Still Coping ~ Haven't Posted in a While

[westonsmom]

Been there. Done that. I actually stopped giving him his enzymes at one point because his summer was going very well and he was gaining weight rapidly on the new formula. I had myself convinced that the sweat test was wrong. Then we ended up in the hospital and I confessed about stopping the enzymes and they warned me that by doing that I could cause an obstruction. Then a month later we got the genetic test results...I was devastated again!
I think for the purpose of your own mental health you have to live in some sort of denial. I have to believe that things will get better for Weston and that we will be the lucky ones that don't have any lung issues and the digestive issues will subside. I have to think this or else I would be in a state of depression every day of my life. Cf or not Cf Weston WILL live a full and long life. Good luck!

 

[cdale613]

Hi Emily,

Your post made me feel for you and your daughter very much. You have found the crux of CF, and it isn't easy. Your daughter is not likely to explode into your perception of a person with CF over night. CF is often VERY gradual, and you may not see signs for many years, and even when they arrive, you may not know the difference.

Frankly, you have two choices. You can let the anxiety of knowing that you daughter has CF drive you crazy with fear; or you can appreciate every single day that she is healthy and symptom free. Obviously, its not quite that black and white, but you will find that if you try to choose the later, you will be much more able to care for your daughter and give her the support and help she needs to fight her daily battle with CF.

If you live your life in fear of CF, this will affect how your daughter deals with her disease. In my opinion, no one can live each day expecting the worst. You have a healthy daughter. If you teach your daughter how to work hard to maintain her health, and focus on what she can do instead of what she can't, your daughter will have a great chance of living as full a life as anyone around her.

If your daughter hadn't been genetically diagnosed, it is likely that she could have gone untreated for years. Before genetic testing was available, many mild cases of CF went undiagnosed and untreated for years (including my own), often to the detriment of those individuals. Your knowledge of her diagnosis gives you and the rest of her care team the opportunity to prevent her deteriation due to lack of diagnosis. She now has a chance to benefit from preventative treatments that were not available when I was diagnosed, which will have a huge positive impact on her life. The fact that she doesn't exhibit the outward signs of CF doesn't change her diagnosis, and gives you the chance to minimize lung damage and keep her healthy.

I am 26 years old. I was diagnosed at age 4 due to nasal polyps. There were no CF specific treatments when I was diagnosed, and I didn't start daily inhalations until age 11 when pulmozyme became available (I did receive manual chest pt from age 5 on). I participated in varsity sports in high school and college, I have a Masters degree, work full time and am engaged to be married.

I have no reason to say that CF has limited me; often I feel it drives me to push myself. I work hard to stay healthy, and every time I go outside for a bike ride or a run, the hours of treaments pay dividends. CF may decrease my lifespan; it may not. We're all mortal, and either way, I will know that I lived my life to its fullest, which is more than a lot of people can say.

I wish you the best of luck in helping your daughter.

Chris

26 m w.CF

 

[cdale613]

Hi Emily,

Your post made me feel for you and your daughter very much. You have found the crux of CF, and it isn't easy. Your daughter is not likely to explode into your perception of a person with CF over night. CF is often VERY gradual, and you may not see signs for many years, and even when they arrive, you may not know the difference.

Frankly, you have two choices. You can let the anxiety of knowing that you daughter has CF drive you crazy with fear; or you can appreciate every single day that she is healthy and symptom free. Obviously, its not quite that black and white, but you will find that if you try to choose the later, you will be much more able to care for your daughter and give her the support and help she needs to fight her daily battle with CF.

If you live your life in fear of CF, this will affect how your daughter deals with her disease. In my opinion, no one can live each day expecting the worst. You have a healthy daughter. If you teach your daughter how to work hard to maintain her health, and focus on what she can do instead of what she can't, your daughter will have a great chance of living as full a life as anyone around her.

If your daughter hadn't been genetically diagnosed, it is likely that she could have gone untreated for years. Before genetic testing was available, many mild cases of CF went undiagnosed and untreated for years (including my own), often to the detriment of those individuals. Your knowledge of her diagnosis gives you and the rest of her care team the opportunity to prevent her deteriation due to lack of diagnosis. She now has a chance to benefit from preventative treatments that were not available when I was diagnosed, which will have a huge positive impact on her life. The fact that she doesn't exhibit the outward signs of CF doesn't change her diagnosis, and gives you the chance to minimize lung damage and keep her healthy.

I am 26 years old. I was diagnosed at age 4 due to nasal polyps. There were no CF specific treatments when I was diagnosed, and I didn't start daily inhalations until age 11 when pulmozyme became available (I did receive manual chest pt from age 5 on). I participated in varsity sports in high school and college, I have a Masters degree, work full time and am engaged to be married.

