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">

Emily65Roses
11-02-2004, 09:59 PM
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">

anonymous
11-03-2004, 01:59 AM
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

anonymous
11-03-2004, 01:59 AM
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

anonymous
11-03-2004, 02:52 PM
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.

anonymous
11-03-2004, 02:52 PM
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.

anonymous
11-03-2004, 03:42 PM
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

anonymous
11-03-2004, 03:42 PM
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

Emily65Roses
11-03-2004, 04:16 PM
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">

Emily65Roses
11-03-2004, 04:16 PM
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">

EmilysMini
11-04-2004, 02:24 AM
Hello hello. not my first time posting. But it is my first time posting as part of Emily's cult following. heh. Thought Id start off by saying I completely agree that the best idea would be to answer all of his questions as they come up. (not much coming from a non CFer, but thought id add my 2 cents) It just seems like it would be a bad idea to keep him in the dark the whole time when it will be easier for him to adjust if he grows up knowing, then have his whole life change with a little bit of knowlege in 10 years or so. I would also like to say that you all seem remarkably stong for being able to deal so well. Heres hoping for the best for all of you. good luck

NOTE: all grammer and spelling courtesy of Emily65roses, for I cannot spell.

Later Cf***ers<--(heh see. its clever)

EmilysMini
11-04-2004, 02:24 AM
Hello hello. not my first time posting. But it is my first time posting as part of Emily's cult following. heh. Thought Id start off by saying I completely agree that the best idea would be to answer all of his questions as they come up. (not much coming from a non CFer, but thought id add my 2 cents) It just seems like it would be a bad idea to keep him in the dark the whole time when it will be easier for him to adjust if he grows up knowing, then have his whole life change with a little bit of knowlege in 10 years or so. I would also like to say that you all seem remarkably stong for being able to deal so well. Heres hoping for the best for all of you. good luck

NOTE: all grammer and spelling courtesy of Emily65roses, for I cannot spell.

Later Cf***ers<--(heh see. its clever)

EmilysMini
11-04-2004, 02:26 AM
Alright i have to fix this: Grammar*

EmilysMini
11-04-2004, 02:26 AM
Alright i have to fix this: Grammar*

Emily65Roses
11-04-2004, 02:28 AM
Yay for my Mini on the forum!!!!! I have quite a fan club, it seems. o.O But either way, Mini rawks!! Yaaaayyy! Love you, hun. <img src="i/expressions/rose.gif" border="0">

Emily65Roses
11-04-2004, 02:28 AM
Yay for my Mini on the forum!!!!! I have quite a fan club, it seems. o.O But either way, Mini rawks!! Yaaaayyy! Love you, hun. <img src="i/expressions/rose.gif" border="0">

celticgoddess
11-05-2004, 04:43 PM
Jason,

The minute he asked the question he was ready to know some information. My daughter is 15 years old and was diagnosed at 3 months old and I have always been upfront with her about everything but the hard question came when she was 4 and we were sitting watching a special about cancer, i think, and she looked up at me and annouced, "mom i have cystic fibrosis and that means i might die doesnt it" after i picked my heart of off the floor I gave the only answer i could i told her we all die someday and that there was no clear cut answer on when it was just a fact. Also told her that i hadnt figured out how to get out of life alive but if something came up i would let her know. And then we talked a bit about what CF was about. Blunt and to the point with humor was how I dealt with it but thats becuase I really don't know any other way to be.... We even ran into a problem with a Doctor she once saw when she was 6 or 7 because he refused to talk "to her" because she was a child and therefore would not understand what he was saying. I have always felt that if it were treated as a secret she would view it as being bad. Its just a fact of life and somethings she has to deal with... I would sit down with him and explain things to the best of your ability...also your cf doctors should have some wonderful books to help give them a call if you dont have them already.

