A Short Walk on the Road Less Traveled

djbowler

New member
Very nicely done. I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.

Anyway, I remember when the phone call came for our family. I was sitting at the kitchen table and about to eat a stouffers chicken alfredo frozen meal when the phone rang. On the other end was Dean's pediatrician(which I KNEW was bad, because doctors are always to busy to call with good news(they have a staff member do it). He informed me that the results for Dean's sweat test were WAY off the charts and that he would have a CF. Knowing absolutely nothing about CF, exect that it was probably very bad, I inquired as to the ramifications for Dean and our family. When I finally hung up the phone I sat and looked at the now cold plastic container of chicken alfredo and became nauseated. What followed was the most intense emotional ass kicking that I would ever experience(so far, thank God) in my life. But you know what? Life goes on. It may still suck now and then, but it goes on. What you don't realize in that early dawn of the disease, is that there will be happiness in your future. And that you can cope with the crap that will come your way. And I think people with special needs children live move fulfilling and deeper lives than parents of normal healthy children. Because it teaches you to live in the moment. Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.

And ironically, my little Dean has turned out to be the better athlete than his none affected older brother Jay! Go figure. That's just God's way of messing with your mind. He's funny that way. Just when you think your child will struggle all his life with this dibilitating disease, he picks up a football and looks like Tom Brady from the Patriots.
 

djbowler

New member
Very nicely done. I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.

Anyway, I remember when the phone call came for our family. I was sitting at the kitchen table and about to eat a stouffers chicken alfredo frozen meal when the phone rang. On the other end was Dean's pediatrician(which I KNEW was bad, because doctors are always to busy to call with good news(they have a staff member do it). He informed me that the results for Dean's sweat test were WAY off the charts and that he would have a CF. Knowing absolutely nothing about CF, exect that it was probably very bad, I inquired as to the ramifications for Dean and our family. When I finally hung up the phone I sat and looked at the now cold plastic container of chicken alfredo and became nauseated. What followed was the most intense emotional ass kicking that I would ever experience(so far, thank God) in my life. But you know what? Life goes on. It may still suck now and then, but it goes on. What you don't realize in that early dawn of the disease, is that there will be happiness in your future. And that you can cope with the crap that will come your way. And I think people with special needs children live move fulfilling and deeper lives than parents of normal healthy children. Because it teaches you to live in the moment. Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.

And ironically, my little Dean has turned out to be the better athlete than his none affected older brother Jay! Go figure. That's just God's way of messing with your mind. He's funny that way. Just when you think your child will struggle all his life with this dibilitating disease, he picks up a football and looks like Tom Brady from the Patriots.
 

djbowler

New member
Very nicely done. I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.

Anyway, I remember when the phone call came for our family. I was sitting at the kitchen table and about to eat a stouffers chicken alfredo frozen meal when the phone rang. On the other end was Dean's pediatrician(which I KNEW was bad, because doctors are always to busy to call with good news(they have a staff member do it). He informed me that the results for Dean's sweat test were WAY off the charts and that he would have a CF. Knowing absolutely nothing about CF, exect that it was probably very bad, I inquired as to the ramifications for Dean and our family. When I finally hung up the phone I sat and looked at the now cold plastic container of chicken alfredo and became nauseated. What followed was the most intense emotional ass kicking that I would ever experience(so far, thank God) in my life. But you know what? Life goes on. It may still suck now and then, but it goes on. What you don't realize in that early dawn of the disease, is that there will be happiness in your future. And that you can cope with the crap that will come your way. And I think people with special needs children live move fulfilling and deeper lives than parents of normal healthy children. Because it teaches you to live in the moment. Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.

And ironically, my little Dean has turned out to be the better athlete than his none affected older brother Jay! Go figure. That's just God's way of messing with your mind. He's funny that way. Just when you think your child will struggle all his life with this dibilitating disease, he picks up a football and looks like Tom Brady from the Patriots.
 

djbowler

New member
Very nicely done. I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.

