What did your parents do right/wrong?

[MargaritaChic]

My daughter is a newborn (about 10 weeks old). I want her to grow up happy, healthy, and knowing she is more than her illness.

Do you have any advice for a parent with a child who has CF?

What did your parents do right?

What did your parents do wrong?

What would be most important to you if you were raising a child with CF? What is important to you as an adult with CF?

I want my daughter to feel/be as normal as possible. I don't want her to think there is anything she cannot do. I don't want her or anyone else to feel sorry for her, etc. I want to do anything I possibly can to make her life full and rich in experiences.

Please, any advice is welcome.

Thank you!

 

[MargaritaChic]

My daughter is a newborn (about 10 weeks old). I want her to grow up happy, healthy, and knowing she is more than her illness.

Do you have any advice for a parent with a child who has CF?

What did your parents do right?

What did your parents do wrong?

What would be most important to you if you were raising a child with CF? What is important to you as an adult with CF?

I want my daughter to feel/be as normal as possible. I don't want her to think there is anything she cannot do. I don't want her or anyone else to feel sorry for her, etc. I want to do anything I possibly can to make her life full and rich in experiences.

Please, any advice is welcome.

Thank you!

 

[MargaritaChic]

My daughter is a newborn (about 10 weeks old). I want her to grow up happy, healthy, and knowing she is more than her illness.

Do you have any advice for a parent with a child who has CF?

What did your parents do right?

What did your parents do wrong?

What would be most important to you if you were raising a child with CF? What is important to you as an adult with CF?

I want my daughter to feel/be as normal as possible. I don't want her to think there is anything she cannot do. I don't want her or anyone else to feel sorry for her, etc. I want to do anything I possibly can to make her life full and rich in experiences.

Please, any advice is welcome.

Thank you!

 

[MargaritaChic]

My daughter is a newborn (about 10 weeks old). I want her to grow up happy, healthy, and knowing she is more than her illness.

Do you have any advice for a parent with a child who has CF?

What did your parents do right?

What did your parents do wrong?

What would be most important to you if you were raising a child with CF? What is important to you as an adult with CF?

I want my daughter to feel/be as normal as possible. I don't want her to think there is anything she cannot do. I don't want her or anyone else to feel sorry for her, etc. I want to do anything I possibly can to make her life full and rich in experiences.

Please, any advice is welcome.

Thank you!

 

[MargaritaChic]

My daughter is a newborn (about 10 weeks old). I want her to grow up happy, healthy, and knowing she is more than her illness.

Do you have any advice for a parent with a child who has CF?

What did your parents do right?

What did your parents do wrong?

What would be most important to you if you were raising a child with CF? What is important to you as an adult with CF?

I want my daughter to feel/be as normal as possible. I don't want her to think there is anything she cannot do. I don't want her or anyone else to feel sorry for her, etc. I want to do anything I possibly can to make her life full and rich in experiences.

Please, any advice is welcome.

Thank you!

 

[moxie1]

Things my parents did right

1) They brought me up in a Christian home and helped me realize that God is in control and there is a purpose in my life.
2) Instead of having me take a bunch of enzymes all of the time, they decided to control my digestive issues naturally. I ate a healthy, low-fat diet all of my life. I avoided enzymes until about 5 years ago, and have never had any weight issues. In fact, I had to go to Jenny Craig in high school because I was getting chubby.
3) They never made me feel limited by my cf---I could do anything.

The one thing they did wrong

1) I didn't go to a cf clinic for years and years because I had always had perfect check-ups. Finally, after starting to cough alot, they took me back, but I had lost some lung function from years of no therapy.

Advice I have for you
1) Listen to the doctors, but don't be afraid to look for alternatives. Modern medicine does not have all of the answers.
2) Realize that each case of cf is different.
3) As soon as it is age appropriate, encourage lots of exercise! I find that it is the best thing in the world for my lungs.

 

[moxie1]

Things my parents did right

1) They brought me up in a Christian home and helped me realize that God is in control and there is a purpose in my life.
2) Instead of having me take a bunch of enzymes all of the time, they decided to control my digestive issues naturally. I ate a healthy, low-fat diet all of my life. I avoided enzymes until about 5 years ago, and have never had any weight issues. In fact, I had to go to Jenny Craig in high school because I was getting chubby.
3) They never made me feel limited by my cf---I could do anything.

