Marriage issues

J

jenhum

New member
To the OP, it sounds like you have your hands full. I think it would be a great idea if your husband could go to therapy with you- it might take some outside perspective to realize that he isn't giving you the help and support you need to have a happy marriage. Hugs to you, and just hang in there. I have one toddler and she is more than enough for me to handle, I can't imagine three with cf. But like everything else in life, when you're presented with something difficult, you dig deep and find a way to do it. I hope your husband is able to do the same.

To Cerulean- I so rarely respond to negative comments but honestly your bitterness and ugly comments made me so sad for you. You must really hate your life to be so angry towards people that have multiple children with CF. I am personally a first child (I have two younger sisters w/out cf), but if my parents had chosen to have another child before me with cf, I would still be glad that I am here today. CF certainly presents challenges in my life and can be incredibly hard sometimes, but it's not the worst thing in the world.

And just b/c someone has more children doesn't mean that those children are guaranteed to have CF- it's a 25% chance, right? There is also a chance that you could have a child with Down's Syndrome, or Aspergers, or Spina Bifida. Or your child could be born fine and then get cancer or get in a horrible car accident. I mean come on- should no one ever have children b/c of what could possibly go wrong? I choose to live my life and be happy for what I am blessed with, and humbled by what I'm not.

If someone asks for opinions on whether or not they should have more children when they already have one with cf- then that is the appropriate time to share your opinion. Your post made you sound like a mean, immature jerk- I was shocked when I saw your age, b/c I was expecting a disillusioned 18 year old. If you don't mind sounding like a jerk, then fine- but realize that people are going to respond negatively to it. Some people think that they can be harsh and rude b/c this is the internet, but I feel like people deserve the same respect online as I would give them in person.
 
J

jenhum

New member
To the OP, it sounds like you have your hands full. I think it would be a great idea if your husband could go to therapy with you- it might take some outside perspective to realize that he isn't giving you the help and support you need to have a happy marriage. Hugs to you, and just hang in there. I have one toddler and she is more than enough for me to handle, I can't imagine three with cf. But like everything else in life, when you're presented with something difficult, you dig deep and find a way to do it. I hope your husband is able to do the same.
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<br />To Cerulean- I so rarely respond to negative comments but honestly your bitterness and ugly comments made me so sad for you. You must really hate your life to be so angry towards people that have multiple children with CF. I am personally a first child (I have two younger sisters w/out cf), but if my parents had chosen to have another child before me with cf, I would still be glad that I am here today. CF certainly presents challenges in my life and can be incredibly hard sometimes, but it's not the worst thing in the world.
<br />
<br />And just b/c someone has more children doesn't mean that those children are guaranteed to have CF- it's a 25% chance, right? There is also a chance that you could have a child with Down's Syndrome, or Aspergers, or Spina Bifida. Or your child could be born fine and then get cancer or get in a horrible car accident. I mean come on- should no one ever have children b/c of what could possibly go wrong? I choose to live my life and be happy for what I am blessed with, and humbled by what I'm not.
<br />
<br />If someone asks for opinions on whether or not they should have more children when they already have one with cf- then that is the appropriate time to share your opinion. Your post made you sound like a mean, immature jerk- I was shocked when I saw your age, b/c I was expecting a disillusioned 18 year old. If you don't mind sounding like a jerk, then fine- but realize that people are going to respond negatively to it. Some people think that they can be harsh and rude b/c this is the internet, but I feel like people deserve the same respect online as I would give them in person.
 
P

patrish22

Guest
I understand completely. I raised twin daughters and a son w/CF. We lost one of the girls in October (they are 25 yrs, my son is 24, they are 14 months apart). Are you doing hand percussion or do you have a machine? The vest percussers, (although there are some doctors who feel they might not be as good as manual), are a hugh help. For us, we had Fri or Sat night designated as our time. We rarely could go anywhere, but made the time together. Check with your team at clinic to see if there is any help available. We had nurses/resp.therapist who could make visits,and I would just go out for a short walk. Do you have family near by? See if you can find a way to get some help. Another option that helped me was a local church group who had volunteers who offered to come help on occasion. I know we all worry about (and rightfully so)germs & contact, but you need the help. I believe you can handle it, but you deserve to have some help. If there is a social worker on your CF team, utilize that person. They may be able to arrange some help, or at least someone to talk to. Remember, these are going to be stressful & wonderful years. Don't be afraid to ask for some help. You are both incredibly stressed, scared, and angry. Try to get some time, even if it's just to go for a walk, and while your're walking, hold hands. Find out if there is someone for the both of you to talk to. All these things combined have helped us over the years. It's still not going to be easy, but look for the friendship in your marriage. It's that friendship that will carry you further.
 
