RE: What age should child w/cf find out about life expectancy? pl...

[Guest guest]

When that comes up I tell the kids that those ages are for people who do not

do there treatments. That the more we take care of our bodies the longer

and healthier we will be when we are older. It works for now.

I would rather address than have them read it. I ALWAYS tell them to read

the copyright DATE of information on CF because years ago - before

treatments, the vest, meds people didn't live as long.

Good Luck. I would rather discuss sex with them than this!!

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

[Guest guest]

That is a VERY good answer!!!!!, I am going to try and remember this!!!

Deana

Mom to 12 ncf and 6 wcf

----- Original Message -----

From: ROSEMARY3FOR3wCF@...

When that comes up I tell the kids that those ages are for people who do not

do there treatments. That the more we take care of our bodies the longer

and healthier we will be when we are older. It works for now.

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

[Guest guest]

That is a VERY good answer!!!!!, I am going to try and remember this!!!

Deana

Mom to 12 ncf and 6 wcf

----- Original Message -----

From: ROSEMARY3FOR3wCF@...

When that comes up I tell the kids that those ages are for people who do not

do there treatments. That the more we take care of our bodies the longer

and healthier we will be when we are older. It works for now.

Rosemary from New York with 3 children with CF -

they are 12.5, 10, 6......

I coined the phrase " BREATHE DAMMIT " ; we have a dog we named -are you ready

for this - TOBI after their medication!!! At least it wasn't albuterol or

Coly...

[Guest guest]

My daughter Regina was 8 when she found out the life expectancy. I did not

even know how she found out. It was very difficult for me to talk to her, but

it proved to her that I would always be available to tell her the truth. She

even asked if she was going to die of CF, and I said not for a long time.

Thirty-two years is along way off and they might have a cure before then.

That's why we do your therapy every day and make sure you take your medicine.

She and I both cried a little, but it was the beginning of her ability to

trust me with scary questions. She and I have had many more serious talks

since she is now 15. I feel that my honest answers at 8 years have allowed

her to trust me.

Thanks,

Theresa

[Guest guest]

In a message dated 4/22/2003 10:49:34 PM Central Daylight Time,

SamulskiT@... writes:

> My daughter Regina was 8 when she found out the life expectancy. I did not

> even know how she found out. It was very difficult for me to talk to her,

> but

> it proved to her that I would always be available to tell her the truth.

> She

> even asked if she was going to die of CF, and I said not for a long time.

> Thirty-two years is along way off and they might have a cure before then.

> That's why we do your therapy every day and make sure you take your

> medicine.

> She and I both cried a little, but it was the beginning of her ability to

> trust me with scary questions. She and I have had many more serious talks

> since she is now 15. I feel that my honest answers at 8 years have allowed

> her to trust me.

> Thanks,

> Theresa

My ten year old has asked me the same question and I told her that they have

lots of new drugs now and they really have know way of know how long someone

will live with CF because these drugs were not available then. I said you

could get hit by a car too. Know one knows what they are going to die of. All

we can do is everything the doctors tell us to do so your lungs don't get

damaged. DebA

[Guest guest]

GREAT JOB MOM!! It is so very helpful when you can talk openly with kids.

regardless of the subject..There are some that must be really especially

dealt with BUT still do it .Each person to be handled differently too-- Best

wishes for you, sounds like you have it under control .

LOVE & HUGS, grandmomBEV

Re: What age should child w/cf find out about life

expectancy? pl...

My daughter Regina was 8 when she found out the life expectancy. I did not

even know how she found out. It was very difficult for me to talk to her,

but

it proved to her that I would always be available to tell her the truth. She

even asked if she was going to die of CF, and I said not for a long time.

Thirty-two years is along way off and they might have a cure before then.

That's why we do your therapy every day and make sure you take your

medicine.

She and I both cried a little, but it was the beginning of her ability to

trust me with scary questions. She and I have had many more serious talks

since she is now 15. I feel that my honest answers at 8 years have allowed

her to trust me.

Thanks,

Theresa