Re: new hereAMY

[Guest guest]

I just saw a total mirror reflection of myself when I read your post. I, as

you see from my signature lines, also have 3 children. My cfer is now 12

years old. We used to go to a CF Clinic in Memphis, but now we go to

Birmingham,

Alabama. Birmingham is 3 hrs from here, and Memphis is 2 hours. I had many

of the same concerns, and I am sure almost everyone else here has had too.

Let me just try to persuade you to remember what one of the older cfers on a

cf site once told me, which is a wonderful motto that we try to live by.

They said, I have cf, but cf doesn't have me.

I know all too well how hard it is to live a normal life with a child who has

cf, never mind the time it takes to give meds, treatments, hospital stays,

doctor visits, etc. But a normal life is soooo important. Our pediatrician

told me, after was diagnosed and we finally realized what was going on,

to enjoy the little things, to always spend as much time as possible with the

children, but especially while was so young, to try to spend double the

time with the other two. At first I thought this was not fair to .

She didn't meant to ignore . I questioned her and she said that she

meant that the day would come, and it sure has, when we would be spending double

the time with in the hospital, at doctors, doing treatments, etc. She

also said to include the other two in as much of the caring of as

possible. They know almost as much as I do about the disease. My oldest is

writing her paper in Honors English about CF. , who is 17, gave

her insulin shot the other night for the first time. She wanted to and

wanted her to do it. After had surgery to get her port in January,

she wanted no one but her big sister after surgery. Now, that was unusual.

has always been a momma's girl, but it didn't hurt me at all. I

realized

that would be able to care for should I not be able to.

They are not close all the time, they do argue like normal. But when it comes

to

and her CF, is extremely protective. She has even decided

to be a Pulmonologist. There is so much more that I could tell you, but I will

not try to overwhelm you. I clearly remember walking around in a daze for

like the first year after was diagnosed. One day I finally woke up, I

think.

Anyway, I do hope all is well with you and yours. Please let me know if you

need anything that I might can help you with. There is so much information

associated with CF and you will realize that there is probably no way to ever

learn it all. Actually, I think that is good, because that means there is

always something being learned about the disease and hopefully that will help

lead

to a cure.

OK, I'll stop now. Please remember we are all here for you.

Love and Hugs,

Sue Pettit of Tupelo, Mississippi

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing baseball, football, band, and whatever

else he can get into, and (12 wcf) into all sports, enjoying lots of

friends, running full speed and doing all she can---diagnosed at 8 days of age

at

LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctors

Lyrene and Makris (and lots of other wonderful folks, of course) at UAB

Children's Hospital in Birmingham, Alabama