I have no reason to say that CF has limited me; often I feel it drives me to push myself. I work hard to stay healthy, and every time I go outside for a bike ride or a run, the hours of treaments pay dividends. CF may decrease my lifespan; it may not. We're all mortal, and either way, I will know that I lived my life to its fullest, which is more than a lot of people can say.

I wish you the best of luck in helping your daughter.

Chris

26 m w.CF

 

[cdale613]

Hi Emily,

Your post made me feel for you and your daughter very much. You have found the crux of CF, and it isn't easy. Your daughter is not likely to explode into your perception of a person with CF over night. CF is often VERY gradual, and you may not see signs for many years, and even when they arrive, you may not know the difference.

Frankly, you have two choices. You can let the anxiety of knowing that you daughter has CF drive you crazy with fear; or you can appreciate every single day that she is healthy and symptom free. Obviously, its not quite that black and white, but you will find that if you try to choose the later, you will be much more able to care for your daughter and give her the support and help she needs to fight her daily battle with CF.

If you live your life in fear of CF, this will affect how your daughter deals with her disease. In my opinion, no one can live each day expecting the worst. You have a healthy daughter. If you teach your daughter how to work hard to maintain her health, and focus on what she can do instead of what she can't, your daughter will have a great chance of living as full a life as anyone around her.

If your daughter hadn't been genetically diagnosed, it is likely that she could have gone untreated for years. Before genetic testing was available, many mild cases of CF went undiagnosed and untreated for years (including my own), often to the detriment of those individuals. Your knowledge of her diagnosis gives you and the rest of her care team the opportunity to prevent her deteriation due to lack of diagnosis. She now has a chance to benefit from preventative treatments that were not available when I was diagnosed, which will have a huge positive impact on her life. The fact that she doesn't exhibit the outward signs of CF doesn't change her diagnosis, and gives you the chance to minimize lung damage and keep her healthy.

I am 26 years old. I was diagnosed at age 4 due to nasal polyps. There were no CF specific treatments when I was diagnosed, and I didn't start daily inhalations until age 11 when pulmozyme became available (I did receive manual chest pt from age 5 on). I participated in varsity sports in high school and college, I have a Masters degree, work full time and am engaged to be married.

I have no reason to say that CF has limited me; often I feel it drives me to push myself. I work hard to stay healthy, and every time I go outside for a bike ride or a run, the hours of treaments pay dividends. CF may decrease my lifespan; it may not. We're all mortal, and either way, I will know that I lived my life to its fullest, which is more than a lot of people can say.

I wish you the best of luck in helping your daughter.

Chris

26 m w.CF

 

[lemonstolemonade]

Thank you all for the verbal hugs. Your words, encouragement, and perspective mean so much to me!

Chris, folks like you help keep so many of us neurotic parents in check. You remind us of the outlook we need to have, not just for ourselves, but for our children. If Abby has 1/2 the character you've demonstrated in your post when she's 26, I'll have done my job showing her the world of...YOU CAN TOO! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hugs!

 

[lemonstolemonade]

Thank you all for the verbal hugs. Your words, encouragement, and perspective mean so much to me!

Chris, folks like you help keep so many of us neurotic parents in check. You remind us of the outlook we need to have, not just for ourselves, but for our children. If Abby has 1/2 the character you've demonstrated in your post when she's 26, I'll have done my job showing her the world of...YOU CAN TOO! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hugs!

 

[lemonstolemonade]

Thank you all for the verbal hugs. Your words, encouragement, and perspective mean so much to me!

Chris, folks like you help keep so many of us neurotic parents in check. You remind us of the outlook we need to have, not just for ourselves, but for our children. If Abby has 1/2 the character you've demonstrated in your post when she's 26, I'll have done my job showing her the world of...YOU CAN TOO! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Hugs!

 

[JRPandTJP]

Emily, glad you're back. Missed you. We did not have the great start but he is doing so well now that it is hard to believe at times even with the enzymes and vest treatments. I forgot to bring enymes once when we went to lunch! I was so shocked that it actually left my mind for once!

As for D'Nile, it ain't just a river. It took me almost a year to even be able to come on the internet and type the word cystic fibrosis. In the first year every time I said it, it made me feel nauseous (literally). Once he was healthy I wanted to pretend it was all a nightmare and just create our life as if it never happened. Then slowly, I started to accept this as a part of our lives. It was hardest for me to let go of the idea that "I did this to him," my desire for a child, our love, created such a thing...that HE has to live with this and I can't change it. I think this is what we mourn as we accept this thing CF into our lives. We mourn the loss of the "healthy child" we imagined for ourselves. While they are of course just as perfect as anyone else and our love is unwaivering, the idea they may suffer some how is the part that produces the saddness and fear for me.

