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Need some encouragement from the adult/child community

J

Jane

Digital opinion leader
Oh Catherine it's not at all silly. We all remember how we felt after the diagnosis. Please ask us anything anytime!

This forum is a godsend for parents of CFers because there is so much information. BUT all that information can get overwhelming. Take it slow. Read only as much as you can handle. I found that I needed to step away from the support group I was in because I couldn't relate to (or didn't want to hear about) the experiences of the parents with older children whose disease had progressed. At the time I just wanted to know I was not alone.

As time went on and I had more questions, I found what I needed here. Its a wonderful family!

Ok, now to answer your question...

Like Liza said about her girls, my boys have been "normal" kids for the most part. They have been in public school, participated in town and school sports and boy scouts. They have had good friends, gone to camp, sleep overs, family vacations and proms. Last year Josh was captain of his tennis team and achieved his Eagle Scout rank! Jesse just started his freshman year of high school and Josh just started college.

Are there things they couldn't do? yes, there are interruptions because of their illness, but overall they've been pretty fortunate.

Did you see this thread that Lance started? All good things! <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=48941&enterthread=y
">http://www.cysticfibrosis.com/...d=48941&enterthread=y
</a>
My best wishes to you and your baby!
 
J

Jane

Digital opinion leader
Oh Catherine it's not at all silly. We all remember how we felt after the diagnosis. Please ask us anything anytime!

This forum is a godsend for parents of CFers because there is so much information. BUT all that information can get overwhelming. Take it slow. Read only as much as you can handle. I found that I needed to step away from the support group I was in because I couldn't relate to (or didn't want to hear about) the experiences of the parents with older children whose disease had progressed. At the time I just wanted to know I was not alone.

As time went on and I had more questions, I found what I needed here. Its a wonderful family!

Ok, now to answer your question...

Like Liza said about her girls, my boys have been "normal" kids for the most part. They have been in public school, participated in town and school sports and boy scouts. They have had good friends, gone to camp, sleep overs, family vacations and proms. Last year Josh was captain of his tennis team and achieved his Eagle Scout rank! Jesse just started his freshman year of high school and Josh just started college.

Are there things they couldn't do? yes, there are interruptions because of their illness, but overall they've been pretty fortunate.

Did you see this thread that Lance started? All good things! <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=48941&enterthread=y
">http://www.cysticfibrosis.com/...d=48941&enterthread=y
</a>
My best wishes to you and your baby!
 
J

Jane

Digital opinion leader
Oh Catherine it's not at all silly. We all remember how we felt after the diagnosis. Please ask us anything anytime!

This forum is a godsend for parents of CFers because there is so much information. BUT all that information can get overwhelming. Take it slow. Read only as much as you can handle. I found that I needed to step away from the support group I was in because I couldn't relate to (or didn't want to hear about) the experiences of the parents with older children whose disease had progressed. At the time I just wanted to know I was not alone.

As time went on and I had more questions, I found what I needed here. Its a wonderful family!

Ok, now to answer your question...

Like Liza said about her girls, my boys have been "normal" kids for the most part. They have been in public school, participated in town and school sports and boy scouts. They have had good friends, gone to camp, sleep overs, family vacations and proms. Last year Josh was captain of his tennis team and achieved his Eagle Scout rank! Jesse just started his freshman year of high school and Josh just started college.

Are there things they couldn't do? yes, there are interruptions because of their illness, but overall they've been pretty fortunate.

Did you see this thread that Lance started? All good things! <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=48941&enterthread=y
">http://www.cysticfibrosis.com/...d=48941&enterthread=y
</a>
My best wishes to you and your baby!
 
J

Jane

Digital opinion leader
Oh Catherine it's not at all silly. We all remember how we felt after the diagnosis. Please ask us anything anytime!

This forum is a godsend for parents of CFers because there is so much information. BUT all that information can get overwhelming. Take it slow. Read only as much as you can handle. I found that I needed to step away from the support group I was in because I couldn't relate to (or didn't want to hear about) the experiences of the parents with older children whose disease had progressed. At the time I just wanted to know I was not alone.

As time went on and I had more questions, I found what I needed here. Its a wonderful family!

Ok, now to answer your question...

Like Liza said about her girls, my boys have been "normal" kids for the most part. They have been in public school, participated in town and school sports and boy scouts. They have had good friends, gone to camp, sleep overs, family vacations and proms. Last year Josh was captain of his tennis team and achieved his Eagle Scout rank! Jesse just started his freshman year of high school and Josh just started college.

Are there things they couldn't do? yes, there are interruptions because of their illness, but overall they've been pretty fortunate.

Did you see this thread that Lance started? All good things! <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=48941&enterthread=y
">http://www.cysticfibrosis.com/...d=48941&enterthread=y
</a>
My best wishes to you and your baby!
 
