need advice...

F

fondreflections

New member
I'm going to be 100% honest with this so yes, I may offend some people!

A couple of months ago, my husband told me about a couple that he worked with. They are in their early 20's and found out that they were both carriers of CF. They decided to pursue pregnancy regardless of possible negative outcomes. I realize they aren't the only people in the world to take such chances, but this is a VERY SORE SUBJECT for me. Afterall, it is the child that will have CF not the parents!

Well (low and behold), the child was born with CF. I am always strolling through Jake's work and always commented on how 'good' I look. Well, the new CF father asked Jake if I would consider talking to him and his wife about CF. Jake knew 6 months ago about how I felt in regards to their decision. I kept my mouth shut since it's not my decision to make! I more/less avoided the whole thing not to add fuel to the fire.

Now, I'm faced with a tough decision. I really don't understand why parents play the odds. I don't! That included my own parents which I have made VERY CLEAR over the years. I'm NOT saying that parents won't love their children regardless!!! This has to do with the child enduring all the pain and suffering from a life with Cystic Fibrosis!!! It's NOT fair to the child!!!

I can handle parents not knowing beforehand. That's a different story...

Anyway, I feel like I OWE IT TO THE CHILD TO GIVE ADVICE in regards to caring for CF. I feel so bad for the child. Even with the advice, the parents in question aren't the MOST COMPLIANT.

I feel so torn. You would have a VERY HARD time finding a CF patient more compliant than I am. However, I am VERY OPINIONATED! I'm not the best with tact either, for that matter. So I'm not sure what to do...Can I keep my mouth shut and completely focus on the CF child??? I probably could, but I would be anxious for the whole thing to be over with. I would also really have to watch my P's and Q's the whole evening...I just don't want to add any fuel to the fire either...

Advice...
 
F

fondreflections

New member
I'm going to be 100% honest with this so yes, I may offend some people!

A couple of months ago, my husband told me about a couple that he worked with. They are in their early 20's and found out that they were both carriers of CF. They decided to pursue pregnancy regardless of possible negative outcomes. I realize they aren't the only people in the world to take such chances, but this is a VERY SORE SUBJECT for me. Afterall, it is the child that will have CF not the parents!

Well (low and behold), the child was born with CF. I am always strolling through Jake's work and always commented on how 'good' I look. Well, the new CF father asked Jake if I would consider talking to him and his wife about CF. Jake knew 6 months ago about how I felt in regards to their decision. I kept my mouth shut since it's not my decision to make! I more/less avoided the whole thing not to add fuel to the fire.

Now, I'm faced with a tough decision. I really don't understand why parents play the odds. I don't! That included my own parents which I have made VERY CLEAR over the years. I'm NOT saying that parents won't love their children regardless!!! This has to do with the child enduring all the pain and suffering from a life with Cystic Fibrosis!!! It's NOT fair to the child!!!

I can handle parents not knowing beforehand. That's a different story...

Anyway, I feel like I OWE IT TO THE CHILD TO GIVE ADVICE in regards to caring for CF. I feel so bad for the child. Even with the advice, the parents in question aren't the MOST COMPLIANT.

I feel so torn. You would have a VERY HARD time finding a CF patient more compliant than I am. However, I am VERY OPINIONATED! I'm not the best with tact either, for that matter. So I'm not sure what to do...Can I keep my mouth shut and completely focus on the CF child??? I probably could, but I would be anxious for the whole thing to be over with. I would also really have to watch my P's and Q's the whole evening...I just don't want to add any fuel to the fire either...

Advice...
 
F

fondreflections

New member
I'm going to be 100% honest with this so yes, I may offend some people!

A couple of months ago, my husband told me about a couple that he worked with. They are in their early 20's and found out that they were both carriers of CF. They decided to pursue pregnancy regardless of possible negative outcomes. I realize they aren't the only people in the world to take such chances, but this is a VERY SORE SUBJECT for me. Afterall, it is the child that will have CF not the parents!

Well (low and behold), the child was born with CF. I am always strolling through Jake's work and always commented on how 'good' I look. Well, the new CF father asked Jake if I would consider talking to him and his wife about CF. Jake knew 6 months ago about how I felt in regards to their decision. I kept my mouth shut since it's not my decision to make! I more/less avoided the whole thing not to add fuel to the fire.

Now, I'm faced with a tough decision. I really don't understand why parents play the odds. I don't! That included my own parents which I have made VERY CLEAR over the years. I'm NOT saying that parents won't love their children regardless!!! This has to do with the child enduring all the pain and suffering from a life with Cystic Fibrosis!!! It's NOT fair to the child!!!

I can handle parents not knowing beforehand. That's a different story...

