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I know how you feel, my closest friend has her little boy vaccinated, and he has asthma, has been to the ER twice, and is generally very sickly. I told her she should take him to a homeopath to see if they could help with all the breathing problems, she said her husband had been once and it didn't work - so the little guy continues to struggle, hes now getting cortizone once a day too (for his lungs).

Its so very very frustrating.

Chelly

San Diego, CA

Mommy to Trenton 8/19/99 - No Shots!

"Time may be a great healer, but it's a lousy beautician."

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That is so sad, and so infuriating (about the doctor). Makes you want to wave a magic wand and undo it all, or make a lightbulb go off in these obtuse ped heads...

Sharon, Quakertown PA

Frustrating

What’s frustrating is talking to a friend of mine who’s baby just received 5 vax’s! Poor little baby! She asked the doc what his risk of a reaction would be and he said 0!! Can you believe that? She questioned that and he said the risks are so low it’s not worth mentioning.

Sherri Garrett

TR 2/17/00

1st TR baby born 11/29/00

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The doctor should be sued!

He is required to give them information BY LAW. The problem with the law

is that there are NO consequences for him if he doesn't

--------------------------------------------------------

Sheri Nakken, R.N., MA

Vaccination Information & Choice Network, Nevada City CA & UK

530-478-1242 Voicemail

http://www.nccn.net/~wwithin/vaccine.htm

" All that is necessary for the triumph of evil is that good men ( &

women) do nothing " ...Edmund Burke

ANY INFO OBTAINED HERE NOT TO BE CONSTRUED AS MEDICAL OR LEGAL ADVICE. THE

DECISION TO VACCINATE IS YOURS AND YOURS ALONE.

Well Within's Earth Mysteries & Sacred Site Tours

http://www.nccn.net/~wwithin

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--

Isn't it called the " I am God " syndrom? I wonder how the doctors who have had

medical emergencies due to vaccines feel, and what they tell their patients?

I have a neice who is fully vaccinated even with the " extras " and she barely

walks at a year and a half, is not very alert or curious about her world, and

hardly eats.

Vania

On Wed, 31 Jan 2001 01:05:29 DeVan wrote:

>That is so sad, and so infuriating (about the doctor). Makes you want to wave a

magic wand and undo it all, or make a lightbulb go off in these obtuse ped

heads...

>Sharon, Quakertown PA

> Frustrating

>

>

> What's frustrating is talking to a friend of mine who's baby just received 5

vax's! Poor little baby! She asked the doc what his risk of a reaction would

be and he said 0!! Can you believe that? She questioned that and he said the

risks are so low it's not worth mentioning.

>

>

>

>

>

> Sherri Garrett

>

> TR 2/17/00

>

> 1st TR baby born 11/29/00

>

>

>

>

>

>

>

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  • 3 years later...
Guest guest

Hang in there I understand with the weight and food, someone just today asked at work how I stay so thin---I also have some issues with food and have off and on for a long time. I also have lupus and sjogrens and my system is really picky, sometimes I dont want to eat and deal with the consequences of feeling sick. so its easier to just not eat. I have been asked a lot about my wieght loss and I just dont care anymore, no one can know what you are going through but you, so if you are needing counseling get it, I go and it has helped me a lot, Im not putting on much weight, I still dont want to , I feel a need to be thin, but I did put on just a few pounds to make one of my docs happy who threatened to cut off my meds for sleep etc. you are not alone know that at least, if it helps you at all.

hugs Colleen

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I am sorry to hear about your grandmother.

Sounds like you explained things well to your cousin.Offering just the basic answers will satisfy young kids most times.They don't care how in depth an answer is as long as they get one.LOL

Take care!

-- Frustrating

I've been having a few frustrating days ....my great grandmother died

on the 11th and her funeral was the other day...not fun at all...my

aunt that I hadn't seen that much commented about my weight

loss...she asked how I lost it all...I shrugged because the reason

I've lost weight is because I have serious issues with food and

lately it's gotten worse....