J

Jane

Digital opinion leader
Oh Catherine it's not at all silly. We all remember how we felt after the diagnosis. Please ask us anything anytime!
<br />
<br />This forum is a godsend for parents of CFers because there is so much information. BUT all that information can get overwhelming. Take it slow. Read only as much as you can handle. I found that I needed to step away from the support group I was in because I couldn't relate to (or didn't want to hear about) the experiences of the parents with older children whose disease had progressed. At the time I just wanted to know I was not alone.
<br />
<br />As time went on and I had more questions, I found what I needed here. Its a wonderful family!
<br />
<br />Ok, now to answer your question...
<br />
<br />Like Liza said about her girls, my boys have been "normal" kids for the most part. They have been in public school, participated in town and school sports and boy scouts. They have had good friends, gone to camp, sleep overs, family vacations and proms. Last year Josh was captain of his tennis team and achieved his Eagle Scout rank! Jesse just started his freshman year of high school and Josh just started college.
<br />
<br />Are there things they couldn't do? yes, there are interruptions because of their illness, but overall they've been pretty fortunate.
<br />
<br />Did you see this thread that Lance started? All good things! <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/forums/messageview.cfm?catid=5&threadid=48941&enterthread=y
">http://www.cysticfibrosis.com/...d=48941&enterthread=y
</a><br />
<br />My best wishes to you and your baby!
 
M

melx

New member
Hello Catherine,
It's easy for CF to mess up any sort of balance and hope. But truly there is so much hope and so many of us are living full productive lives.
I am 40. diagnosed at 3. my parents always encouraged me to do what I wanted but also made sure I did not push myself too too hard. I lived a fairly healthy childhood, early adulthood and even adulthood. I did not receive iv's until I was 37. There have always been the cf issues (some of them seriously odd)... but I get through with support & love from family, self determination and strength from up above.
I graduated college with a degree in Music therapy. My principle instrument of study, believe it or not, was Voice. Singing has been one of my most important therapies my entire life. I sang all over the country with my college choirs and studied classical voice. I even have given some intense recitals. Tough stuff but I did it! Once I graduated, I practiced professional music therapy for over 15 years... teaching others the importance of music for health & wellness. I have lived a very very full life.
I was married at 30... have a busy family life (no kids - but still busy). And although the CF has decided to show it's monster like qualities lately, I am still fighting and I try to recognize all that I still can do.
It is a balancing act... knowing what CF is.... and what we can do despite it.
Hipppocrates (the father of medicine) said he would rather know what sort of person has a disease than what disease the person has. That has always resounded in me. Strong message.
Teach Philip to do what he loves,teach him determination, mental strength and balance. Let him enjoy life and balance it with the responsibilites of Cf.
Take good care & keep your chin up!
 
M

melx

New member
Hello Catherine,
It's easy for CF to mess up any sort of balance and hope. But truly there is so much hope and so many of us are living full productive lives.
I am 40. diagnosed at 3. my parents always encouraged me to do what I wanted but also made sure I did not push myself too too hard. I lived a fairly healthy childhood, early adulthood and even adulthood. I did not receive iv's until I was 37. There have always been the cf issues (some of them seriously odd)... but I get through with support & love from family, self determination and strength from up above.
I graduated college with a degree in Music therapy. My principle instrument of study, believe it or not, was Voice. Singing has been one of my most important therapies my entire life. I sang all over the country with my college choirs and studied classical voice. I even have given some intense recitals. Tough stuff but I did it! Once I graduated, I practiced professional music therapy for over 15 years... teaching others the importance of music for health & wellness. I have lived a very very full life.
I was married at 30... have a busy family life (no kids - but still busy). And although the CF has decided to show it's monster like qualities lately, I am still fighting and I try to recognize all that I still can do.
It is a balancing act... knowing what CF is.... and what we can do despite it.
Hipppocrates (the father of medicine) said he would rather know what sort of person has a disease than what disease the person has. That has always resounded in me. Strong message.
Teach Philip to do what he loves,teach him determination, mental strength and balance. Let him enjoy life and balance it with the responsibilites of Cf.
Take good care & keep your chin up!
 
M

melx

New member
Hello Catherine,
It's easy for CF to mess up any sort of balance and hope. But truly there is so much hope and so many of us are living full productive lives.
I am 40. diagnosed at 3. my parents always encouraged me to do what I wanted but also made sure I did not push myself too too hard. I lived a fairly healthy childhood, early adulthood and even adulthood. I did not receive iv's until I was 37. There have always been the cf issues (some of them seriously odd)... but I get through with support & love from family, self determination and strength from up above.
I graduated college with a degree in Music therapy. My principle instrument of study, believe it or not, was Voice. Singing has been one of my most important therapies my entire life. I sang all over the country with my college choirs and studied classical voice. I even have given some intense recitals. Tough stuff but I did it! Once I graduated, I practiced professional music therapy for over 15 years... teaching others the importance of music for health & wellness. I have lived a very very full life.
I was married at 30... have a busy family life (no kids - but still busy). And although the CF has decided to show it's monster like qualities lately, I am still fighting and I try to recognize all that I still can do.
It is a balancing act... knowing what CF is.... and what we can do despite it.
Hipppocrates (the father of medicine) said he would rather know what sort of person has a disease than what disease the person has. That has always resounded in me. Strong message.
Teach Philip to do what he loves,teach him determination, mental strength and balance. Let him enjoy life and balance it with the responsibilites of Cf.
Take good care & keep your chin up!
 
