When and how do I tell her?

L

lightNlife

New member
First of all, I'm glad to see you looking for help and support here. I can't think of a better online resource for that purpose. I hope that as you participate more you'll share your experiences with others too. You never know what can come of being a friend and support to others.

To answer your questions: Here's something I wrote about how my parents handled it over the years. I hope you'll find it helpful.
<a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com/2007/05/parents-communicating-reality-of-cf-to.html
">http://understandingcysticfibr...reality-of-cf-to.html
</a>
I am 27 years old, diagnosed with CF at birth.

All the best to you and your family.

Regards,
Lauren
 
L

lightNlife

New member
First of all, I'm glad to see you looking for help and support here. I can't think of a better online resource for that purpose. I hope that as you participate more you'll share your experiences with others too. You never know what can come of being a friend and support to others.

To answer your questions: Here's something I wrote about how my parents handled it over the years. I hope you'll find it helpful.
<a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com/2007/05/parents-communicating-reality-of-cf-to.html
">http://understandingcysticfibr...reality-of-cf-to.html
</a>
I am 27 years old, diagnosed with CF at birth.

All the best to you and your family.

Regards,
Lauren
 
L

lightNlife

New member
First of all, I'm glad to see you looking for help and support here. I can't think of a better online resource for that purpose. I hope that as you participate more you'll share your experiences with others too. You never know what can come of being a friend and support to others.

To answer your questions: Here's something I wrote about how my parents handled it over the years. I hope you'll find it helpful.
<a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com/2007/05/parents-communicating-reality-of-cf-to.html
">http://understandingcysticfibr...reality-of-cf-to.html
</a>
I am 27 years old, diagnosed with CF at birth.

All the best to you and your family.

Regards,
Lauren
 
L

lightNlife

New member
First of all, I'm glad to see you looking for help and support here. I can't think of a better online resource for that purpose. I hope that as you participate more you'll share your experiences with others too. You never know what can come of being a friend and support to others.

To answer your questions: Here's something I wrote about how my parents handled it over the years. I hope you'll find it helpful.
<a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com/2007/05/parents-communicating-reality-of-cf-to.html
">http://understandingcysticfibr...reality-of-cf-to.html
</a>
I am 27 years old, diagnosed with CF at birth.

All the best to you and your family.

Regards,
Lauren
 
L

lightNlife

New member
First of all, I'm glad to see you looking for help and support here. I can't think of a better online resource for that purpose. I hope that as you participate more you'll share your experiences with others too. You never know what can come of being a friend and support to others.

To answer your questions: Here's something I wrote about how my parents handled it over the years. I hope you'll find it helpful.
<a target=_blank class=ftalternatingbarlinklarge href="http://understandingcysticfibrosis.blogspot.com/2007/05/parents-communicating-reality-of-cf-to.html
">http://understandingcysticfibr...reality-of-cf-to.html
</a>
I am 27 years old, diagnosed with CF at birth.

All the best to you and your family.

Regards,
Lauren
 
A

Audz

New member
I remember I always asked my mum when I was younger why I had cf and not my sister and all that and they just answered honestly. I never thought it shortened your lifespan or anything but when I was about 12 I was cleaning out this cupboard in my house and I found all these brochures about cf and I read the 'average age is 30' thing (they were a few years old..) I was kind of shocked but I understood why my parents never told me because they didn't want me to be sad or anything.

I guess what I'm trying to say is only tell her if she asks and only bring it up if its appropriate, like don't say "oh we have to have a talk" because I think that would just scare her.. Besides she's only young she doesn't need to know about all the complications of cf yet.
 
A

Audz

New member
I remember I always asked my mum when I was younger why I had cf and not my sister and all that and they just answered honestly. I never thought it shortened your lifespan or anything but when I was about 12 I was cleaning out this cupboard in my house and I found all these brochures about cf and I read the 'average age is 30' thing (they were a few years old..) I was kind of shocked but I understood why my parents never told me because they didn't want me to be sad or anything.

I guess what I'm trying to say is only tell her if she asks and only bring it up if its appropriate, like don't say "oh we have to have a talk" because I think that would just scare her.. Besides she's only young she doesn't need to know about all the complications of cf yet.
 
A

Audz

New member
I remember I always asked my mum when I was younger why I had cf and not my sister and all that and they just answered honestly. I never thought it shortened your lifespan or anything but when I was about 12 I was cleaning out this cupboard in my house and I found all these brochures about cf and I read the 'average age is 30' thing (they were a few years old..) I was kind of shocked but I understood why my parents never told me because they didn't want me to be sad or anything.

I guess what I'm trying to say is only tell her if she asks and only bring it up if its appropriate, like don't say "oh we have to have a talk" because I think that would just scare her.. Besides she's only young she doesn't need to know about all the complications of cf yet.
 