Lots of luck <img src="i/expressions/rose.gif" border="0">
Kelly<img src="i/expressions/moon.gif" border="0">

celticgoddess
11-05-2004, 04:43 PM
Jason,

The minute he asked the question he was ready to know some information. My daughter is 15 years old and was diagnosed at 3 months old and I have always been upfront with her about everything but the hard question came when she was 4 and we were sitting watching a special about cancer, i think, and she looked up at me and annouced, "mom i have cystic fibrosis and that means i might die doesnt it" after i picked my heart of off the floor I gave the only answer i could i told her we all die someday and that there was no clear cut answer on when it was just a fact. Also told her that i hadnt figured out how to get out of life alive but if something came up i would let her know. And then we talked a bit about what CF was about. Blunt and to the point with humor was how I dealt with it but thats becuase I really don't know any other way to be.... We even ran into a problem with a Doctor she once saw when she was 6 or 7 because he refused to talk "to her" because she was a child and therefore would not understand what he was saying. I have always felt that if it were treated as a secret she would view it as being bad. Its just a fact of life and somethings she has to deal with... I would sit down with him and explain things to the best of your ability...also your cf doctors should have some wonderful books to help give them a call if you dont have them already.

Lots of luck <img src="i/expressions/rose.gif" border="0">
Kelly<img src="i/expressions/moon.gif" border="0">

anonymous
11-07-2004, 06:09 PM
Hello
My son is four and he has cf. my mother got skin cancer when she was a child. She had every single mole on her body removed, she underwent insane treatments, and even had doctors photograph her body to document her case (it was very uncommon to treat and cure her type of cancer back then). NOBODY ever told her what was going on! She found out from her grandmother over twenthy years later, needless to say she felt betrayed, confused, and furious. I was diagnosed with crohn's disease as a child and mother vowed to never keep my disease a secret from me. I watched my mother cry when I had setbacks, I saw how supportive friends and family could be, my mom gave me all the books and told me to read them when I was ready, I went to support groups. There were so many times that my mother didn't want to tell me the truth, I could see and sense the turmoil in her voice and eyes, but however hard it was for her to tell me she did it anyway. Yes, it was very overwhelming and scary, the thought of surgery, medication, death, etc.. was always in the back of my mind and over time it became a part of life but not what defined me. When my son was diagnosed at 18 months, the rush of emotions from my childhood and the thought of my son going through what I went through or even worse was devasting. I finally understood how hard it was for my mom to be honest with me. My son knows what cystic Fibrosis. He brought his nebulizer to school for show and tell and explained to his friends that the "dragon mask" helped his lungs. His friends were impressed and even tried it for themselves (filled with saline, and sterilized of course). My son was beaming with pride and after show and tell, they went back to all playing together. We have had to deal with extremely rude people as well. One lady took it upon herself to tell me that the oldest living person with cf lived in dallas and was 43, she said that right in front of my son. I wanted to slap the daylights out of her (I would say worse but this site won't allow me to be more graphic!) He was due to have surgery (tonsils, polyps, and adenoids removed a few days after she said that, he was terrified. Less than a week after the surgery, my grandfather passed away. My son asked me several times a day if he was going to die soon. That few weeks was one of the darkest times I have ever had. We chose to take my son to the funeral home, he was able to see my grandfathers body and it actually comforted him. About a month later he told me he was going to grow-up and die an old man and be with his "pawpaw". It made me cry. He looked at me and when I really looked at him iI saw such comfort, strength, peace, and wisdom in him that I know we will would get through this together. He told me that it will be okay, I know that cf will always be with us, but just a part of us.
Your son, with you , will be able to get through this. He is stronger than you think. Tell the truth to him, in a way he can understand. I think you should avoid telling him about life expectancy. If he does ask, tell him it's a possiblity but don't scare him. He will be able to deal with whatever life gives him, and you will too. I think it is amazing that you are such an awesome father. Despite the fact that your his mother left both of you, your son is lucky to have a father that will always be there for him. Good luck, and God Bless

