To speak of CF or not...

[bmombtoo]

My eyes tear up when I share that Josh has CF. As I am in the
mental health field we practice honesty and disclosrure......but I
don't tell everyone. Just people who I think need to know or if it
has something to do with the conversation. I think in trying to be
comforting some people do more harm than good. Jody, I think the
lady who mentioned the book was trying to offer you something
comforting, and later it may be a good book to read. Reading it
does not mean your son or my son will die. I know its hard to share
but sharing often brings the benefit of healing....if you cry that
s fine. CF is a very scary and sad thing and it is bound to stir up
feelings of hopelessness, fear, and anger in us all. But it also
has joy....the joy of having our children today as they are. The
joy of watching them grow and knowing that we are doing the best we
can. The joy of rejoicing that they were born now and not years ago
when there was little scientific hope.<br>
<br>
I also lost my first husband to cancer, leaving me with a 2, 11,
and 14 year old. That was a very painful and difficult time. People
often didn't know what to say and the worse thing of all is to say
nothing or ignore you.<br>
<br>
Not just Jody, but to all of us, it's okay to get some counseling,
join a support group, heck even start one. Long Term illness and
its effects on the family is of special interest to me and I am
writing my big paper for my doctorate on it. I start
working on it next semester and will be doing it for about a
year and a half. I will share any good tips that I fine.

 

[bmombtoo]

My eyes tear up when I share that Josh has CF. As I am in the
mental health field we practice honesty and disclosrure......but I
don't tell everyone. Just people who I think need to know or if it
has something to do with the conversation. I think in trying to be
comforting some people do more harm than good. Jody, I think the
lady who mentioned the book was trying to offer you something
comforting, and later it may be a good book to read. Reading it
does not mean your son or my son will die. I know its hard to share
but sharing often brings the benefit of healing....if you cry that
s fine. CF is a very scary and sad thing and it is bound to stir up
feelings of hopelessness, fear, and anger in us all. But it also
has joy....the joy of having our children today as they are. The
joy of watching them grow and knowing that we are doing the best we
can. The joy of rejoicing that they were born now and not years ago
when there was little scientific hope.<br>
<br>
I also lost my first husband to cancer, leaving me with a 2, 11,
and 14 year old. That was a very painful and difficult time. People
often didn't know what to say and the worse thing of all is to say
nothing or ignore you.<br>
<br>
Not just Jody, but to all of us, it's okay to get some counseling,
join a support group, heck even start one. Long Term illness and
its effects on the family is of special interest to me and I am
writing my big paper for my doctorate on it. I start
working on it next semester and will be doing it for about a
year and a half. I will share any good tips that I fine.

 

[bmombtoo]

My eyes tear up when I share that Josh has CF. As I am in the
mental health field we practice honesty and disclosrure......but I
don't tell everyone. Just people who I think need to know or if it
has something to do with the conversation. I think in trying to be
comforting some people do more harm than good. Jody, I think the
lady who mentioned the book was trying to offer you something
comforting, and later it may be a good book to read. Reading it
does not mean your son or my son will die. I know its hard to share
but sharing often brings the benefit of healing....if you cry that
s fine. CF is a very scary and sad thing and it is bound to stir up
feelings of hopelessness, fear, and anger in us all. But it also
has joy....the joy of having our children today as they are. The
joy of watching them grow and knowing that we are doing the best we
can. The joy of rejoicing that they were born now and not years ago
when there was little scientific hope.<br>
<br>
I also lost my first husband to cancer, leaving me with a 2, 11,
and 14 year old. That was a very painful and difficult time. People
often didn't know what to say and the worse thing of all is to say
nothing or ignore you.<br>
<br>
Not just Jody, but to all of us, it's okay to get some counseling,
join a support group, heck even start one. Long Term illness and
its effects on the family is of special interest to me and I am
writing my big paper for my doctorate on it. I start
working on it next semester and will be doing it for about a
year and a half. I will share any good tips that I fine.

 

[mneville]

Sheli- Can I ask if you know whether your 2nd child will have CF? I am 7 weeks pregnant with our second child. We are praying no CF as we went through IVF with PGD but there is always a slight chance..

I do stay positive. I work in special education so I see all children with disabilities- far worse than CF. I knew when I was pregnant, that there were no guarantees for the child we would be granted. And so he has CF. He also has blonde hair, blue eyes and an inner strength that will beat CF. No, people will not understand but I don't understand everyone else's plight in life either- it doesn't mean that I don't care.

Aidan just turned two and when I say "WHo has CF?" He says "I do" with a big grin. Then he says, "Creon, Vest.." And then we both say, "no big deal." And go on about our day. I' not saying that I don't cry about it somedays but those days are so few and far between these days. Even when he has the PICC etc...we go on. Just happy to be sharing our lives together.