A

Audz

New member
I remember I always asked my mum when I was younger why I had cf and not my sister and all that and they just answered honestly. I never thought it shortened your lifespan or anything but when I was about 12 I was cleaning out this cupboard in my house and I found all these brochures about cf and I read the 'average age is 30' thing (they were a few years old..) I was kind of shocked but I understood why my parents never told me because they didn't want me to be sad or anything.

I guess what I'm trying to say is only tell her if she asks and only bring it up if its appropriate, like don't say "oh we have to have a talk" because I think that would just scare her.. Besides she's only young she doesn't need to know about all the complications of cf yet.
 
A

Audz

New member
I remember I always asked my mum when I was younger why I had cf and not my sister and all that and they just answered honestly. I never thought it shortened your lifespan or anything but when I was about 12 I was cleaning out this cupboard in my house and I found all these brochures about cf and I read the 'average age is 30' thing (they were a few years old..) I was kind of shocked but I understood why my parents never told me because they didn't want me to be sad or anything.

I guess what I'm trying to say is only tell her if she asks and only bring it up if its appropriate, like don't say "oh we have to have a talk" because I think that would just scare her.. Besides she's only young she doesn't need to know about all the complications of cf yet.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted.</end quote></div>

I am totally with Emily on this one. I dont think I ever really asked, I just knew. It was always in the back of my mind. I also agree that the whole cure thing may not be 'right around the corner' so false hope would not be very encouraging but rather disappointing 23 years later. I think if you say something like, the life span now is 36, and its going up a lil bit every year. When I was a kid, the average was 30 (i am the same age as emily). There are newer and better treatments being tested out all the time. Your daughter was born at a good time science-wise and by the time she is a teen or even adult, there will probably be soooooo many more great meds out there, that the quality of life will have improved as well.

We did a ton of fundraising while I was growing up and I think that was a really great thing. We held a tennis tournament every summer with Cfer's and those that love us! Do you do the Great Strides walk at all? With that your children can both see that they are helping out fellow cf families. They can feel proud and know that they are doing a good thing. It might teach them to give back, and thus realize that they are not alone too. They can SEE what other families are like (at a safe distance). And it might even make you feel better, knowing that the money you raise is going directly to research.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted.</end quote></div>

I am totally with Emily on this one. I dont think I ever really asked, I just knew. It was always in the back of my mind. I also agree that the whole cure thing may not be 'right around the corner' so false hope would not be very encouraging but rather disappointing 23 years later. I think if you say something like, the life span now is 36, and its going up a lil bit every year. When I was a kid, the average was 30 (i am the same age as emily). There are newer and better treatments being tested out all the time. Your daughter was born at a good time science-wise and by the time she is a teen or even adult, there will probably be soooooo many more great meds out there, that the quality of life will have improved as well.

We did a ton of fundraising while I was growing up and I think that was a really great thing. We held a tennis tournament every summer with Cfer's and those that love us! Do you do the Great Strides walk at all? With that your children can both see that they are helping out fellow cf families. They can feel proud and know that they are doing a good thing. It might teach them to give back, and thus realize that they are not alone too. They can SEE what other families are like (at a safe distance). And it might even make you feel better, knowing that the money you raise is going directly to research.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted.</end quote></div>

I am totally with Emily on this one. I dont think I ever really asked, I just knew. It was always in the back of my mind. I also agree that the whole cure thing may not be 'right around the corner' so false hope would not be very encouraging but rather disappointing 23 years later. I think if you say something like, the life span now is 36, and its going up a lil bit every year. When I was a kid, the average was 30 (i am the same age as emily). There are newer and better treatments being tested out all the time. Your daughter was born at a good time science-wise and by the time she is a teen or even adult, there will probably be soooooo many more great meds out there, that the quality of life will have improved as well.

We did a ton of fundraising while I was growing up and I think that was a really great thing. We held a tennis tournament every summer with Cfer's and those that love us! Do you do the Great Strides walk at all? With that your children can both see that they are helping out fellow cf families. They can feel proud and know that they are doing a good thing. It might teach them to give back, and thus realize that they are not alone too. They can SEE what other families are like (at a safe distance). And it might even make you feel better, knowing that the money you raise is going directly to research.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted.</end quote>

I am totally with Emily on this one. I dont think I ever really asked, I just knew. It was always in the back of my mind. I also agree that the whole cure thing may not be 'right around the corner' so false hope would not be very encouraging but rather disappointing 23 years later. I think if you say something like, the life span now is 36, and its going up a lil bit every year. When I was a kid, the average was 30 (i am the same age as emily). There are newer and better treatments being tested out all the time. Your daughter was born at a good time science-wise and by the time she is a teen or even adult, there will probably be soooooo many more great meds out there, that the quality of life will have improved as well.

