To take the 1 in 4 chance?

[Allie]

I just want to say that it's easy to say "I want another kid" when you're in the early childhood stages of CF. It's a honeymoon, when it seems like Cf is 'not all that bad". But fast-forward to the end stages, which ALWAYS comes in Cf, whatever you make think for the future, this is the reality now. Can you handle watching your child struggle like that? The pain, the breathlessness, the loss of independence? End stage Cf is something no one should ever have to go through, and to this day, Ry's parents carry around a lot of guilt for giving him CF, even though Ry told them he never blamed them....they didn't know. If you can chance your child suffering like that because of something you wanted, more power to you, but if you think god 'wants' you to have another child, have your husband get a vasectomy...that's how Darius was concieved. I could not chance that level of suffering for my child.

It reminds me of a conversation Ry and his dad had, about a week before he died. Ry asked, "If you had known, would you have had me?" Michael paused, trying to think of an answer, and said, "Ry, we love you very much." Ry said "Good answer. That's why I wouldn't have had me either."

 

[Allie]

I just want to say that it's easy to say "I want another kid" when you're in the early childhood stages of CF. It's a honeymoon, when it seems like Cf is 'not all that bad". But fast-forward to the end stages, which ALWAYS comes in Cf, whatever you make think for the future, this is the reality now. Can you handle watching your child struggle like that? The pain, the breathlessness, the loss of independence? End stage Cf is something no one should ever have to go through, and to this day, Ry's parents carry around a lot of guilt for giving him CF, even though Ry told them he never blamed them....they didn't know. If you can chance your child suffering like that because of something you wanted, more power to you, but if you think god 'wants' you to have another child, have your husband get a vasectomy...that's how Darius was concieved. I could not chance that level of suffering for my child.

It reminds me of a conversation Ry and his dad had, about a week before he died. Ry asked, "If you had known, would you have had me?" Michael paused, trying to think of an answer, and said, "Ry, we love you very much." Ry said "Good answer. That's why I wouldn't have had me either."

 

[NoExcuses]

Allie this is why your perspective is so valuable.

So many new CF parents seem blissfully ignorant of what CF really entails. "My kid has only a genetic diagnosis of CF, but no symptoms" is a fabulous example of the denial that I see with so many CF parents on this site.

Thank you for posting, Allie. I know it's tough to post the reality that you and Ry endured.... but everyone, especially these CF parents on this site, needs to understand what CF can bring.

 

[NoExcuses]

Allie this is why your perspective is so valuable.

So many new CF parents seem blissfully ignorant of what CF really entails. "My kid has only a genetic diagnosis of CF, but no symptoms" is a fabulous example of the denial that I see with so many CF parents on this site.

Thank you for posting, Allie. I know it's tough to post the reality that you and Ry endured.... but everyone, especially these CF parents on this site, needs to understand what CF can bring.

 

[NoExcuses]

Allie this is why your perspective is so valuable.

So many new CF parents seem blissfully ignorant of what CF really entails. "My kid has only a genetic diagnosis of CF, but no symptoms" is a fabulous example of the denial that I see with so many CF parents on this site.

Thank you for posting, Allie. I know it's tough to post the reality that you and Ry endured.... but everyone, especially these CF parents on this site, needs to understand what CF can bring.

 

[JazzysMom]

I have to agree with Allie on this. Even with all the advances in medicine and equipment......we dont have a cure. UNTIL that happens end stage CF will exist. The ?? is when and who will be the one shouldering the support at that time. The parents, siblings, the spouse/partner, or will that CFer end up a ward of the state. I dont "dislike" my life because of CF, but if my Mom would have known and chose not to have me because of it.....I would completely understand. Its much like being a CFer and becoming a Mom. There are just certain aspects that you dont understand fully until you have to deal with it.

 

[JazzysMom]

I have to agree with Allie on this. Even with all the advances in medicine and equipment......we dont have a cure. UNTIL that happens end stage CF will exist. The ?? is when and who will be the one shouldering the support at that time. The parents, siblings, the spouse/partner, or will that CFer end up a ward of the state. I dont "dislike" my life because of CF, but if my Mom would have known and chose not to have me because of it.....I would completely understand. Its much like being a CFer and becoming a Mom. There are just certain aspects that you dont understand fully until you have to deal with it.

