awkward cituation

[Jenica]

I think the information is terrific, but most importantly (to me, at least) was looking at CF in a real, tangible way ... seeing YOU. When your child is first diagnosed, it is pretty hard to get beyond "incurable disease." After contacting our local CFF chapter, they put me in touch with several local moms who had children with CF, and talking to them on the phone was incredibly comforting. I'm not sure what I was picturing, but hearing about a 12 year old girl who played soccer for her middle school was so comforting. Hearing about the treatments she did daily, and the medicines she took was also comforting -- at least I had some idea of what to expect. It's just this big, scary, horrifying thing when you are first thrown into it, so making it human was huge for me. I would guess that if you told them about your day-to-day life, what is affected by CF (treatments, meds, etc) and what is not (making friends, playing sports, going to school), they will leave your meeting feeling much better prepared and less overwhelmed.

I think it's great that you're doing this!

 

[Jenica]

I think the information is terrific, but most importantly (to me, at least) was looking at CF in a real, tangible way ... seeing YOU. When your child is first diagnosed, it is pretty hard to get beyond "incurable disease." After contacting our local CFF chapter, they put me in touch with several local moms who had children with CF, and talking to them on the phone was incredibly comforting. I'm not sure what I was picturing, but hearing about a 12 year old girl who played soccer for her middle school was so comforting. Hearing about the treatments she did daily, and the medicines she took was also comforting -- at least I had some idea of what to expect. It's just this big, scary, horrifying thing when you are first thrown into it, so making it human was huge for me. I would guess that if you told them about your day-to-day life, what is affected by CF (treatments, meds, etc) and what is not (making friends, playing sports, going to school), they will leave your meeting feeling much better prepared and less overwhelmed.

I think it's great that you're doing this!

 

[Jenica]

I think the information is terrific, but most importantly (to me, at least) was looking at CF in a real, tangible way ... seeing YOU. When your child is first diagnosed, it is pretty hard to get beyond "incurable disease." After contacting our local CFF chapter, they put me in touch with several local moms who had children with CF, and talking to them on the phone was incredibly comforting. I'm not sure what I was picturing, but hearing about a 12 year old girl who played soccer for her middle school was so comforting. Hearing about the treatments she did daily, and the medicines she took was also comforting -- at least I had some idea of what to expect. It's just this big, scary, horrifying thing when you are first thrown into it, so making it human was huge for me. I would guess that if you told them about your day-to-day life, what is affected by CF (treatments, meds, etc) and what is not (making friends, playing sports, going to school), they will leave your meeting feeling much better prepared and less overwhelmed.

I think it's great that you're doing this!

 

[Jenica]

I think the information is terrific, but most importantly (to me, at least) was looking at CF in a real, tangible way ... seeing YOU. When your child is first diagnosed, it is pretty hard to get beyond "incurable disease." After contacting our local CFF chapter, they put me in touch with several local moms who had children with CF, and talking to them on the phone was incredibly comforting. I'm not sure what I was picturing, but hearing about a 12 year old girl who played soccer for her middle school was so comforting. Hearing about the treatments she did daily, and the medicines she took was also comforting -- at least I had some idea of what to expect. It's just this big, scary, horrifying thing when you are first thrown into it, so making it human was huge for me. I would guess that if you told them about your day-to-day life, what is affected by CF (treatments, meds, etc) and what is not (making friends, playing sports, going to school), they will leave your meeting feeling much better prepared and less overwhelmed.

I think it's great that you're doing this!

 

[Jenica]

I think the information is terrific, but most importantly (to me, at least) was looking at CF in a real, tangible way ... seeing YOU. When your child is first diagnosed, it is pretty hard to get beyond "incurable disease." After contacting our local CFF chapter, they put me in touch with several local moms who had children with CF, and talking to them on the phone was incredibly comforting. I'm not sure what I was picturing, but hearing about a 12 year old girl who played soccer for her middle school was so comforting. Hearing about the treatments she did daily, and the medicines she took was also comforting -- at least I had some idea of what to expect. It's just this big, scary, horrifying thing when you are first thrown into it, so making it human was huge for me. I would guess that if you told them about your day-to-day life, what is affected by CF (treatments, meds, etc) and what is not (making friends, playing sports, going to school), they will leave your meeting feeling much better prepared and less overwhelmed.

I think it's great that you're doing this!

 

[AnD]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I have done this before and it was not a bad experience. The parents usually ask alot of questions and I just share about my experience. So, you can talk about your experience with getting through school etc. I am sure you will not be staring at eachother. Most of the time the parents are so grateful to see someone with CF who is older than their child and has gotten through school, life etc.



Just share what you know, what you have done with your CF and your life and I am sure the conversation will flow just fine!



Good luck and how nice of you to do this! You will feel so humbled and good when you are done!!!



Jennifer 35 years old with CF and CFRD</end quote></div>


This has been my experience too, robert. It is so good of you to go! If you just offer to answer any of their questions you can, you will probably not be short on conversation <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I have done this before and it was not a bad experience. The parents usually ask alot of questions and I just share about my experience. So, you can talk about your experience with getting through school etc. I am sure you will not be staring at eachother. Most of the time the parents are so grateful to see someone with CF who is older than their child and has gotten through school, life etc.



Just share what you know, what you have done with your CF and your life and I am sure the conversation will flow just fine!



Good luck and how nice of you to do this! You will feel so humbled and good when you are done!!!



