A Question from a single dad of a child with cf

[anonymous]

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]

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]

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]

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]

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]

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]

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]

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]

Thanks alot everyone. All of your advice will help me.

 

[anonymous]

Thanks alot everyone. All of your advice will help me.

 

[rachelsmom]

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]

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]

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]

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]

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]

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]

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]

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]

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 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>jaloughlin3@sbcglobal.netHolly</U>

 

[HollyCatheryn]

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 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>jaloughlin3@sbcglobal.netHolly</U>