feeling really alone in this

lissajane22 · Jul 15, 2009

I hope things are getting better for you. I completely know how you feel. No one really understands what all goes into having a baby with CF. Our family is really supportive, but they still don't really "get it". And my hubby gets sick of hearing me talk about it all the time.
My son was born almost a year ago. It does get better with time, but it is still hard some days.
I know we shouldn't feel guilty, but I do sometimes. I love him so much and would do anything to take it away.
I've always been the person who wants to know what is going on and what is going to happen and have a plan for everything. CF has definitely changed that part of my life!
It really does get better though. You just learn to adapt. Good luck with everything!!! It is so nice to have someone who really understands.

lissajane22 · Jul 15, 2009

I hope things are getting better for you. I completely know how you feel. No one really understands what all goes into having a baby with CF. Our family is really supportive, but they still don't really "get it". And my hubby gets sick of hearing me talk about it all the time.
My son was born almost a year ago. It does get better with time, but it is still hard some days.
I know we shouldn't feel guilty, but I do sometimes. I love him so much and would do anything to take it away.
I've always been the person who wants to know what is going on and what is going to happen and have a plan for everything. CF has definitely changed that part of my life!
It really does get better though. You just learn to adapt. Good luck with everything!!! It is so nice to have someone who really understands.

lissajane22 · Jul 15, 2009

I hope things are getting better for you. I completely know how you feel. No one really understands what all goes into having a baby with CF. Our family is really supportive, but they still don't really "get it". And my hubby gets sick of hearing me talk about it all the time.
My son was born almost a year ago. It does get better with time, but it is still hard some days.
I know we shouldn't feel guilty, but I do sometimes. I love him so much and would do anything to take it away.
I've always been the person who wants to know what is going on and what is going to happen and have a plan for everything. CF has definitely changed that part of my life!
It really does get better though. You just learn to adapt. Good luck with everything!!! It is so nice to have someone who really understands.

lissajane22 · Jul 15, 2009

I hope things are getting better for you. I completely know how you feel. No one really understands what all goes into having a baby with CF. Our family is really supportive, but they still don't really "get it". And my hubby gets sick of hearing me talk about it all the time.
My son was born almost a year ago. It does get better with time, but it is still hard some days.
I know we shouldn't feel guilty, but I do sometimes. I love him so much and would do anything to take it away.
I've always been the person who wants to know what is going on and what is going to happen and have a plan for everything. CF has definitely changed that part of my life!
It really does get better though. You just learn to adapt. Good luck with everything!!! It is so nice to have someone who really understands.

lissajane22 · Jul 15, 2009

I hope things are getting better for you. I completely know how you feel. No one really understands what all goes into having a baby with CF. Our family is really supportive, but they still don't really "get it". And my hubby gets sick of hearing me talk about it all the time.
 My son was born almost a year ago. It does get better with time, but it is still hard some days.
 I know we shouldn't feel guilty, but I do sometimes. I love him so much and would do anything to take it away.
 I've always been the person who wants to know what is going on and what is going to happen and have a plan for everything. CF has definitely changed that part of my life!
 It really does get better though. You just learn to adapt. Good luck with everything!!! It is so nice to have someone who really understands.

jillgnelson · Jul 16, 2009

It's funny that you say you are the person who always wants to know what the future holds, because I am exactly the same way. If there is one thing CF has taught me, it's that I'm going to have to take it one day at a time and there is no way to predict what the future will bring.
It really does help so much to hear that other people have gone through similar experiences (not that I would wish this on anyone).

jillgnelson · Jul 16, 2009

It's funny that you say you are the person who always wants to know what the future holds, because I am exactly the same way. If there is one thing CF has taught me, it's that I'm going to have to take it one day at a time and there is no way to predict what the future will bring.
It really does help so much to hear that other people have gone through similar experiences (not that I would wish this on anyone).

jillgnelson · Jul 16, 2009

It's funny that you say you are the person who always wants to know what the future holds, because I am exactly the same way. If there is one thing CF has taught me, it's that I'm going to have to take it one day at a time and there is no way to predict what the future will bring.
It really does help so much to hear that other people have gone through similar experiences (not that I would wish this on anyone).

jillgnelson · Jul 16, 2009

It's funny that you say you are the person who always wants to know what the future holds, because I am exactly the same way. If there is one thing CF has taught me, it's that I'm going to have to take it one day at a time and there is no way to predict what the future will bring.
It really does help so much to hear that other people have gone through similar experiences (not that I would wish this on anyone).

jillgnelson · Jul 16, 2009

It's funny that you say you are the person who always wants to know what the future holds, because I am exactly the same way. If there is one thing CF has taught me, it's that I'm going to have to take it one day at a time and there is no way to predict what the future will bring.
 It really does help so much to hear that other people have gone through similar experiences (not that I would wish this on anyone).

