To speak of CF or not...

J

JRPandTJP

New member
about being positive. I just wanted to say that most of the time we are extremely positive and really don't give things too much thought. I believe with all the things that are available and with good nutrition and complimentary/alternative medicine CF is very manageable. We have hope for sure.

I do believe however, that if I ignore the more challenging emotions and uncertainty of things, I somehow can not open my life to all the wonderful possibilities. In other words I get stuck just talking myself into being happy and hopeful...it doesn't feel genuine to me inside. I have to give time to some of these things for them to resolve themselves and then the energy I need for daily life seems to come back into balance. Does that even make sense at all? I don't know...I just know when we first found out I was in denial of how much I felt the universe had failed me. Sounds selfish but at first I felt that way. I had to stay with it for awhile to let out all the guilt I felt for giving this to him. How could my love create something that would ultimately cause him to have to deal with all of the things that can come along with CF? This has been the biggy for me. But when I look deep into his eyes and stay there for a moment, he tells me using no words that he is okay with it. He wants to be here with me, with us. He wants to show the world he can do this. He is in fact on his own journey and all will be well.

I do need time to recognize where the random tears come from...where anger comes from...then I need to let it go. Let go of everything, but most of all fear. Fear gives us nothing...it only takes. I will not let CF or fear take one ounce of my life or his. It is hard work but I choose to be honest and do my best to show him a life filled with love and possibilities, for as long as we have (I do expect some grandbabies though ;-)

Jody
 
B

blopunky

New member
When blopunky was dx (at about 20months) we only told our parents.
We really didn't  feel the need to tell anyone else. When he
started  school of course his teacher had to be completely
informed because she had to mix his enzymes with the applesauce and
she was also our eyes and ears during the day. Thank the Lord we
were blessed with wonderful teachers over the years(he's in the 3rd
grade now). I also have to inform the school nurse of his condition
so she can be prepared. I also have to find out if there are other
cf kids/adults either attending the school or working there. I
never ask for names, but considering the possibility of getting
worse germs I really need to know so we can keep some distance. I
haven't really had much of the pity stuff, I get the "but he
looks so healthy" line. Then I feel as though I have to defend
him or prove to them that he really does have cf. I never ask for
special treatment for him other than bathroom breaks or sitting
closer to the trash can. I do let the teachers know if he's
especially moody(tobi does this for some reason) so that they won't
fuss to bad at him-he's fond of talking!<img src="i/expressions/face-icon-small-blush.gif" border="0"> The times that we have
had problems with other people have been at my husbands job. The
first time he had to be off (after I started working) his boss
asked why-he rarely ever needed off and he'd worked there for 15
years, so his boss is not taking "personal business" as
an answer so he tells him about our son. Turns out this was a huge
mistake! My husband was in management at the time and he started
getting more and more work from other areas piled on him-he asked
why and what do you know they demoted him!<img src="i/expressions/face-icon-small-mad.gif" border="0"> Of course we asked an
attorney friend of ours about can we do anything? Due to their
policy they can say " were just not happy with his
work" and get away with it.Talk about MAD!!!!  Turns out
that 2years later they had massive lay-offs nationwide and my
husband got laid off. Funny how the ONLY people that got laid
off(10 in his office) had exceptionally high medical costs. Go
figure.<br>
As for the depression goes-I have had times where it dragged me
down, but then I just have to remember how blessed we really are. I
know that we have an uncertain road ahead of us and there are alot
of times I HAVE to cry.  I just have to suck it up and go on
with my day. I've said it before and I'll say it again-every one
here has already helped me so much- I can only say thank you!!!!!
 <br>
<br>
We have angels among us<img src="i/expressions/heart.gif" border="0">  <br>
Blopunky's mom
 