Megan

 

[mneville]

Sheli- Can I ask if you know whether your 2nd child will have CF? I am 7 weeks pregnant with our second child. We are praying no CF as we went through IVF with PGD but there is always a slight chance..

I do stay positive. I work in special education so I see all children with disabilities- far worse than CF. I knew when I was pregnant, that there were no guarantees for the child we would be granted. And so he has CF. He also has blonde hair, blue eyes and an inner strength that will beat CF. No, people will not understand but I don't understand everyone else's plight in life either- it doesn't mean that I don't care.

Aidan just turned two and when I say "WHo has CF?" He says "I do" with a big grin. Then he says, "Creon, Vest.." And then we both say, "no big deal." And go on about our day. I' not saying that I don't cry about it somedays but those days are so few and far between these days. Even when he has the PICC etc...we go on. Just happy to be sharing our lives together.

Megan

 

[mneville]

Sheli- Can I ask if you know whether your 2nd child will have CF? I am 7 weeks pregnant with our second child. We are praying no CF as we went through IVF with PGD but there is always a slight chance..

I do stay positive. I work in special education so I see all children with disabilities- far worse than CF. I knew when I was pregnant, that there were no guarantees for the child we would be granted. And so he has CF. He also has blonde hair, blue eyes and an inner strength that will beat CF. No, people will not understand but I don't understand everyone else's plight in life either- it doesn't mean that I don't care.

Aidan just turned two and when I say "WHo has CF?" He says "I do" with a big grin. Then he says, "Creon, Vest.." And then we both say, "no big deal." And go on about our day. I' not saying that I don't cry about it somedays but those days are so few and far between these days. Even when he has the PICC etc...we go on. Just happy to be sharing our lives together.

Megan

 

[welshgirl]

joe wants to be secretive about cf and that's fine with me. i will tell people (neighbours even ) if it crops up in conversation. i don't feel the need to be secretive but i understand joe wanting to be.

with regards to depression and the worry of joe 's cf i am proud of how well we are all coping. lets face it we don't have a choice in the matter , joe has cf and thats that!!!!!!!<img src="i/expressions/face-icon-small-sad.gif" border="0">

i have noticed that if i get weepy maybe watching a sad film or something awful on the news i may start crying about that but it will soon turn to tears for joe and that happens every time , literally every time.

 

[welshgirl]

joe wants to be secretive about cf and that's fine with me. i will tell people (neighbours even ) if it crops up in conversation. i don't feel the need to be secretive but i understand joe wanting to be.

with regards to depression and the worry of joe 's cf i am proud of how well we are all coping. lets face it we don't have a choice in the matter , joe has cf and thats that!!!!!!!<img src="i/expressions/face-icon-small-sad.gif" border="0">

i have noticed that if i get weepy maybe watching a sad film or something awful on the news i may start crying about that but it will soon turn to tears for joe and that happens every time , literally every time.

 

[welshgirl]

joe wants to be secretive about cf and that's fine with me. i will tell people (neighbours even ) if it crops up in conversation. i don't feel the need to be secretive but i understand joe wanting to be.

with regards to depression and the worry of joe 's cf i am proud of how well we are all coping. lets face it we don't have a choice in the matter , joe has cf and thats that!!!!!!!<img src="i/expressions/face-icon-small-sad.gif" border="0">

i have noticed that if i get weepy maybe watching a sad film or something awful on the news i may start crying about that but it will soon turn to tears for joe and that happens every time , literally every time.

 

[LisaV]

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

My eyes tear up when I share that Josh has CF. As I am in the
mental health field we practice honesty and disclosrure......but I
don't tell everyone. Just people who I think need to know or if it
has something to do with the conversation. I think in trying to be
comforting some people do more harm than good. Jody, I think the
lady who mentioned the book was trying to offer you something
comforting, and later it may be a good book to read. Reading it
does not mean your son or my son will die. I know its hard to share
but sharing often brings the benefit of healing....if you cry that
s fine. CF is a very scary and sad thing and it is bound to stir up
feelings of hopelessness, fear, and anger in us all. But it also
has joy....the joy of having our children today as they are. The
joy of watching them grow and knowing that we are doing the best we
can. The joy of rejoicing that they were born now and not years ago
when there was little scientific hope.



I also lost my first husband to cancer, leaving me with a 2, 11,
and 14 year old. That was a very painful and difficult time. People
often didn't know what to say and the worse thing of all is to say
nothing or ignore you.