Anyway, I remember when the phone call came for our family. I was sitting at the kitchen table and about to eat a stouffers chicken alfredo frozen meal when the phone rang. On the other end was Dean's pediatrician(which I KNEW was bad, because doctors are always to busy to call with good news(they have a staff member do it). He informed me that the results for Dean's sweat test were WAY off the charts and that he would have a CF. Knowing absolutely nothing about CF, exect that it was probably very bad, I inquired as to the ramifications for Dean and our family. When I finally hung up the phone I sat and looked at the now cold plastic container of chicken alfredo and became nauseated. What followed was the most intense emotional ass kicking that I would ever experience(so far, thank God) in my life. But you know what? Life goes on. It may still suck now and then, but it goes on. What you don't realize in that early dawn of the disease, is that there will be happiness in your future. And that you can cope with the crap that will come your way. And I think people with special needs children live move fulfilling and deeper lives than parents of normal healthy children. Because it teaches you to live in the moment. Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.

And ironically, my little Dean has turned out to be the better athlete than his none affected older brother Jay! Go figure. That's just God's way of messing with your mind. He's funny that way. Just when you think your child will struggle all his life with this dibilitating disease, he picks up a football and looks like Tom Brady from the Patriots.
 

djbowler

New member
Very nicely done. I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.
<br />
<br /> Anyway, I remember when the phone call came for our family. I was sitting at the kitchen table and about to eat a stouffers chicken alfredo frozen meal when the phone rang. On the other end was Dean's pediatrician(which I KNEW was bad, because doctors are always to busy to call with good news(they have a staff member do it). He informed me that the results for Dean's sweat test were WAY off the charts and that he would have a CF. Knowing absolutely nothing about CF, exect that it was probably very bad, I inquired as to the ramifications for Dean and our family. When I finally hung up the phone I sat and looked at the now cold plastic container of chicken alfredo and became nauseated. What followed was the most intense emotional ass kicking that I would ever experience(so far, thank God) in my life. But you know what? Life goes on. It may still suck now and then, but it goes on. What you don't realize in that early dawn of the disease, is that there will be happiness in your future. And that you can cope with the crap that will come your way. And I think people with special needs children live move fulfilling and deeper lives than parents of normal healthy children. Because it teaches you to live in the moment. Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.
<br />
<br /> And ironically, my little Dean has turned out to be the better athlete than his none affected older brother Jay! Go figure. That's just God's way of messing with your mind. He's funny that way. Just when you think your child will struggle all his life with this dibilitating disease, he picks up a football and looks like Tom Brady from the Patriots.
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>djbowler</b></i>
I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.
</end quote></div>

I find it interesting that you see the Holland story depressing. I have always found it inspiring. What I got from it was the idea that you take what life gives you and learn that there is beauty in all of it, even if it is not what you expected. What is it about the story you don't like?
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>djbowler</b></i>
I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.
</end quote></div>

I find it interesting that you see the Holland story depressing. I have always found it inspiring. What I got from it was the idea that you take what life gives you and learn that there is beauty in all of it, even if it is not what you expected. What is it about the story you don't like?
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>djbowler</b></i>
I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.
</end quote></div>

I find it interesting that you see the Holland story depressing. I have always found it inspiring. What I got from it was the idea that you take what life gives you and learn that there is beauty in all of it, even if it is not what you expected. What is it about the story you don't like?
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>djbowler</b></i>
I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.
</end quote>

I find it interesting that you see the Holland story depressing. I have always found it inspiring. What I got from it was the idea that you take what life gives you and learn that there is beauty in all of it, even if it is not what you expected. What is it about the story you don't like?
 
