Re: make a wish, etc...

March 13, 2003

You are not a weak person at all. In fact I think you are very strong to be

able to admit in writing what I am sure is dreaded by all on this list, yet

we, myself in particular, are too afraid to say out loud. I know we are all

strong on the exterior, put up a good front for our kids, but are truly

horrified on the inside about the path we will travel in our journey through

this disease.

I haven't contacted make-a-wish for my son yet. The reason? I'm scared to

death to think about him having to make one big wish. I'm scared of how it

might affect him, you know, the whole idea of , he's a terminally ill child,

so this is one of the last big bangs,etc... In no way is he " sick enough "

now, but I also worry about waiting until he is sick that he needs oxygen

24/7 becuase would he really enjoy whatever he wished for?

Don't worry about the motorcycle too much. Our whole family has been riding

motorcycles since we could all hang on! In fact, before Nick was diagnosed I

used to put him in the front facing baby backpack, strap him onto myself and

take him for a ride on my bike or put his car seat in our dune buggy and putt

around the dunes. It was the only way to get him to sleep. The gentle

rumble of the engine and swaying as we went over the bumps in the sandwould

lull him into a peaceful sleep! then I could go ricky racing in the desert

myself! (Sometimes us moms need a break) Of course, my mother, husband, or

other family member would be at the trailer watching him and his older

brother.

Amber

Nick's mom

March 13, 2003

Golly , You just had a grand (???) day , didn't you. I know it was fine

with the med clinic part BUT. YES, It isn't unusual for the feelings you

had. There are others who have had them too. BUT, you said it right

,When something will make them so happy, why not.

I feel like they do so much , & after awhile-like you said, its normal

day -WHY shouldn't they get a special day/week ?? I think they earned it

-and so do you parents. WHY not have the pleasure of seeing them " win "

something fun & great in their eyes. having this wish IS NOT SAYING THEY

ARE DYING-that was the old school thinking when it was started. BUT.

that isn't today's thing. Go when they can really enjoy. They work like

crazy to live to 100 !!

Who really knows when we each will die-with or with-out CF. so mommy, do

as you did. Just let have at it :) Go for it :): and ENJOY.

God Bless you & your precious family. keep us updated

LOVE & HUGS, grandmomBEv

make a wish, etc...

Hello everyone,

Well, we went to clinic yesterday and all in all it went good. The

boys talked to the social worker about make a wish. She said we should

be getting contacted from them shortly. I have to tell you, I was

sitting there listening to the kids talk to her and this big knot, about

the size of a softball, hung in my throat. I couldn't get rid of it.

She asked me if it was all right with me, I couldn't really talk.

Basically shaking my head. I don't know why I have such a hard time

with this. It's like admitting defeat. If the boys do the make a wish,

I am saying " OK, my kids have cf & they are not going to get better. "

Does that make any sense at all?

I know, I am keeping it in my mind that they would enjoy it. Its a

once in a lifetime thing, something that I could never do for them. I

just feel like I am giving in to the idea that my kids have a disease

that will take them, eventually. Man, thats a hard one to swallow. I

guess I live day by day not thinking of cf. The meds, treatments,

etc.... are just a normal part of life. Maybe it is that I don't want

to allow myself to think about it. I guess I am a weak persoon, because

I can't handle the thought of it.

Anyway, enough rambling from me.

wants to go play basketball with Shaq. Which I think is neat.

Although I am sure probably wouldn't come up to his knee caps.

LOL He is a little guy. If not he wants to meet the guy that plays on

Like Mike. Has anyone seen it? Who is the guy that plays (sp)?

just idolizes him.

doesn't really know what he wants. He has mentioned a 4 wheeler,

which I am not really liking. I think they are a bit too dangerous.

He's only 11. I know probably over protective and stupid of me, but

what can I say. So, we'll see.

Oh, I asked the team some about the vitamin D thing and sunlight.

They said that yes 20 minutes in the sun will give vitamin D, But, the

problem is absorption. They also said that ADEKS are a good vitamin.

And not to neccessarily give a multi vitamin with it. They said that

that is why they monitor vitamin levels. If they need something they

give it, if the kids are not low on some, that sometimes more is not a

good thing. So, I guess I will keep them on ADEKs, w/ extra K.

s levels are fine.

Welp, I guess that is all for now. I need to get thing s done around

here.

Vondie

March 13, 2003

Amber,

We haven't contacted Make-A-Wish yet, either, but it is because Levi

is only five and we want the wish to be his own (not just Mommy

wanting to go to Florida again!)

I wouldn't let him think it's got to do with death at all, though. I

would approach it as being a reward for doing all the day-to-day junk

that having cf brings (aerosols, vest, p.t., meds, clinic visits,

painful or scary proceedures, etc.)

Your description of riding motorcycles makes me want one, too! There

should be a wish foundation for parents!

~

mommy to 3, 1 with cf

>

> I haven't contacted make-a-wish for my son yet. The reason? I'm

scared to

> death to think about him having to make one big wish. I'm scared

of how it

> might affect him, you know, the whole idea of , he's a terminally

ill child,

> so this is one of the last big bangs,etc... In no way is he " sick

enough "

> now, > Amber

> Nick's mom

March 13, 2003

To start with, the guy that played Tracey in " Like Mike " is

Chestnut--he's been in a lot of films. That's a cool wish--him or Shaq!

Wow!!

And I agree totally about the feelings about the 4-wheeler--I would be

worried too--worried mom in me coming out, too! LOL Right now my daughter

is learning to drive--she got her permit already--and I am having a he** of

a time with it!! I get so nervous--good thing for my husband--he's teaching

her, and manages to be cool as a cucumber about it, too!