Not just Jody, but to all of us, it's okay to get some counseling,
join a support group, heck even start one. Long Term illness and
its effects on the family is of special interest to me and I am
writing my big paper for my doctorate on it. I start
working on it next semester and will be doing it for about a
year and a half. I will share any good tips that I fine.</end quote></div>

What good advice. I found myself feeling awkward when I first shared how severely ill my husband was, but over time it was helpful to me - especially helpful not to be treating his illness as a "family secret" which was his biological family's way.

I will be interested to read your paper. TI too am particularly interested in the effect of chronic illness on family relationships. I have learned alot from John S. Rolland's work, but haven't been able to find much else that seems really helpful for avoiding the "obvious" pitfalls. As you find sources will you share them with us?
thanks

 

[LisaV]

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

My eyes tear up when I share that Josh has CF. As I am in the
mental health field we practice honesty and disclosrure......but I
don't tell everyone. Just people who I think need to know or if it
has something to do with the conversation. I think in trying to be
comforting some people do more harm than good. Jody, I think the
lady who mentioned the book was trying to offer you something
comforting, and later it may be a good book to read. Reading it
does not mean your son or my son will die. I know its hard to share
but sharing often brings the benefit of healing....if you cry that
s fine. CF is a very scary and sad thing and it is bound to stir up
feelings of hopelessness, fear, and anger in us all. But it also
has joy....the joy of having our children today as they are. The
joy of watching them grow and knowing that we are doing the best we
can. The joy of rejoicing that they were born now and not years ago
when there was little scientific hope.



I also lost my first husband to cancer, leaving me with a 2, 11,
and 14 year old. That was a very painful and difficult time. People
often didn't know what to say and the worse thing of all is to say
nothing or ignore you.



Not just Jody, but to all of us, it's okay to get some counseling,
join a support group, heck even start one. Long Term illness and
its effects on the family is of special interest to me and I am
writing my big paper for my doctorate on it. I start
working on it next semester and will be doing it for about a
year and a half. I will share any good tips that I fine.</end quote></div>

What good advice. I found myself feeling awkward when I first shared how severely ill my husband was, but over time it was helpful to me - especially helpful not to be treating his illness as a "family secret" which was his biological family's way.

I will be interested to read your paper. TI too am particularly interested in the effect of chronic illness on family relationships. I have learned alot from John S. Rolland's work, but haven't been able to find much else that seems really helpful for avoiding the "obvious" pitfalls. As you find sources will you share them with us?
thanks

 

[LisaV]

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

My eyes tear up when I share that Josh has CF. As I am in the
mental health field we practice honesty and disclosrure......but I
don't tell everyone. Just people who I think need to know or if it
has something to do with the conversation. I think in trying to be
comforting some people do more harm than good. Jody, I think the
lady who mentioned the book was trying to offer you something
comforting, and later it may be a good book to read. Reading it
does not mean your son or my son will die. I know its hard to share
but sharing often brings the benefit of healing....if you cry that
s fine. CF is a very scary and sad thing and it is bound to stir up
feelings of hopelessness, fear, and anger in us all. But it also
has joy....the joy of having our children today as they are. The
joy of watching them grow and knowing that we are doing the best we
can. The joy of rejoicing that they were born now and not years ago
when there was little scientific hope.



I also lost my first husband to cancer, leaving me with a 2, 11,
and 14 year old. That was a very painful and difficult time. People
often didn't know what to say and the worse thing of all is to say
nothing or ignore you.



Not just Jody, but to all of us, it's okay to get some counseling,
join a support group, heck even start one. Long Term illness and
its effects on the family is of special interest to me and I am
writing my big paper for my doctorate on it. I start
working on it next semester and will be doing it for about a
year and a half. I will share any good tips that I fine.</end quote></div>

What good advice. I found myself feeling awkward when I first shared how severely ill my husband was, but over time it was helpful to me - especially helpful not to be treating his illness as a "family secret" which was his biological family's way.

I will be interested to read your paper. TI too am particularly interested in the effect of chronic illness on family relationships. I have learned alot from John S. Rolland's work, but haven't been able to find much else that seems really helpful for avoiding the "obvious" pitfalls. As you find sources will you share them with us?
thanks

 

[cfmomma]

Megan, we don't know if my baby has CF or not. This one was a surprise, we wanted more kids but were unable to make the descision to have more. We spent almost 5 years torn between our desires for more kids and the possibiltiy of having another CF child. I am so excited, but terrified! As soon as the baby is born they will take cord blood and send it to get tested, I am dreading the long wait for results. We chose not to do a CVS or amnio because of the risk. I am going to be a bundle of nerves, but we'll get through it.