Anyway, I feel like I OWE IT TO THE CHILD TO GIVE ADVICE in regards to caring for CF. I feel so bad for the child. Even with the advice, the parents in question aren't the MOST COMPLIANT.

I feel so torn. You would have a VERY HARD time finding a CF patient more compliant than I am. However, I am VERY OPINIONATED! I'm not the best with tact either, for that matter. So I'm not sure what to do...Can I keep my mouth shut and completely focus on the CF child??? I probably could, but I would be anxious for the whole thing to be over with. I would also really have to watch my P's and Q's the whole evening...I just don't want to add any fuel to the fire either...

Advice...
 
F

fondreflections

New member
I'm going to be 100% honest with this so yes, I may offend some people!

A couple of months ago, my husband told me about a couple that he worked with. They are in their early 20's and found out that they were both carriers of CF. They decided to pursue pregnancy regardless of possible negative outcomes. I realize they aren't the only people in the world to take such chances, but this is a VERY SORE SUBJECT for me. Afterall, it is the child that will have CF not the parents!

Well (low and behold), the child was born with CF. I am always strolling through Jake's work and always commented on how 'good' I look. Well, the new CF father asked Jake if I would consider talking to him and his wife about CF. Jake knew 6 months ago about how I felt in regards to their decision. I kept my mouth shut since it's not my decision to make! I more/less avoided the whole thing not to add fuel to the fire.

Now, I'm faced with a tough decision. I really don't understand why parents play the odds. I don't! That included my own parents which I have made VERY CLEAR over the years. I'm NOT saying that parents won't love their children regardless!!! This has to do with the child enduring all the pain and suffering from a life with Cystic Fibrosis!!! It's NOT fair to the child!!!

I can handle parents not knowing beforehand. That's a different story...

Anyway, I feel like I OWE IT TO THE CHILD TO GIVE ADVICE in regards to caring for CF. I feel so bad for the child. Even with the advice, the parents in question aren't the MOST COMPLIANT.

I feel so torn. You would have a VERY HARD time finding a CF patient more compliant than I am. However, I am VERY OPINIONATED! I'm not the best with tact either, for that matter. So I'm not sure what to do...Can I keep my mouth shut and completely focus on the CF child??? I probably could, but I would be anxious for the whole thing to be over with. I would also really have to watch my P's and Q's the whole evening...I just don't want to add any fuel to the fire either...

Advice...
 
F

fondreflections

New member
I'm going to be 100% honest with this so yes, I may offend some people!
<br />
<br />A couple of months ago, my husband told me about a couple that he worked with. They are in their early 20's and found out that they were both carriers of CF. They decided to pursue pregnancy regardless of possible negative outcomes. I realize they aren't the only people in the world to take such chances, but this is a VERY SORE SUBJECT for me. Afterall, it is the child that will have CF not the parents!
<br />
<br />Well (low and behold), the child was born with CF. I am always strolling through Jake's work and always commented on how 'good' I look. Well, the new CF father asked Jake if I would consider talking to him and his wife about CF. Jake knew 6 months ago about how I felt in regards to their decision. I kept my mouth shut since it's not my decision to make! I more/less avoided the whole thing not to add fuel to the fire.
<br />
<br />Now, I'm faced with a tough decision. I really don't understand why parents play the odds. I don't! That included my own parents which I have made VERY CLEAR over the years. I'm NOT saying that parents won't love their children regardless!!! This has to do with the child enduring all the pain and suffering from a life with Cystic Fibrosis!!! It's NOT fair to the child!!!
<br />
<br />I can handle parents not knowing beforehand. That's a different story...
<br />
<br />Anyway, I feel like I OWE IT TO THE CHILD TO GIVE ADVICE in regards to caring for CF. I feel so bad for the child. Even with the advice, the parents in question aren't the MOST COMPLIANT.
<br />
<br />I feel so torn. You would have a VERY HARD time finding a CF patient more compliant than I am. However, I am VERY OPINIONATED! I'm not the best with tact either, for that matter. So I'm not sure what to do...Can I keep my mouth shut and completely focus on the CF child??? I probably could, but I would be anxious for the whole thing to be over with. I would also really have to watch my P's and Q's the whole evening...I just don't want to add any fuel to the fire either...
<br />
<br />Advice...
 
S

sarabeth87

New member
I agree with you that they shouldn't have risked it. If they were going to risk it, they should have read up very extensively on CF and learned everything they possibly could have before the child was born. I'm not telling you what to do, but for myself, I probably wouldn't be able to talk to them. I would probably end up telling them what I thought about their decision and offending them. I can't help but be rude in situations like that. I think that was very selfish of them to do that for their own desire to have a kid.
 
