Second Child??

[hmw]

MamaScarlett- oh, absolutely. I agree fully that the attitudes we convey to our children should not be those of hopelessness and negativity- and that mindset won't only come across in our words but also in how we act.

I also think it's important to note that parents will come to forums like this when they need to express certain feelings about this disease (this is true about any health condition) in order to have an outlet among others who understand, and to help them be able to NOT express it at home around their children.

So MANY times people may see parents appear 'negative' etc, they may only be seeing a small slice of us- not how we present ourselves to our families and everyone we know IRL. I know in my case, these online forums are my main place to talk about CF at all. It's not really a topic of conversation at home at all except when one of the kids bring it up, when fundraisers come up, or in practical terms- appts, whatever. Treatment times are not a discourse about the disease. Emily is not the community poster child for cf, our family lives don't revolve around it, and I strive to give her as much normalcy as her health will allow.

Re harsh realities... My daughter was told she was going to die at the age of 9 by a CLASSMATE. That took a lot of damage control by me and our clinic social worker to repair to any degree. My son read educational materials provided by our accredited CF center at the age of 11 and 12 when emily was diagnosed, and went online and read REPUTABLE information, not crazy out of date stuff and saw the life expectancy, heard the word fatal when he learned about the disease in an up to date genetics unit in science class at the age of 13, has seen the great strides fundraising videos everyone plasters on FB this time of year featuring little children who have died not back in the sixties but NOW. It's the reality of the disease and they weren't given the very harshest of details by me.

 

[hmw]

MamaScarlett- oh, absolutely. I agree fully that the attitudes we convey to our children should not be those of hopelessness and negativity- and that mindset won't only come across in our words but also in how we act.

I also think it's important to note that parents will come to forums like this when they need to express certain feelings about this disease (this is true about any health condition) in order to have an outlet among others who understand, and to help them be able to NOT express it at home around their children.

So MANY times people may see parents appear 'negative' etc, they may only be seeing a small slice of us- not how we present ourselves to our families and everyone we know IRL. I know in my case, these online forums are my main place to talk about CF at all. It's not really a topic of conversation at home at all except when one of the kids bring it up, when fundraisers come up, or in practical terms- appts, whatever. Treatment times are not a discourse about the disease. Emily is not the community poster child for cf, our family lives don't revolve around it, and I strive to give her as much normalcy as her health will allow.

Re harsh realities... My daughter was told she was going to die at the age of 9 by a CLASSMATE. That took a lot of damage control by me and our clinic social worker to repair to any degree. My son read educational materials provided by our accredited CF center at the age of 11 and 12 when emily was diagnosed, and went online and read REPUTABLE information, not crazy out of date stuff and saw the life expectancy, heard the word fatal when he learned about the disease in an up to date genetics unit in science class at the age of 13, has seen the great strides fundraising videos everyone plasters on FB this time of year featuring little children who have died not back in the sixties but NOW. It's the reality of the disease and they weren't given the very harshest of details by me.

 

[Ratatosk]

As a parent it's my job to worry. It's my child's job to go to school, make friends and have fun. We try to maintain a normal life despite treatments, medications, appointments, occaisional vomiting episodes... Similar to Harriet, this is really the only place I have to discuss my hopes, fears -- to vent, ask questions. Family and friends just don't get it. My mother would like nothing more than to coddle DS and play the "poor me" I have a sick grandchild card. The first people from the CF community that I met when DS was diagnosed as a newborn told me horrible stories about how sick their children were, how they were unable to go to school or lead normal lives. I was terrified and so relieved to find a place like this.

We though long and hard about our decision to only have one child and it took me a long time before I could hold someone else's baby or not feel a twinge of jealousy, the unfairness of it all because I wanted another baby so badly and it's not fair that others can just go ahead and have kids and not have to worry about a thing...

Unfortunately CF is a progressive, degenerative disease. Things can go downhill quickly -- flu and other illnesses.. Liver disease, lung infections... As a parent, I try to be proactive and vigilant; however, sometimes that just isn't enough. It's the luck of the draw. I try to do the best I can, hope for the best and make sure my child is happy and well cared for.

 

[Ratatosk]

As a parent it's my job to worry. It's my child's job to go to school, make friends and have fun. We try to maintain a normal life despite treatments, medications, appointments, occaisional vomiting episodes... Similar to Harriet, this is really the only place I have to discuss my hopes, fears -- to vent, ask questions. Family and friends just don't get it. My mother would like nothing more than to coddle DS and play the "poor me" I have a sick grandchild card. The first people from the CF community that I met when DS was diagnosed as a newborn told me horrible stories about how sick their children were, how they were unable to go to school or lead normal lives. I was terrified and so relieved to find a place like this.