 

[JazzysMom]

I have to agree with Allie on this. Even with all the advances in medicine and equipment......we dont have a cure. UNTIL that happens end stage CF will exist. The ?? is when and who will be the one shouldering the support at that time. The parents, siblings, the spouse/partner, or will that CFer end up a ward of the state. I dont "dislike" my life because of CF, but if my Mom would have known and chose not to have me because of it.....I would completely understand. Its much like being a CFer and becoming a Mom. There are just certain aspects that you dont understand fully until you have to deal with it.

 

[melleemac]

I also agree with Allie. I havent had to deal with the end stages of cf.......nor do I want to. But the reality is that we do know the out come of this terrible disease. You also have to remember, just because one of your children are having an relatively easy time health wise right now, doesnt necessarily mean that another child will.
My boys are 12 now, and I have watched them go through hell and back time and time again. From their diagnosis they have had a fight on their hands, none of it has been easy on them or the rest of us as a family.
Mel

 

[melleemac]

I also agree with Allie. I havent had to deal with the end stages of cf.......nor do I want to. But the reality is that we do know the out come of this terrible disease. You also have to remember, just because one of your children are having an relatively easy time health wise right now, doesnt necessarily mean that another child will.
My boys are 12 now, and I have watched them go through hell and back time and time again. From their diagnosis they have had a fight on their hands, none of it has been easy on them or the rest of us as a family.
Mel

 

[melleemac]

I also agree with Allie. I havent had to deal with the end stages of cf.......nor do I want to. But the reality is that we do know the out come of this terrible disease. You also have to remember, just because one of your children are having an relatively easy time health wise right now, doesnt necessarily mean that another child will.
My boys are 12 now, and I have watched them go through hell and back time and time again. From their diagnosis they have had a fight on their hands, none of it has been easy on them or the rest of us as a family.
Mel

 

[kybert]

ditto to allie as well. this is the mistake my parents made. when they found out i was on the way they were deciding whether to abort. they chose to keep me. their reason being that their eldest was doing fine with cf and didnt seem so bad. 8 years later their eldest was dead. woopsie, guess cf was bad after all *rolls eyes*

 

[kybert]

ditto to allie as well. this is the mistake my parents made. when they found out i was on the way they were deciding whether to abort. they chose to keep me. their reason being that their eldest was doing fine with cf and didnt seem so bad. 8 years later their eldest was dead. woopsie, guess cf was bad after all *rolls eyes*

 

[kybert]

ditto to allie as well. this is the mistake my parents made. when they found out i was on the way they were deciding whether to abort. they chose to keep me. their reason being that their eldest was doing fine with cf and didnt seem so bad. 8 years later their eldest was dead. woopsie, guess cf was bad after all *rolls eyes*

 

[lemonstolemonade]

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

Allie this is why your perspective is so valuable.

<b>So many new CF parents seem blissfully ignorant of what CF really entails. "My kid has only a genetic diagnosis of CF, but no symptoms" is a fabulous example of the denial that I see with so many CF parents on this site. </b>

Thank you for posting, Allie. I know it's tough to post the reality that you and Ry endured.... but everyone, especially these CF parents on this site, needs to understand what CF can bring.</end quote></div>



Amy,

I don't take offense to your comment about us "blissfully ignorant" parents of genetically diagnosed but asymptomatic children, but I would like to state for the record that some of us who don't know what life yet holds for us and our genetically diagnosed children made some tough decisions.

My husband and I wanted a huge family, but not knowing what CF would do to our family or to our child, or the emotional toll on our non-CF child, we decided with heavy hearts to not have any more and we made it a permanent decision so there couldn't be any "accidents." He has a daughter from a previous marriage and we have two together. One's a carrier and the infant has CF. We have a full house anyway with two full-time girls and one 1/4 time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm doing everything I can to learn about CF, to protect my child without being overprotective, and to determine the best course of action for us as a family. I can't imagine not having my CF infant in my arms every day, but there are days when I wonder when the going gets tough later, what the hard answers will be when she asks questions like Allie said Ry did. I'm sure there will be days when our DD screams at us for being sick and is angry with us for letting her be sick.

We did amnio to find out before she arrived what we could prepare for. The worst thing about this disease is that no matter what you want to do to prepare, you can't. It is impossible. It is like playing Russian Roulette. You don't know when the gun is going to fire.

I'm not fussing at you, Amy. I'm just letting you know that not all of us with a child who is asymptomatic and has a genetic diagnosis is blissfully ignorant. I grieve every day that I can't know more and do more for my child who isn't even clinically sick yet.

I hope that my daughter is as strong as you and has the strength of character to say what she thinks and believes and doesn't let CF stop her in anything she wishes to accomplish.