S

sarabeth87

New member
I agree with you that they shouldn't have risked it. If they were going to risk it, they should have read up very extensively on CF and learned everything they possibly could have before the child was born. I'm not telling you what to do, but for myself, I probably wouldn't be able to talk to them. I would probably end up telling them what I thought about their decision and offending them. I can't help but be rude in situations like that. I think that was very selfish of them to do that for their own desire to have a kid.
 
S

sarabeth87

New member
I agree with you that they shouldn't have risked it. If they were going to risk it, they should have read up very extensively on CF and learned everything they possibly could have before the child was born. I'm not telling you what to do, but for myself, I probably wouldn't be able to talk to them. I would probably end up telling them what I thought about their decision and offending them. I can't help but be rude in situations like that. I think that was very selfish of them to do that for their own desire to have a kid.
 
S

sarabeth87

New member
I agree with you that they shouldn't have risked it. If they were going to risk it, they should have read up very extensively on CF and learned everything they possibly could have before the child was born. I'm not telling you what to do, but for myself, I probably wouldn't be able to talk to them. I would probably end up telling them what I thought about their decision and offending them. I can't help but be rude in situations like that. I think that was very selfish of them to do that for their own desire to have a kid.
 
S

sarabeth87

New member
I agree with you that they shouldn't have risked it. If they were going to risk it, they should have read up very extensively on CF and learned everything they possibly could have before the child was born. I'm not telling you what to do, but for myself, I probably wouldn't be able to talk to them. I would probably end up telling them what I thought about their decision and offending them. I can't help but be rude in situations like that. I think that was very selfish of them to do that for their own desire to have a kid.
 
R

Ratatosk

Administrator
Staff member
We didn't know beforehand and have made the decision not to have anymore children. I cringe at the CF clinic and great strides when I see parents who decided that a 25% chance was no big deal and have ended up with another child wcf. That being said... What's done is done. They have their child wcf. Even if they aren't compliant might be a good idea to visit with them -- stress the importance of being proactive and that you're available to answer any questions. Maybe steer them toward info on this site or the CFF one.

As for watching your p's and q's. Locally there are about three of us parents who go to the City for CF care and we're flabbergasted when we meet up with parents of other cfers who seem to be proud of the fact that their children don't take any medication, don't do CPT or vest. And they can't be convinced of being proactive because the local accreditted clinic seems to discourage those things unless there are symptoms.
 
R

Ratatosk

Administrator
Staff member
We didn't know beforehand and have made the decision not to have anymore children. I cringe at the CF clinic and great strides when I see parents who decided that a 25% chance was no big deal and have ended up with another child wcf. That being said... What's done is done. They have their child wcf. Even if they aren't compliant might be a good idea to visit with them -- stress the importance of being proactive and that you're available to answer any questions. Maybe steer them toward info on this site or the CFF one.

As for watching your p's and q's. Locally there are about three of us parents who go to the City for CF care and we're flabbergasted when we meet up with parents of other cfers who seem to be proud of the fact that their children don't take any medication, don't do CPT or vest. And they can't be convinced of being proactive because the local accreditted clinic seems to discourage those things unless there are symptoms.
 
R

Ratatosk

Administrator
Staff member
We didn't know beforehand and have made the decision not to have anymore children. I cringe at the CF clinic and great strides when I see parents who decided that a 25% chance was no big deal and have ended up with another child wcf. That being said... What's done is done. They have their child wcf. Even if they aren't compliant might be a good idea to visit with them -- stress the importance of being proactive and that you're available to answer any questions. Maybe steer them toward info on this site or the CFF one.

As for watching your p's and q's. Locally there are about three of us parents who go to the City for CF care and we're flabbergasted when we meet up with parents of other cfers who seem to be proud of the fact that their children don't take any medication, don't do CPT or vest. And they can't be convinced of being proactive because the local accreditted clinic seems to discourage those things unless there are symptoms.
 
R

Ratatosk

Administrator
Staff member
We didn't know beforehand and have made the decision not to have anymore children. I cringe at the CF clinic and great strides when I see parents who decided that a 25% chance was no big deal and have ended up with another child wcf. That being said... What's done is done. They have their child wcf. Even if they aren't compliant might be a good idea to visit with them -- stress the importance of being proactive and that you're available to answer any questions. Maybe steer them toward info on this site or the CFF one.

As for watching your p's and q's. Locally there are about three of us parents who go to the City for CF care and we're flabbergasted when we meet up with parents of other cfers who seem to be proud of the fact that their children don't take any medication, don't do CPT or vest. And they can't be convinced of being proactive because the local accreditted clinic seems to discourage those things unless there are symptoms.
 