M

melx

New member
Hello Catherine,
It's easy for CF to mess up any sort of balance and hope. But truly there is so much hope and so many of us are living full productive lives.
I am 40. diagnosed at 3. my parents always encouraged me to do what I wanted but also made sure I did not push myself too too hard. I lived a fairly healthy childhood, early adulthood and even adulthood. I did not receive iv's until I was 37. There have always been the cf issues (some of them seriously odd)... but I get through with support & love from family, self determination and strength from up above.
I graduated college with a degree in Music therapy. My principle instrument of study, believe it or not, was Voice. Singing has been one of my most important therapies my entire life. I sang all over the country with my college choirs and studied classical voice. I even have given some intense recitals. Tough stuff but I did it! Once I graduated, I practiced professional music therapy for over 15 years... teaching others the importance of music for health & wellness. I have lived a very very full life.
I was married at 30... have a busy family life (no kids - but still busy). And although the CF has decided to show it's monster like qualities lately, I am still fighting and I try to recognize all that I still can do.
It is a balancing act... knowing what CF is.... and what we can do despite it.
Hipppocrates (the father of medicine) said he would rather know what sort of person has a disease than what disease the person has. That has always resounded in me. Strong message.
Teach Philip to do what he loves,teach him determination, mental strength and balance. Let him enjoy life and balance it with the responsibilites of Cf.
Take good care & keep your chin up!
 
M

melx

New member
Hello Catherine,
<br /> It's easy for CF to mess up any sort of balance and hope. But truly there is so much hope and so many of us are living full productive lives.
<br /> I am 40. diagnosed at 3. my parents always encouraged me to do what I wanted but also made sure I did not push myself too too hard. I lived a fairly healthy childhood, early adulthood and even adulthood. I did not receive iv's until I was 37. There have always been the cf issues (some of them seriously odd)... but I get through with support & love from family, self determination and strength from up above.
<br /> I graduated college with a degree in Music therapy. My principle instrument of study, believe it or not, was Voice. Singing has been one of my most important therapies my entire life. I sang all over the country with my college choirs and studied classical voice. I even have given some intense recitals. Tough stuff but I did it! Once I graduated, I practiced professional music therapy for over 15 years... teaching others the importance of music for health & wellness. I have lived a very very full life.
<br /> I was married at 30... have a busy family life (no kids - but still busy). And although the CF has decided to show it's monster like qualities lately, I am still fighting and I try to recognize all that I still can do.
<br /> It is a balancing act... knowing what CF is.... and what we can do despite it.
<br /> Hipppocrates (the father of medicine) said he would rather know what sort of person has a disease than what disease the person has. That has always resounded in me. Strong message.
<br /> Teach Philip to do what he loves,teach him determination, mental strength and balance. Let him enjoy life and balance it with the responsibilites of Cf.
<br /> Take good care & keep your chin up!
 
J

Jeana

New member
Hi! I'm a 33-year-old with CF. I work full time as a middle school teacher. I am married to a wonderful, supportive husband and have two beautiful sons, one through adoption and one through pregnancy. I do treatments to maintain my health, but I still have time to live life!
Hugs! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jeana

New member
Hi! I'm a 33-year-old with CF. I work full time as a middle school teacher. I am married to a wonderful, supportive husband and have two beautiful sons, one through adoption and one through pregnancy. I do treatments to maintain my health, but I still have time to live life!
Hugs! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jeana

New member
Hi! I'm a 33-year-old with CF. I work full time as a middle school teacher. I am married to a wonderful, supportive husband and have two beautiful sons, one through adoption and one through pregnancy. I do treatments to maintain my health, but I still have time to live life!
Hugs! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jeana

New member
Hi! I'm a 33-year-old with CF. I work full time as a middle school teacher. I am married to a wonderful, supportive husband and have two beautiful sons, one through adoption and one through pregnancy. I do treatments to maintain my health, but I still have time to live life!
Hugs! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jeana

New member
Hi! I'm a 33-year-old with CF. I work full time as a middle school teacher. I am married to a wonderful, supportive husband and have two beautiful sons, one through adoption and one through pregnancy. I do treatments to maintain my health, but I still have time to live life!
<br />Hugs! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
 
