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Thread: What do I tell a 4 year old about CF?

  1. #21

    What do I tell a 4 year old about CF?

    Hi Gammaw and others,
    All of your ideas are right on. Gammaw, you are doing a great job with your little scientist- I have one, too. Lucky us, eh? ;-)

    You are handling it perfectly for his age and development. The challenge, which you are aware of, is how do we transition from "just the facts" to the "reality of CF" ? For each child, this is different because it depends on the child's maturity, personality and cognitive (intellectual) ability to understand things.

    But here are some general comments that I think will help with this that I've taken from articles we've written (sorry it's a little choppy- I cut and pasted from different places):

    Some of the issues we'll be discussing with our kids are going to be difficult ones like: life-expectancy, possible deterioration in health status, the potential for diabetes and with boys, reproductive issues.

    So, oftentimes, parents just don't bring it up. And then kids learn about these things from other sources like thoughtless peers or the internet. That's what happened to me when Jake walked into my office one day and asked me, "Mom, is it true that people with CF only live to 37? That's not very old..." He'd seen a newspaper article that talked about this.

    Luckily, both kids already knew that CF can cause people to die early but we never talked about "a number." I was able to handle this conversation okay (even though it was hard) because I was prepared with "how" to do it.

    And since then, I've learned that research shows that it's best for kids to hear about difficult facts first from their parents. So let's learn HOW to do this.

    1. <i>Teach your children early on about their medical condition and be honest about the consequences of non-compliance. </i>One of the most challenging things for parents is to have a difficult discussion about life-threatening content in a matter-of-fact manner.

    Love and Logic principles build character and responsibility by assuming that children have the strength and ability to handle the absolute truth when it is given in a loving and caring manner.

    The key is to show curiosity and interest while outlining the consequences (of non-compliance) and show no fear and angst about the issue. Generally speaking, if parents don't show fear and angst, then the child won't become fearful.

    Children pick up on our cues. Usually we don't know exactly how to handle these issues with our kids, so if we ask questions, they actually end up guiding us. If that method is good enough for therapists, it's good enough for parents! Some good questions to ask are:

    - "How much do you know about your illness?"
    - "How worried are you?"
    - "How are you handling it?"
    - "What can I do to make things easier?"
    - "Is there anything more you need to know?"

    Since you have a curious kid, he will probably bring it up first and that's fine. Jake was about five when he asked, "Mom, do people die from CF?" It kind of shocked me but I took a deep breath and said, "Well, sweetheart, some people do die from CF just like some die of cancer or other things. But the better a job you do of taking care of yourself, the more likely you will live longer. And you do such a great job eating right and doing all your thumpers and breathers! Are you worried?" "No. Just wondering." "Do you have anymore questions?" "No. Not right now." "Okay. Let me know if you do." "Okay."

    Now, if I would have had my training from Dr. Cline at that time, I should have asked him, "What are you wondering about?" and continued to keep the conversation open but I didn't know about the "ask question method" back then. But now <i>you</i> do. :-)

    Jake was well-informed about CF so that was it for him (until I got the other question about life expectancy years later). We teach them both all the time about CF and the importance of their good self-care. Everytime I learn something new, I share it with them. We are very <i>open and honest; sensitive and hopeful; always empowering them to make good choices.</i>

    So, the important thing is to give age-appropriate information about CF all along the way using books, videos, etc. Obviously, we would explain things differently to a two-year-old than to a six-year-old. Concrete examples, word pictures and drawings are important communication tools for explaining things to young children. Hopefully, we would have had the whole thing clarified completely by around age seven and the child would be fully aware of the situation- that they have CF, what it is, and how it impacts their body. Again, we want them to hear the most difficult facts from us first, not a thoughtless peer on the playground (it happens).

    2. Here are some guidelines to follow when discussing difficult issues with your children:

    - Before you give answers, ask yourself whose needs are you addressing - yours or your child's?
    - Consider whether you are giving more information than the child wants or needs to hear.
    - Be open to your children talking with you about anything and everything.
    - When you are not sure how to give the answer, ask more questions.
    - Recognize that sometimes your child is trying to protect you.
    - Show acceptance even when you can't show approval.
    - Every answer dealing with life-and-death issues should leave room for hope.

    The full article is on our website: <b>www.ParentingChildrenWithHealthIssues.com under articles, called "What Should I Say?" </b>There's also a video link to a role play by Dr. Cline talking with a teenager about CF that will give you an idea of how the conversation flow should go.