B

blopunky

New member
When blopunky was dx (at about 20months) we only told our parents.
We really didn't  feel the need to tell anyone else. When he
started  school of course his teacher had to be completely
informed because she had to mix his enzymes with the applesauce and
she was also our eyes and ears during the day. Thank the Lord we
were blessed with wonderful teachers over the years(he's in the 3rd
grade now). I also have to inform the school nurse of his condition
so she can be prepared. I also have to find out if there are other
cf kids/adults either attending the school or working there. I
never ask for names, but considering the possibility of getting
worse germs I really need to know so we can keep some distance. I
haven't really had much of the pity stuff, I get the "but he
looks so healthy" line. Then I feel as though I have to defend
him or prove to them that he really does have cf. I never ask for
special treatment for him other than bathroom breaks or sitting
closer to the trash can. I do let the teachers know if he's
especially moody(tobi does this for some reason) so that they won't
fuss to bad at him-he's fond of talking!<img src="i/expressions/face-icon-small-blush.gif" border="0"> The times that we have
had problems with other people have been at my husbands job. The
first time he had to be off (after I started working) his boss
asked why-he rarely ever needed off and he'd worked there for 15
years, so his boss is not taking "personal business" as
an answer so he tells him about our son. Turns out this was a huge
mistake! My husband was in management at the time and he started
getting more and more work from other areas piled on him-he asked
why and what do you know they demoted him!<img src="i/expressions/face-icon-small-mad.gif" border="0"> Of course we asked an
attorney friend of ours about can we do anything? Due to their
policy they can say " were just not happy with his
work" and get away with it.Talk about MAD!!!!  Turns out
that 2years later they had massive lay-offs nationwide and my
husband got laid off. Funny how the ONLY people that got laid
off(10 in his office) had exceptionally high medical costs. Go
figure.<br>
As for the depression goes-I have had times where it dragged me
down, but then I just have to remember how blessed we really are. I
know that we have an uncertain road ahead of us and there are alot
of times I HAVE to cry.  I just have to suck it up and go on
with my day. I've said it before and I'll say it again-every one
here has already helped me so much- I can only say thank you!!!!!
 <br>
<br>
We have angels among us<img src="i/expressions/heart.gif" border="0">  <br>
Blopunky's mom
 
B

blopunky

New member
When blopunky was dx (at about 20months) we only told our parents.
We really didn't  feel the need to tell anyone else. When he
started  school of course his teacher had to be completely
informed because she had to mix his enzymes with the applesauce and
she was also our eyes and ears during the day. Thank the Lord we
were blessed with wonderful teachers over the years(he's in the 3rd
grade now). I also have to inform the school nurse of his condition
so she can be prepared. I also have to find out if there are other
cf kids/adults either attending the school or working there. I
never ask for names, but considering the possibility of getting
worse germs I really need to know so we can keep some distance. I
haven't really had much of the pity stuff, I get the "but he
looks so healthy" line. Then I feel as though I have to defend
him or prove to them that he really does have cf. I never ask for
special treatment for him other than bathroom breaks or sitting
closer to the trash can. I do let the teachers know if he's
especially moody(tobi does this for some reason) so that they won't
fuss to bad at him-he's fond of talking!<img src="i/expressions/face-icon-small-blush.gif" border="0"> The times that we have
had problems with other people have been at my husbands job. The
first time he had to be off (after I started working) his boss
asked why-he rarely ever needed off and he'd worked there for 15
years, so his boss is not taking "personal business" as
an answer so he tells him about our son. Turns out this was a huge
mistake! My husband was in management at the time and he started
getting more and more work from other areas piled on him-he asked
why and what do you know they demoted him!<img src="i/expressions/face-icon-small-mad.gif" border="0"> Of course we asked an
attorney friend of ours about can we do anything? Due to their
policy they can say " were just not happy with his
work" and get away with it.Talk about MAD!!!!  Turns out
that 2years later they had massive lay-offs nationwide and my
husband got laid off. Funny how the ONLY people that got laid
off(10 in his office) had exceptionally high medical costs. Go
figure.<br>
As for the depression goes-I have had times where it dragged me
down, but then I just have to remember how blessed we really are. I
know that we have an uncertain road ahead of us and there are alot
of times I HAVE to cry.  I just have to suck it up and go on
with my day. I've said it before and I'll say it again-every one
here has already helped me so much- I can only say thank you!!!!!
 <br>
<br>
We have angels among us<img src="i/expressions/heart.gif" border="0">  <br>
Blopunky's mom
 
M

mneville

Guest
Jody- those were great words. And I so agree. Fear is the big one. I used to find myself terrified of the "what ifs" and "whens" regarding CF. I have realized that if I fear the bad stuff to come, I am missing all the good stuff. I would be robbing Aidan of the only life he has.

Sheli- I totallu understand your nerves. Although this baby should not have CF, PGD is not 100% so they still recommend am amnio but I am so nervous about that risks involved. We don't know what to do..

Megan
 
M

mneville

Guest
Jody- those were great words. And I so agree. Fear is the big one. I used to find myself terrified of the "what ifs" and "whens" regarding CF. I have realized that if I fear the bad stuff to come, I am missing all the good stuff. I would be robbing Aidan of the only life he has.

Sheli- I totallu understand your nerves. Although this baby should not have CF, PGD is not 100% so they still recommend am amnio but I am so nervous about that risks involved. We don't know what to do..