Today I babysat my cousin's son...he came with me and my mom to her

radiation treatment...sitting in the waiting room he kept asking

questions...some nurse or someone said the word treatment and Brendon

(my cousin's son) asked what that was...I told him it was what

someone gets when they are sick....he asked if it meant a little sick

or a lot sick...I didn't know how to answer that so I just told him

that people get treatment like radiation when they are sick and then

they get better....I can not explain all this cancer stuff to a six

year old......my mom pointed out to me what the cancer is that she

has...Bone Mestastes...I'm not sure I spelled that right...but oh well

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Guest guest

,

I'm sorry to hear about your Grandmother. You did the right thing with the young one, better their parents decide how to tell it, but fyi cancer is very simply fast growing cells. I'm not sure how to turn that in to an explanation for a six year old, but that is what it is in the simplest of terms. That is why people lose their hair, have problems with their intestinal tract, and have great skin while on chemotherapy, because it kills rapid growing cells, and hair, skin, and intestines are all rapid growing cells. Don't worry about spelling, we all know what you mean....no grades given out here ;)

Hugs,

Frustrating

I've been having a few frustrating days ....my great grandmother died on the 11th and her funeral was the other day...not fun at all...my aunt that I hadn't seen that much commented about my weight loss...she asked how I lost it all...I shrugged because the reason I've lost weight is because I have serious issues with food and lately it's gotten worse....Today I babysat my cousin's son...he came with me and my mom to herradiation treatment...sitting in the waiting room he kept askingquestions...some nurse or someone said the word treatment and Brendon(my cousin's son) asked what that was...I told him it was whatsomeone gets when they are sick....he asked if it meant a little sickor a lot sick...I didn't know how to answer that so I just told himthat people get treatment like radiation when they are sick and thenthey get better....I can not explain all this cancer stuff to a sixyear old......my mom pointed out to me what the cancer is that shehas...Bone Mestastes...I'm not sure I spelled that right...but oh well~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./links Personal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

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  • 2 weeks later...
Guest guest

Hi ,

How are ya doing now??? We all have some very frustrating days... Keep your chin up... How's your Mom handling everything???

((( Angel Hugs )))

Helen

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  • 1 year later...

In a message dated 8/25/2005 1:18:36 A.M. Eastern Daylight Time, karolin_demircian@... writes:

Karolin,

Until my daughters last surgery, I got comments every day. It was so awful. I was becoming an extremely angry person. I can remember over a year ago, we were in the playground and my daughter approached a few little girls (about 6 yrs). One of them began screamed "ALIEN ALIEN" and then they all started chanting it. I was sick. We left the park straight away. The other mothers didn't even know what was happening.

My daughter will be 4 next month. She is really vulnerable which makes me the great defender of her. We still get the occasional "looks likes someone is sleepy" and I just brush it off.

I don't have an answer for you, just thought I would share. I am still a bit angry. I would consider contacting the boy's mommy about the incident. He needs a good sit down. He is the one with the real problem.

God bless,

Pam

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Karolin,

I am so sorry! I can tell you as a family formed

through International adoption, we can't make it

through the grocery store, ever, without comments or

questions from strangers. (Blonde mommy with three

little ones from S. Korea obviously says, " Come ask me

if my kids are really mine or if they are 'real'

siblings, etc. " )

We really haven't had many questions about Micah's

eyes yet, but the new maid did ask him why his eyes

were red (referring to his scars) and he looked at her

and said, " Ptosis " like she was insane for not

figuring it out herself. LOL! And we had one child

ask what was wrong with his eyes and before I could

say anything her mother said, " Nothing - they look

just like yours! "

But regarding adoption questions we do exactly what

you did with your daughter as far as preparing them

with what to say to people's questions or comments.

If our kids already have a way they know they can

respond, I believe it empowers them. Our oldest

daughter, Mira, just turned five and started

Kindergarten. When kids ask her why she doesn't look

like her mom she says, " Because that's the way God

made me " or " Because she's older than I am! " LOL!

Only if she wants to does she have to tell them it is

because she is adopted. We give her the choice of who

she wants to share her story with.

I would be interested to hear what other parents say

to questions/comments regarding bleph and what you

teach your children to say. I have to admit, I don't

" think " about Micah having bleph. He's just my Micah!