    Also, there are some good picture books for kids his age: Taking CF to School, Cadberry's Letters, etc.

    You are doing a GREAT job with this- it is so hard...

  2. #22

    What do I tell a 4 year old about CF?

    Hi Gammaw and others,
    All of your ideas are right on. Gammaw, you are doing a great job with your little scientist- I have one, too. Lucky us, eh? ;-)

    You are handling it perfectly for his age and development. The challenge, which you are aware of, is how do we transition from "just the facts" to the "reality of CF" ? For each child, this is different because it depends on the child's maturity, personality and cognitive (intellectual) ability to understand things.

    But here are some general comments that I think will help with this that I've taken from articles we've written (sorry it's a little choppy- I cut and pasted from different places):

    Some of the issues we'll be discussing with our kids are going to be difficult ones like: life-expectancy, possible deterioration in health status, the potential for diabetes and with boys, reproductive issues.

    So, oftentimes, parents just don't bring it up. And then kids learn about these things from other sources like thoughtless peers or the internet. That's what happened to me when Jake walked into my office one day and asked me, "Mom, is it true that people with CF only live to 37? That's not very old..." He'd seen a newspaper article that talked about this.

    Luckily, both kids already knew that CF can cause people to die early but we never talked about "a number." I was able to handle this conversation okay (even though it was hard) because I was prepared with "how" to do it.

    And since then, I've learned that research shows that it's best for kids to hear about difficult facts first from their parents. So let's learn HOW to do this.

    1. <i>Teach your children early on about their medical condition and be honest about the consequences of non-compliance. </i>One of the most challenging things for parents is to have a difficult discussion about life-threatening content in a matter-of-fact manner.

    Love and Logic principles build character and responsibility by assuming that children have the strength and ability to handle the absolute truth when it is given in a loving and caring manner.

    The key is to show curiosity and interest while outlining the consequences (of non-compliance) and show no fear and angst about the issue. Generally speaking, if parents don't show fear and angst, then the child won't become fearful.

    Children pick up on our cues. Usually we don't know exactly how to handle these issues with our kids, so if we ask questions, they actually end up guiding us. If that method is good enough for therapists, it's good enough for parents! Some good questions to ask are:

    - "How much do you know about your illness?"
    - "How worried are you?"
    - "How are you handling it?"
    - "What can I do to make things easier?"
    - "Is there anything more you need to know?"

    Since you have a curious kid, he will probably bring it up first and that's fine. Jake was about five when he asked, "Mom, do people die from CF?" It kind of shocked me but I took a deep breath and said, "Well, sweetheart, some people do die from CF just like some die of cancer or other things. But the better a job you do of taking care of yourself, the more likely you will live longer. And you do such a great job eating right and doing all your thumpers and breathers! Are you worried?" "No. Just wondering." "Do you have anymore questions?" "No. Not right now." "Okay. Let me know if you do." "Okay."

    Now, if I would have had my training from Dr. Cline at that time, I should have asked him, "What are you wondering about?" and continued to keep the conversation open but I didn't know about the "ask question method" back then. But now <i>you</i> do. :-)

    Jake was well-informed about CF so that was it for him (until I got the other question about life expectancy years later). We teach them both all the time about CF and the importance of their good self-care. Everytime I learn something new, I share it with them. We are very <i>open and honest; sensitive and hopeful; always empowering them to make good choices.</i>

    So, the important thing is to give age-appropriate information about CF all along the way using books, videos, etc. Obviously, we would explain things differently to a two-year-old than to a six-year-old. Concrete examples, word pictures and drawings are important communication tools for explaining things to young children. Hopefully, we would have had the whole thing clarified completely by around age seven and the child would be fully aware of the situation- that they have CF, what it is, and how it impacts their body. Again, we want them to hear the most difficult facts from us first, not a thoughtless peer on the playground (it happens).

    2. Here are some guidelines to follow when discussing difficult issues with your children:

    - Before you give answers, ask yourself whose needs are you addressing - yours or your child's?
    - Consider whether you are giving more information than the child wants or needs to hear.
    - Be open to your children talking with you about anything and everything.
    - When you are not sure how to give the answer, ask more questions.
    - Recognize that sometimes your child is trying to protect you.
    - Show acceptance even when you can't show approval.
    - Every answer dealing with life-and-death issues should leave room for hope.

