I'm not sure what to say....

holmfamily1992

New member
I think the hardest part is actually believing that this is happening. I have to look at it this way, my girls have been healthy and they will continue to be healthy. With the treatments, it can only help them. My boys are a little bit different. They may not have had the lung issue's that alot of CFers have but the digestive system is really messed up. BUT we can get through that.

I have been working on our video. I had to make a lot of changes with the new news. I did however cut it back to one song and I think it looks really good. I have to edit it one more time to lenghthen some of the info spots. But over all I think it will do.

My parents kind of make me a littel bit upset. I called them the other day because they have registered to go on our Great Strides walk with us. My dads knee is blown out so I know he can't walk but my mom can. She said she wasnt sure if she was going or not. So I spoke to my cousin about it and she told me all she has heard them say behind my back is "well, Tina's kids arent even sick". It's almost like denial. Just because they havent been in and out of the hospital doesnt mean they arent sick. She is trying to talk us out of a feeding tube. But what she doesnt understand is that Dylan and Ryan can not consume 3200+ calories in a day. Dylan and Ryan both are looking really bad. So how am I suppose to talk with them about this when they dont even believe that they are sick??

Its just frustrating. We need all the support we can get and my family is being like this. My husbands family has been awesome!! Not only emotional support but finacial support also. They have donated almost $900 to the foundation!! Thats so cool.

I can't worry about what my family thinks right now. If my parents dont want to believe that this is happening then let them believe it. I think it has a lot to do with the fact that they dont know a whole lot about it. Everytime I try to talk with them about it my dad changes the subject.

What do you think? Anyone else have this problem?
Tina
 

holmfamily1992

New member
I think the hardest part is actually believing that this is happening. I have to look at it this way, my girls have been healthy and they will continue to be healthy. With the treatments, it can only help them. My boys are a little bit different. They may not have had the lung issue's that alot of CFers have but the digestive system is really messed up. BUT we can get through that.

I have been working on our video. I had to make a lot of changes with the new news. I did however cut it back to one song and I think it looks really good. I have to edit it one more time to lenghthen some of the info spots. But over all I think it will do.

My parents kind of make me a littel bit upset. I called them the other day because they have registered to go on our Great Strides walk with us. My dads knee is blown out so I know he can't walk but my mom can. She said she wasnt sure if she was going or not. So I spoke to my cousin about it and she told me all she has heard them say behind my back is "well, Tina's kids arent even sick". It's almost like denial. Just because they havent been in and out of the hospital doesnt mean they arent sick. She is trying to talk us out of a feeding tube. But what she doesnt understand is that Dylan and Ryan can not consume 3200+ calories in a day. Dylan and Ryan both are looking really bad. So how am I suppose to talk with them about this when they dont even believe that they are sick??

Its just frustrating. We need all the support we can get and my family is being like this. My husbands family has been awesome!! Not only emotional support but finacial support also. They have donated almost $900 to the foundation!! Thats so cool.

I can't worry about what my family thinks right now. If my parents dont want to believe that this is happening then let them believe it. I think it has a lot to do with the fact that they dont know a whole lot about it. Everytime I try to talk with them about it my dad changes the subject.

What do you think? Anyone else have this problem?
Tina
 

holmfamily1992

New member
I think the hardest part is actually believing that this is happening. I have to look at it this way, my girls have been healthy and they will continue to be healthy. With the treatments, it can only help them. My boys are a little bit different. They may not have had the lung issue's that alot of CFers have but the digestive system is really messed up. BUT we can get through that.

I have been working on our video. I had to make a lot of changes with the new news. I did however cut it back to one song and I think it looks really good. I have to edit it one more time to lenghthen some of the info spots. But over all I think it will do.

My parents kind of make me a littel bit upset. I called them the other day because they have registered to go on our Great Strides walk with us. My dads knee is blown out so I know he can't walk but my mom can. She said she wasnt sure if she was going or not. So I spoke to my cousin about it and she told me all she has heard them say behind my back is "well, Tina's kids arent even sick". It's almost like denial. Just because they havent been in and out of the hospital doesnt mean they arent sick. She is trying to talk us out of a feeding tube. But what she doesnt understand is that Dylan and Ryan can not consume 3200+ calories in a day. Dylan and Ryan both are looking really bad. So how am I suppose to talk with them about this when they dont even believe that they are sick??

Its just frustrating. We need all the support we can get and my family is being like this. My husbands family has been awesome!! Not only emotional support but finacial support also. They have donated almost $900 to the foundation!! Thats so cool.

I can't worry about what my family thinks right now. If my parents dont want to believe that this is happening then let them believe it. I think it has a lot to do with the fact that they dont know a whole lot about it. Everytime I try to talk with them about it my dad changes the subject.

