My daughter was just diagnosed

F

ForeverDance

New member
<P>I just wanted to introduce myself. My daughter was just diagnosed with CF on Wednesday. She will be two weeks tomorrow. She was diagnosed because of the newborn screening and it was a complete shock for us. Neither my husband nor I have a history of CF in our family and had no idea we were carriers. We have a 14 year old daughter already who is a very active healthy girl, but we are going to have her sweat tested anyway just to be sure. My husband's son from his previous marriage is also going to be tested.</P>
<P> </P>
<P>I'm still working on processing the whole thing. Sometimes I feel confident that we will be able to give her a great life and the next minute I'm crying and scared again.  At least for now she is a strong and healthy girl and with the help of the CF clinic I'm hopeful we can keep ahead of it and keep her that way.</P>
 
F

ForeverDance

New member
<P>I just wanted to introduce myself. My daughter was just diagnosed with CF on Wednesday. She will be two weeks tomorrow. She was diagnosed because of the newborn screening and it was a complete shock for us. Neither my husband nor I have a history of CF in our family and had no idea we were carriers. We have a 14 year old daughter already who is a very active healthy girl, but we are going to have her sweat tested anyway just to be sure. My husband's son from his previous marriage is also going to be tested.</P>
<P></P>
<P>I'm still working on processing the whole thing. Sometimes I feel confident that we will be able to give her a great life and the next minute I'm crying and scared again. At least for now she is a strong and healthy girl and with the help of the CF clinic I'm hopeful we can keep ahead of it and keep her that way.</P>
 
F

ForeverDance

New member
<P>I just wanted to introduce myself. My daughter was just diagnosed with CF on Wednesday. She will be two weeks tomorrow. She was diagnosed because of the newborn screening and it was a complete shock for us. Neither my husband nor I have a history of CF in our family and had no idea we were carriers. We have a 14 year old daughter already who is a very active healthy girl, but we are going to have her sweat tested anyway just to be sure. My husband's son from his previous marriage is also going to be tested.</P>
<P></P>
<P>I'm still working on processing the whole thing. Sometimes I feel confident that we will be able to give her a great life and the next minute I'm crying and scared again. At least for now she is a strong and healthy girl and with the help of the CF clinic I'm hopeful we can keep ahead of it and keep her that way.<BR></P>
 
R

Ratatosk

Administrator
Staff member
When our son was diagnosed shortly after he was born, we went thru similar emotions. No family history here either. Complete shock. Pretty much describe it as going thru the stages of grief. Today our little boy is an active elementary school student.

Just take it one step at a time. It can be overwhelming. Eventually you'll get into a routine. Easier said than done, but try not to worry about the what ifs. She's still a normal little girl, who just needs a few extra things to keep her happy and heallthy. Please ask any questions. Most of us have been in your shoes at some point.
 
R

Ratatosk

Administrator
Staff member
When our son was diagnosed shortly after he was born, we went thru similar emotions. No family history here either. Complete shock. Pretty much describe it as going thru the stages of grief. Today our little boy is an active elementary school student.

Just take it one step at a time. It can be overwhelming. Eventually you'll get into a routine. Easier said than done, but try not to worry about the what ifs. She's still a normal little girl, who just needs a few extra things to keep her happy and heallthy. Please ask any questions. Most of us have been in your shoes at some point.
 
R

Ratatosk

Administrator
Staff member
When our son was diagnosed shortly after he was born, we went thru similar emotions. No family history here either. Complete shock. Pretty much describe it as going thru the stages of grief. Today our little boy is an active elementary school student.
<br />
<br />Just take it one step at a time. It can be overwhelming. Eventually you'll get into a routine. Easier said than done, but try not to worry about the what ifs. She's still a normal little girl, who just needs a few extra things to keep her happy and heallthy. Please ask any questions. Most of us have been in your shoes at some point.
<br />
 
P

Printer

Active member
Hi:

Welcome to this site and I'm sorry that you need to be here. You will find tremendous support here. There was a thread, in adult, (forum) CFers over 40. Read through it, I think that you may feel better.

Good luck,
Bill
 
P

Printer

Active member
Hi:

Welcome to this site and I'm sorry that you need to be here. You will find tremendous support here. There was a thread, in adult, (forum) CFers over 40. Read through it, I think that you may feel better.