K

kaylee04cassidy08

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>djbowler</b></i>
<br />I always used to joke that whatever you do, don't read that depressing story about wind mills and Holland(you know, the one about the family that has a CF diagnosis and their expectations are for Paris and the Eifel Tower but they have to accept Holland and wind mills). There should be a dire warning to parents when they get the first diagnosis to absolutely NOT read depressing material.
<br /></end quote>
<br />
<br />I find it interesting that you see the Holland story depressing. I have always found it inspiring. What I got from it was the idea that you take what life gives you and learn that there is beauty in all of it, even if it is not what you expected. What is it about the story you don't like?
 

taty05

New member
I guess for most of us, this journey starts with a phone call, when I got mine, I had already forget that three days before my son have had a sweat test done. They called and said that the numbers were high and they needed to re-testing him and schedule the rest of my children to have the sweat test done. I still didn't even know what CF was about, o boy, I knew nothing about it. Two days later, there I was with my entire clan, sweat testing them ALL AT ONCE!!! Three more days went by, and I keep that in the back of my mind, I was saying to myself that probably the first test was wrong, that no news yet was good news. Then the worst call of my life came along, in the other end was our now CF nurse, and with a softly voice she said that we needed to come to the office. She confirmed that Jesus has CF and we need to do further testing on him, but not only that, my then 7 y/o daughter's first sweat test's numbers were also high and she needed to have one more sweat test, this was to confirmed that I was not only dealing with one cfer but two or maybe three, my then 3 y/o son didn't sweat. He has have 4 sweat tests done with no success.
I do too find the Holland story very inspirational to me, every time that I feel down I get it out and read it over and over. I'm still in denial, and I still hope they are gonna said; it was a misdiagnosed,I do not know what the future will bring to us, but I thank good every morning that it was CF and not something worse, there is a lot of kids and parents out there that suffer with severe cases of CF or even worse, more dramatic disease. My prayers to all of them and to you too, my partners in this journey.

Sorry this was a very long one, I really need to be heard.
THANKS.
 

taty05

New member
I guess for most of us, this journey starts with a phone call, when I got mine, I had already forget that three days before my son have had a sweat test done. They called and said that the numbers were high and they needed to re-testing him and schedule the rest of my children to have the sweat test done. I still didn't even know what CF was about, o boy, I knew nothing about it. Two days later, there I was with my entire clan, sweat testing them ALL AT ONCE!!! Three more days went by, and I keep that in the back of my mind, I was saying to myself that probably the first test was wrong, that no news yet was good news. Then the worst call of my life came along, in the other end was our now CF nurse, and with a softly voice she said that we needed to come to the office. She confirmed that Jesus has CF and we need to do further testing on him, but not only that, my then 7 y/o daughter's first sweat test's numbers were also high and she needed to have one more sweat test, this was to confirmed that I was not only dealing with one cfer but two or maybe three, my then 3 y/o son didn't sweat. He has have 4 sweat tests done with no success.
I do too find the Holland story very inspirational to me, every time that I feel down I get it out and read it over and over. I'm still in denial, and I still hope they are gonna said; it was a misdiagnosed,I do not know what the future will bring to us, but I thank good every morning that it was CF and not something worse, there is a lot of kids and parents out there that suffer with severe cases of CF or even worse, more dramatic disease. My prayers to all of them and to you too, my partners in this journey.

Sorry this was a very long one, I really need to be heard.
THANKS.
 

taty05

New member
I guess for most of us, this journey starts with a phone call, when I got mine, I had already forget that three days before my son have had a sweat test done. They called and said that the numbers were high and they needed to re-testing him and schedule the rest of my children to have the sweat test done. I still didn't even know what CF was about, o boy, I knew nothing about it. Two days later, there I was with my entire clan, sweat testing them ALL AT ONCE!!! Three more days went by, and I keep that in the back of my mind, I was saying to myself that probably the first test was wrong, that no news yet was good news. Then the worst call of my life came along, in the other end was our now CF nurse, and with a softly voice she said that we needed to come to the office. She confirmed that Jesus has CF and we need to do further testing on him, but not only that, my then 7 y/o daughter's first sweat test's numbers were also high and she needed to have one more sweat test, this was to confirmed that I was not only dealing with one cfer but two or maybe three, my then 3 y/o son didn't sweat. He has have 4 sweat tests done with no success.
I do too find the Holland story very inspirational to me, every time that I feel down I get it out and read it over and over. I'm still in denial, and I still hope they are gonna said; it was a misdiagnosed,I do not know what the future will bring to us, but I thank good every morning that it was CF and not something worse, there is a lot of kids and parents out there that suffer with severe cases of CF or even worse, more dramatic disease. My prayers to all of them and to you too, my partners in this journey.