But I know in Korea they took him out of preschool

because the kids were teasing him and pinching at his

eyes. :(

Praying for your family today!

HUGS!

April

--- karolin_demircian <karolin_demircian@...>

wrote:

> Hello Everyone

>

> I have Bleph, and so do my daughter (almost 6years

> old) and my son

> (almost 11 months old) I find that with my son,

> everybody feels the

> need to comment on him and that he is sleeping. " Oh,

> Look at him, he

> is sooo tired. " Oh,Look he must be soo sleepy " and

> so on. Most of the

> time I just nod and say mmmm but deep inside, I feel

> like

> shouting, " He just woke up and he just has small

> eyes! " I know they

> are not saying it to be mean or making fun of him in

> any way, but is

> just makes me want to scream. I never got any

> comments like that

> about my daughter.

>

> My daughter this year started her first year of

> Primary School and

> just the other day she came up to me and said "

> Mummy, you know a big

> boy in Grade 1 teased me today, he said, Nah Nah

> you've got small

> eyes "

> Oh my God, my heart just shattered into pieces, my

> entire childhood

> just flashed before my eyes and all the teasing

> trauma. I said to her,

> " Look darling, if it happens again put your hand up

> like a stop sign

> towards his face and say, STOP! My name is Jacinta

> and you cant talk

> to me like that!!!! " and then just walk away. I told

> her if he sees

> you upset he will keep going, but if he sees that

> you are a strong

> girl, he will think it is boring to tease you and

> walk off.

> Then I went to my room and had a cry.....

>

>

>

__________________________________________________

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I agree with you. I feel blessed that she is a healthy happy little girl. I am just in love with her so much that I have a bad day even when she has the sniffles.

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Hi there,

Thought I would just share something that happened the other day with our wee guy Ethan. We were in a shop, and Ethan of course like always, had a huge smile on his face!:) well he walked up to a lady to show her his hot wheel car in his hand (which by the way, he does't go anywhere without!) as he walked away the lady said "watch out, you are going to bump into something!", well her daughter that was with her asked what he was doing, the lady said with a smile, "he is walking around with his eyes closed!".....we actually had to have a wee giggle to ourselves, that was an innocent comment that you couldn't get mad at:) It's making me smile thinking of it. It is the stares, and the *look at his eyes* comments that hurt the most:( It is something so insignificant, compared to what some other poor people have to deal with out there!

Leanne, Christchurch (NZ)

-- Re: blepharophimosis Frustrating

In a message dated 8/25/2005 1:18:36 A.M. Eastern Daylight Time, karolin_demircian@... writes:

Karolin,

Until my daughters last surgery, I got comments every day. It was so awful. I was becoming an extremely angry person. I can remember over a year ago, we were in the playground and my daughter approached a few little girls (about 6 yrs). One of them began screamed "ALIEN ALIEN" and then they all started chanting it. I was sick. We left the park straight away. The other mothers didn't even know what was happening.

My daughter will be 4 next month. She is really vulnerable which makes me the great defender of her. We still get the occasional "looks likes someone is sleepy" and I just brush it off.

I don't have an answer for you, just thought I would share. I am still a bit angry. I would consider contacting the boy's mommy about the incident. He needs a good sit down. He is the one with the real problem.

God bless,

Pam

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Hi Karolin and Pam,

I'm so sorry that you have had to endure such heart ache caused by unecessary

and ugly

comments. I think every mother who has a child with BPES will know exactly what

you went

through. I feel your pain and frustration all too well.

I am embarassed to say that I once yelled at a woman at a store because she

stared at

Naomi so much that it frightened her to tears! Fortunately, or Unfortunately,

the woman

looked blankly back at me. She didn't speak English, sigh...

I do not have BPES and Naomi is the only person in our families who does. So, I

am not

sure how to deal some times. One piece of good advice that another member and I

keep

reminding each other is " don't fight " . She shared that in her experience the

fighting does a

lot more harm to the child. She come from a background where BPES is in the

family.