P

patrish22

Guest
I understand completely. I raised twin daughters and a son w/CF. We lost one of the girls in October (they are 25 yrs, my son is 24, they are 14 months apart). Are you doing hand percussion or do you have a machine? The vest percussers, (although there are some doctors who feel they might not be as good as manual), are a hugh help. For us, we had Fri or Sat night designated as our time. We rarely could go anywhere, but made the time together. Check with your team at clinic to see if there is any help available. We had nurses/resp.therapist who could make visits,and I would just go out for a short walk. Do you have family near by? See if you can find a way to get some help. Another option that helped me was a local church group who had volunteers who offered to come help on occasion. I know we all worry about (and rightfully so)germs & contact, but you need the help. I believe you can handle it, but you deserve to have some help. If there is a social worker on your CF team, utilize that person. They may be able to arrange some help, or at least someone to talk to. Remember, these are going to be stressful & wonderful years. Don't be afraid to ask for some help. You are both incredibly stressed, scared, and angry. Try to get some time, even if it's just to go for a walk, and while your're walking, hold hands. Find out if there is someone for the both of you to talk to. All these things combined have helped us over the years. It's still not going to be easy, but look for the friendship in your marriage. It's that friendship that will carry you further.
 
P

patrish22

Guest
I understand completely. I raised twin daughters and a son w/CF. We lost one of the girls in October (they are 25 yrs, my son is 24, they are 14 months apart). Are you doing hand percussion or do you have a machine? The vest percussers, (although there are some doctors who feel they might not be as good as manual), are a hugh help. For us, we had Fri or Sat night designated as our time. We rarely could go anywhere, but made the time together. Check with your team at clinic to see if there is any help available. We had nurses/resp.therapist who could make visits,and I would just go out for a short walk. Do you have family near by? See if you can find a way to get some help. Another option that helped me was a local church group who had volunteers who offered to come help on occasion. I know we all worry about (and rightfully so)germs & contact, but you need the help. I believe you can handle it, but you deserve to have some help. If there is a social worker on your CF team, utilize that person. They may be able to arrange some help, or at least someone to talk to. Remember, these are going to be stressful & wonderful years. Don't be afraid to ask for some help. You are both incredibly stressed, scared, and angry. Try to get some time, even if it's just to go for a walk, and while your're walking, hold hands. Find out if there is someone for the both of you to talk to. All these things combined have helped us over the years. It's still not going to be easy, but look for the friendship in your marriage. It's that friendship that will carry you further.
 
P

patrish22

Guest
My children were not diagnosed at birth. It was later. They were all here before they were diagnosed.
 
P

patrish22

Guest
My children were not diagnosed at birth. It was later. They were all here before they were diagnosed.
 
P

patrish22

Guest
My children were not diagnosed at birth. It was later. They were all here before they were diagnosed.
 
T

threebabies

Member
I get some help in the mornings, that is when I do all the cpt and neb treatments all three combined can take any where from 1 to 2 1/2 hours depending if my daughter is on tobi or if I have to stop treatments because I have to change a diaper or my daughter has to use the bathroom. The person who helps me she helps with dishes and laundry it is a big help. All of the kids are doing the vest it is easier for me. My husband and I are taking in all the great advice. Thank you for all the support

Gina
Mom to Sophia 3, Peter & Gavin 20 months, df508 & ps849x
 
T

threebabies

Member
I get some help in the mornings, that is when I do all the cpt and neb treatments all three combined can take any where from 1 to 2 1/2 hours depending if my daughter is on tobi or if I have to stop treatments because I have to change a diaper or my daughter has to use the bathroom. The person who helps me she helps with dishes and laundry it is a big help. All of the kids are doing the vest it is easier for me. My husband and I are taking in all the great advice. Thank you for all the support