The one thing they did wrong

1) I didn't go to a cf clinic for years and years because I had always had perfect check-ups. Finally, after starting to cough alot, they took me back, but I had lost some lung function from years of no therapy.

Advice I have for you
1) Listen to the doctors, but don't be afraid to look for alternatives. Modern medicine does not have all of the answers.
2) Realize that each case of cf is different.
3) As soon as it is age appropriate, encourage lots of exercise! I find that it is the best thing in the world for my lungs.

 

[moxie1]

Things my parents did right

1) They brought me up in a Christian home and helped me realize that God is in control and there is a purpose in my life.
2) Instead of having me take a bunch of enzymes all of the time, they decided to control my digestive issues naturally. I ate a healthy, low-fat diet all of my life. I avoided enzymes until about 5 years ago, and have never had any weight issues. In fact, I had to go to Jenny Craig in high school because I was getting chubby.
3) They never made me feel limited by my cf---I could do anything.

The one thing they did wrong

1) I didn't go to a cf clinic for years and years because I had always had perfect check-ups. Finally, after starting to cough alot, they took me back, but I had lost some lung function from years of no therapy.

Advice I have for you
1) Listen to the doctors, but don't be afraid to look for alternatives. Modern medicine does not have all of the answers.
2) Realize that each case of cf is different.
3) As soon as it is age appropriate, encourage lots of exercise! I find that it is the best thing in the world for my lungs.

 

[moxie1]

Things my parents did right

1) They brought me up in a Christian home and helped me realize that God is in control and there is a purpose in my life.
2) Instead of having me take a bunch of enzymes all of the time, they decided to control my digestive issues naturally. I ate a healthy, low-fat diet all of my life. I avoided enzymes until about 5 years ago, and have never had any weight issues. In fact, I had to go to Jenny Craig in high school because I was getting chubby.
3) They never made me feel limited by my cf---I could do anything.

The one thing they did wrong

1) I didn't go to a cf clinic for years and years because I had always had perfect check-ups. Finally, after starting to cough alot, they took me back, but I had lost some lung function from years of no therapy.

Advice I have for you
1) Listen to the doctors, but don't be afraid to look for alternatives. Modern medicine does not have all of the answers.
2) Realize that each case of cf is different.
3) As soon as it is age appropriate, encourage lots of exercise! I find that it is the best thing in the world for my lungs.

 

[moxie1]

Things my parents did right

1) They brought me up in a Christian home and helped me realize that God is in control and there is a purpose in my life.
2) Instead of having me take a bunch of enzymes all of the time, they decided to control my digestive issues naturally. I ate a healthy, low-fat diet all of my life. I avoided enzymes until about 5 years ago, and have never had any weight issues. In fact, I had to go to Jenny Craig in high school because I was getting chubby.
3) They never made me feel limited by my cf---I could do anything.

The one thing they did wrong

1) I didn't go to a cf clinic for years and years because I had always had perfect check-ups. Finally, after starting to cough alot, they took me back, but I had lost some lung function from years of no therapy.

Advice I have for you
1) Listen to the doctors, but don't be afraid to look for alternatives. Modern medicine does not have all of the answers.
2) Realize that each case of cf is different.
3) As soon as it is age appropriate, encourage lots of exercise! I find that it is the best thing in the world for my lungs.

 

[bittyhorse23]

Treat your daughter like she does not have CF. Make sure she knows she can do anything she wants (except skip treatments of course). Start her early on doing her nebs and all so that when she is older she will be into a routine.

You have alot of advantages raising a child with CF now than my parents did when they dx'd me. I wish my mom had known just how important it was to do nebs even if I didn't feel like I needed one. The she could have been more diligent making sure I did them. That is the only thing I regret from growing up. I didn't really start doing my nebs faithfully until I was hospitalized when I was 18. Alot of my lung damage could have been prevented I am sure. BUT I was also not truthful with my mom and DR all the time and told them that yes I did do them. (By NO means am I blaming my mom for my poor lung functions that is ALL ME!!!!!)

You have already done a great thing by joining this site.

What is important to me as an adult w/CF is that I want to do what I love to do. But that is not always easy or possible now that my lung functions are lower.