We though long and hard about our decision to only have one child and it took me a long time before I could hold someone else's baby or not feel a twinge of jealousy, the unfairness of it all because I wanted another baby so badly and it's not fair that others can just go ahead and have kids and not have to worry about a thing...

Unfortunately CF is a progressive, degenerative disease. Things can go downhill quickly -- flu and other illnesses.. Liver disease, lung infections... As a parent, I try to be proactive and vigilant; however, sometimes that just isn't enough. It's the luck of the draw. I try to do the best I can, hope for the best and make sure my child is happy and well cared for.

 

[Anomie]

Its not really about accepting her fate, being honest or just blowing off some steam. Its about being strongly opposed to cf carriers having more children. Strongly opposed to saying, "we already have one kid with cf, god wouldn't be so cruel as to give us another one". Strongly opposed to believing that having one child with cf decreases the odds of having another born with the disease or that a cure will be out in time to save them so lets put our faith in god or new medicine and "go for it". Bottom line is their are no guarantees when it comes to this disease and it will be years before we know the long-term outcome for people taking vertex drugs. But I'm all about having hope that they will slow the disease down long enough so that regenerative medicine will have time to develop some type of stem cell therapy for repairing the damaged lung tissue. I was the one that posted the thread about the Harvard scientists that grew cf lung tissue as a better alternative to screening new drugs. Not alot of people checked it out but I've been seeing lots of articles for it online lately.

 

[Anomie]

Its not really about accepting her fate, being honest or just blowing off some steam. Its about being strongly opposed to cf carriers having more children. Strongly opposed to saying, "we already have one kid with cf, god wouldn't be so cruel as to give us another one". Strongly opposed to believing that having one child with cf decreases the odds of having another born with the disease or that a cure will be out in time to save them so lets put our faith in god or new medicine and "go for it". Bottom line is their are no guarantees when it comes to this disease and it will be years before we know the long-term outcome for people taking vertex drugs. But I'm all about having hope that they will slow the disease down long enough so that regenerative medicine will have time to develop some type of stem cell therapy for repairing the damaged lung tissue. I was the one that posted the thread about the Harvard scientists that grew cf lung tissue as a better alternative to screening new drugs. Not alot of people checked it out but I've been seeing lots of articles for it online lately.

 

[sneely3]

I have 3 children. My first daughter was born healthy (she is not even a carrier). I got pregnant again and had another little girl who was diagnosed with CF. I wanted another child, but was terrified of having another child with CF. My husband did not want anymore children. I did get pregnant (unplanned) with a little boy. When I was 12 weeks pregnant I underwent CVS. He is a carrier of the Delta F508 gene. It is a hard decision. Not something to take lightly. It is something that you and your husband will have to sit down and see if taking the risk is what is best for your family.

 

[sneely3]

I have 3 children. My first daughter was born healthy (she is not even a carrier). I got pregnant again and had another little girl who was diagnosed with CF. I wanted another child, but was terrified of having another child with CF. My husband did not want anymore children. I did get pregnant (unplanned) with a little boy. When I was 12 weeks pregnant I underwent CVS. He is a carrier of the Delta F508 gene. It is a hard decision. Not something to take lightly. It is something that you and your husband will have to sit down and see if taking the risk is what is best for your family.

 

[Ratatosk]

Anomie, too admit to having had similar strong feelings about carriers making an intentional choice to have more children. But, mainly my issue has to do with one person in particular in my area who had a child diagnosed thru newborn screening. This child has had pneumonia numerous times, his mother doesn't do CPT or vest treatments , complains constantly about the costs of medical care, medications... and a couple years ago decided to have another child because they already had their "one in 4 chance" so she just knew they weren't going to have another wcf. The 2nd child also had CF. And also has had pneumonia several times. We were at planning meeting for the CF walk and the poor little girl just rumbled she was so sick. Several of us encouraged her to take her daughter in to the clinic.

So I guess my issue is mainly with a specific individual who is neglectful.

 

[Ratatosk]

Anomie, too admit to having had similar strong feelings about carriers making an intentional choice to have more children. But, mainly my issue has to do with one person in particular in my area who had a child diagnosed thru newborn screening. This child has had pneumonia numerous times, his mother doesn't do CPT or vest treatments , complains constantly about the costs of medical care, medications... and a couple years ago decided to have another child because they already had their "one in 4 chance" so she just knew they weren't going to have another wcf. The 2nd child also had CF. And also has had pneumonia several times. We were at planning meeting for the CF walk and the poor little girl just rumbled she was so sick. Several of us encouraged her to take her daughter in to the clinic.