Megan
 
M

mneville

Guest
Jody- those were great words. And I so agree. Fear is the big one. I used to find myself terrified of the "what ifs" and "whens" regarding CF. I have realized that if I fear the bad stuff to come, I am missing all the good stuff. I would be robbing Aidan of the only life he has.

Sheli- I totallu understand your nerves. Although this baby should not have CF, PGD is not 100% so they still recommend am amnio but I am so nervous about that risks involved. We don't know what to do..

Megan
 
S

sweetwhite30

New member
I do tell others about him and his c.f if it comes up and yes i have seen shows where people are less then sympathetic and very hurtful . I have had problems dealing with it myself as a mom ,it is hard to really think of the reality of things but as long as we have hope ,we can move mountains and educate these people who seem to bring these horibble books or shows to our attentions.
 
S

sweetwhite30

New member
I do tell others about him and his c.f if it comes up and yes i have seen shows where people are less then sympathetic and very hurtful . I have had problems dealing with it myself as a mom ,it is hard to really think of the reality of things but as long as we have hope ,we can move mountains and educate these people who seem to bring these horibble books or shows to our attentions.
 
S

sweetwhite30

New member
I do tell others about him and his c.f if it comes up and yes i have seen shows where people are less then sympathetic and very hurtful . I have had problems dealing with it myself as a mom ,it is hard to really think of the reality of things but as long as we have hope ,we can move mountains and educate these people who seem to bring these horibble books or shows to our attentions.
 
M

mum2kj

New member
When my daughter was little she didnt care who knew thats she had c/f, but now she is in highschool she wont let me tell anyone as she hasnt told anyone at the school. She wants to be seen as the same a everyone else. her cough is more prevalent this year and kids are noticing that her cough isnt going away and she covers this up by saying its asthma or she just gives them attitude and say's "well i like to cough" She feels that if they know, that they will treat her differently and i respect her decision to do so as it is her life that gets affected by it all the most.

When i did tell ppl that she has c/f most of them had never heard of it before and so didnt know how bad it is, I never told them how bad it is either as I don't focus on the bad aspects of it.
 
M

mum2kj

New member
When my daughter was little she didnt care who knew thats she had c/f, but now she is in highschool she wont let me tell anyone as she hasnt told anyone at the school. She wants to be seen as the same a everyone else. her cough is more prevalent this year and kids are noticing that her cough isnt going away and she covers this up by saying its asthma or she just gives them attitude and say's "well i like to cough" She feels that if they know, that they will treat her differently and i respect her decision to do so as it is her life that gets affected by it all the most.

When i did tell ppl that she has c/f most of them had never heard of it before and so didnt know how bad it is, I never told them how bad it is either as I don't focus on the bad aspects of it.
 
M

mum2kj

New member
When my daughter was little she didnt care who knew thats she had c/f, but now she is in highschool she wont let me tell anyone as she hasnt told anyone at the school. She wants to be seen as the same a everyone else. her cough is more prevalent this year and kids are noticing that her cough isnt going away and she covers this up by saying its asthma or she just gives them attitude and say's "well i like to cough" She feels that if they know, that they will treat her differently and i respect her decision to do so as it is her life that gets affected by it all the most.

When i did tell ppl that she has c/f most of them had never heard of it before and so didnt know how bad it is, I never told them how bad it is either as I don't focus on the bad aspects of it.
 
K

kayleesgrandma

New member
This was an interesting post! Reading the replys helped me see that I am not so unusual in how I react to this problem. I have a tendency to tell perfect strangers too much information. I guess I'm hoping to spread the word about cf in my own little way. And it is also my own way of dealing with it--saying it out loud, as someone said. I was the opposite of everyone here, I think, I read every book that was put out--all the books about dying of cf included. Now I only cry maybe once a day when I have her. Thanks for bringing this up.
 
K

kayleesgrandma

New member
This was an interesting post! Reading the replys helped me see that I am not so unusual in how I react to this problem. I have a tendency to tell perfect strangers too much information. I guess I'm hoping to spread the word about cf in my own little way. And it is also my own way of dealing with it--saying it out loud, as someone said. I was the opposite of everyone here, I think, I read every book that was put out--all the books about dying of cf included. Now I only cry maybe once a day when I have her. Thanks for bringing this up.
 
K

kayleesgrandma

New member
This was an interesting post! Reading the replys helped me see that I am not so unusual in how I react to this problem. I have a tendency to tell perfect strangers too much information. I guess I'm hoping to spread the word about cf in my own little way. And it is also my own way of dealing with it--saying it out loud, as someone said. I was the opposite of everyone here, I think, I read every book that was put out--all the books about dying of cf included. Now I only cry maybe once a day when I have her. Thanks for bringing this up.
 
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