lissajane22 · Jul 17, 2009

One of the worst things for me also is that I tend to be so pessimistic. I have to constantly remind myself to ENJOY TODAY with my son. I have to stop thinking about what could happen, what might happen, etc... It doesn't really matter. If we try to live in the future, we can't enjoy the NOW. It is so easy to say, but so hard to do. I feel like I am constantly struggling with myself to be positive for his sake. I don't want him to be like me and I want him to grow up happy and enjoy life.
It's so bad to say, but at least they don't have cancer or some problem with their mental capacity or something where they will die tomorrow. I just have tremendous guilt...feeling like this is something I did to my son. But at the same time, I know that is irrational. It is so frustrating!!!
I feel like I have faced the reality of CF, yet I still wish I could wake up one day and it would be gone. I hate feeling like "why did this happen to me." I don't want people to feel sorry for me, but I still want it to go away. AHHHHRRRRGHHHHHHH! <img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks for listening!!!

lissajane22 · Jul 17, 2009

One of the worst things for me also is that I tend to be so pessimistic. I have to constantly remind myself to ENJOY TODAY with my son. I have to stop thinking about what could happen, what might happen, etc... It doesn't really matter. If we try to live in the future, we can't enjoy the NOW. It is so easy to say, but so hard to do. I feel like I am constantly struggling with myself to be positive for his sake. I don't want him to be like me and I want him to grow up happy and enjoy life.
It's so bad to say, but at least they don't have cancer or some problem with their mental capacity or something where they will die tomorrow. I just have tremendous guilt...feeling like this is something I did to my son. But at the same time, I know that is irrational. It is so frustrating!!!
I feel like I have faced the reality of CF, yet I still wish I could wake up one day and it would be gone. I hate feeling like "why did this happen to me." I don't want people to feel sorry for me, but I still want it to go away. AHHHHRRRRGHHHHHHH! <img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks for listening!!!

lissajane22 · Jul 17, 2009

One of the worst things for me also is that I tend to be so pessimistic. I have to constantly remind myself to ENJOY TODAY with my son. I have to stop thinking about what could happen, what might happen, etc... It doesn't really matter. If we try to live in the future, we can't enjoy the NOW. It is so easy to say, but so hard to do. I feel like I am constantly struggling with myself to be positive for his sake. I don't want him to be like me and I want him to grow up happy and enjoy life.
It's so bad to say, but at least they don't have cancer or some problem with their mental capacity or something where they will die tomorrow. I just have tremendous guilt...feeling like this is something I did to my son. But at the same time, I know that is irrational. It is so frustrating!!!
I feel like I have faced the reality of CF, yet I still wish I could wake up one day and it would be gone. I hate feeling like "why did this happen to me." I don't want people to feel sorry for me, but I still want it to go away. AHHHHRRRRGHHHHHHH! <img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks for listening!!!

lissajane22 · Jul 17, 2009

One of the worst things for me also is that I tend to be so pessimistic. I have to constantly remind myself to ENJOY TODAY with my son. I have to stop thinking about what could happen, what might happen, etc... It doesn't really matter. If we try to live in the future, we can't enjoy the NOW. It is so easy to say, but so hard to do. I feel like I am constantly struggling with myself to be positive for his sake. I don't want him to be like me and I want him to grow up happy and enjoy life.
It's so bad to say, but at least they don't have cancer or some problem with their mental capacity or something where they will die tomorrow. I just have tremendous guilt...feeling like this is something I did to my son. But at the same time, I know that is irrational. It is so frustrating!!!
I feel like I have faced the reality of CF, yet I still wish I could wake up one day and it would be gone. I hate feeling like "why did this happen to me." I don't want people to feel sorry for me, but I still want it to go away. AHHHHRRRRGHHHHHHH! <img src="i/expressions/face-icon-small-frown.gif" border="0">

Thanks for listening!!!

lissajane22 · Jul 17, 2009

One of the worst things for me also is that I tend to be so pessimistic. I have to constantly remind myself to ENJOY TODAY with my son. I have to stop thinking about what could happen, what might happen, etc... It doesn't really matter. If we try to live in the future, we can't enjoy the NOW. It is so easy to say, but so hard to do. I feel like I am constantly struggling with myself to be positive for his sake. I don't want him to be like me and I want him to grow up happy and enjoy life.
 It's so bad to say, but at least they don't have cancer or some problem with their mental capacity or something where they will die tomorrow. I just have tremendous guilt...feeling like this is something I did to my son. But at the same time, I know that is irrational. It is so frustrating!!!
 I feel like I have faced the reality of CF, yet I still wish I could wake up one day and it would be gone. I hate feeling like "why did this happen to me." I don't want people to feel sorry for me, but I still want it to go away. AHHHHRRRRGHHHHHHH! <img src="i/expressions/face-icon-small-frown.gif" border="0">
 