Now, to get to the issue of a Wish. I had a hard time with it, too. Cody

did his 2 years ago when he was 5--we wanted to wait, but he kept seeing the

commercials and hounded us over and over until we relented. And I'm glad we

did--his health was terrific then, and the look in the eyes of a small child

(we went to Orlando) was a joy to see. It was hard admitting my child was

" sick " enough to receive a wish--the old stigma of " the child that gets a

wish gets it because he/she is dying " is still there, even though it's not

true anymore. Most of the children that were there at the resort were ill

with things that they would have for the long haul--some were children that

would, God willing, one day recover (such as cancer). The Make-A-Wish

program is phenomenal--I can't praise it enough! So, in other words, what

you felt was soooooooo normal--just like the anger and frustration we feel

sometimes, and the depression that can hit like a brick some days, making

you want to just go lay down and cover your head and pretend it's all a bad

dream. It's one of the steps in learning to deal with this disease--and

from where I stand, it's still a HELL of a long way up that darn staircase!!

LOL

Enjoy those wishes--take LOTS of pictures!! We have lots of pics and video,

and will pop the video in still and laugh and laugh. My favorite part was

the fact that all Cody wanted to do when we got there was go on the " Tower

of Terror " at Disney MGM. So, since we went over his birthday, we went

there on his birthday and went on it. He was SOOOO excited--and when we got

off, Mark and a were saying " Wow--that was SO COOL!! " And I looked down

at Cody and said, " So, how was it? " He looked up at me and said, " I am

NEVER going on that again!!! Well...maybe when I'm nine--but not til

then!!! " LOL LOL It was so funny! So, we're going back in 2 years when

he's nine!

S., mom to a (14, nocf), DJ (8, nocf) and Cody (7, pwcf)

make a wish, etc...

> Hello everyone,

> Well, we went to clinic yesterday and all in all it went good. The boys

talked to the social worker about make a wish. She said we should be

getting contacted from them shortly. I have to tell you, I was sitting

there listening to the kids talk to her and this big knot, about the size of

a softball, hung in my throat. I couldn't get rid of it. She asked me if

it was all right with me, I couldn't really talk. Basically shaking my

head. I don't know why I have such a hard time with this. It's like

admitting defeat. If the boys do the make a wish, I am saying " OK, my kids

have cf & they are not going to get better. " Does that make any sense at

all?

> I know, I am keeping it in my mind that they would enjoy it. Its a once

in a lifetime thing, something that I could never do for them. I just feel

like I am giving in to the idea that my kids have a disease that will take

them, eventually. Man, thats a hard one to swallow. I guess I live day by

day not thinking of cf. The meds, treatments, etc.... are just a normal

part of life. Maybe it is that I don't want to allow myself to think about

it. I guess I am a weak persoon, because I can't handle the thought of it.

> Anyway, enough rambling from me.

>

> wants to go play basketball with Shaq. Which I think is neat.

Although I am sure probably wouldn't come up to his knee caps. LOL

He is a little guy. If not he wants to meet the guy that plays on Like

Mike. Has anyone seen it? Who is the guy that plays (sp)?

just idolizes him.

> doesn't really know what he wants. He has mentioned a 4 wheeler,

which I am not really liking. I think they are a bit too dangerous. He's

only 11. I know probably over protective and stupid of me, but what can I

say. So, we'll see.

>

> Oh, I asked the team some about the vitamin D thing and sunlight. They

said that yes 20 minutes in the sun will give vitamin D, But, the problem is

absorption. They also said that ADEKS are a good vitamin. And not to

neccessarily give a multi vitamin with it. They said that that is why they

monitor vitamin levels. If they need something they give it, if the kids

are not low on some, that sometimes more is not a good thing. So, I guess I

will keep them on ADEKs, w/ extra K. s levels are fine.

>

> Welp, I guess that is all for now. I need to get thing s done around

here.

>

> Vondie

>

March 14, 2003

Thank you Michele. Nick is old enough to make his own choice, he is 14 now,

so perhpas we'll approach it some time after summer. Nick will graduate 8th

grade this year, the family will celebrate by going to Hawaii for a week.

Getting away from it all, whether dirt bike riding or laying on the beach, is

a necessary part of life for everyone. Most importantly, it is good clean

(ha ha) fun! The kids play so hard during the day riding, that after dinner

they are so exhausted, they take a shower and go to sleep! Then they get up

and do it all over again the next day.

Amber

March 14, 2003

If my mother-in-law backs out I'll let you know!!!LOL

Amber

Nick's mom

March 14, 2003

What a really beautiful & funny story. I loved it. I live in Orlando & many

in my family do or have worked there. It is a wonderful place. Adults as

well .......

I had the pleasure just last night of going out to meet with DAWN PONTIUS &

her TYLER. for dinner. He is a beautiful , smart , & happy young man. WOW,

so active but forever polite .Like a boy of 16 .so advanced. BUT, My best

time was playing tic tac, toe & connect the dots with his running commentary

as we played.

Dawn was lovely , very pretty, & so happy with that precious child. I

enjoyed that a million times over in memories of " children say the funniest

things " --------AND what a delight.......

he is almost 5...short few weeks..... & knew about all the parks , etc..

Do always s take advantage of any offering when it comes to the wee ones.

memories you will cherish to gether ALWAYS, just as Michele has said here in

her post.........

Oh, If any of you are ever her, need anything, Dr., meds, etc...Please feel

free to call me.....BUT, also , if you have time ---drop by & see me, or

call & we can share a meal. or desert , whatever together. As you have read

forever here .I love to meet all of you in person too!!

Best wishes, special thoughts to each of you & yours.

LOVE & HUGS, GrandmoMBEV