    The full article is on our website: <b>www.ParentingChildrenWithHealthIssues.com under articles, called "What Should I Say?" </b>There's also a video link to a role play by Dr. Cline talking with a teenager about CF that will give you an idea of how the conversation flow should go.

    Also, there are some good picture books for kids his age: Taking CF to School, Cadberry's Letters, etc.

    You are doing a GREAT job with this- it is so hard...

  3. #23

    What do I tell a 4 year old about CF?

    Hi Gammaw and others,
    All of your ideas are right on. Gammaw, you are doing a great job with your little scientist- I have one, too. Lucky us, eh? ;-)

    You are handling it perfectly for his age and development. The challenge, which you are aware of, is how do we transition from "just the facts" to the "reality of CF" ? For each child, this is different because it depends on the child's maturity, personality and cognitive (intellectual) ability to understand things.

    But here are some general comments that I think will help with this that I've taken from articles we've written (sorry it's a little choppy- I cut and pasted from different places):

    Some of the issues we'll be discussing with our kids are going to be difficult ones like: life-expectancy, possible deterioration in health status, the potential for diabetes and with boys, reproductive issues.

    So, oftentimes, parents just don't bring it up. And then kids learn about these things from other sources like thoughtless peers or the internet. That's what happened to me when Jake walked into my office one day and asked me, "Mom, is it true that people with CF only live to 37? That's not very old..." He'd seen a newspaper article that talked about this.

    Luckily, both kids already knew that CF can cause people to die early but we never talked about "a number." I was able to handle this conversation okay (even though it was hard) because I was prepared with "how" to do it.

    And since then, I've learned that research shows that it's best for kids to hear about difficult facts first from their parents. So let's learn HOW to do this.

    1. <i>Teach your children early on about their medical condition and be honest about the consequences of non-compliance. </i>One of the most challenging things for parents is to have a difficult discussion about life-threatening content in a matter-of-fact manner.

    Love and Logic principles build character and responsibility by assuming that children have the strength and ability to handle the absolute truth when it is given in a loving and caring manner.

    The key is to show curiosity and interest while outlining the consequences (of non-compliance) and show no fear and angst about the issue. Generally speaking, if parents don't show fear and angst, then the child won't become fearful.

    Children pick up on our cues. Usually we don't know exactly how to handle these issues with our kids, so if we ask questions, they actually end up guiding us. If that method is good enough for therapists, it's good enough for parents! Some good questions to ask are:

    - "How much do you know about your illness?"
    - "How worried are you?"
    - "How are you handling it?"
    - "What can I do to make things easier?"
    - "Is there anything more you need to know?"

    Since you have a curious kid, he will probably bring it up first and that's fine. Jake was about five when he asked, "Mom, do people die from CF?" It kind of shocked me but I took a deep breath and said, "Well, sweetheart, some people do die from CF just like some die of cancer or other things. But the better a job you do of taking care of yourself, the more likely you will live longer. And you do such a great job eating right and doing all your thumpers and breathers! Are you worried?" "No. Just wondering." "Do you have anymore questions?" "No. Not right now." "Okay. Let me know if you do." "Okay."

    Now, if I would have had my training from Dr. Cline at that time, I should have asked him, "What are you wondering about?" and continued to keep the conversation open but I didn't know about the "ask question method" back then. But now <i>you</i> do. :-)

    Jake was well-informed about CF so that was it for him (until I got the other question about life expectancy years later). We teach them both all the time about CF and the importance of their good self-care. Everytime I learn something new, I share it with them. We are very <i>open and honest; sensitive and hopeful; always empowering them to make good choices.</i>

    So, the important thing is to give age-appropriate information about CF all along the way using books, videos, etc. Obviously, we would explain things differently to a two-year-old than to a six-year-old. Concrete examples, word pictures and drawings are important communication tools for explaining things to young children. Hopefully, we would have had the whole thing clarified completely by around age seven and the child would be fully aware of the situation- that they have CF, what it is, and how it impacts their body. Again, we want them to hear the most difficult facts from us first, not a thoughtless peer on the playground (it happens).

    2. Here are some guidelines to follow when discussing difficult issues with your children:

    - Before you give answers, ask yourself whose needs are you addressing - yours or your child's?
    - Consider whether you are giving more information than the child wants or needs to hear.
    - Be open to your children talking with you about anything and everything.
    - When you are not sure how to give the answer, ask more questions.
    - Recognize that sometimes your child is trying to protect you.
    - Show acceptance even when you can't show approval.
    - Every answer dealing with life-and-death issues should leave room for hope.