Gina
Mom to Sophia 3, Peter & Gavin 20 months, df508 & ps849x
 
T

threebabies

Member
I get some help in the mornings, that is when I do all the cpt and neb treatments all three combined can take any where from 1 to 2 1/2 hours depending if my daughter is on tobi or if I have to stop treatments because I have to change a diaper or my daughter has to use the bathroom. The person who helps me she helps with dishes and laundry it is a big help. All of the kids are doing the vest it is easier for me. My husband and I are taking in all the great advice. Thank you for all the support
<br />
<br />Gina
<br />Mom to Sophia 3, Peter & Gavin 20 months, df508 & ps849x
 
C

Cerulean

New member
Not sure if you are addressing me or not. I kinda didn't want to participate in the "hijacking" of this thread, but seeing that the other participants don't particularly care if it continues to be "hijacked" or not, I'll answer your question.

It is a very existential question indeed. I would say yes. She should have aborted me, not that I particularly have a death wish. But I would not have wanted to be brought into this world if it could have eased suffering and ultimately condemned me to a early death (not to mention the emotional burden my parents had to face.

Why the decision? It wouldn't matter. I wouldn't have been alive to reflect upon whether I should have or should not have lived. Therefore, the point would be moot. However, I was born at a time where the disease could not be diagnosed until much later in a child's life. I think I was diagnosed at about 8 or 9 years old, and only after many false sweat test results. They didn't have genetic screening back then. I am quite fortunate that I don't experience half the ***** some of you go through.

It pains me every time I see a message like, "So-and-so" is in the hospital again. I used to follow Eva's blog. For those who don't know her, she went by the name 65_redroses. I watched her get worse, transplant, get better for a year, reject, wait hoping against hope that there'd be another doner, and then die at (I believe) 23 years old. It was an emotional roller-coaster and I was along for the ride. I witnessed her last dying video surrounded by her family- barely able to muster the breath to speak in stutters. I wouldn't wish what she experienced on anyone. This is why I believe so strongly about notsupporting a parents right to have children, who know that they can produce another child with CF. This is why I believe it is abusive and neglectful. Children don't deserve what Eva went through. Some people think I am cold, callous and have acceptance/anger issues, but it couldn't be further from the truth. The problem is that I care _too_ much and that's why I find their comments so funny, especially those who proport to know my deepest psyche, because the comments are so off-base.

How much alike are those who are conditioned to respond almost in a systematic/predetermined fashion without thinking when someone challenges their beliefs. Who constantly warm over reality, anger at those who don't hold to the same beliefs as they do, and protect those who really perhaps shouldn't be protected. These responses seem to be given without much thought. Almost like a script- a way to behave- if norms are violated. I think it is some sort of groupthink, a conditioning to behave in a certain way as everyone else, challenging every person who does not think the same as they do, yet unquestion their own (and their groups) belief systems even though they may or may not be good choices.
 
C

Cerulean

New member
Not sure if you are addressing me or not. I kinda didn't want to participate in the "hijacking" of this thread, but seeing that the other participants don't particularly care if it continues to be "hijacked" or not, I'll answer your question.

It is a very existential question indeed. I would say yes. She should have aborted me, not that I particularly have a death wish. But I would not have wanted to be brought into this world if it could have eased suffering and ultimately condemned me to a early death (not to mention the emotional burden my parents had to face.

Why the decision? It wouldn't matter. I wouldn't have been alive to reflect upon whether I should have or should not have lived. Therefore, the point would be moot. However, I was born at a time where the disease could not be diagnosed until much later in a child's life. I think I was diagnosed at about 8 or 9 years old, and only after many false sweat test results. They didn't have genetic screening back then. I am quite fortunate that I don't experience half the ***** some of you go through.

It pains me every time I see a message like, "So-and-so" is in the hospital again. I used to follow Eva's blog. For those who don't know her, she went by the name 65_redroses. I watched her get worse, transplant, get better for a year, reject, wait hoping against hope that there'd be another doner, and then die at (I believe) 23 years old. It was an emotional roller-coaster and I was along for the ride. I witnessed her last dying video surrounded by her family- barely able to muster the breath to speak in stutters. I wouldn't wish what she experienced on anyone. This is why I believe so strongly about notsupporting a parents right to have children, who know that they can produce another child with CF. This is why I believe it is abusive and neglectful. Children don't deserve what Eva went through. Some people think I am cold, callous and have acceptance/anger issues, but it couldn't be further from the truth. The problem is that I care _too_ much and that's why I find their comments so funny, especially those who proport to know my deepest psyche, because the comments are so off-base.