I think it is okay to forget about CF. It can be a sign that you're integrating it and allowing it to be. Being present in each moment helps to not let our imagination of "what may happen" get the better of us. It may not happen as much as it may.

For me, I will not "FIGHT CF". THis language makes me think of war, battles, opposition, weapons, ect. I don't wish to be "at the ready" waiting for something to happen. Then in some respect, I almost expect it to happen, invite it to happen, cause I'm ready. I choose to replace this idea with being FOR Health, FOR weight gain and growth, FOR clear lungs, FOR life to the fullest for as long as we have it. This may sound weird but it makes a shift happen internally to look for positive ways to react and it helps me not be in opposition to any one part of my son. I accept him as he is and do not see his CF as an opponent. I will partner with it and ask what it needs from me. I will advocate for things I believe will help him...but I will not fight it. This feels better to me as his mom.

Well, I drifted a bit, but we all go through things in our unique way. We all need help sometimes. We are all tremendously resourceful and amazingly strong for our kids. We all do our best each day with this challenge. We all find our own unique ways of coping. Best of all we all share openly here and it means alot to haave this place.

Okay, now I have a tear in my eye and a lump in my throat. You are all amazing women (dads too).

 

[JRPandTJP]

Emily, glad you're back. Missed you. We did not have the great start but he is doing so well now that it is hard to believe at times even with the enzymes and vest treatments. I forgot to bring enymes once when we went to lunch! I was so shocked that it actually left my mind for once!

As for D'Nile, it ain't just a river. It took me almost a year to even be able to come on the internet and type the word cystic fibrosis. In the first year every time I said it, it made me feel nauseous (literally). Once he was healthy I wanted to pretend it was all a nightmare and just create our life as if it never happened. Then slowly, I started to accept this as a part of our lives. It was hardest for me to let go of the idea that "I did this to him," my desire for a child, our love, created such a thing...that HE has to live with this and I can't change it. I think this is what we mourn as we accept this thing CF into our lives. We mourn the loss of the "healthy child" we imagined for ourselves. While they are of course just as perfect as anyone else and our love is unwaivering, the idea they may suffer some how is the part that produces the saddness and fear for me.

I think it is okay to forget about CF. It can be a sign that you're integrating it and allowing it to be. Being present in each moment helps to not let our imagination of "what may happen" get the better of us. It may not happen as much as it may.

For me, I will not "FIGHT CF". THis language makes me think of war, battles, opposition, weapons, ect. I don't wish to be "at the ready" waiting for something to happen. Then in some respect, I almost expect it to happen, invite it to happen, cause I'm ready. I choose to replace this idea with being FOR Health, FOR weight gain and growth, FOR clear lungs, FOR life to the fullest for as long as we have it. This may sound weird but it makes a shift happen internally to look for positive ways to react and it helps me not be in opposition to any one part of my son. I accept him as he is and do not see his CF as an opponent. I will partner with it and ask what it needs from me. I will advocate for things I believe will help him...but I will not fight it. This feels better to me as his mom.

Well, I drifted a bit, but we all go through things in our unique way. We all need help sometimes. We are all tremendously resourceful and amazingly strong for our kids. We all do our best each day with this challenge. We all find our own unique ways of coping. Best of all we all share openly here and it means alot to haave this place.

Okay, now I have a tear in my eye and a lump in my throat. You are all amazing women (dads too).

 

[JRPandTJP]

Emily, glad you're back. Missed you. We did not have the great start but he is doing so well now that it is hard to believe at times even with the enzymes and vest treatments. I forgot to bring enymes once when we went to lunch! I was so shocked that it actually left my mind for once!

As for D'Nile, it ain't just a river. It took me almost a year to even be able to come on the internet and type the word cystic fibrosis. In the first year every time I said it, it made me feel nauseous (literally). Once he was healthy I wanted to pretend it was all a nightmare and just create our life as if it never happened. Then slowly, I started to accept this as a part of our lives. It was hardest for me to let go of the idea that "I did this to him," my desire for a child, our love, created such a thing...that HE has to live with this and I can't change it. I think this is what we mourn as we accept this thing CF into our lives. We mourn the loss of the "healthy child" we imagined for ourselves. While they are of course just as perfect as anyone else and our love is unwaivering, the idea they may suffer some how is the part that produces the saddness and fear for me.

I think it is okay to forget about CF. It can be a sign that you're integrating it and allowing it to be. Being present in each moment helps to not let our imagination of "what may happen" get the better of us. It may not happen as much as it may.