Good luck,
Bill
 
P

Printer

Active member
Hi:
<br />
<br />Welcome to this site and I'm sorry that you need to be here. You will find tremendous support here. There was a thread, in adult, (forum) CFers over 40. Read through it, I think that you may feel better.
<br />
<br />Good luck,
<br />Bill
<br />
<br />
 
K

Kaethe108

Guest
Dear DanceForever!<br>We have been in your shoes just 8 weeks ago, when our daughter was diagnosed. So I know so very well how you feel. And I can tell you that you will need to give yourself some time to cope with the diagnosis. There will be better days and worse days...<br>BUT (!) you will find out that you really have every reason to be positive about the future of your daughter! All the experts are sure that CF will pretty soon turn into a "manageable disease" (sorry, my English is not good enough to find the right words). Many are sure that there will be a cure...<br>And until then you will find the strength to help your little girl stay healthy and fit so that she will be able to benefit from the new treatments that are in the pipeline!<br>And <span style="font-weight: bold;">please, and I know that is the hardest part, don't let the worries and the fear spoil this wonderful time that you have with your newborn wonder! Enjoy every minute with her and believe in her having a great and joyful life ahead!<br>If you want, tell us something more about you. Where are you from? <br>
 
K

Kaethe108

Guest
Dear DanceForever!<br>We have been in your shoes just 8 weeks ago, when our daughter was diagnosed. So I know so very well how you feel. And I can tell you that you will need to give yourself some time to cope with the diagnosis. There will be better days and worse days...<br>BUT (!) you will find out that you really have every reason to be positive about the future of your daughter! All the experts are sure that CF will pretty soon turn into a "manageable disease" (sorry, my English is not good enough to find the right words). Many are sure that there will be a cure...<br>And until then you will find the strength to help your little girl stay healthy and fit so that she will be able to benefit from the new treatments that are in the pipeline!<br>And <span style="font-weight: bold;">please, and I know that is the hardest part, don't let the worries and the fear spoil this wonderful time that you have with your newborn wonder! Enjoy every minute with her and believe in her having a great and joyful life ahead!<br>If you want, tell us something more about you. Where are you from? <br>
 
K

Kaethe108

Guest
Dear DanceForever!<br>We have been in your shoes just 8 weeks ago, when our daughter was diagnosed. So I know so very well how you feel. And I can tell you that you will need to give yourself some time to cope with the diagnosis. There will be better days and worse days...<br>BUT (!) you will find out that you really have every reason to be positive about the future of your daughter! All the experts are sure that CF will pretty soon turn into a "manageable disease" (sorry, my English is not good enough to find the right words). Many are sure that there will be a cure...<br>And until then you will find the strength to help your little girl stay healthy and fit so that she will be able to benefit from the new treatments that are in the pipeline!<br>And <span style="font-weight: bold;">please, and I know that is the hardest part, don't let the worries and the fear spoil this wonderful time that you have with your newborn wonder! Enjoy every minute with her and believe in her having a great and joyful life ahead!<br>If you want, tell us something more about you. Where are you from? <br>
 
G

gio126

New member
Hi i'd like to welcome you to this forum...reading this and seeing how you just found out 2 weeks ago takes me back 2 years ago and i handled everything. It's hard because everyone says something different but i just want to give you a piece of advice don't believe everything you read and take it to heart because at the end of the day you have to do whats best for your child and it took me a while to accept it but you will get there after the shock and the grief sets in. It is devasting to find out because you want your kids to be happy and healthy but if you take it one day at a time. I can assure you that it'll be easier, i remember going to sleep crying for a while thinking that everytimemy son coughed he was going to get sick. You'll go throughthat as well. It's the fear of the unknown but you'll get through it and you have to be strong for your child.
 
G

gio126

New member
Hi i'd like to welcome you to this forum...reading this and seeing how you just found out 2 weeks ago takes me back 2 years ago and i handled everything. It's hard because everyone says something different but i just want to give you a piece of advice don't believe everything you read and take it to heart because at the end of the day you have to do whats best for your child and it took me a while to accept it but you will get there after the shock and the grief sets in. It is devasting to find out because you want your kids to be happy and healthy but if you take it one day at a time. I can assure you that it'll be easier, i remember going to sleep crying for a while thinking that everytimemy son coughed he was going to get sick. You'll go throughthat as well. It's the fear of the unknown but you'll get through it and you have to be strong for your child.
 
G

gio126

New member
Hi i'd like to welcome you to this forum...reading this and seeing how you just found out 2 weeks ago takes me back 2 years ago and i handled everything. It's hard because everyone says something different but i just want to give you a piece of advice don't believe everything you read and take it to heart because at the end of the day you have to do whats best for your child and it took me a while to accept it but you will get there after the shock and the grief sets in. It is devasting to find out because you want your kids to be happy and healthy but if you take it one day at a time. I can assure you that it'll be easier, i remember going to sleep crying for a while thinking that everytimemy son coughed he was going to get sick. You'll go throughthat as well. It's the fear of the unknown but you'll get through it and you have to be strong for your child.
 