anonymous
11-07-2004, 06:09 PM
Hello
My son is four and he has cf. my mother got skin cancer when she was a child. She had every single mole on her body removed, she underwent insane treatments, and even had doctors photograph her body to document her case (it was very uncommon to treat and cure her type of cancer back then). NOBODY ever told her what was going on! She found out from her grandmother over twenthy years later, needless to say she felt betrayed, confused, and furious. I was diagnosed with crohn's disease as a child and mother vowed to never keep my disease a secret from me. I watched my mother cry when I had setbacks, I saw how supportive friends and family could be, my mom gave me all the books and told me to read them when I was ready, I went to support groups. There were so many times that my mother didn't want to tell me the truth, I could see and sense the turmoil in her voice and eyes, but however hard it was for her to tell me she did it anyway. Yes, it was very overwhelming and scary, the thought of surgery, medication, death, etc.. was always in the back of my mind and over time it became a part of life but not what defined me. When my son was diagnosed at 18 months, the rush of emotions from my childhood and the thought of my son going through what I went through or even worse was devasting. I finally understood how hard it was for my mom to be honest with me. My son knows what cystic Fibrosis. He brought his nebulizer to school for show and tell and explained to his friends that the "dragon mask" helped his lungs. His friends were impressed and even tried it for themselves (filled with saline, and sterilized of course). My son was beaming with pride and after show and tell, they went back to all playing together. We have had to deal with extremely rude people as well. One lady took it upon herself to tell me that the oldest living person with cf lived in dallas and was 43, she said that right in front of my son. I wanted to slap the daylights out of her (I would say worse but this site won't allow me to be more graphic!) He was due to have surgery (tonsils, polyps, and adenoids removed a few days after she said that, he was terrified. Less than a week after the surgery, my grandfather passed away. My son asked me several times a day if he was going to die soon. That few weeks was one of the darkest times I have ever had. We chose to take my son to the funeral home, he was able to see my grandfathers body and it actually comforted him. About a month later he told me he was going to grow-up and die an old man and be with his "pawpaw". It made me cry. He looked at me and when I really looked at him iI saw such comfort, strength, peace, and wisdom in him that I know we will would get through this together. He told me that it will be okay, I know that cf will always be with us, but just a part of us.
Your son, with you , will be able to get through this. He is stronger than you think. Tell the truth to him, in a way he can understand. I think you should avoid telling him about life expectancy. If he does ask, tell him it's a possiblity but don't scare him. He will be able to deal with whatever life gives him, and you will too. I think it is amazing that you are such an awesome father. Despite the fact that your his mother left both of you, your son is lucky to have a father that will always be there for him. Good luck, and God Bless

anonymous
11-07-2004, 07:33 PM
be starght forward i dont have CF but i have a brain tumor my parents told me what was wrong with me when i asked but not before tell him what he has and what it is so he isnt confused about it> let him ask any questions he has & answer them to the best of your ability!!! if he dosent under stand or you dont know the answer ask a doctor or some1 who knows wat there talking about and also this may not be for right now but get him involved with something im in a play and i made 2 new friends and im haveing the time of my life doing what i love!!!! if hes old anough to ask quetons he can talk soooooo ask him what he wants to be when he grows upor what he likes to do for fun and get him in a class!!!!
Ashley-Meagan 12 GA.
P.S.- smile it will all work out in time!!!!

anonymous
11-07-2004, 07:33 PM
be starght forward i dont have CF but i have a brain tumor my parents told me what was wrong with me when i asked but not before tell him what he has and what it is so he isnt confused about it> let him ask any questions he has & answer them to the best of your ability!!! if he dosent under stand or you dont know the answer ask a doctor or some1 who knows wat there talking about and also this may not be for right now but get him involved with something im in a play and i made 2 new friends and im haveing the time of my life doing what i love!!!! if hes old anough to ask quetons he can talk soooooo ask him what he wants to be when he grows upor what he likes to do for fun and get him in a class!!!!
Ashley-Meagan 12 GA.
P.S.- smile it will all work out in time!!!!