Thank you for reading. I'm off to finish my gradschool homework and do a breathing treatment on my precious one.

Emily

 

[lemonstolemonade]

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

Allie this is why your perspective is so valuable.

<b>So many new CF parents seem blissfully ignorant of what CF really entails. "My kid has only a genetic diagnosis of CF, but no symptoms" is a fabulous example of the denial that I see with so many CF parents on this site. </b>

Thank you for posting, Allie. I know it's tough to post the reality that you and Ry endured.... but everyone, especially these CF parents on this site, needs to understand what CF can bring.</end quote></div>



Amy,

I don't take offense to your comment about us "blissfully ignorant" parents of genetically diagnosed but asymptomatic children, but I would like to state for the record that some of us who don't know what life yet holds for us and our genetically diagnosed children made some tough decisions.

My husband and I wanted a huge family, but not knowing what CF would do to our family or to our child, or the emotional toll on our non-CF child, we decided with heavy hearts to not have any more and we made it a permanent decision so there couldn't be any "accidents." He has a daughter from a previous marriage and we have two together. One's a carrier and the infant has CF. We have a full house anyway with two full-time girls and one 1/4 time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm doing everything I can to learn about CF, to protect my child without being overprotective, and to determine the best course of action for us as a family. I can't imagine not having my CF infant in my arms every day, but there are days when I wonder when the going gets tough later, what the hard answers will be when she asks questions like Allie said Ry did. I'm sure there will be days when our DD screams at us for being sick and is angry with us for letting her be sick.

We did amnio to find out before she arrived what we could prepare for. The worst thing about this disease is that no matter what you want to do to prepare, you can't. It is impossible. It is like playing Russian Roulette. You don't know when the gun is going to fire.

I'm not fussing at you, Amy. I'm just letting you know that not all of us with a child who is asymptomatic and has a genetic diagnosis is blissfully ignorant. I grieve every day that I can't know more and do more for my child who isn't even clinically sick yet.

I hope that my daughter is as strong as you and has the strength of character to say what she thinks and believes and doesn't let CF stop her in anything she wishes to accomplish.

Thank you for reading. I'm off to finish my gradschool homework and do a breathing treatment on my precious one.

Emily

 

[lemonstolemonade]

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

Allie this is why your perspective is so valuable.

<b>So many new CF parents seem blissfully ignorant of what CF really entails. "My kid has only a genetic diagnosis of CF, but no symptoms" is a fabulous example of the denial that I see with so many CF parents on this site. </b>

Thank you for posting, Allie. I know it's tough to post the reality that you and Ry endured.... but everyone, especially these CF parents on this site, needs to understand what CF can bring.</end quote></div>



Amy,

I don't take offense to your comment about us "blissfully ignorant" parents of genetically diagnosed but asymptomatic children, but I would like to state for the record that some of us who don't know what life yet holds for us and our genetically diagnosed children made some tough decisions.

My husband and I wanted a huge family, but not knowing what CF would do to our family or to our child, or the emotional toll on our non-CF child, we decided with heavy hearts to not have any more and we made it a permanent decision so there couldn't be any "accidents." He has a daughter from a previous marriage and we have two together. One's a carrier and the infant has CF. We have a full house anyway with two full-time girls and one 1/4 time. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I'm doing everything I can to learn about CF, to protect my child without being overprotective, and to determine the best course of action for us as a family. I can't imagine not having my CF infant in my arms every day, but there are days when I wonder when the going gets tough later, what the hard answers will be when she asks questions like Allie said Ry did. I'm sure there will be days when our DD screams at us for being sick and is angry with us for letting her be sick.

We did amnio to find out before she arrived what we could prepare for. The worst thing about this disease is that no matter what you want to do to prepare, you can't. It is impossible. It is like playing Russian Roulette. You don't know when the gun is going to fire.

I'm not fussing at you, Amy. I'm just letting you know that not all of us with a child who is asymptomatic and has a genetic diagnosis is blissfully ignorant. I grieve every day that I can't know more and do more for my child who isn't even clinically sick yet.

I hope that my daughter is as strong as you and has the strength of character to say what she thinks and believes and doesn't let CF stop her in anything she wishes to accomplish.

Thank you for reading. I'm off to finish my gradschool homework and do a breathing treatment on my precious one.