 

[cfmomma]

Megan, we don't know if my baby has CF or not. This one was a surprise, we wanted more kids but were unable to make the descision to have more. We spent almost 5 years torn between our desires for more kids and the possibiltiy of having another CF child. I am so excited, but terrified! As soon as the baby is born they will take cord blood and send it to get tested, I am dreading the long wait for results. We chose not to do a CVS or amnio because of the risk. I am going to be a bundle of nerves, but we'll get through it.

 

[cfmomma]

Megan, we don't know if my baby has CF or not. This one was a surprise, we wanted more kids but were unable to make the descision to have more. We spent almost 5 years torn between our desires for more kids and the possibiltiy of having another CF child. I am so excited, but terrified! As soon as the baby is born they will take cord blood and send it to get tested, I am dreading the long wait for results. We chose not to do a CVS or amnio because of the risk. I am going to be a bundle of nerves, but we'll get through it.

 

[blopunky]

I can tell you that reading and sharing here is a great deal of
help to me. There are alot of times that I cry while reading about
others. I never just bring it up to anyone, someone may ask what he
has if I tell them to watch him a little closer today due to a new
med. or something. Other than that I don't.  My husband and I
have a hard time talking about it in any sort of serious way
because the pain is so great. What he has had to endure that most
adults never have to. And his story is so small compared to what
others have to go through. It's very hard sometimes to think of the
big picture( life span) when you get stuck on all the small things,
like him crying over something as small as someone changing the
channel because he is sick,tired and very emotional(tobi does this
to him). I know it's because he's had little sleep, he's tired of
taking his meds. (morning battle at times) and then he asks me-why
do I have to do this? Talk about ripping my heart
out.<img src="i/expressions/brokenheart.gif" border="0"><br>
But then you have to take a deep breath and go ahead. I can't let
him see how upset I am so I have to turn off the emotions and store
them away for when I can just cry it out.<br>
I don't know if I'll ever get over the tears.  Being mom or
dad, you just want to take away their fears and pain-cf amplifies
that by about 1000 I think. I myself would be uncomfortable in a
support group. But here I have been able to read about others and
how they deal with it and that helps me tremendously.<br>
Sorry for going on and on!!!<br>
Blopunky's mom

 

[blopunky]

I can tell you that reading and sharing here is a great deal of
help to me. There are alot of times that I cry while reading about
others. I never just bring it up to anyone, someone may ask what he
has if I tell them to watch him a little closer today due to a new
med. or something. Other than that I don't.  My husband and I
have a hard time talking about it in any sort of serious way
because the pain is so great. What he has had to endure that most
adults never have to. And his story is so small compared to what
others have to go through. It's very hard sometimes to think of the
big picture( life span) when you get stuck on all the small things,
like him crying over something as small as someone changing the
channel because he is sick,tired and very emotional(tobi does this
to him). I know it's because he's had little sleep, he's tired of
taking his meds. (morning battle at times) and then he asks me-why
do I have to do this? Talk about ripping my heart
out.<img src="i/expressions/brokenheart.gif" border="0"><br>
But then you have to take a deep breath and go ahead. I can't let
him see how upset I am so I have to turn off the emotions and store
them away for when I can just cry it out.<br>
I don't know if I'll ever get over the tears.  Being mom or
dad, you just want to take away their fears and pain-cf amplifies
that by about 1000 I think. I myself would be uncomfortable in a
support group. But here I have been able to read about others and
how they deal with it and that helps me tremendously.<br>
Sorry for going on and on!!!<br>
Blopunky's mom

 

[blopunky]

I can tell you that reading and sharing here is a great deal of
help to me. There are alot of times that I cry while reading about
others. I never just bring it up to anyone, someone may ask what he
has if I tell them to watch him a little closer today due to a new
med. or something. Other than that I don't.  My husband and I
have a hard time talking about it in any sort of serious way
because the pain is so great. What he has had to endure that most
adults never have to. And his story is so small compared to what
others have to go through. It's very hard sometimes to think of the
big picture( life span) when you get stuck on all the small things,
like him crying over something as small as someone changing the
channel because he is sick,tired and very emotional(tobi does this
to him). I know it's because he's had little sleep, he's tired of
taking his meds. (morning battle at times) and then he asks me-why
do I have to do this? Talk about ripping my heart
out.<img src="i/expressions/brokenheart.gif" border="0"><br>
But then you have to take a deep breath and go ahead. I can't let
him see how upset I am so I have to turn off the emotions and store
them away for when I can just cry it out.<br>
I don't know if I'll ever get over the tears.  Being mom or
dad, you just want to take away their fears and pain-cf amplifies
that by about 1000 I think. I myself would be uncomfortable in a
support group. But here I have been able to read about others and
how they deal with it and that helps me tremendously.<br>
Sorry for going on and on!!!<br>
Blopunky's mom

 

[JRPandTJP]

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

 

[JRPandTJP]

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