We did a ton of fundraising while I was growing up and I think that was a really great thing. We held a tennis tournament every summer with Cfer's and those that love us! Do you do the Great Strides walk at all? With that your children can both see that they are helping out fellow cf families. They can feel proud and know that they are doing a good thing. It might teach them to give back, and thus realize that they are not alone too. They can SEE what other families are like (at a safe distance). And it might even make you feel better, knowing that the money you raise is going directly to research.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>The kids that don't even remember being told (like myself), because we've always known, are the ones that seem better adjusted.</end quote>

I am totally with Emily on this one. I dont think I ever really asked, I just knew. It was always in the back of my mind. I also agree that the whole cure thing may not be 'right around the corner' so false hope would not be very encouraging but rather disappointing 23 years later. I think if you say something like, the life span now is 36, and its going up a lil bit every year. When I was a kid, the average was 30 (i am the same age as emily). There are newer and better treatments being tested out all the time. Your daughter was born at a good time science-wise and by the time she is a teen or even adult, there will probably be soooooo many more great meds out there, that the quality of life will have improved as well.

We did a ton of fundraising while I was growing up and I think that was a really great thing. We held a tennis tournament every summer with Cfer's and those that love us! Do you do the Great Strides walk at all? With that your children can both see that they are helping out fellow cf families. They can feel proud and know that they are doing a good thing. It might teach them to give back, and thus realize that they are not alone too. They can SEE what other families are like (at a safe distance). And it might even make you feel better, knowing that the money you raise is going directly to research.
 
C

CFHockeyMom

New member
100% with Em on this one.

Like Em, Sean has always known. We always took every opportunity to educate him and his brother about CF. In fact, it was usually his older brother that sparked a lot of our conversations.

Five may seem young to try and explain the realities of the disease to but trust me, you need to do it. We had a mom on here that had once explained how her five year old learned that he would die from CF from a friend. Basically what happened was that the friend had told his parents about the CF and they explained to him all about it. The friend in turn presented the info to the CFer in five year old speak which as you can imagine wasn't the ideal.

We have a lot of amazing CFers on here so maybe start by talking about some of them and see what kind of questions pop up. Next time she gives you static about taking enzymes or not wanting to do CPT, throw in a little reality.
 
C

CFHockeyMom

New member
100% with Em on this one.

Like Em, Sean has always known. We always took every opportunity to educate him and his brother about CF. In fact, it was usually his older brother that sparked a lot of our conversations.

Five may seem young to try and explain the realities of the disease to but trust me, you need to do it. We had a mom on here that had once explained how her five year old learned that he would die from CF from a friend. Basically what happened was that the friend had told his parents about the CF and they explained to him all about it. The friend in turn presented the info to the CFer in five year old speak which as you can imagine wasn't the ideal.

We have a lot of amazing CFers on here so maybe start by talking about some of them and see what kind of questions pop up. Next time she gives you static about taking enzymes or not wanting to do CPT, throw in a little reality.
 
C

CFHockeyMom

New member
100% with Em on this one.

Like Em, Sean has always known. We always took every opportunity to educate him and his brother about CF. In fact, it was usually his older brother that sparked a lot of our conversations.

Five may seem young to try and explain the realities of the disease to but trust me, you need to do it. We had a mom on here that had once explained how her five year old learned that he would die from CF from a friend. Basically what happened was that the friend had told his parents about the CF and they explained to him all about it. The friend in turn presented the info to the CFer in five year old speak which as you can imagine wasn't the ideal.

We have a lot of amazing CFers on here so maybe start by talking about some of them and see what kind of questions pop up. Next time she gives you static about taking enzymes or not wanting to do CPT, throw in a little reality.
 
C

CFHockeyMom

New member
100% with Em on this one.

Like Em, Sean has always known. We always took every opportunity to educate him and his brother about CF. In fact, it was usually his older brother that sparked a lot of our conversations.

Five may seem young to try and explain the realities of the disease to but trust me, you need to do it. We had a mom on here that had once explained how her five year old learned that he would die from CF from a friend. Basically what happened was that the friend had told his parents about the CF and they explained to him all about it. The friend in turn presented the info to the CFer in five year old speak which as you can imagine wasn't the ideal.

We have a lot of amazing CFers on here so maybe start by talking about some of them and see what kind of questions pop up. Next time she gives you static about taking enzymes or not wanting to do CPT, throw in a little reality.
 
C

CFHockeyMom

New member
100% with Em on this one.

Like Em, Sean has always known. We always took every opportunity to educate him and his brother about CF. In fact, it was usually his older brother that sparked a lot of our conversations.

Five may seem young to try and explain the realities of the disease to but trust me, you need to do it. We had a mom on here that had once explained how her five year old learned that he would die from CF from a friend. Basically what happened was that the friend had told his parents about the CF and they explained to him all about it. The friend in turn presented the info to the CFer in five year old speak which as you can imagine wasn't the ideal.

We have a lot of amazing CFers on here so maybe start by talking about some of them and see what kind of questions pop up. Next time she gives you static about taking enzymes or not wanting to do CPT, throw in a little reality.
 
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