I have tried the alternative - " smile and educate " . It takes A LOT of emotional

control for

this one! But the results have been great. Once at the pool, some rowdy kids

came up to

Naomi and asked " why does she have stickers on her eyes? " (They were referring

to her

eye lid tapes - you can see them in the photos). I was worried she might cry

again and I

felt the " lioness instinct " surfacing. Then I saw that she was laughing! She

said " they not

stickers! They eye tapes! ha!ha! " . I calmed down and said " she needs them to

see, she has

Blepherophimosis. Shall we say it together? BLEPHEROPHIMOSIS " . All the kids got

a kick out

of being able to say this long word and felt so proud of themselves. Now I get

Naomi to

answer questions about her eyes herself and she says " because I have

ble-ferro-mimosis " .

Of the two approaches I would say that, for us, the former has been more

positive and

constructive. Not easy...but I thought I don't have anything to lose (except my

temper,

LOL!). Well, I hope that helps.

Take care and hugs to everyone

>

> In a message dated 8/25/2005 1:18:36 A.M. Eastern Daylight Time,

> karolin_demircian@y... writes:

>

>

>

>

> Karolin,

>

> Until my daughters last surgery, I got comments every day. It was so awful.

> I was becoming an extremely angry person. I can remember over a year ago,

> we were in the playground and my daughter approached a few little girls

> (about 6 yrs). One of them began screamed " ALIEN ALIEN " and then they all

started

> chanting it. I was sick. We left the park straight away. The other mothers

> didn't even know what was happening.

>

> My daughter will be 4 next month. She is really vulnerable which makes me

> the great defender of her. We still get the occasional " looks likes someone

> is sleepy " and I just brush it off.

>

> I don't have an answer for you, just thought I would share. I am still a

> bit angry. I would consider contacting the boy's mommy about the incident.

He

> needs a good sit down. He is the one with the real problem.

>

> God bless,

> Pam

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I have gone thru this for many years and with the new baby will go thru this again ( am starting to already). I 95% of the time when someone stares or makes a comment like "she is just waking up, or she is very sleepy" I briefly say...she has a heritarty condition that requires surgery on her eyes....if they start to talk nicely i will explain ...sometimes that is just enough for them to move on. It is heart wrenching and i still sometimes just look at her and feel emotional.....but i feel she is the most beautiful little girl i have ever laid eyes on ...and to me that is enough to make my world complete :-) funk_michelle <change@...> wrote: Hi Karolin and Pam,I'm so sorry that you have had to endure such heart ache caused by unecessary and ugly comments. I think every mother who has a child with BPES will know exactly what you went through. I feel your pain and frustration all too well. I am embarassed to say that I once yelled at a woman at a store because she stared at Naomi so much that it frightened her to tears! Fortunately, or Unfortunately, the woman looked blankly back at me. She didn't speak English, sigh...I do not have BPES and Naomi is the only person in our families who does. So, I am not sure how to deal some times. One piece of good advice that another member and I keep reminding each other is "don't fight". She shared that in her experience the fighting does a lot more harm to the child. She come from a background where BPES is in the family.

I have tried the alternative - "smile and educate". It takes A LOT of emotional control for this one! But the results have been great. Once at the pool, some rowdy kids came up to Naomi and asked "why does she have stickers on her eyes?" (They were referring to her eye lid tapes - you can see them in the photos). I was worried she might cry again and I felt the "lioness instinct" surfacing. Then I saw that she was laughing! She said "they not stickers! They eye tapes! ha!ha!". I calmed down and said "she needs them to see, she has Blepherophimosis. Shall we say it together? BLEPHEROPHIMOSIS". All the kids got a kick out of being able to say this long word and felt so proud of themselves. Now I get Naomi to answer questions about her eyes herself and she says "because I have ble-ferro-mimosis". Of the two approaches I would say that, for us, the former has been more positive and constructive. Not easy...but I thought I don't have

