Any advice on dealing with exteneded family members?

[Guest guest]

Hi, I haven't posted in awhile. We've been rather busy. Getting ready for

Orion and Phynix is starting to learn to walk. So far we've all been as

healthy as can be.

My husband and I have been having problems with certain family members

comments. Saying things like " I just know will die by the time she's

20 " and oogling over a friends brand new healthy baby. Saying how much he's

grown and how he eats. I've tried talking to this person about this but she

just won't listen. One of those types that read a pamphlet and knows

everything there is to know about cf. Also making remarks like " well since

your other kids have cf then this one will too " Even though we've told her

NUMEROUS times that it's always a 1 in 4 chance. I'm just so frusterated

and being pregnaunt isn't making this any easier. I " m practically to the

point of cutting off all contact untill she can see the light. How can

people be so freaking insensitive? It's not like we picked to have kids

that are sick, it just happened. Luck or unluck of the draw. Then to make

matters worse we were coded through the military and now we can't live any

place over seas and all our family and support is in Alaska. So there are

constant comments of " well if you would have moved up here (fill in the

blank) " or " well so and so is moving to Germany, I've always wanted to go

now I can to visit " I feel like ripping my hair out at times. Any

thoughts, suggestions, comments?

Thanks for listening.

Jen A. mom to 4, Yolo 3 and Phynix 9 months all w/cf. Baby Orion due

4-14-03 ??

_________________________________________________________________

Tired of spam? Get advanced junk mail protection with MSN 8.

http://join.msn.com/?page=features/junkmail

[Guest guest]

Hi Jen,

I weigh the problems you mention different. It's fine for me when

people brag about the weight gain or health of other kids. It's okay

too when people think that a stomach flu is the worst that can happen

to a child healthwise. Would my child not have CF or another serious

disease I would act the same and we can't blame other parents for

their (in our view) ignorance. It's just normal. We can try to

educate them about CF, but over the years I have stopped to do that.

Most people don't get it anyway and I rather want them to know

nothing than spreading false info because they think they know it all.

BUT (and this is a big BUT) I would never tolerate when someone says

that Fiona will die early, can't have kids, will need a transplant

soon or whatever. In my normal life (away from the computer that is),

my daughter is a healthy child that has all the chances to live a

normal life. And I want all other people to look at her like this.

I think when you are pregnant you see things like through a looking

glass (that's my impression I have of Silke right now), what makes it

more difficult to handle rude remarks.

Peace

Torsten, dad of Fiona 5wcf and a boy in May

[Guest guest]

Jen,

I'm sorry to say that I personally don't have advice as far as the

family members go. I personally would want to cut off ties w/ her too

or actually kick her in the teeth.

As far as the military part. We are catagory 5 I think on the EFM

program. Have been since Wyatt was born. We did get to go to Hawaii

though so maybe Alaska would be ok? I don't know for sure. If they

have a hospital that would suit you. We are Navy so our only shot at

orders to Alaska would be ADAK and that's a year unaccompanied

anyways. We dont' have billets there where families would go too.

What I don't understand personally is why we can't go to Europe

because they have clinics who deal w/ CF but I don't complain. I

don't really want to go anyways. I'd rather stay close to home

(California and Arizona) If you really want to go though it's

something to look into.

Oh and if they want to go to Germany tell them to book a flight and

go. It's not like you being there is going to make their flight any

cheaper. Where you are stationed is not always your choice and there

are more important things in life right now to worry about then their

vacation plans or desires. You have a child who has CF, are pregnant,

hubby is military so the prospect of him going to war is good. I say

shut them out and concentrate on your immediate family and what's

important right now and try to ignore the pettiness around you. Come

to us for support we'll be here

Christy Mom of Wyatt 7wcf and Hunter 2.5wocf and wife to Steve, a US

Navy Seabee and darn proud of it!

[Guest guest]

Jen, I said a child w/cf sorry---I forgot you have three. Christy

-- In cfparents , " Christy <seabeewife2@h...> "

<seabeewife2@h...> wrote:

> Jen,

> I'm sorry to say that I personally don't have advice as far as

the

> family members go. I personally would want to cut off ties w/ her

too

> or actually kick her in the teeth.

> As far as the military part. We are catagory 5 I think on the EFM

> program. Have been since Wyatt was born. We did get to go to Hawaii

> though so maybe Alaska would be ok? I don't know for sure. If they

> have a hospital that would suit you. We are Navy so our only shot

at

> orders to Alaska would be ADAK and that's a year unaccompanied

> anyways. We dont' have billets there where families would go too.

> What I don't understand personally is why we can't go to Europe

> because they have clinics who deal w/ CF but I don't complain. I

> don't really want to go anyways. I'd rather stay close to home

> (California and Arizona) If you really want to go though it's

> something to look into.

> Oh and if they want to go to Germany tell them to book a flight

and

> go. It's not like you being there is going to make their flight any

> cheaper. Where you are stationed is not always your choice and

there

> are more important things in life right now to worry about then

their

> vacation plans or desires. You have a child who has CF, are

pregnant,

> hubby is military so the prospect of him going to war is good. I

say

> shut them out and concentrate on your immediate family and what's

> important right now and try to ignore the pettiness around you.

Come

> to us for support we'll be here

> Christy Mom of Wyatt 7wcf and Hunter 2.5wocf and wife to Steve, a

US

> Navy Seabee and darn proud of it!

[Guest guest]

Remember ---- Ignorance is bliss.......and a favorite line....

FORGIVE THEM FATHER THEY KNOW NOT WHAT THEY SAY..........

Damn, its tough being the voice of reason on top of all the rolls CF has

forced us into but the truth is people are ignorant. People don't know what

to do or say to us and about kids with CF....

With people with " those " comments.....tell yourself they aren't worth it.

They won't " get " it unless/until something happens to them and even then they

might never understand. Sometimes knowing that we " get " it and are smarter

is enough to live with.

I am off my soapbox....sorry.

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...