B

BB603

New member
Hi - I hope that by me telling you that I am living proof that CF can be manageable as Kaethe108 said, you will be able to find comfort soon. I know you are probably still in shock, and that's ok. But I really am living proof that CF can be managed. I know there are different severities. My CF is in a moderate stage and I am very healthy. I am also 40 years old. I turned 40 this past July. I wrote about how my parents dealt with the news in a different chat/thread. Although, I cannot relate to what you are going through, as a parent, because I don't have kids; but I can however, tell you my experience as the child. But first, here is some of my background. My parents took a different approach and never told me I have CF. I didn't find out until I was 22 years old. (I was away at school). When I was born, 1971, CF was gloom and doom so my dad decided that it was best for me not to know and to live a "normal" life. (I know that their choice is not for everyone, but it worked out ok for us.) I am the only one in my family as well who has CF. My sister does not and no one else in my extended family either. I was the chosen one. One thing my mom told me when she kept asking the doctor "why me" his answer was "why not you?" You are strong enough to deal with this. Ever since then, my mom never let me think I couldn't do anything. My dad was the same way. They both took excellent care of me. I ran track and played volleyball in high school. I am a first degree black belt in Karate and I kickbox. So yes, this disease is horrible, but it is manageable. I also wrote a book about having CF, my struggles, and my triumphs. The name of my book is Unveiled, by Laurie Huspen. I wrote the book for parents of children with CF, CFers, family, caregivers etc. I am also an advocate for the CF Foundation in IL. I hope you will be able to find peace with CF and like some others said, enjoy your daughter! Enjoy every breath of life!!! If you would like to further chat, please feel free to contact me. lhuspen@vrc-hr.com You'll get through this! Stay positive! Stay well.
 
B

BB603

New member
Hi - I hope that by me telling you that I am living proof that CF can be manageable as Kaethe108 said, you will be able to find comfort soon. I know you are probably still in shock, and that's ok. But I really am living proof that CF can be managed. I know there are different severities. My CF is in a moderate stage and I am very healthy. I am also 40 years old. I turned 40 this past July. I wrote about how my parents dealt with the news in a different chat/thread. Although, I cannot relate to what you are going through, as a parent, because I don't have kids; but I can however, tell you my experience as the child. But first, here is some of my background. My parents took a different approach and never told me I have CF. I didn't find out until I was 22 years old. (I was away at school). When I was born, 1971, CF was gloom and doom so my dad decided that it was best for me not to know and to live a "normal" life. (I know that their choice is not for everyone, but it worked out ok for us.) I am the only one in my family as well who has CF. My sister does not and no one else in my extended family either. I was the chosen one. One thing my mom told me when she kept asking the doctor "why me" his answer was "why not you?" You are strong enough to deal with this. Ever since then, my mom never let me think I couldn't do anything. My dad was the same way. They both took excellent care of me. I ran track and played volleyball in high school. I am a first degree black belt in Karate and I kickbox. So yes, this disease is horrible, but it is manageable. I also wrote a book about having CF, my struggles, and my triumphs. The name of my book is Unveiled, by Laurie Huspen. I wrote the book for parents of children with CF, CFers, family, caregivers etc. I am also an advocate for the CF Foundation in IL. I hope you will be able to find peace with CF and like some others said, enjoy your daughter! Enjoy every breath of life!!! If you would like to further chat, please feel free to contact me. lhuspen@vrc-hr.com You'll get through this! Stay positive! Stay well.
 
B

BB603

New member
Hi - I hope that by me telling you that I am living proof that CF can be manageable as Kaethe108 said, you will be able to find comfort soon. I know you are probably still in shock, and that's ok. But I really am living proof that CF can be managed. I know there are different severities. My CF is in a moderate stage and I am very healthy. I am also 40 years old. I turned 40 this past July. I wrote about how my parents dealt with the news in a different chat/thread. Although, I cannot relate to what you are going through, as a parent, because I don't have kids; but I can however, tell you my experience as the child. But first, here is some of my background. My parents took a different approach and never told me I have CF. I didn't find out until I was 22 years old. (I was away at school). When I was born, 1971, CF was gloom and doom so my dad decided that it was best for me not to know and to live a "normal" life. (I know that their choice is not for everyone, but it worked out ok for us.) I am the only one in my family as well who has CF. My sister does not and no one else in my extended family either. I was the chosen one. One thing my mom told me when she kept asking the doctor "why me" his answer was "why not you?" You are strong enough to deal with this. Ever since then, my mom never let me think I couldn't do anything. My dad was the same way. They both took excellent care of me. I ran track and played volleyball in high school. I am a first degree black belt in Karate and I kickbox. So yes, this disease is horrible, but it is manageable. I also wrote a book about having CF, my struggles, and my triumphs. The name of my book is Unveiled, by Laurie Huspen. I wrote the book for parents of children with CF, CFers, family, caregivers etc. I am also an advocate for the CF Foundation in IL. I hope you will be able to find peace with CF and like some others said, enjoy your daughter! Enjoy every breath of life!!! If you would like to further chat, please feel free to contact me. lhuspen@vrc-hr.com You'll get through this! Stay positive! Stay well.
 
You must log in or register to reply here.
Top