anything to lose (except my temper, LOL!). Well, I hope that helps.Take care and hugs to everyone > > In a message dated 8/25/2005 1:18:36 A.M. Eastern Daylight Time, > karolin_demircian@y... writes:> > > > > Karolin,> > Until my daughters last surgery, I got comments every day. It was so awful. > I was becoming an extremely angry person. I can remember over a year ago, > we were in the playground and my daughter approached a few little girls > (about 6 yrs). One of them began screamed "ALIEN ALIEN" and then they all started > chanting it. I was sick. We left the park straight away. The other mothers > didn't even know what was happening. > > My daughter will be 4 next

month. She is really vulnerable which makes me > the great defender of her. We still get the occasional "looks likes someone > is sleepy" and I just brush it off. > > I don't have an answer for you, just thought I would share. I am still a > bit angry. I would consider contacting the boy's mommy about the incident. He > needs a good sit down. He is the one with the real problem. > > God bless,> Pam<a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>

Start your day with - make it your home page

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This is how my mom taught me to deal with it when I was little. And I

do believe it is the best way. Now I know I have to do it for my

daughter, but it is so much harder!! I so wish people could just see

HER first. Not have to understand the explanation of " what's wrong "

before they can move on to accept her. LIfe is so confusing.....

In some ways, it's easier because I have it, too and I can say, she

is like me, but in other ways it's worse for me because I have to

worry about it with every pregnancy.

I admire Sharon very much.

Beth

> >

> > In a message dated 8/25/2005 1:18:36 A.M. Eastern Daylight Time,

> > karolin_demircian@y... writes:

> >

> >

> >

> >

> > Karolin,

> >

> > Until my daughters last surgery, I got comments every day. It

was so awful.

> > I was becoming an extremely angry person. I can remember over

a year ago,

> > we were in the playground and my daughter approached a few

little girls

> > (about 6 yrs). One of them began screamed " ALIEN ALIEN " and

then they all started

> > chanting it. I was sick. We left the park straight away. The

other mothers

> > didn't even know what was happening.

> >

> > My daughter will be 4 next month. She is really vulnerable

which makes me

> > the great defender of her. We still get the occasional " looks

likes someone

> > is sleepy " and I just brush it off.

> >

> > I don't have an answer for you, just thought I would share. I

am still a

> > bit angry. I would consider contacting the boy's mommy about

the incident. He

> > needs a good sit down. He is the one with the real problem.

> >

> > God bless,

> > Pam

>

>

>

>

>

>

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Thanks Beth.

I went thru a lot of teasing growing up and there was nothing physically wrong with me. I have a big nose, people laughed at my last name (Shoemaker) etc...all part of life. I won't let my kids see it gets the best of me everytime someone stares. I think it is even tougher when i am with my 13 yr old and someone does it. Like the teenagers working at Mcs who can't stop looking at my son ...etc. That kills me because i think they should know better but they don't. I truly try (and with a teenager and his views it is hard) o bring up my kids to accept everyone and their differences. If only the rest of the world followed by those rules! Hugs to all....teary eyed now lol bethgordon03 <bethgordon03@...> wrote:

This is how my mom taught me to deal with it when I was little. And I do believe it is the best way. Now I know I have to do it for my daughter, but it is so much harder!! I so wish people could just see HER first. Not have to understand the explanation of "what's wrong" before they can move on to accept her. LIfe is so confusing.....In some ways, it's easier because I have it, too and I can say, she is like me, but in other ways it's worse for me because I have to worry about it with every pregnancy. I admire Sharon very much. Beth> > > > In a message dated 8/25/2005 1:18:36 A.M. Eastern Daylight Time, > > karolin_demircian@y...

writes:> > > > > > > > > > Karolin,> > > > Until my daughters last surgery, I got comments every day. It was so awful. > > I was becoming an extremely angry person. I can remember over a year ago, > > we were in the playground and my daughter approached a few little girls > > (about 6 yrs). One of them began screamed "ALIEN ALIEN" and then they all started > > chanting it. I was sick. We left the park straight away. The other mothers > > didn't even know what was happening. > > > > My daughter will be 4 next month. She is really vulnerable which makes me > > the great defender of her. We still get the occasional "looks likes someone > > is sleepy" and I just brush it off. >

> > > I don't have an answer for you, just thought I would share. I am still a > > bit angry. I would consider contacting the boy's mommy about the incident. He > > needs a good sit down. He is the one with the real problem. > > > > God bless,> > Pam> > > > > >

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I guess I am just dumb or something because Shoemaker is like the

easiest last name in the world, what's to make fun of? And I saw pics

of your son and he looks great, your kids have BIG eyes, thick

lashes, cute faces.... there is something wrong with those people.

