Glad to be here

[Guest guest]

Hey everyone!

We just called the Make A Wish Foundation today. Someone is supposed to get

in touch with us in the next couple of days to set up an appointment. They

will ask what he wants then. I guess he's going to ask for a shopping

spree. He's only 5 years old. I wonder if he'll grab things off the shelf

or just get a couple of things. I'm not sure how they would allow him to do

it. He also wants very much too bring along our next door neighbor who just

turned 9. He loves him to death! Is this allowed? Has anyone else had a

shopping spree? I'd like to know how it went.

They sent us a letter stating that if we didn't take his wish now then they

would temporarily put it on hold. That means the Dr. would have more

paperwork and we'd need to get referred again. So I guess while he still has

his health and he's not sick we're going to do it. They have 22 kids on hold

for they're wish so they want to do some now and not all at once. This is

only the Northeastern PA chapter!

Well, I hope to hear from someone soon.

Take Care,

mom to w/CF and Alyssa w/o CF and maid to Russ ( my husband )

From Pennsylvania

[Guest guest]

I'm not sure why that got posted twice. It took awhile for it to go out.

Anyway, that was about Make a Wish. I got off of my subject line.

I wanted to let you all know that before I came to this list I thought that

all families dealing with CF went through the same things. I now know that

every family is different. I didn't know that CF er's sometimes had to have

G-Tubes or things to that effect.

I always thought that we had to sacrifice alot. I now know that there are

other families out there that sacrifice even more.

It may be that we're not sacrificing anything but we can't do somethings that

normal families do.

Like sports, how do we sign our kids up for that stuff when we have

treatments to get or how about siblings? Are they supposed to stay home too?

I guess I'm feeling left out of alot of things.

Help!

from PA

[Guest guest]

Hi , my oldest daughter had a shopping spree for her wish, she bought

along a friend and her sister and me..... We also had a limo, lunch.... They

gave her $2000.00 and beleive me a 19 year old can spend that fast......My

youngest daughter wish was to meet the backstreet boys.. Not only did we meet

them they flew us to north carolina, had a limo to take us to airport and a

car for us for 5 days. then concert tickets, plus we got to spend a hour with

us and the backstreetboys.. the one ones crying....plus lunch the day of the

concert , with a limo for that day. and hoteland my daughter was on the news

out there...and a limo waiting for us when we got home. and money for the

five days,, they are unbelieveable. patty

[Guest guest]

,

I don't know about the PA area, but the are in Alabama is really terriffic.

My nephew got his wish at about the same age. My sis wanted the trip to

disney but at that age, Rodney was terrified of All big hairy creatures (like

Mickey!)

They decided that since he had not been ot a " real " toy sore before that he

could go to Toys-R-Us. The invited Grandma " Mink " to go along as well.

They let him fill up 4 shopping carts of toys, games, vides's, etc. And when

he got the big red firetruck with the hook & ladder and asked if he could get

one for his cousin Zach---they thought he was sooooooooo sweet! He also got

one of the electric jeeps with passenger seat and room in the back for their

" stuff " .

We still like to look at the video (the foundation people made) and since

he's almost 12 he looks so darned big now!!

Contact me if you want to with any other questions. cyxty5rss@...

I never pass a Make A Wish Foundation donation jar any more without putting

something in it " cause I know how great they are!

Have fun!

bj

[Guest guest]

,

I know it must be hard with other kids around with a cf'er. Good look in

juggling the ones with and the ones without.

The care of my nephew Rodney is about 4 hours a day. That keeps my sis very

busy since she is a full time worker too.

The rest of the family try to help out but we all know the major brunt of it

is on her.

I will tell you like the family told me when I moved back to Alabama and

wanted to know how to deal with a sick nephew.

They told me that they " just loved him " . Since I've been back here with my

family I ahve learned that they were right.

I have another nephew who is not sick and sometimes it is a trip trying to do

stuff that both want to and can do. Either way, I always " just love

them " ----BOTH!

Aunt bj

[Guest guest]

Grandma Bev!

Has anyone ever told you that you are GREAT!

I have seen my sis do so much more than other mom's have to do and yet she is

still going strong.

The vest has greatly improved her life! Before the vest she was doing pt 2

and sometimes 3 times a day-------single mom---------all by herself!