Sorry this was a very long one, I really need to be heard.
THANKS.
 

taty05

New member
I guess for most of us, this journey starts with a phone call, when I got mine, I had already forget that three days before my son have had a sweat test done. They called and said that the numbers were high and they needed to re-testing him and schedule the rest of my children to have the sweat test done. I still didn't even know what CF was about, o boy, I knew nothing about it. Two days later, there I was with my entire clan, sweat testing them ALL AT ONCE!!! Three more days went by, and I keep that in the back of my mind, I was saying to myself that probably the first test was wrong, that no news yet was good news. Then the worst call of my life came along, in the other end was our now CF nurse, and with a softly voice she said that we needed to come to the office. She confirmed that Jesus has CF and we need to do further testing on him, but not only that, my then 7 y/o daughter's first sweat test's numbers were also high and she needed to have one more sweat test, this was to confirmed that I was not only dealing with one cfer but two or maybe three, my then 3 y/o son didn't sweat. He has have 4 sweat tests done with no success.
I do too find the Holland story very inspirational to me, every time that I feel down I get it out and read it over and over. I'm still in denial, and I still hope they are gonna said; it was a misdiagnosed,I do not know what the future will bring to us, but I thank good every morning that it was CF and not something worse, there is a lot of kids and parents out there that suffer with severe cases of CF or even worse, more dramatic disease. My prayers to all of them and to you too, my partners in this journey.

Sorry this was a very long one, I really need to be heard.
THANKS.
 

taty05

New member
I guess for most of us, this journey starts with a phone call, when I got mine, I had already forget that three days before my son have had a sweat test done. They called and said that the numbers were high and they needed to re-testing him and schedule the rest of my children to have the sweat test done. I still didn't even know what CF was about, o boy, I knew nothing about it. Two days later, there I was with my entire clan, sweat testing them ALL AT ONCE!!! Three more days went by, and I keep that in the back of my mind, I was saying to myself that probably the first test was wrong, that no news yet was good news. Then the worst call of my life came along, in the other end was our now CF nurse, and with a softly voice she said that we needed to come to the office. She confirmed that Jesus has CF and we need to do further testing on him, but not only that, my then 7 y/o daughter's first sweat test's numbers were also high and she needed to have one more sweat test, this was to confirmed that I was not only dealing with one cfer but two or maybe three, my then 3 y/o son didn't sweat. He has have 4 sweat tests done with no success.
<br />I do too find the Holland story very inspirational to me, every time that I feel down I get it out and read it over and over. I'm still in denial, and I still hope they are gonna said; it was a misdiagnosed,I do not know what the future will bring to us, but I thank good every morning that it was CF and not something worse, there is a lot of kids and parents out there that suffer with severe cases of CF or even worse, more dramatic disease. My prayers to all of them and to you too, my partners in this journey.
<br />
<br />Sorry this was a very long one, I really need to be heard.
<br />THANKS.
 

jmiller

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

Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.



</end quote></div>

This is so true! I am not a CF parent, but rather a CFer. There are so many times when I feel like this life is not really mine... and that I am just watching a movie that my husband brought home from redbox- the kind of movie that makes me angry because I find myself in a lump of emotions when all I wanted was a romantic comedy!?

But in the end- I am thankful for my CF. (WHAT?! DID I REALLY SAY THAT OUTLOUD). It is the thorn in my side that continually humbles me and makes me completely relient on my faith in *****. If life was all about the number of years spent on this earth then CF might not be the best diagnosis... but I have learned that life is about loving and serving others (not that I am great at either of these), it's about rocking my 1 year-old to sleep, sharing laughs and tears and every emotion with my husband, learning to rejoice despite circumstance, being "present" with everyone, and bringing glory to our creator.

There are so many exciting new treatments on the horizon that I am hopeful my time will not end because of CF... whether by God's healing hand or medicine!
 

jmiller

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

Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.