I know what you are saying because my mom said, too she thought my

brother had a worse time in school because he was chubby in grade

school and kids teased him. I teach in elemen. school and I really

think our kids are nicer than the used to be, we work so hard with

them to be kind, not bully, etc.,

take care

Beth

> > >

> > > In a message dated 8/25/2005 1:18:36 A.M. Eastern Daylight

Time,

> > > karolin_demircian@y... writes:

> > >

> > >

> > >

> > >

> > > Karolin,

> > >

> > > Until my daughters last surgery, I got comments every day. It

> was so awful.

> > > I was becoming an extremely angry person. I can remember

over

> a year ago,

> > > we were in the playground and my daughter approached a few

> little girls

> > > (about 6 yrs). One of them began screamed " ALIEN ALIEN " and

> then they all started

> > > chanting it. I was sick. We left the park straight away. The

> other mothers

> > > didn't even know what was happening.

> > >

> > > My daughter will be 4 next month. She is really vulnerable

> which makes me

> > > the great defender of her. We still get the occasional " looks

> likes someone

> > > is sleepy " and I just brush it off.

> > >

> > > I don't have an answer for you, just thought I would share. I

> am still a

> > > bit angry. I would consider contacting the boy's mommy about

> the incident. He

> > > needs a good sit down. He is the one with the real problem.

> > >

> > > God bless,

> > > Pam

> >

> >

> >

> >

> >

> >

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Yes i must say our elementary school has awesome programs to teach kids to accept others, not bully, tease,etc. I got make my shoes, fix my shoe etc growing up...made me a stronger adult. But yes kids are cruel and adults are even worse sometimes.

i was in the mall today with my 10 year old ...and a sale lady was looking at in the stroller and said " she can't open her eyes any further" I said no..she is going to have surgery shorty she had a heritary conditon. The woman proceeds to walk around the rack and look at my son ...he looks and laughs ....She says did he have the surgery he looks great. So I politly said yes ...she says you have big eye where did it come from ...i answered my husband ...by now i have had enough ....I ask my son if he has foundanything he wants...he says no and we leave...on the way out another saleslady stops me and says how truly beautiful my children are ....as to that I answer "yes, indside and out." My son just shakes his head side to side like he has had enough ..lol

bethgordon03 <bethgordon03@...> wrote:

I guess I am just dumb or something because Shoemaker is like the easiest last name in the world, what's to make fun of? And I saw pics of your son and he looks great, your kids have BIG eyes, thick lashes, cute faces.... there is something wrong with those people.I know what you are saying because my mom said, too she thought my brother had a worse time in school because he was chubby in grade school and kids teased him. I teach in elemen. school and I really think our kids are nicer than the used to be, we work so hard with them to be kind, not bully, etc., take careBeth> > > > > > In a message dated 8/25/2005 1:18:36 A.M. Eastern Daylight Time, > > >

karolin_demircian@y... writes:> > > > > > > > > > > > > > > Karolin,> > > > > > Until my daughters last surgery, I got comments every day. It > was so awful. > > > I was becoming an extremely angry person. I can remember over > a year ago, > > > we were in the playground and my daughter approached a few > little girls > > > (about 6 yrs). One of them began screamed "ALIEN ALIEN" and > then they all started > > > chanting it. I was sick. We left the park straight away. The > other mothers > > > didn't even know what was happening. > > > > > > My daughter will be 4 next month. She is really vulnerable > which makes me > > > the great defender of

her. We still get the occasional "looks > likes someone > > > is sleepy" and I just brush it off. > > > > > > I don't have an answer for you, just thought I would share. I > am still a > > > bit angry. I would consider contacting the boy's mommy about > the incident. He > > > needs a good sit down. He is the one with the real problem. > > > > > > God bless,> > > Pam> > > > > > > > > > > >

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