So I guess my issue is mainly with a specific individual who is neglectful.

 

[serendipity730]

I agree with musclemania also. While I, of course, wish I did not have CF, I certainly am glad that my parents (unknowing carriers) had me! I am the third in line and the only with CF. If my parents had stopped at two, they may have never known CF was in the family. Any baby born with CF today has MANY more advantages than the adults living with CF now. I think there is a lot of reason to hope for major improvements in the years to come. I know someone else mentioned the potential that even a healthy child will introduce germs into the house. I'm sure this is true. But, I wouldn't discount the value of having a sibling. I have two older sisters, who I COULDN'T have gotten through some of the tough times with CF without. While my CF certainly introduced hardships into their life, I have no doubt that they are the caring, thoughtful people they are today, in part, due to CF being a part of their world.

 

[serendipity730]

I agree with musclemania also. While I, of course, wish I did not have CF, I certainly am glad that my parents (unknowing carriers) had me! I am the third in line and the only with CF. If my parents had stopped at two, they may have never known CF was in the family. Any baby born with CF today has MANY more advantages than the adults living with CF now. I think there is a lot of reason to hope for major improvements in the years to come. I know someone else mentioned the potential that even a healthy child will introduce germs into the house. I'm sure this is true. But, I wouldn't discount the value of having a sibling. I have two older sisters, who I COULDN'T have gotten through some of the tough times with CF without. While my CF certainly introduced hardships into their life, I have no doubt that they are the caring, thoughtful people they are today, in part, due to CF being a part of their world.

 

[Kaethe108]

Thank you for these lines, Mary!
It is what I hope my daughter/son would write one day if we decide to have another child!

 

[Kaethe108]

Thank you for these lines, Mary!
It is what I hope my daughter/son would write one day if we decide to have another child!

 

[mackenziesmom]

I wouldn't listen to some of the negative posts here. Some people just live life with the glass half empty and they want everyone else to do the same.
Do what your heart tells you to do. No one is born with a lifetime guarantee or a guarantee of perfect health. Hope for the best. Prepare for the worst.
joan

 

[mackenziesmom]

I wouldn't listen to some of the negative posts here. Some people just live life with the glass half empty and they want everyone else to do the same.
Do what your heart tells you to do. No one is born with a lifetime guarantee or a guarantee of perfect health. Hope for the best. Prepare for the worst.
joan

 

[JENNYC]

Mary, I never even thought of that aspect of it, but how very right you are!! I have 2 sisters and I don't have CF but I lean on my sisters for everything, and can't imagine my life without them. While Clayton and Abby are still very young I hope they have that bound like me and my sisters have. And I think that they will. I know that when she is in the hospital he always babies her when she gets home and it is so sweet, and I'm sure it will carry on when they get older. Such a great point. You can't talk to anyone like you can talk to a sibling. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank you so much for posting!! So many wonderful blessing!!

 

[JENNYC]

Mary, I never even thought of that aspect of it, but how very right you are!! I have 2 sisters and I don't have CF but I lean on my sisters for everything, and can't imagine my life without them. While Clayton and Abby are still very young I hope they have that bound like me and my sisters have. And I think that they will. I know that when she is in the hospital he always babies her when she gets home and it is so sweet, and I'm sure it will carry on when they get older. Such a great point. You can't talk to anyone like you can talk to a sibling. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank you so much for posting!! So many wonderful blessing!!

 

[Anomie]

Ratatosk-
Don't you think you should report this mother to CPS. There was an article recently in the news where a mother was convicted of 2nd degree negligent homicide for the death of her three year old daughter with cystic fibrosis. Detectives testified that they found unfilled prescriptions and unopened bottles of enzymes in the house and the mother had missed every single one of her daughter's clinic appointments. The defense's strategy was to blame the social worker for not intervening in time. When handing down a life-sentence, the judge remarked how his past experience as a paramedic made him very aware of how the little girl must've struggled to breathe the last few months of her life.

http://dailymail.com/News/PutnamCounty/201201190099

 

[Anomie]

Ratatosk-
Don't you think you should report this mother to CPS. There was an article recently in the news where a mother was convicted of 2nd degree negligent homicide for the death of her three year old daughter with cystic fibrosis. Detectives testified that they found unfilled prescriptions and unopened bottles of enzymes in the house and the mother had missed every single one of her daughter's clinic appointments. The defense's strategy was to blame the social worker for not intervening in time. When handing down a life-sentence, the judge remarked how his past experience as a paramedic made him very aware of how the little girl must've struggled to breathe the last few months of her life.

http://dailymail.com/News/PutnamCounty/201201190099