    The full article is on our website: <b>www.ParentingChildrenWithHealthIssues.com under articles, called "What Should I Say?" </b>There's also a video link to a role play by Dr. Cline talking with a teenager about CF that will give you an idea of how the conversation flow should go.

    Also, there are some good picture books for kids his age: Taking CF to School, Cadberry's Letters, etc.

    You are doing a GREAT job with this- it is so hard...

  4. #24

    What do I tell a 4 year old about CF?

    Hi Gammaw and others,
    All of your ideas are right on. Gammaw, you are doing a great job with your little scientist- I have one, too. Lucky us, eh? ;-)

    You are handling it perfectly for his age and development. The challenge, which you are aware of, is how do we transition from "just the facts" to the "reality of CF" ? For each child, this is different because it depends on the child's maturity, personality and cognitive (intellectual) ability to understand things.

    But here are some general comments that I think will help with this that I've taken from articles we've written (sorry it's a little choppy- I cut and pasted from different places):

    Some of the issues we'll be discussing with our kids are going to be difficult ones like: life-expectancy, possible deterioration in health status, the potential for diabetes and with boys, reproductive issues.

    So, oftentimes, parents just don't bring it up. And then kids learn about these things from other sources like thoughtless peers or the internet. That's what happened to me when Jake walked into my office one day and asked me, "Mom, is it true that people with CF only live to 37? That's not very old..." He'd seen a newspaper article that talked about this.

    Luckily, both kids already knew that CF can cause people to die early but we never talked about "a number." I was able to handle this conversation okay (even though it was hard) because I was prepared with "how" to do it.

    And since then, I've learned that research shows that it's best for kids to hear about difficult facts first from their parents. So let's learn HOW to do this.

    1. <i>Teach your children early on about their medical condition and be honest about the consequences of non-compliance. </i>One of the most challenging things for parents is to have a difficult discussion about life-threatening content in a matter-of-fact manner.

    Love and Logic principles build character and responsibility by assuming that children have the strength and ability to handle the absolute truth when it is given in a loving and caring manner.

    The key is to show curiosity and interest while outlining the consequences (of non-compliance) and show no fear and angst about the issue. Generally speaking, if parents don't show fear and angst, then the child won't become fearful.

    Children pick up on our cues. Usually we don't know exactly how to handle these issues with our kids, so if we ask questions, they actually end up guiding us. If that method is good enough for therapists, it's good enough for parents! Some good questions to ask are:

    - "How much do you know about your illness?"
    - "How worried are you?"
    - "How are you handling it?"
    - "What can I do to make things easier?"
    - "Is there anything more you need to know?"

    Since you have a curious kid, he will probably bring it up first and that's fine. Jake was about five when he asked, "Mom, do people die from CF?" It kind of shocked me but I took a deep breath and said, "Well, sweetheart, some people do die from CF just like some die of cancer or other things. But the better a job you do of taking care of yourself, the more likely you will live longer. And you do such a great job eating right and doing all your thumpers and breathers! Are you worried?" "No. Just wondering." "Do you have anymore questions?" "No. Not right now." "Okay. Let me know if you do." "Okay."

    Now, if I would have had my training from Dr. Cline at that time, I should have asked him, "What are you wondering about?" and continued to keep the conversation open but I didn't know about the "ask question method" back then. But now <i>you</i> do. :-)

    Jake was well-informed about CF so that was it for him (until I got the other question about life expectancy years later). We teach them both all the time about CF and the importance of their good self-care. Everytime I learn something new, I share it with them. We are very <i>open and honest; sensitive and hopeful; always empowering them to make good choices.</i>

    So, the important thing is to give age-appropriate information about CF all along the way using books, videos, etc. Obviously, we would explain things differently to a two-year-old than to a six-year-old. Concrete examples, word pictures and drawings are important communication tools for explaining things to young children. Hopefully, we would have had the whole thing clarified completely by around age seven and the child would be fully aware of the situation- that they have CF, what it is, and how it impacts their body. Again, we want them to hear the most difficult facts from us first, not a thoughtless peer on the playground (it happens).