My other sis is great too but I know she doesn't have nearly as much energy

as the one that has the cf chid.

CF Mom's are just Special---not just the cf kids!

And Granny's too!

I love the responses you give and the warmth in your messages!

Keep up the good work GrannyBev!

With a warm heart,

Aunt B

[Guest guest]

Your kids can not only DO sports BUT excel in them. Best thing in the world

is to do ALL they can do. Fit the treatments around the practices, games,

etc. It isn't any harder then having to jungle picking up this one, getting

to store, getting dinner ready etc. My granddaughter is one of three girls.

She is now 18 and has CF, She has been the star on her high schools Varsity

Basketball team ------MVP and also the soccer goalie. She is getting ready

to go off to college & is an honor student --Going on scholarships too. She

does her pulmozyme at night with vest on,- after or before practice....while

doing homework / playing on computer. She also just puts her enzymes in her

purse or game bag. That is her problem-she had a mecium iliues at birth &

had surgery , but,. not sick any so far......it isn't always easy for

you ----or them---, but doing all the stuff with several kids , your dead

tired too...Being a chauffeur ,nurse, cook, maid, & MOTHER isn't all that

easy either. Then dentist , dr. appt's , even without CF aren't easy to

juggle-BUT, we all get thru it. my daughter,Kelley(mom to ERIN(pwcf) also

teaches school -gourmet cooking (they also do all the special meeting

refreshments & meal for home games for the teams........and she chaperons

(away games), the cheerleaders as her other 2 daughters are

cheerleaders.(one has a heart valve problem and goes to MAYO clinic once a

year for that too.-) all three in high school -------YES, YOU MOMS of PWCF

are really powerhouses & you will be able to do it great.!! let the kiddo

start out on a trampoline. a wee one, see what they want as far as

sports ----all don't want it........let them do whatever they are able to do

remember they have CF ...it isn't THEM..........Siblings do whatever they

would do, take turns babysitting if one is ill ....as you would if it were

chicken pox, etc. Just a bit more planning ....sitters-hubby & you take

turns going, etc. It can be worked out....:):) your clever -you can do

it!!

I know from your previous posts --your a great mom and are learning all you

can...You & your wee one will be great .........

I admire you very much. take care....

LOVE & HUGS, grandmomBEV

Re: Glad to be here

I'm not sure why that got posted twice. It took awhile for it to go out.

Anyway, that was about Make a Wish. I got off of my subject line.

I wanted to let you all know that before I came to this list I thought that

all families dealing with CF went through the same things. I now know that

every family is different. I didn't know that CF er's sometimes had to have

G-Tubes or things to that effect.

I always thought that we had to sacrifice alot. I now know that there are

other families out there that sacrifice even more.

It may be that we're not sacrificing anything but we can't do somethings

that

normal families do.

Like sports, how do we sign our kids up for that stuff when we have

treatments to get or how about siblings? Are they supposed to stay home

too?

I guess I'm feeling left out of alot of things.

Help!

from PA

[Guest guest]

GrandmomBev,

You are one cool person. I can't agree more strongly with you words of

wisdom. Being a mom is being a juggler. I always find myself saying " if only

I had the arms of an octopus... I'd be set! "

,

You are wise person, and a great mom, I have read your words.

Having a PWCF (great designation!) justs adds another complex ingredient

into the recipe, but loving parents can rise to occassion, we do. Managing

at times is extremely stressful and riding the passages and finding strength

and balancing, or trying to, and trying not too get too anxious...this is

the tough part, especially when the kids feel ill...

I don't have answers here,.... but I find the more I do, the more I can do.

I'm a full time mom to two kids, with gymastics, baseball, karate etc etc,

part-time registered massage therapist, part-time university student (1

course only_physiology), dinner cooker, cleaner-upper, photo taker, dog

walker etc. etc.. Life shifts when the kids get sick, Everything gets

turned topsy turvy.. this is life. I try and remember to play !!!To Be

positive (my blood type). We do pottery class as a family. This is a great

thing. I'm amazed at what the kids can do. Right now Noah would like to go

to university on an athletic scholarship and be on their baseball team (age

10)(not sure what University, should ask him) and wouldn't mind being a

cross between Britney Spears and a gymnast (age 7). I say...go for it.