Jennifer 35 years old with CF and CFRD</end quote></div>


This has been my experience too, robert. It is so good of you to go! If you just offer to answer any of their questions you can, you will probably not be short on conversation <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I have done this before and it was not a bad experience. The parents usually ask alot of questions and I just share about my experience. So, you can talk about your experience with getting through school etc. I am sure you will not be staring at eachother. Most of the time the parents are so grateful to see someone with CF who is older than their child and has gotten through school, life etc.



Just share what you know, what you have done with your CF and your life and I am sure the conversation will flow just fine!



Good luck and how nice of you to do this! You will feel so humbled and good when you are done!!!



Jennifer 35 years old with CF and CFRD</end quote></div>


This has been my experience too, robert. It is so good of you to go! If you just offer to answer any of their questions you can, you will probably not be short on conversation <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I have done this before and it was not a bad experience. The parents usually ask alot of questions and I just share about my experience. So, you can talk about your experience with getting through school etc. I am sure you will not be staring at eachother. Most of the time the parents are so grateful to see someone with CF who is older than their child and has gotten through school, life etc.



Just share what you know, what you have done with your CF and your life and I am sure the conversation will flow just fine!



Good luck and how nice of you to do this! You will feel so humbled and good when you are done!!!



Jennifer 35 years old with CF and CFRD</end quote>


This has been my experience too, robert. It is so good of you to go! If you just offer to answer any of their questions you can, you will probably not be short on conversation <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>

I have done this before and it was not a bad experience. The parents usually ask alot of questions and I just share about my experience. So, you can talk about your experience with getting through school etc. I am sure you will not be staring at eachother. Most of the time the parents are so grateful to see someone with CF who is older than their child and has gotten through school, life etc.



Just share what you know, what you have done with your CF and your life and I am sure the conversation will flow just fine!



Good luck and how nice of you to do this! You will feel so humbled and good when you are done!!!



Jennifer 35 years old with CF and CFRD</end quote>


This has been my experience too, robert. It is so good of you to go! If you just offer to answer any of their questions you can, you will probably not be short on conversation <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[Jane]

When Josh was diagnosed, we had a friend of a friend meet us too. He was very kind, but we were so shy about asking questions (didn't want to offend him) it really didn't help much. The good part was just seeing him, looking fairly healthy at 25. He's since had a TX and is living well at 41.

My advice is for you to invite questions by offering a few topics. Maybe give them an overview of what your daily routine is. This may help break the ice. New parents tend to be overwhelmed with information.

Good luck!

 

[Jane]

When Josh was diagnosed, we had a friend of a friend meet us too. He was very kind, but we were so shy about asking questions (didn't want to offend him) it really didn't help much. The good part was just seeing him, looking fairly healthy at 25. He's since had a TX and is living well at 41.

My advice is for you to invite questions by offering a few topics. Maybe give them an overview of what your daily routine is. This may help break the ice. New parents tend to be overwhelmed with information.

Good luck!

 

[Jane]

When Josh was diagnosed, we had a friend of a friend meet us too. He was very kind, but we were so shy about asking questions (didn't want to offend him) it really didn't help much. The good part was just seeing him, looking fairly healthy at 25. He's since had a TX and is living well at 41.

My advice is for you to invite questions by offering a few topics. Maybe give them an overview of what your daily routine is. This may help break the ice. New parents tend to be overwhelmed with information.

Good luck!

 

[Jane]

When Josh was diagnosed, we had a friend of a friend meet us too. He was very kind, but we were so shy about asking questions (didn't want to offend him) it really didn't help much. The good part was just seeing him, looking fairly healthy at 25. He's since had a TX and is living well at 41.

My advice is for you to invite questions by offering a few topics. Maybe give them an overview of what your daily routine is. This may help break the ice. New parents tend to be overwhelmed with information.

Good luck!

 

[Jane]

When Josh was diagnosed, we had a friend of a friend meet us too. He was very kind, but we were so shy about asking questions (didn't want to offend him) it really didn't help much. The good part was just seeing him, looking fairly healthy at 25. He's since had a TX and is living well at 41.

My advice is for you to invite questions by offering a few topics. Maybe give them an overview of what your daily routine is. This may help break the ice. New parents tend to be overwhelmed with information.

Good luck!

 

[Diane]

Its great that you are helping out in this way. You will give these people so much hope. I have talked to several parents of cf children and it always gave them hope and comfort. Usually they start asking questions and it just rolls easily from there. It will feel almost natural to you once you start answering them and talking about your life and so on.......... Good luck and let us know how it goes <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Diane]

Its great that you are helping out in this way. You will give these people so much hope. I have talked to several parents of cf children and it always gave them hope and comfort. Usually they start asking questions and it just rolls easily from there. It will feel almost natural to you once you start answering them and talking about your life and so on.......... Good luck and let us know how it goes <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Diane]

Its great that you are helping out in this way. You will give these people so much hope. I have talked to several parents of cf children and it always gave them hope and comfort. Usually they start asking questions and it just rolls easily from there. It will feel almost natural to you once you start answering them and talking about your life and so on.......... Good luck and let us know how it goes <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Diane]

Its great that you are helping out in this way. You will give these people so much hope. I have talked to several parents of cf children and it always gave them hope and comfort. Usually they start asking questions and it just rolls easily from there. It will feel almost natural to you once you start answering them and talking about your life and so on.......... Good luck and let us know how it goes <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Diane]

Its great that you are helping out in this way. You will give these people so much hope. I have talked to several parents of cf children and it always gave them hope and comfort. Usually they start asking questions and it just rolls easily from there. It will feel almost natural to you once you start answering them and talking about your life and so on.......... Good luck and let us know how it goes <img src="i/expressions/face-icon-small-smile.gif" border="0">