For me, I will not "FIGHT CF". THis language makes me think of war, battles, opposition, weapons, ect. I don't wish to be "at the ready" waiting for something to happen. Then in some respect, I almost expect it to happen, invite it to happen, cause I'm ready. I choose to replace this idea with being FOR Health, FOR weight gain and growth, FOR clear lungs, FOR life to the fullest for as long as we have it. This may sound weird but it makes a shift happen internally to look for positive ways to react and it helps me not be in opposition to any one part of my son. I accept him as he is and do not see his CF as an opponent. I will partner with it and ask what it needs from me. I will advocate for things I believe will help him...but I will not fight it. This feels better to me as his mom.

Well, I drifted a bit, but we all go through things in our unique way. We all need help sometimes. We are all tremendously resourceful and amazingly strong for our kids. We all do our best each day with this challenge. We all find our own unique ways of coping. Best of all we all share openly here and it means alot to haave this place.

Okay, now I have a tear in my eye and a lump in my throat. You are all amazing women (dads too).

 

[lemonstolemonade]

Thanks for the kind words you all. It is truly nice to be back.

I was thinking the other day that maybe coping isn't the right word. Maybe I'm just still trying to figure it all out. Maybe that is coping.

I used to be so self absorbed. It is amazing how all of that self absorption morphs into total reckless abandon for the best opportunities (health, social, educational, etc.) for your children.

Our 5 month old's CF diagnosis has certainly changed my life and my perspective on things for the better. I just feel guilty (there's that NASTY WORD) that it took a CF diagnosis to make me reprioritize everything.

Ok, enough whining. SORRY! I appreciate you all more than you know.

Em

 

[lemonstolemonade]

Thanks for the kind words you all. It is truly nice to be back.

I was thinking the other day that maybe coping isn't the right word. Maybe I'm just still trying to figure it all out. Maybe that is coping.

I used to be so self absorbed. It is amazing how all of that self absorption morphs into total reckless abandon for the best opportunities (health, social, educational, etc.) for your children.

Our 5 month old's CF diagnosis has certainly changed my life and my perspective on things for the better. I just feel guilty (there's that NASTY WORD) that it took a CF diagnosis to make me reprioritize everything.

Ok, enough whining. SORRY! I appreciate you all more than you know.

Em

 

[lemonstolemonade]

Thanks for the kind words you all. It is truly nice to be back.

I was thinking the other day that maybe coping isn't the right word. Maybe I'm just still trying to figure it all out. Maybe that is coping.

I used to be so self absorbed. It is amazing how all of that self absorption morphs into total reckless abandon for the best opportunities (health, social, educational, etc.) for your children.

Our 5 month old's CF diagnosis has certainly changed my life and my perspective on things for the better. I just feel guilty (there's that NASTY WORD) that it took a CF diagnosis to make me reprioritize everything.

Ok, enough whining. SORRY! I appreciate you all more than you know.

Em

 

[Rebjane]

Emily,

I'm so glad your baby is doing well. CF certainly puts things in perspective. I've never been a materialistic person, maybe more a work-a-holic, though. Using work as an escape for dealing with real problems, I like to fix everyone else's problems(still do, oh well) Anyway, we are all just doing the best we can in life and that's all we can do. It's funny about the denial issue as well. My daughter has had some significant issues due to CF. Still sometimes even I the one who does the majority of her treatments can forget she has CF. I don't mean forget treatments and such but I just don't see her as CF and just CF. Which means outsiders won't see her as just a kid with CF, they will see her as Maggie, a 4 year old smarty pants who loves to tease her big brother, dance, be the center of attention, and watch spongebob on TV. So I guess denial is not always a bad thing.

 

[Rebjane]

Emily,

I'm so glad your baby is doing well. CF certainly puts things in perspective. I've never been a materialistic person, maybe more a work-a-holic, though. Using work as an escape for dealing with real problems, I like to fix everyone else's problems(still do, oh well) Anyway, we are all just doing the best we can in life and that's all we can do. It's funny about the denial issue as well. My daughter has had some significant issues due to CF. Still sometimes even I the one who does the majority of her treatments can forget she has CF. I don't mean forget treatments and such but I just don't see her as CF and just CF. Which means outsiders won't see her as just a kid with CF, they will see her as Maggie, a 4 year old smarty pants who loves to tease her big brother, dance, be the center of attention, and watch spongebob on TV. So I guess denial is not always a bad thing.