B

babyluke

New member
Our son is only two, but I just wanted to "ditto" what some of the others have said. Two years ago I was in your shoes and had a three month old just diagnosed and I found this website. The more I read, the more freaked out I became. I did not understand everything I was reading, but I was sure that I was missing something with Luke, I was scared that he was "sicker" than the doctors were telling me, etc. I found it was helpful not to read everything. Everyone's journey with CF is so different. If you have a question, by all means ask it--I can almost guarantee that someone on this site will know the answer and you will find this help and support invaluable!!! But don't get too overwhelmed by too many stories. As one of my wise college professors once said--Everybody knows somebody who...(fill in the blank). You can hear a million people's stories, and yours will still be different so don't stress about that too much! I also find it really helpful to "trespass" over here in the adult forums and hear about all of the things that the adult CFers are able to do. I know they have to struggle as they deal with CF, but it still inspires me so much to read how they keep going and keep fighting and keep reaching their goals.
 
B

babyluke

New member
Our son is only two, but I just wanted to "ditto" what some of the others have said. Two years ago I was in your shoes and had a three month old just diagnosed and I found this website. The more I read, the more freaked out I became. I did not understand everything I was reading, but I was sure that I was missing something with Luke, I was scared that he was "sicker" than the doctors were telling me, etc. I found it was helpful not to read everything. Everyone's journey with CF is so different. If you have a question, by all means ask it--I can almost guarantee that someone on this site will know the answer and you will find this help and support invaluable!!! But don't get too overwhelmed by too many stories. As one of my wise college professors once said--Everybody knows somebody who...(fill in the blank). You can hear a million people's stories, and yours will still be different so don't stress about that too much! I also find it really helpful to "trespass" over here in the adult forums and hear about all of the things that the adult CFers are able to do. I know they have to struggle as they deal with CF, but it still inspires me so much to read how they keep going and keep fighting and keep reaching their goals.
 
B

babyluke

New member
Our son is only two, but I just wanted to "ditto" what some of the others have said. Two years ago I was in your shoes and had a three month old just diagnosed and I found this website. The more I read, the more freaked out I became. I did not understand everything I was reading, but I was sure that I was missing something with Luke, I was scared that he was "sicker" than the doctors were telling me, etc. I found it was helpful not to read everything. Everyone's journey with CF is so different. If you have a question, by all means ask it--I can almost guarantee that someone on this site will know the answer and you will find this help and support invaluable!!! But don't get too overwhelmed by too many stories. As one of my wise college professors once said--Everybody knows somebody who...(fill in the blank). You can hear a million people's stories, and yours will still be different so don't stress about that too much! I also find it really helpful to "trespass" over here in the adult forums and hear about all of the things that the adult CFers are able to do. I know they have to struggle as they deal with CF, but it still inspires me so much to read how they keep going and keep fighting and keep reaching their goals.
 
B

babyluke

New member
Our son is only two, but I just wanted to "ditto" what some of the others have said. Two years ago I was in your shoes and had a three month old just diagnosed and I found this website. The more I read, the more freaked out I became. I did not understand everything I was reading, but I was sure that I was missing something with Luke, I was scared that he was "sicker" than the doctors were telling me, etc. I found it was helpful not to read everything. Everyone's journey with CF is so different. If you have a question, by all means ask it--I can almost guarantee that someone on this site will know the answer and you will find this help and support invaluable!!! But don't get too overwhelmed by too many stories. As one of my wise college professors once said--Everybody knows somebody who...(fill in the blank). You can hear a million people's stories, and yours will still be different so don't stress about that too much! I also find it really helpful to "trespass" over here in the adult forums and hear about all of the things that the adult CFers are able to do. I know they have to struggle as they deal with CF, but it still inspires me so much to read how they keep going and keep fighting and keep reaching their goals.
 
B

babyluke

New member
Our son is only two, but I just wanted to "ditto" what some of the others have said. Two years ago I was in your shoes and had a three month old just diagnosed and I found this website. The more I read, the more freaked out I became. I did not understand everything I was reading, but I was sure that I was missing something with Luke, I was scared that he was "sicker" than the doctors were telling me, etc. I found it was helpful not to read everything. Everyone's journey with CF is so different. If you have a question, by all means ask it--I can almost guarantee that someone on this site will know the answer and you will find this help and support invaluable!!! But don't get too overwhelmed by too many stories. As one of my wise college professors once said--Everybody knows somebody who...(fill in the blank). You can hear a million people's stories, and yours will still be different so don't stress about that too much! I also find it really helpful to "trespass" over here in the adult forums and hear about all of the things that the adult CFers are able to do. I know they have to struggle as they deal with CF, but it still inspires me so much to read how they keep going and keep fighting and keep reaching their goals.
 
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