And stress exercising with her! It is great for us to exercise. Even if she isn't into the "normal" sports see if she likes horseback riding, ice skating, tennis, gymnastics, dance. Any of those will really help keep her healthy. I played T-ball and soccer when I was younger and then rode horses until college. I felt great when I did all that!

Oh and always leave the lines of communication open with her to talk to you about CF. Educate her, and let her know that she can talk to you about anything. That is the one thing I am truly glad about with my mom. I can tell her anything (just about) with my CF and we can talk and educate each other. She is my mom so some things I leave out because I don't want her to feel bad.

Ok I think that is all I have for now. Hope it helped a little and wasn't toally confusing! <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0">

 

[bittyhorse23]

Treat your daughter like she does not have CF. Make sure she knows she can do anything she wants (except skip treatments of course). Start her early on doing her nebs and all so that when she is older she will be into a routine.

You have alot of advantages raising a child with CF now than my parents did when they dx'd me. I wish my mom had known just how important it was to do nebs even if I didn't feel like I needed one. The she could have been more diligent making sure I did them. That is the only thing I regret from growing up. I didn't really start doing my nebs faithfully until I was hospitalized when I was 18. Alot of my lung damage could have been prevented I am sure. BUT I was also not truthful with my mom and DR all the time and told them that yes I did do them. (By NO means am I blaming my mom for my poor lung functions that is ALL ME!!!!!)

You have already done a great thing by joining this site.

What is important to me as an adult w/CF is that I want to do what I love to do. But that is not always easy or possible now that my lung functions are lower.

And stress exercising with her! It is great for us to exercise. Even if she isn't into the "normal" sports see if she likes horseback riding, ice skating, tennis, gymnastics, dance. Any of those will really help keep her healthy. I played T-ball and soccer when I was younger and then rode horses until college. I felt great when I did all that!

Oh and always leave the lines of communication open with her to talk to you about CF. Educate her, and let her know that she can talk to you about anything. That is the one thing I am truly glad about with my mom. I can tell her anything (just about) with my CF and we can talk and educate each other. She is my mom so some things I leave out because I don't want her to feel bad.

Ok I think that is all I have for now. Hope it helped a little and wasn't toally confusing! <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0">

 

[bittyhorse23]

Treat your daughter like she does not have CF. Make sure she knows she can do anything she wants (except skip treatments of course). Start her early on doing her nebs and all so that when she is older she will be into a routine.

You have alot of advantages raising a child with CF now than my parents did when they dx'd me. I wish my mom had known just how important it was to do nebs even if I didn't feel like I needed one. The she could have been more diligent making sure I did them. That is the only thing I regret from growing up. I didn't really start doing my nebs faithfully until I was hospitalized when I was 18. Alot of my lung damage could have been prevented I am sure. BUT I was also not truthful with my mom and DR all the time and told them that yes I did do them. (By NO means am I blaming my mom for my poor lung functions that is ALL ME!!!!!)

You have already done a great thing by joining this site.

What is important to me as an adult w/CF is that I want to do what I love to do. But that is not always easy or possible now that my lung functions are lower.

And stress exercising with her! It is great for us to exercise. Even if she isn't into the "normal" sports see if she likes horseback riding, ice skating, tennis, gymnastics, dance. Any of those will really help keep her healthy. I played T-ball and soccer when I was younger and then rode horses until college. I felt great when I did all that!

Oh and always leave the lines of communication open with her to talk to you about CF. Educate her, and let her know that she can talk to you about anything. That is the one thing I am truly glad about with my mom. I can tell her anything (just about) with my CF and we can talk and educate each other. She is my mom so some things I leave out because I don't want her to feel bad.

Ok I think that is all I have for now. Hope it helped a little and wasn't toally confusing! <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0">

 

[bittyhorse23]

Treat your daughter like she does not have CF. Make sure she knows she can do anything she wants (except skip treatments of course). Start her early on doing her nebs and all so that when she is older she will be into a routine.

You have alot of advantages raising a child with CF now than my parents did when they dx'd me. I wish my mom had known just how important it was to do nebs even if I didn't feel like I needed one. The she could have been more diligent making sure I did them. That is the only thing I regret from growing up. I didn't really start doing my nebs faithfully until I was hospitalized when I was 18. Alot of my lung damage could have been prevented I am sure. BUT I was also not truthful with my mom and DR all the time and told them that yes I did do them. (By NO means am I blaming my mom for my poor lung functions that is ALL ME!!!!!)