Years ago when I first found out had CF someone told me once that

having a child with cf was a gift, I didn't quite know what he was talking

about at the time, but now I get glimpses... lots of them...

Best wishes

I like the idea of a mom's retreat. Does anyone know if they exist up here

in Canada(Toronto region).

ps. What's a normal family anyway?!?!

on 1/28/02 9:20 PM, bev at bevd@... wrote:

> Your kids can not only DO sports BUT excel in them. Best thing in the world

> is to do ALL they can do. Fit the treatments around the practices, games,

> etc. It isn't any harder then having to jungle picking up this one, getting

> to store, getting dinner ready etc. My granddaughter is one of three girls.

> She is now 18 and has CF, She has been the star on her high schools Varsity

> Basketball team ------MVP and also the soccer goalie. She is getting ready

> to go off to college & is an honor student --Going on scholarships too. She

> does her pulmozyme at night with vest on,- after or before practice....while

> doing homework / playing on computer. She also just puts her enzymes in her

> purse or game bag. That is her problem-she had a mecium iliues at birth &

> had surgery , but,. not sick any so far......it isn't always easy for

> you ----or them---, but doing all the stuff with several kids , your dead

> tired too...Being a chauffeur ,nurse, cook, maid, & MOTHER isn't all that

> easy either. Then dentist , dr. appt's , even without CF aren't easy to

> juggle-BUT, we all get thru it. my daughter,Kelley(mom to ERIN(pwcf) also

> teaches school -gourmet cooking (they also do all the special meeting

> refreshments & meal for home games for the teams........and she chaperons

> (away games), the cheerleaders as her other 2 daughters are

> cheerleaders.(one has a heart valve problem and goes to MAYO clinic once a

> year for that too.-) all three in high school -------YES, YOU MOMS of PWCF

> are really powerhouses & you will be able to do it great.!! let the kiddo

> start out on a trampoline. a wee one, see what they want as far as

> sports ----all don't want it........let them do whatever they are able to do

> remember they have CF ...it isn't THEM..........Siblings do whatever they

> would do, take turns babysitting if one is ill ....as you would if it were

> chicken pox, etc. Just a bit more planning ....sitters-hubby & you take

> turns going, etc. It can be worked out....:):) your clever -you can do

> it!!

> I know from your previous posts --your a great mom and are learning all you

> can...You & your wee one will be great .........

> I admire you very much. take care....

>

> LOVE & HUGS, grandmomBEV

>

>

> Re: Glad to be here

>

>

> I'm not sure why that got posted twice. It took awhile for it to go out.

> Anyway, that was about Make a Wish. I got off of my subject line.

> I wanted to let you all know that before I came to this list I thought that

> all families dealing with CF went through the same things. I now know that

> every family is different. I didn't know that CF er's sometimes had to have

> G-Tubes or things to that effect.

> I always thought that we had to sacrifice alot. I now know that there are

> other families out there that sacrifice even more.

> It may be that we're not sacrificing anything but we can't do somethings

> that

> normal families do.

> Like sports, how do we sign our kids up for that stuff when we have

> treatments to get or how about siblings? Are they supposed to stay home

> too?

> I guess I'm feeling left out of alot of things.

> Help!

> from PA

>

>

>

[Guest guest]

THANK you. ! Thank you soooo much. I feel you all are very special , that is

why it is so easy to speak to each of you. There isn't anything but nice to

say to you .All are doing so much & trying so very hard for their special

families. Aunts and grandmoms are there and it is just love that holds them

together as they toil thru all that is needed done .with their precious

smiles:):)

have a great week .....lovely new year.(& thanks )

LOVE & HUGS< grandmomBEV

Re: Glad to be here

Grandma Bev!

Has anyone ever told you that you are GREAT!

I have seen my sis do so much more than other mom's have to do and yet she

is

still going strong.

The vest has greatly improved her life! Before the vest she was doing pt 2

and sometimes 3 times a day-------single mom---------all by herself!

My other sis is great too but I know she doesn't have nearly as much energy

as the one that has the cf chid.

CF Mom's are just Special---not just the cf kids!

And Granny's too!

I love the responses you give and the warmth in your messages!

Keep up the good work GrannyBev!

With a warm heart,

Aunt B