 Thanks for listening!!!

whatzleft · Aug 9, 2009

I too am sorry your going thru this, it is very scary in the begining. Please try not to be pessimistic tho, always be on the positive side. My son was dignosed with CF at 3 weeks and he is now 23 yrs old. Has it been easy? Heck no, but I am thankful everyday that he does as well as he does. Many are not as fortunate as he has been. Not sure it will help but my view his whole life thus far has been to be thankful everyday that I have him here with me. We have always done the best we can when a situation arises, and really that's all you can do. Many times I have ask myself over the years why us? But I know God doesn't put more on us than he knows we can handle. To be honest and I hope this doesn't sound crude, but I have never really worried about what lies ahead, I mean of course we stay on top of things, but I figure I'll have plenty of time to do all my worrying when the times come, so try and save that energy for when you need it most. I am new to this site, but believe me all of us here know how hard it is and what your struggles are. So feel free to reach out anytime, that's why we're here. Good luck and God Bless.

whatzleft · Aug 9, 2009

I too am sorry your going thru this, it is very scary in the begining. Please try not to be pessimistic tho, always be on the positive side. My son was dignosed with CF at 3 weeks and he is now 23 yrs old. Has it been easy? Heck no, but I am thankful everyday that he does as well as he does. Many are not as fortunate as he has been. Not sure it will help but my view his whole life thus far has been to be thankful everyday that I have him here with me. We have always done the best we can when a situation arises, and really that's all you can do. Many times I have ask myself over the years why us? But I know God doesn't put more on us than he knows we can handle. To be honest and I hope this doesn't sound crude, but I have never really worried about what lies ahead, I mean of course we stay on top of things, but I figure I'll have plenty of time to do all my worrying when the times come, so try and save that energy for when you need it most. I am new to this site, but believe me all of us here know how hard it is and what your struggles are. So feel free to reach out anytime, that's why we're here. Good luck and God Bless.

whatzleft · Aug 9, 2009

I too am sorry your going thru this, it is very scary in the begining. Please try not to be pessimistic tho, always be on the positive side. My son was dignosed with CF at 3 weeks and he is now 23 yrs old. Has it been easy? Heck no, but I am thankful everyday that he does as well as he does. Many are not as fortunate as he has been. Not sure it will help but my view his whole life thus far has been to be thankful everyday that I have him here with me. We have always done the best we can when a situation arises, and really that's all you can do. Many times I have ask myself over the years why us? But I know God doesn't put more on us than he knows we can handle. To be honest and I hope this doesn't sound crude, but I have never really worried about what lies ahead, I mean of course we stay on top of things, but I figure I'll have plenty of time to do all my worrying when the times come, so try and save that energy for when you need it most. I am new to this site, but believe me all of us here know how hard it is and what your struggles are. So feel free to reach out anytime, that's why we're here. Good luck and God Bless.

whatzleft · Aug 9, 2009

I too am sorry your going thru this, it is very scary in the begining. Please try not to be pessimistic tho, always be on the positive side. My son was dignosed with CF at 3 weeks and he is now 23 yrs old. Has it been easy? Heck no, but I am thankful everyday that he does as well as he does. Many are not as fortunate as he has been. Not sure it will help but my view his whole life thus far has been to be thankful everyday that I have him here with me. We have always done the best we can when a situation arises, and really that's all you can do. Many times I have ask myself over the years why us? But I know God doesn't put more on us than he knows we can handle. To be honest and I hope this doesn't sound crude, but I have never really worried about what lies ahead, I mean of course we stay on top of things, but I figure I'll have plenty of time to do all my worrying when the times come, so try and save that energy for when you need it most. I am new to this site, but believe me all of us here know how hard it is and what your struggles are. So feel free to reach out anytime, that's why we're here. Good luck and God Bless.

whatzleft · Aug 9, 2009

I too am sorry your going thru this, it is very scary in the begining. Please try not to be pessimistic tho, always be on the positive side. My son was dignosed with CF at 3 weeks and he is now 23 yrs old. Has it been easy? Heck no, but I am thankful everyday that he does as well as he does. Many are not as fortunate as he has been. Not sure it will help but my view his whole life thus far has been to be thankful everyday that I have him here with me. We have always done the best we can when a situation arises, and really that's all you can do. Many times I have ask myself over the years why us? But I know God doesn't put more on us than he knows we can handle. To be honest and I hope this doesn't sound crude, but I have never really worried about what lies ahead, I mean of course we stay on top of things, but I figure I'll have plenty of time to do all my worrying when the times come, so try and save that energy for when you need it most. I am new to this site, but believe me all of us here know how hard it is and what your struggles are. So feel free to reach out anytime, that's why we're here. Good luck and God Bless.

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