You have already done a great thing by joining this site.

What is important to me as an adult w/CF is that I want to do what I love to do. But that is not always easy or possible now that my lung functions are lower.

And stress exercising with her! It is great for us to exercise. Even if she isn't into the "normal" sports see if she likes horseback riding, ice skating, tennis, gymnastics, dance. Any of those will really help keep her healthy. I played T-ball and soccer when I was younger and then rode horses until college. I felt great when I did all that!

Oh and always leave the lines of communication open with her to talk to you about CF. Educate her, and let her know that she can talk to you about anything. That is the one thing I am truly glad about with my mom. I can tell her anything (just about) with my CF and we can talk and educate each other. She is my mom so some things I leave out because I don't want her to feel bad.

Ok I think that is all I have for now. Hope it helped a little and wasn't toally confusing! <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0">

 

[bittyhorse23]

Treat your daughter like she does not have CF. Make sure she knows she can do anything she wants (except skip treatments of course). Start her early on doing her nebs and all so that when she is older she will be into a routine.

You have alot of advantages raising a child with CF now than my parents did when they dx'd me. I wish my mom had known just how important it was to do nebs even if I didn't feel like I needed one. The she could have been more diligent making sure I did them. That is the only thing I regret from growing up. I didn't really start doing my nebs faithfully until I was hospitalized when I was 18. Alot of my lung damage could have been prevented I am sure. BUT I was also not truthful with my mom and DR all the time and told them that yes I did do them. (By NO means am I blaming my mom for my poor lung functions that is ALL ME!!!!!)

You have already done a great thing by joining this site.

What is important to me as an adult w/CF is that I want to do what I love to do. But that is not always easy or possible now that my lung functions are lower.

And stress exercising with her! It is great for us to exercise. Even if she isn't into the "normal" sports see if she likes horseback riding, ice skating, tennis, gymnastics, dance. Any of those will really help keep her healthy. I played T-ball and soccer when I was younger and then rode horses until college. I felt great when I did all that!

Oh and always leave the lines of communication open with her to talk to you about CF. Educate her, and let her know that she can talk to you about anything. That is the one thing I am truly glad about with my mom. I can tell her anything (just about) with my CF and we can talk and educate each other. She is my mom so some things I leave out because I don't want her to feel bad.

Ok I think that is all I have for now. Hope it helped a little and wasn't toally confusing! <img src="i/expressions/face-icon-small-smile.gif" border="0">

<img src="i/expressions/heart.gif" border="0">

 

[Ratatosk]

As a parent of a cfer, one thing I regret doing when DS was a baby was worrying too much and focusing to much on the what ifs. I realize it's easier said than done, but I wish I would've stepped back and enjoyed more of his milestones.

He spent the first 6 weeks of life in the hospital and at first I was so worried that he was going to get sick and end up in the hospital again.

 

[Ratatosk]

As a parent of a cfer, one thing I regret doing when DS was a baby was worrying too much and focusing to much on the what ifs. I realize it's easier said than done, but I wish I would've stepped back and enjoyed more of his milestones.

He spent the first 6 weeks of life in the hospital and at first I was so worried that he was going to get sick and end up in the hospital again.

 

[Ratatosk]

As a parent of a cfer, one thing I regret doing when DS was a baby was worrying too much and focusing to much on the what ifs. I realize it's easier said than done, but I wish I would've stepped back and enjoyed more of his milestones.

He spent the first 6 weeks of life in the hospital and at first I was so worried that he was going to get sick and end up in the hospital again.

 

[Ratatosk]

As a parent of a cfer, one thing I regret doing when DS was a baby was worrying too much and focusing to much on the what ifs. I realize it's easier said than done, but I wish I would've stepped back and enjoyed more of his milestones.

He spent the first 6 weeks of life in the hospital and at first I was so worried that he was going to get sick and end up in the hospital again.

 

[Ratatosk]

As a parent of a cfer, one thing I regret doing when DS was a baby was worrying too much and focusing to much on the what ifs. I realize it's easier said than done, but I wish I would've stepped back and enjoyed more of his milestones.

He spent the first 6 weeks of life in the hospital and at first I was so worried that he was going to get sick and end up in the hospital again.