Still Coping ~ Haven't Posted in a While

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Alyssa

New member
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.
 
A

Alyssa

New member
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.
 
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okok

New member
Hi

Jodi, I'm so glad to hear you say this (your above post.) I've sort of been thinking about this issue alot lately and come to the same conclusion. My dd is an incredible person and i love her for who she is which is completely unrelated to any syndrome or disease that she has. I have been sick with fear but there are others in my life who are in denial and may always be in that place. I've spent alot of time feeling angry about it but the truth is i can't see how it would help my daughter if they felt differently. Lately i even feel grateful that they are there to just press on loving her for who she is and to continually recognize all the wonderful things about her. Why should this diagnosis affect their view of her? She is still exactly the same person she was before we suspected anything could be wrong. I think it is good for her to be treated like a healthy, strong, smart, normal kid which is what she is.

Still i think there is a fine line between denial and letting her illness dominate our life.... she needs to know the importance of staying healthy and i am really afraid that one day she might be in denial herself. Also i don't want her to feel in any way ashamed of herself....so i'm really struggling with finding a way to maintain the balance since dh will probably always be in denial.

Anyway lemonstolemonade i don't really know what to say except don't be too hard on yourself about the denial. i think it is ok right now. I love the wonderful and supportive community on this board but i have to try to stay away because otherwise fear and stress take over. i think you will grow and change over time and that when the time comes you will have the strengh to be supportive of your daughter and to face her illness. As a mother, you don't really have any other choice right? (that is what i tell myself anyway)
 
O

okok

New member
Hi

Jodi, I'm so glad to hear you say this (your above post.) I've sort of been thinking about this issue alot lately and come to the same conclusion. My dd is an incredible person and i love her for who she is which is completely unrelated to any syndrome or disease that she has. I have been sick with fear but there are others in my life who are in denial and may always be in that place. I've spent alot of time feeling angry about it but the truth is i can't see how it would help my daughter if they felt differently. Lately i even feel grateful that they are there to just press on loving her for who she is and to continually recognize all the wonderful things about her. Why should this diagnosis affect their view of her? She is still exactly the same person she was before we suspected anything could be wrong. I think it is good for her to be treated like a healthy, strong, smart, normal kid which is what she is.

Still i think there is a fine line between denial and letting her illness dominate our life.... she needs to know the importance of staying healthy and i am really afraid that one day she might be in denial herself. Also i don't want her to feel in any way ashamed of herself....so i'm really struggling with finding a way to maintain the balance since dh will probably always be in denial.

Anyway lemonstolemonade i don't really know what to say except don't be too hard on yourself about the denial. i think it is ok right now. I love the wonderful and supportive community on this board but i have to try to stay away because otherwise fear and stress take over. i think you will grow and change over time and that when the time comes you will have the strengh to be supportive of your daughter and to face her illness. As a mother, you don't really have any other choice right? (that is what i tell myself anyway)
 
O

okok

New member
Hi

Jodi, I'm so glad to hear you say this (your above post.) I've sort of been thinking about this issue alot lately and come to the same conclusion. My dd is an incredible person and i love her for who she is which is completely unrelated to any syndrome or disease that she has. I have been sick with fear but there are others in my life who are in denial and may always be in that place. I've spent alot of time feeling angry about it but the truth is i can't see how it would help my daughter if they felt differently. Lately i even feel grateful that they are there to just press on loving her for who she is and to continually recognize all the wonderful things about her. Why should this diagnosis affect their view of her? She is still exactly the same person she was before we suspected anything could be wrong. I think it is good for her to be treated like a healthy, strong, smart, normal kid which is what she is.

Still i think there is a fine line between denial and letting her illness dominate our life.... she needs to know the importance of staying healthy and i am really afraid that one day she might be in denial herself. Also i don't want her to feel in any way ashamed of herself....so i'm really struggling with finding a way to maintain the balance since dh will probably always be in denial.

Anyway lemonstolemonade i don't really know what to say except don't be too hard on yourself about the denial. i think it is ok right now. I love the wonderful and supportive community on this board but i have to try to stay away because otherwise fear and stress take over. i think you will grow and change over time and that when the time comes you will have the strengh to be supportive of your daughter and to face her illness. As a mother, you don't really have any other choice right? (that is what i tell myself anyway)
 
L

lemonstolemonade

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JRPandTJP</b></i>

CF is asking nothing of you at the moment, so savor it and take it all in...forget about even ;-)</end quote></div>


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

i think you will grow and change over time and that when the time comes you will have the strengh to be supportive of your daughter and to face her illness. As a mother, you don't really have any other choice right? (that is what i tell myself anyway)</end quote></div>

This added perspective is wonderful. Thank you. My hubby and I spent several hours the other night talking about my anxiety related to DD's diagnosis. We both agreed that for her, we need to be more vigilant about friends and family washing hands, etc. and doing more like that. We do, but BECAUSE she is so healthy, we get funny looks and we're both non-confrontational people, so we just "let is slide." That isn't fair to our daughter. We've got to do a better job about that, in general.

Alyssa, It was so great to hear from you!!!

I've missed everyone so much.

Em
 
L

lemonstolemonade

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JRPandTJP</b></i>

CF is asking nothing of you at the moment, so savor it and take it all in...forget about even ;-)</end quote></div>


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

i think you will grow and change over time and that when the time comes you will have the strengh to be supportive of your daughter and to face her illness. As a mother, you don't really have any other choice right? (that is what i tell myself anyway)</end quote></div>

This added perspective is wonderful. Thank you. My hubby and I spent several hours the other night talking about my anxiety related to DD's diagnosis. We both agreed that for her, we need to be more vigilant about friends and family washing hands, etc. and doing more like that. We do, but BECAUSE she is so healthy, we get funny looks and we're both non-confrontational people, so we just "let is slide." That isn't fair to our daughter. We've got to do a better job about that, in general.

Alyssa, It was so great to hear from you!!!

I've missed everyone so much.

Em
 
L

lemonstolemonade

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JRPandTJP</b></i>

CF is asking nothing of you at the moment, so savor it and take it all in...forget about even ;-)</end quote></div>


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

i think you will grow and change over time and that when the time comes you will have the strengh to be supportive of your daughter and to face her illness. As a mother, you don't really have any other choice right? (that is what i tell myself anyway)</end quote></div>

This added perspective is wonderful. Thank you. My hubby and I spent several hours the other night talking about my anxiety related to DD's diagnosis. We both agreed that for her, we need to be more vigilant about friends and family washing hands, etc. and doing more like that. We do, but BECAUSE she is so healthy, we get funny looks and we're both non-confrontational people, so we just "let is slide." That isn't fair to our daughter. We've got to do a better job about that, in general.

Alyssa, It was so great to hear from you!!!

I've missed everyone so much.

Em
 
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