Emily

 

[2perfectboys]

Wow, since this old topic has taken on such popularity, I thought I would give my 2 cents. I am going to disagree with allie and a few of u others by saying, this is a personal decision for every one to make on their own. Just as it is for CFer to have or not to have kids, knowing they will probably die before their children are out of high school. This is even coming from me, who wanted my 1st son w/ CF to have a sibling and used donor sperm that had been screened negative for CF to concieve a second child. But that is just what was right for us, but maybe not for everyone. But while I was pregant with my second child, I was still very concerned w/ CF. Thought what if they missed something with the donor? And the whole time I was thinking, I could be scientifically avoiding CF, but what if he's born with Down's syndrome or heart defects? what is probably enevitable, death.

As much as we would like to think we have control of our lifes, we really don't. Not to get all theological or philosophical, but I think things happen because most of the time they are God's will. Maybe its my conservative catholic view coming out, but I think some things are left better in GOd's hands. When I had a miscarriage between the birth of my two sons, as devastaing as it is, I also realized that there was a reason, this child did not continue to grow.

And don't tell me, just because I have not seen my son seriouly suffer from CF that I can't understand. I've seen plenty of children suffering with bald chemo mood faces and kids that were critically injured by cars and guns. So I have to believe I am blessed. Things could be a lot worse in our lifes.

I didn't order a child with CF and there is a no return poilcy. We can't understand all things, but who's to say if I would have had second child by natural means he/she would not have been born with CF and been a future President. Bottom line is I think u have to look at your life and yourself in the mirror everyday and be able to live with the decision you make.

 

[2perfectboys]

Wow, since this old topic has taken on such popularity, I thought I would give my 2 cents. I am going to disagree with allie and a few of u others by saying, this is a personal decision for every one to make on their own. Just as it is for CFer to have or not to have kids, knowing they will probably die before their children are out of high school. This is even coming from me, who wanted my 1st son w/ CF to have a sibling and used donor sperm that had been screened negative for CF to concieve a second child. But that is just what was right for us, but maybe not for everyone. But while I was pregant with my second child, I was still very concerned w/ CF. Thought what if they missed something with the donor? And the whole time I was thinking, I could be scientifically avoiding CF, but what if he's born with Down's syndrome or heart defects? what is probably enevitable, death.

As much as we would like to think we have control of our lifes, we really don't. Not to get all theological or philosophical, but I think things happen because most of the time they are God's will. Maybe its my conservative catholic view coming out, but I think some things are left better in GOd's hands. When I had a miscarriage between the birth of my two sons, as devastaing as it is, I also realized that there was a reason, this child did not continue to grow.

And don't tell me, just because I have not seen my son seriouly suffer from CF that I can't understand. I've seen plenty of children suffering with bald chemo mood faces and kids that were critically injured by cars and guns. So I have to believe I am blessed. Things could be a lot worse in our lifes.

I didn't order a child with CF and there is a no return poilcy. We can't understand all things, but who's to say if I would have had second child by natural means he/she would not have been born with CF and been a future President. Bottom line is I think u have to look at your life and yourself in the mirror everyday and be able to live with the decision you make.

 

[2perfectboys]

Wow, since this old topic has taken on such popularity, I thought I would give my 2 cents. I am going to disagree with allie and a few of u others by saying, this is a personal decision for every one to make on their own. Just as it is for CFer to have or not to have kids, knowing they will probably die before their children are out of high school. This is even coming from me, who wanted my 1st son w/ CF to have a sibling and used donor sperm that had been screened negative for CF to concieve a second child. But that is just what was right for us, but maybe not for everyone. But while I was pregant with my second child, I was still very concerned w/ CF. Thought what if they missed something with the donor? And the whole time I was thinking, I could be scientifically avoiding CF, but what if he's born with Down's syndrome or heart defects? what is probably enevitable, death.

As much as we would like to think we have control of our lifes, we really don't. Not to get all theological or philosophical, but I think things happen because most of the time they are God's will. Maybe its my conservative catholic view coming out, but I think some things are left better in GOd's hands. When I had a miscarriage between the birth of my two sons, as devastaing as it is, I also realized that there was a reason, this child did not continue to grow.

And don't tell me, just because I have not seen my son seriouly suffer from CF that I can't understand. I've seen plenty of children suffering with bald chemo mood faces and kids that were critically injured by cars and guns. So I have to believe I am blessed. Things could be a lot worse in our lifes.

I didn't order a child with CF and there is a no return poilcy. We can't understand all things, but who's to say if I would have had second child by natural means he/she would not have been born with CF and been a future President. Bottom line is I think u have to look at your life and yourself in the mirror everyday and be able to live with the decision you make.