R

Ratatosk

Administrator
Staff member
We didn't know beforehand and have made the decision not to have anymore children. I cringe at the CF clinic and great strides when I see parents who decided that a 25% chance was no big deal and have ended up with another child wcf. That being said... What's done is done. They have their child wcf. Even if they aren't compliant might be a good idea to visit with them -- stress the importance of being proactive and that you're available to answer any questions. Maybe steer them toward info on this site or the CFF one.
<br />
<br />As for watching your p's and q's. Locally there are about three of us parents who go to the City for CF care and we're flabbergasted when we meet up with parents of other cfers who seem to be proud of the fact that their children don't take any medication, don't do CPT or vest. And they can't be convinced of being proactive because the local accreditted clinic seems to discourage those things unless there are symptoms.
 
K

kmaried

New member
Hey Jenny,

Regardless of their past decisions, there is now a child with CF, and I think you'd be helping that kid a whole lot if you were able to impress upon these parents how important early compliance is. Maybe you could even take a copy of that CF guide Dr Warwick wrote at one point with you to give them. He illustrated the % chance each day you have to get sick, and how that % changes if you do CPT - then he shows how that adds up over the year to really make a difference. If you don't know what I'm talking about I'll try to find it.

If you really don't feel comfortable, maybe just passing on some literature would be a good idea. Or even a phone call instead of a sit down talk.

Take their comments with a grain of salt -- Hey, at least you're making CF LOOK easy! <img src="i/expressions/face-icon-small-wink.gif" border="0">

Good luck!!,
Kristin
 
K

kmaried

New member
Hey Jenny,

Regardless of their past decisions, there is now a child with CF, and I think you'd be helping that kid a whole lot if you were able to impress upon these parents how important early compliance is. Maybe you could even take a copy of that CF guide Dr Warwick wrote at one point with you to give them. He illustrated the % chance each day you have to get sick, and how that % changes if you do CPT - then he shows how that adds up over the year to really make a difference. If you don't know what I'm talking about I'll try to find it.

If you really don't feel comfortable, maybe just passing on some literature would be a good idea. Or even a phone call instead of a sit down talk.

Take their comments with a grain of salt -- Hey, at least you're making CF LOOK easy! <img src="i/expressions/face-icon-small-wink.gif" border="0">

Good luck!!,
Kristin
 
K

kmaried

New member
Hey Jenny,

Regardless of their past decisions, there is now a child with CF, and I think you'd be helping that kid a whole lot if you were able to impress upon these parents how important early compliance is. Maybe you could even take a copy of that CF guide Dr Warwick wrote at one point with you to give them. He illustrated the % chance each day you have to get sick, and how that % changes if you do CPT - then he shows how that adds up over the year to really make a difference. If you don't know what I'm talking about I'll try to find it.

If you really don't feel comfortable, maybe just passing on some literature would be a good idea. Or even a phone call instead of a sit down talk.

Take their comments with a grain of salt -- Hey, at least you're making CF LOOK easy! <img src="i/expressions/face-icon-small-wink.gif" border="0">

Good luck!!,
Kristin
 
K

kmaried

New member
Hey Jenny,

Regardless of their past decisions, there is now a child with CF, and I think you'd be helping that kid a whole lot if you were able to impress upon these parents how important early compliance is. Maybe you could even take a copy of that CF guide Dr Warwick wrote at one point with you to give them. He illustrated the % chance each day you have to get sick, and how that % changes if you do CPT - then he shows how that adds up over the year to really make a difference. If you don't know what I'm talking about I'll try to find it.

If you really don't feel comfortable, maybe just passing on some literature would be a good idea. Or even a phone call instead of a sit down talk.

Take their comments with a grain of salt -- Hey, at least you're making CF LOOK easy! <img src="i/expressions/face-icon-small-wink.gif" border="0">

Good luck!!,
Kristin
 
K

kmaried

New member
Hey Jenny,
<br />
<br />Regardless of their past decisions, there is now a child with CF, and I think you'd be helping that kid a whole lot if you were able to impress upon these parents how important early compliance is. Maybe you could even take a copy of that CF guide Dr Warwick wrote at one point with you to give them. He illustrated the % chance each day you have to get sick, and how that % changes if you do CPT - then he shows how that adds up over the year to really make a difference. If you don't know what I'm talking about I'll try to find it.
<br />
<br />If you really don't feel comfortable, maybe just passing on some literature would be a good idea. Or even a phone call instead of a sit down talk.
<br />
<br />Take their comments with a grain of salt -- Hey, at least you're making CF LOOK easy! <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />Good luck!!,
<br />Kristin
 
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