    2. Here are some guidelines to follow when discussing difficult issues with your children:

    - Before you give answers, ask yourself whose needs are you addressing - yours or your child's?
    - Consider whether you are giving more information than the child wants or needs to hear.
    - Be open to your children talking with you about anything and everything.
    - When you are not sure how to give the answer, ask more questions.
    - Recognize that sometimes your child is trying to protect you.
    - Show acceptance even when you can't show approval.
    - Every answer dealing with life-and-death issues should leave room for hope.

    The full article is on our website: <b>www.ParentingChildrenWithHealthIssues.com under articles, called "What Should I Say?" </b>There's also a video link to a role play by Dr. Cline talking with a teenager about CF that will give you an idea of how the conversation flow should go.

    Also, there are some good picture books for kids his age: Taking CF to School, Cadberry's Letters, etc.

    You are doing a GREAT job with this- it is so hard...

  5. #25

    What do I tell a 4 year old about CF?

    Hi Gammaw and others,
    <br />All of your ideas are right on. Gammaw, you are doing a great job with your little scientist- I have one, too. Lucky us, eh? ;-)
    <br />
    <br />You are handling it perfectly for his age and development. The challenge, which you are aware of, is how do we transition from "just the facts" to the "reality of CF" ? For each child, this is different because it depends on the child's maturity, personality and cognitive (intellectual) ability to understand things.
    <br />
    <br />But here are some general comments that I think will help with this that I've taken from articles we've written (sorry it's a little choppy- I cut and pasted from different places):
    <br />
    <br />Some of the issues we'll be discussing with our kids are going to be difficult ones like: life-expectancy, possible deterioration in health status, the potential for diabetes and with boys, reproductive issues.
    <br />
    <br />So, oftentimes, parents just don't bring it up. And then kids learn about these things from other sources like thoughtless peers or the internet. That's what happened to me when Jake walked into my office one day and asked me, "Mom, is it true that people with CF only live to 37? That's not very old..." He'd seen a newspaper article that talked about this.
    <br />
    <br />Luckily, both kids already knew that CF can cause people to die early but we never talked about "a number." I was able to handle this conversation okay (even though it was hard) because I was prepared with "how" to do it.
    <br />
    <br />And since then, I've learned that research shows that it's best for kids to hear about difficult facts first from their parents. So let's learn HOW to do this.
    <br />
    <br />1. <i>Teach your children early on about their medical condition and be honest about the consequences of non-compliance. </i>One of the most challenging things for parents is to have a difficult discussion about life-threatening content in a matter-of-fact manner.
    <br />
    <br />Love and Logic principles build character and responsibility by assuming that children have the strength and ability to handle the absolute truth when it is given in a loving and caring manner.
    <br />
    <br />The key is to show curiosity and interest while outlining the consequences (of non-compliance) and show no fear and angst about the issue. Generally speaking, if parents don't show fear and angst, then the child won't become fearful.
    <br />
    <br />Children pick up on our cues. Usually we don't know exactly how to handle these issues with our kids, so if we ask questions, they actually end up guiding us. If that method is good enough for therapists, it's good enough for parents! Some good questions to ask are:
    <br />
    <br /> - "How much do you know about your illness?"
    <br /> - "How worried are you?"
    <br /> - "How are you handling it?"
    <br /> - "What can I do to make things easier?"
    <br /> - "Is there anything more you need to know?"
    <br />
    <br />Since you have a curious kid, he will probably bring it up first and that's fine. Jake was about five when he asked, "Mom, do people die from CF?" It kind of shocked me but I took a deep breath and said, "Well, sweetheart, some people do die from CF just like some die of cancer or other things. But the better a job you do of taking care of yourself, the more likely you will live longer. And you do such a great job eating right and doing all your thumpers and breathers! Are you worried?" "No. Just wondering." "Do you have anymore questions?" "No. Not right now." "Okay. Let me know if you do." "Okay."
    <br />
    <br />Now, if I would have had my training from Dr. Cline at that time, I should have asked him, "What are you wondering about?" and continued to keep the conversation open but I didn't know about the "ask question method" back then. But now <i>you</i> do. :-)
    <br />
    <br />Jake was well-informed about CF so that was it for him (until I got the other question about life expectancy years later). We teach them both all the time about CF and the importance of their good self-care. Everytime I learn something new, I share it with them. We are very <i>open and honest; sensitive and hopeful; always empowering them to make good choices.</i>
    <br />
    <br />So, the important thing is to give age-appropriate information about CF all along the way using books, videos, etc. Obviously, we would explain things differently to a two-year-old than to a six-year-old. Concrete examples, word pictures and drawings are important communication tools for explaining things to young children. Hopefully, we would have had the whole thing clarified completely by around age seven and the child would be fully aware of the situation- that they have CF, what it is, and how it impacts their body. Again, we want them to hear the most difficult facts from us first, not a thoughtless peer on the playground (it happens).
    <br />
    <br />2. Here are some guidelines to follow when discussing difficult issues with your children:
    <br />
    <br />- Before you give answers, ask yourself whose needs are you addressing - yours or your child's?
    <br />- Consider whether you are giving more information than the child wants or needs to hear.
    <br />- Be open to your children talking with you about anything and everything.
    <br />- When you are not sure how to give the answer, ask more questions.
    <br />- Recognize that sometimes your child is trying to protect you.
    <br />- Show acceptance even when you can't show approval.
    <br />- Every answer dealing with life-and-death issues should leave room for hope.
    <br />
    <br />The full article is on our website: <b>www.ParentingChildrenWithHealthIssues.com under articles, called "What Should I Say?" </b>There's also a video link to a role play by Dr. Cline talking with a teenager about CF that will give you an idea of how the conversation flow should go.
    <br />
    <br />Also, there are some good picture books for kids his age: Taking CF to School, Cadberry's Letters, etc.
    <br />
    <br />You are doing a GREAT job with this- it is so hard...