How much alike are those who are conditioned to respond almost in a systematic/predetermined fashion without thinking when someone challenges their beliefs. Who constantly warm over reality, anger at those who don't hold to the same beliefs as they do, and protect those who really perhaps shouldn't be protected. These responses seem to be given without much thought. Almost like a script- a way to behave- if norms are violated. I think it is some sort of groupthink, a conditioning to behave in a certain way as everyone else, challenging every person who does not think the same as they do, yet unquestion their own (and their groups) belief systems even though they may or may not be good choices.
 
C

Cerulean

New member
Not sure if you are addressing me or not. I kinda didn't want to participate in the "hijacking" of this thread, but seeing that the other participants don't particularly care if it continues to be "hijacked" or not, I'll answer your question.
<br />
<br />It is a very existential question indeed. I would say yes. She should have aborted me, not that I particularly have a death wish. But I would not have wanted to be brought into this world if it could have eased suffering and ultimately condemned me to a early death (not to mention the emotional burden my parents had to face.
<br />
<br />Why the decision? It wouldn't matter. I wouldn't have been alive to reflect upon whether I should have or should not have lived. Therefore, the point would be moot. However, I was born at a time where the disease could not be diagnosed until much later in a child's life. I think I was diagnosed at about 8 or 9 years old, and only after many false sweat test results. They didn't have genetic screening back then. I am quite fortunate that I don't experience half the ***** some of you go through.
<br />
<br />It pains me every time I see a message like, "So-and-so" is in the hospital again. I used to follow Eva's blog. For those who don't know her, she went by the name 65_redroses. I watched her get worse, transplant, get better for a year, reject, wait hoping against hope that there'd be another doner, and then die at (I believe) 23 years old. It was an emotional roller-coaster and I was along for the ride. I witnessed her last dying video surrounded by her family- barely able to muster the breath to speak in stutters. I wouldn't wish what she experienced on anyone. This is why I believe so strongly about notsupporting a parents right to have children, who know that they can produce another child with CF. This is why I believe it is abusive and neglectful. Children don't deserve what Eva went through. Some people think I am cold, callous and have acceptance/anger issues, but it couldn't be further from the truth. The problem is that I care _too_ much and that's why I find their comments so funny, especially those who proport to know my deepest psyche, because the comments are so off-base.
<br />
<br />How much alike are those who are conditioned to respond almost in a systematic/predetermined fashion without thinking when someone challenges their beliefs. Who constantly warm over reality, anger at those who don't hold to the same beliefs as they do, and protect those who really perhaps shouldn't be protected. These responses seem to be given without much thought. Almost like a script- a way to behave- if norms are violated. I think it is some sort of groupthink, a conditioning to behave in a certain way as everyone else, challenging every person who does not think the same as they do, yet unquestion their own (and their groups) belief systems even though they may or may not be good choices.
 
A

AleksandraKaczynska

New member
James - I didn't want to answere but I find you are afraid of life. Courage!
When giving birth for the second time - all moms know how dangerous it is and how many complication there can be - for the mom and child. It always comes down to will be or not. Cf or many, many others. Genetic or not...
But we have the courage to take that gamble in looking for happines. And children are part of that happiness.
Caring - yes, maybe, I don't know you - but I see also a very afraid person.
All people deserve life!
 
A

AleksandraKaczynska

New member
James - I didn't want to answere but I find you are afraid of life. Courage!
When giving birth for the second time - all moms know how dangerous it is and how many complication there can be - for the mom and child. It always comes down to will be or not. Cf or many, many others. Genetic or not...
But we have the courage to take that gamble in looking for happines. And children are part of that happiness.
Caring - yes, maybe, I don't know you - but I see also a very afraid person.
All people deserve life!
 
A

AleksandraKaczynska

New member
James - I didn't want to answere but I find you are afraid of life. Courage!
<br />When giving birth for the second time - all moms know how dangerous it is and how many complication there can be - for the mom and child. It always comes down to will be or not. Cf or many, many others. Genetic or not...
<br />But we have the courage to take that gamble in looking for happines. And children are part of that happiness.
<br />Caring - yes, maybe, I don't know you - but I see also a very afraid person.
<br />All people deserve life!
 
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