What do you think? Anyone else have this problem?
Tina
 

holmfamily1992

New member
I think the hardest part is actually believing that this is happening. I have to look at it this way, my girls have been healthy and they will continue to be healthy. With the treatments, it can only help them. My boys are a little bit different. They may not have had the lung issue's that alot of CFers have but the digestive system is really messed up. BUT we can get through that.

I have been working on our video. I had to make a lot of changes with the new news. I did however cut it back to one song and I think it looks really good. I have to edit it one more time to lenghthen some of the info spots. But over all I think it will do.

My parents kind of make me a littel bit upset. I called them the other day because they have registered to go on our Great Strides walk with us. My dads knee is blown out so I know he can't walk but my mom can. She said she wasnt sure if she was going or not. So I spoke to my cousin about it and she told me all she has heard them say behind my back is "well, Tina's kids arent even sick". It's almost like denial. Just because they havent been in and out of the hospital doesnt mean they arent sick. She is trying to talk us out of a feeding tube. But what she doesnt understand is that Dylan and Ryan can not consume 3200+ calories in a day. Dylan and Ryan both are looking really bad. So how am I suppose to talk with them about this when they dont even believe that they are sick??

Its just frustrating. We need all the support we can get and my family is being like this. My husbands family has been awesome!! Not only emotional support but finacial support also. They have donated almost $900 to the foundation!! Thats so cool.

I can't worry about what my family thinks right now. If my parents dont want to believe that this is happening then let them believe it. I think it has a lot to do with the fact that they dont know a whole lot about it. Everytime I try to talk with them about it my dad changes the subject.

What do you think? Anyone else have this problem?
Tina
 

holmfamily1992

New member
I think the hardest part is actually believing that this is happening. I have to look at it this way, my girls have been healthy and they will continue to be healthy. With the treatments, it can only help them. My boys are a little bit different. They may not have had the lung issue's that alot of CFers have but the digestive system is really messed up. BUT we can get through that.
<br />
<br />I have been working on our video. I had to make a lot of changes with the new news. I did however cut it back to one song and I think it looks really good. I have to edit it one more time to lenghthen some of the info spots. But over all I think it will do.
<br />
<br />My parents kind of make me a littel bit upset. I called them the other day because they have registered to go on our Great Strides walk with us. My dads knee is blown out so I know he can't walk but my mom can. She said she wasnt sure if she was going or not. So I spoke to my cousin about it and she told me all she has heard them say behind my back is "well, Tina's kids arent even sick". It's almost like denial. Just because they havent been in and out of the hospital doesnt mean they arent sick. She is trying to talk us out of a feeding tube. But what she doesnt understand is that Dylan and Ryan can not consume 3200+ calories in a day. Dylan and Ryan both are looking really bad. So how am I suppose to talk with them about this when they dont even believe that they are sick??
<br />
<br />Its just frustrating. We need all the support we can get and my family is being like this. My husbands family has been awesome!! Not only emotional support but finacial support also. They have donated almost $900 to the foundation!! Thats so cool.
<br />
<br />I can't worry about what my family thinks right now. If my parents dont want to believe that this is happening then let them believe it. I think it has a lot to do with the fact that they dont know a whole lot about it. Everytime I try to talk with them about it my dad changes the subject.
<br />
<br />What do you think? Anyone else have this problem?
<br />Tina
 
C

Cherylwithone

Guest
Alot of others have gone through the same thing. If you can't see it, it is not real. What alot of people in general don't understand is how the human body really works inside. My daughter has had a button for awhile now. She started with GI issues and then it hither lungs.
Just do the preventing that you can. Your dad sounds like he changes the subject because he is scared for your children. You know that old saying out of sight out of mind. Hang in there. It will get better with them.
Hugs and prayers for your family.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Alot of others have gone through the same thing. If you can't see it, it is not real. What alot of people in general don't understand is how the human body really works inside. My daughter has had a button for awhile now. She started with GI issues and then it hither lungs.
Just do the preventing that you can. Your dad sounds like he changes the subject because he is scared for your children. You know that old saying out of sight out of mind. Hang in there. It will get better with them.
Hugs and prayers for your family.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Alot of others have gone through the same thing. If you can't see it, it is not real. What alot of people in general don't understand is how the human body really works inside. My daughter has had a button for awhile now. She started with GI issues and then it hither lungs.
Just do the preventing that you can. Your dad sounds like he changes the subject because he is scared for your children. You know that old saying out of sight out of mind. Hang in there. It will get better with them.
Hugs and prayers for your family.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Alot of others have gone through the same thing. If you can't see it, it is not real. What alot of people in general don't understand is how the human body really works inside. My daughter has had a button for awhile now. She started with GI issues and then it hither lungs.
Just do the preventing that you can. Your dad sounds like he changes the subject because he is scared for your children. You know that old saying out of sight out of mind. Hang in there. It will get better with them.
Hugs and prayers for your family.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Alot of others have gone through the same thing. If you can't see it, it is not real. What alot of people in general don't understand is how the human body really works inside. My daughter has had a button for awhile now. She started with GI issues and then it hither lungs.
<br />Just do the preventing that you can. Your dad sounds like he changes the subject because he is scared for your children. You know that old saying out of sight out of mind. Hang in there. It will get better with them.
<br />Hugs and prayers for your family.
<br />
<br />Cheryl mom to Malora 15 w/cf
 