 

[Rebjane]

Emily,

I'm so glad your baby is doing well. CF certainly puts things in perspective. I've never been a materialistic person, maybe more a work-a-holic, though. Using work as an escape for dealing with real problems, I like to fix everyone else's problems(still do, oh well) Anyway, we are all just doing the best we can in life and that's all we can do. It's funny about the denial issue as well. My daughter has had some significant issues due to CF. Still sometimes even I the one who does the majority of her treatments can forget she has CF. I don't mean forget treatments and such but I just don't see her as CF and just CF. Which means outsiders won't see her as just a kid with CF, they will see her as Maggie, a 4 year old smarty pants who loves to tease her big brother, dance, be the center of attention, and watch spongebob on TV. So I guess denial is not always a bad thing.

 

[JRPandTJP]

When you say "it took CF to make you reprioritize everything" I really relate to that. I have said those very same words. In fact, it was a major source of guilt for a while. It is a very weird dynamic to have the gift of perspective and purpose come to you during a turbulent time or what feels like the expense of another (our precious child). It can be hard to sort through at first. As we go through and allow every emotion to have its time (grief, guilt, anger, fear, joy, bliss, love) we often begin to see a new path develop, a vision for our lives that simply didn't have the energy it needed to come to pass before. Major events like births, illness, death, moving, marriage, divorce, ect seem to ignite these times, almost open us to new possibilities within ourselves. While no one welcomes the less comfortable events they simply happen and we have to choose how to work with it. I believe that is our task, to accept life as it happens, to stretch and grow as much as possible, and to allow life its full purpose. It is complicated, uncomfortable, even painful at times, but then come the moments of bliss and clarity. I don't know if we can have one without the other, do you? I try to practice staying with what life is presenting at this moment, today. CF has helped me do this since imagining what might lay ahead is silly as it doesn't exist. Right now she is perfect and healthy and you are doing great with it all - and it can be alot. CF is asking nothing of you at the moment, so savor it and take it all in...forget about even ;-)

 

[JRPandTJP]

When you say "it took CF to make you reprioritize everything" I really relate to that. I have said those very same words. In fact, it was a major source of guilt for a while. It is a very weird dynamic to have the gift of perspective and purpose come to you during a turbulent time or what feels like the expense of another (our precious child). It can be hard to sort through at first. As we go through and allow every emotion to have its time (grief, guilt, anger, fear, joy, bliss, love) we often begin to see a new path develop, a vision for our lives that simply didn't have the energy it needed to come to pass before. Major events like births, illness, death, moving, marriage, divorce, ect seem to ignite these times, almost open us to new possibilities within ourselves. While no one welcomes the less comfortable events they simply happen and we have to choose how to work with it. I believe that is our task, to accept life as it happens, to stretch and grow as much as possible, and to allow life its full purpose. It is complicated, uncomfortable, even painful at times, but then come the moments of bliss and clarity. I don't know if we can have one without the other, do you? I try to practice staying with what life is presenting at this moment, today. CF has helped me do this since imagining what might lay ahead is silly as it doesn't exist. Right now she is perfect and healthy and you are doing great with it all - and it can be alot. CF is asking nothing of you at the moment, so savor it and take it all in...forget about even ;-)

 

[JRPandTJP]

When you say "it took CF to make you reprioritize everything" I really relate to that. I have said those very same words. In fact, it was a major source of guilt for a while. It is a very weird dynamic to have the gift of perspective and purpose come to you during a turbulent time or what feels like the expense of another (our precious child). It can be hard to sort through at first. As we go through and allow every emotion to have its time (grief, guilt, anger, fear, joy, bliss, love) we often begin to see a new path develop, a vision for our lives that simply didn't have the energy it needed to come to pass before. Major events like births, illness, death, moving, marriage, divorce, ect seem to ignite these times, almost open us to new possibilities within ourselves. While no one welcomes the less comfortable events they simply happen and we have to choose how to work with it. I believe that is our task, to accept life as it happens, to stretch and grow as much as possible, and to allow life its full purpose. It is complicated, uncomfortable, even painful at times, but then come the moments of bliss and clarity. I don't know if we can have one without the other, do you? I try to practice staying with what life is presenting at this moment, today. CF has helped me do this since imagining what might lay ahead is silly as it doesn't exist. Right now she is perfect and healthy and you are doing great with it all - and it can be alot. CF is asking nothing of you at the moment, so savor it and take it all in...forget about even ;-)

 

[Alyssa]

Well Emily, I responded to your private message before I saw this post, so it answered all of the questions I asked you in the PM !

How funny this post was here.... because of my comment to you about my son when I said "sometimes I wonder if he should even have the diagnosis".... seems like I'm not alone in feeling that way I will always be greatful for having the knowlege of his gene mutations, but I am also glad that we didn't find out until later on in life.