  6. #26
    Super Moderator
    Join Date
    Jan 2009
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    What do I tell a 4 year old about CF?

    Thank you all for the responses. I am encouraged that some of my instincts have been good. I can now see the next step more clearly and that itself is a huge relief - to have some direction and guidance. Thanks so much Lisa for such detail. I'm not sure how well I will remember all the advice when actually in discussion with my curious little scientist. But I have been reviewing the materials on your site as time allows and will pick a place to start . . . I also didn't realize there were child-friendly books out there on CF. How wonderful to know. Thank you for such valuable information.

  7. #27
    Super Moderator
    Join Date
    Jan 2009
    Posts
    575

    What do I tell a 4 year old about CF?

    Thank you all for the responses. I am encouraged that some of my instincts have been good. I can now see the next step more clearly and that itself is a huge relief - to have some direction and guidance. Thanks so much Lisa for such detail. I'm not sure how well I will remember all the advice when actually in discussion with my curious little scientist. But I have been reviewing the materials on your site as time allows and will pick a place to start . . . I also didn't realize there were child-friendly books out there on CF. How wonderful to know. Thank you for such valuable information.

  8. #28
    Super Moderator
    Join Date
    Jan 2009
    Posts
    575

    What do I tell a 4 year old about CF?

    Thank you all for the responses. I am encouraged that some of my instincts have been good. I can now see the next step more clearly and that itself is a huge relief - to have some direction and guidance. Thanks so much Lisa for such detail. I'm not sure how well I will remember all the advice when actually in discussion with my curious little scientist. But I have been reviewing the materials on your site as time allows and will pick a place to start . . . I also didn't realize there were child-friendly books out there on CF. How wonderful to know. Thank you for such valuable information.

  9. #29
    Super Moderator
    Join Date
    Jan 2009
    Posts
    575

    What do I tell a 4 year old about CF?

    Thank you all for the responses. I am encouraged that some of my instincts have been good. I can now see the next step more clearly and that itself is a huge relief - to have some direction and guidance. Thanks so much Lisa for such detail. I'm not sure how well I will remember all the advice when actually in discussion with my curious little scientist. But I have been reviewing the materials on your site as time allows and will pick a place to start . . . I also didn't realize there were child-friendly books out there on CF. How wonderful to know. Thank you for such valuable information.

  10. #30
    Super Moderator
    Join Date
    Jan 2009
    Posts
    575

    What do I tell a 4 year old about CF?

    Thank you all for the responses. I am encouraged that some of my instincts have been good. I can now see the next step more clearly and that itself is a huge relief - to have some direction and guidance. Thanks so much Lisa for such detail. I'm not sure how well I will remember all the advice when actually in discussion with my curious little scientist. But I have been reviewing the materials on your site as time allows and will pick a place to start . . . I also didn't realize there were child-friendly books out there on CF. How wonderful to know. Thank you for such valuable information.

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