Juliet

New member
Tina, You might ask the CFF to send you their DVD. I had some family members who were the same way before they saw it. I think viewing a professional production that does a really good job of explaining the disease and makes the point that prevention is critical, changed their opinions dramatically. It wasn't me telling them. And it wasn't me being 'hysterical' or 'hypocondriatic' over it. <mega groan> Now if I could only get my other Brother to watch the darn thing....

It does take everyone some time to come to grips with the diagnosis and learn to accept it. You've been very proactive doing a lot of research and educating yourself. They're not in the same situation as you so they will need time to get to the same acceptance. They haven't been experiencing the intensity of the situation like you have. I hope they come around for you soon. {{hugs}} ~J
 

Juliet

New member
Tina, You might ask the CFF to send you their DVD. I had some family members who were the same way before they saw it. I think viewing a professional production that does a really good job of explaining the disease and makes the point that prevention is critical, changed their opinions dramatically. It wasn't me telling them. And it wasn't me being 'hysterical' or 'hypocondriatic' over it. <mega groan> Now if I could only get my other Brother to watch the darn thing....

It does take everyone some time to come to grips with the diagnosis and learn to accept it. You've been very proactive doing a lot of research and educating yourself. They're not in the same situation as you so they will need time to get to the same acceptance. They haven't been experiencing the intensity of the situation like you have. I hope they come around for you soon. {{hugs}} ~J
 

Juliet

New member
Tina, You might ask the CFF to send you their DVD. I had some family members who were the same way before they saw it. I think viewing a professional production that does a really good job of explaining the disease and makes the point that prevention is critical, changed their opinions dramatically. It wasn't me telling them. And it wasn't me being 'hysterical' or 'hypocondriatic' over it. <mega groan> Now if I could only get my other Brother to watch the darn thing....

It does take everyone some time to come to grips with the diagnosis and learn to accept it. You've been very proactive doing a lot of research and educating yourself. They're not in the same situation as you so they will need time to get to the same acceptance. They haven't been experiencing the intensity of the situation like you have. I hope they come around for you soon. {{hugs}} ~J
 

Juliet

New member
Tina, You might ask the CFF to send you their DVD. I had some family members who were the same way before they saw it. I think viewing a professional production that does a really good job of explaining the disease and makes the point that prevention is critical, changed their opinions dramatically. It wasn't me telling them. And it wasn't me being 'hysterical' or 'hypocondriatic' over it. <mega groan> Now if I could only get my other Brother to watch the darn thing....

It does take everyone some time to come to grips with the diagnosis and learn to accept it. You've been very proactive doing a lot of research and educating yourself. They're not in the same situation as you so they will need time to get to the same acceptance. They haven't been experiencing the intensity of the situation like you have. I hope they come around for you soon. {{hugs}} ~J
 

Juliet

New member
Tina, You might ask the CFF to send you their DVD. I had some family members who were the same way before they saw it. I think viewing a professional production that does a really good job of explaining the disease and makes the point that prevention is critical, changed their opinions dramatically. It wasn't me telling them. And it wasn't me being 'hysterical' or 'hypocondriatic' over it. <mega groan> Now if I could only get my other Brother to watch the darn thing....
<br />
<br />It does take everyone some time to come to grips with the diagnosis and learn to accept it. You've been very proactive doing a lot of research and educating yourself. They're not in the same situation as you so they will need time to get to the same acceptance. They haven't been experiencing the intensity of the situation like you have. I hope they come around for you soon. {{hugs}} ~J
 

CFGurl16

New member
Im so sorry to hear that your childern have CF. Its not the best news to get specally over the phone well i know u can get through it..
Everything will get better over time.. after u get more used to it
 

CFGurl16

New member
Im so sorry to hear that your childern have CF. Its not the best news to get specally over the phone well i know u can get through it..
Everything will get better over time.. after u get more used to it
 

CFGurl16

New member
Im so sorry to hear that your childern have CF. Its not the best news to get specally over the phone well i know u can get through it..
Everything will get better over time.. after u get more used to it
 

CFGurl16

New member
Im so sorry to hear that your childern have CF. Its not the best news to get specally over the phone well i know u can get through it..
Everything will get better over time.. after u get more used to it
 

CFGurl16

New member
Im so sorry to hear that your childern have CF. Its not the best news to get specally over the phone well i know u can get through it..
<br />Everything will get better over time.. after u get more used to it
 
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