</end quote></div>

This is so true! I am not a CF parent, but rather a CFer. There are so many times when I feel like this life is not really mine... and that I am just watching a movie that my husband brought home from redbox- the kind of movie that makes me angry because I find myself in a lump of emotions when all I wanted was a romantic comedy!?

But in the end- I am thankful for my CF. (WHAT?! DID I REALLY SAY THAT OUTLOUD). It is the thorn in my side that continually humbles me and makes me completely relient on my faith in *****. If life was all about the number of years spent on this earth then CF might not be the best diagnosis... but I have learned that life is about loving and serving others (not that I am great at either of these), it's about rocking my 1 year-old to sleep, sharing laughs and tears and every emotion with my husband, learning to rejoice despite circumstance, being "present" with everyone, and bringing glory to our creator.

There are so many exciting new treatments on the horizon that I am hopeful my time will not end because of CF... whether by God's healing hand or medicine!
 

jmiller

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

Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.



</end quote></div>

This is so true! I am not a CF parent, but rather a CFer. There are so many times when I feel like this life is not really mine... and that I am just watching a movie that my husband brought home from redbox- the kind of movie that makes me angry because I find myself in a lump of emotions when all I wanted was a romantic comedy!?

But in the end- I am thankful for my CF. (WHAT?! DID I REALLY SAY THAT OUTLOUD). It is the thorn in my side that continually humbles me and makes me completely relient on my faith in *****. If life was all about the number of years spent on this earth then CF might not be the best diagnosis... but I have learned that life is about loving and serving others (not that I am great at either of these), it's about rocking my 1 year-old to sleep, sharing laughs and tears and every emotion with my husband, learning to rejoice despite circumstance, being "present" with everyone, and bringing glory to our creator.

There are so many exciting new treatments on the horizon that I am hopeful my time will not end because of CF... whether by God's healing hand or medicine!
 

jmiller

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

Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.



</end quote>

This is so true! I am not a CF parent, but rather a CFer. There are so many times when I feel like this life is not really mine... and that I am just watching a movie that my husband brought home from redbox- the kind of movie that makes me angry because I find myself in a lump of emotions when all I wanted was a romantic comedy!?

But in the end- I am thankful for my CF. (WHAT?! DID I REALLY SAY THAT OUTLOUD). It is the thorn in my side that continually humbles me and makes me completely relient on my faith in *****. If life was all about the number of years spent on this earth then CF might not be the best diagnosis... but I have learned that life is about loving and serving others (not that I am great at either of these), it's about rocking my 1 year-old to sleep, sharing laughs and tears and every emotion with my husband, learning to rejoice despite circumstance, being "present" with everyone, and bringing glory to our creator.

There are so many exciting new treatments on the horizon that I am hopeful my time will not end because of CF... whether by God's healing hand or medicine!
 

jmiller

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>djbowler</b></i>
<br />
<br /> Intensely in the moment. It's like living your life through an old 8mm movie real ALL the time when you have a child with CF. You laugh harder, worry harder, cry harder. It's just intense.
<br />
<br />
<br />
<br /></end quote>
<br />
<br />This is so true! I am not a CF parent, but rather a CFer. There are so many times when I feel like this life is not really mine... and that I am just watching a movie that my husband brought home from redbox- the kind of movie that makes me angry because I find myself in a lump of emotions when all I wanted was a romantic comedy!?
<br />
<br />But in the end- I am thankful for my CF. (WHAT?! DID I REALLY SAY THAT OUTLOUD). It is the thorn in my side that continually humbles me and makes me completely relient on my faith in *****. If life was all about the number of years spent on this earth then CF might not be the best diagnosis... but I have learned that life is about loving and serving others (not that I am great at either of these), it's about rocking my 1 year-old to sleep, sharing laughs and tears and every emotion with my husband, learning to rejoice despite circumstance, being "present" with everyone, and bringing glory to our creator.
<br />
<br />There are so many exciting new treatments on the horizon that I am hopeful my time will not end because of CF... whether by God's healing hand or medicine!
 
Top