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> The only down side is

> I've already spent more than I've earned!

> Joanne

>

>

Sounds like me when I have a garage sale with friends -- I always end up

making the least profit and taking home the most of other people stuff!

I work at Curves on Friday evenings only. It's a 4 hours shift at a

time that the owner (a friend) was having a hard time finding someone to

work. I get my membership for free and my nutritional supplements at

cost -- plus I am more motivated to keep up with my workouts since I am

a real part of it. In a way, it's a silly little job -- but it provides

a lot for me for very little time commitment. And the owner also has a

daughter with special needs and family out of town so she's very

understanding when I have to take off a Friday for doctor appts or when

we go out of town for holidays. I work all the Fridays I can, and

simply don't when I can't. It's an awesome arrangment that keeps me

doing that little bit of good for myself.

I hope you continue to enjoy working at the store. After the holiday,

you may make a net profit!

Michele W

Aubrie's mom

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yes, it's too bad I don't get paid, I'd be rich all the hours I put in, but,

it makes me do things, gets me out of the house, and I know I'm doing a good

thing for lots of kkids, not just my own.

maria

mom coping

>

> ----- Original Message -----

> << ... I have no idea who I really am anymore... I think the pto stuff

> annoying as it is, helps to keep me grounded >>

>

> I've taken a part time job at the Disney store for just that reason. It's

> annoying because I'm not used to planning my whole life around someone

else's

> schedule, but while I'm there I'm not anybody's mom & I am busy enough

that my

> latest worries about Eddie don't even creep into my mind. The only down

side is

> I've already spent more than I've earned!

> Joanne

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

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I think that all of you that offer support here should recognize how

valuable your work is here- you've saved me from disaster! :) This

is a flexible committee! I've been pleasantly suprised with Grant &

s little preschool classmates- they are genuinely interedsted-

and sometimes that makes the other parents weary that they are

offending me- but of course they arent! I hadnt thought of just

getting them together and telling them all about Sara.

As for working, I would love to get a part time job. I probably need

to get out more but for now I rely pretty heavily on my computer.

Ive been home for almost five years now.. I was taking part time

classes at a local college when I got pregnant with Sara and I miss

it. I still make sure I get out with my girlfriends here and

there. I am a member of a ya ya sisterhood and we meet every six

weeks or so for drinks... we used to have wild slumber parties and

act like we're thirteen.. but I havent been up for that as much. It

is a great way for me to duck out after bedtime & step into a world

completely free of responsibility for a couple of hours. Bill

doesnt mind it b/c I return in such a good mood.

Mark

> yes, it's too bad I don't get paid, I'd be rich all the hours I

put in, but,

> it makes me do things, gets me out of the house, and I know I'm

doing a good

> thing for lots of kkids, not just my own.

>

> maria

> mom coping

>

>

> >

> > ----- Original Message -----

> > << ... I have no idea who I really am anymore... I think the pto

stuff

> > annoying as it is, helps to keep me grounded >>

> >

> > I've taken a part time job at the Disney store for just that

reason. It's

> > annoying because I'm not used to planning my whole life around

someone

> else's

> > schedule, but while I'm there I'm not anybody's mom & I am busy

enough

> that my

> > latest worries about Eddie don't even creep into my mind. The

only down

> side is

> > I've already spent more than I've earned!

> > Joanne

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in

> the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter)

> > please contact marion@c... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 7th International

> > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

2005.

> Information will be available at our website

> > www.chargesyndrome.org or by calling 1-. In Canada,

you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@c... Thank you!

> >

> >

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I have a Ladies Night Out group too. Being able to get out with them

once a month is great.

We have been very open and matter-of-fact about Aubrie's differences

from the start. Her friends know why she has hearing aids and glasses,

what that extra belly button (Gtube scar) is from, etc. The neighbor

kids understand that it takes her a lot of energy to play with them so

she gets tired more quickly than they do. When she's done playing and

asks them to go home now, they need to understand so that they don't

take offense. It's all worked out fine. I haven't made a specific

effort to address her class as a whole or anything, but I'm open to that

if the need arises. Our town is small enough that most people know a

lot about her already and a good number of her classmates have been with

her for a few years. I have always tried not to be offended when others

ask questions. I can tell a person who is asking with the wrong

intention. As long as someone's intentions are good, I am happy to talk

about Aubrie with them.

Enjoy your ya-ya's!

Michele W

Mark wrote:

>

> I think that all of you that offer support here should recognize how

> valuable your work is here- you've saved me from disaster! :) This

> is a flexible committee! I've been pleasantly suprised with Grant &

> s little preschool classmates- they are genuinely interedsted-

> and sometimes that makes the other parents weary that they are

> offending me- but of course they arent! I hadnt thought of just

> getting them together and telling them all about Sara.

> As for working, I would love to get a part time job. I probably need

> to get out more but for now I rely pretty heavily on my computer.

> Ive been home for almost five years now.. I was taking part time

> classes at a local college when I got pregnant with Sara and I miss

> it. I still make sure I get out with my girlfriends here and

> there. I am a member of a ya ya sisterhood and we meet every six

> weeks or so for drinks... we used to have wild slumber parties and

> act like we're thirteen.. but I havent been up for that as much. It

> is a great way for me to duck out after bedtime & step into a world

> completely free of responsibility for a couple of hours. Bill

> doesnt mind it b/c I return in such a good mood.

>

> Mark

>

>

> > yes, it's too bad I don't get paid, I'd be rich all the hours I

> put in, but,

> > it makes me do things, gets me out of the house, and I know I'm

> doing a good

> > thing for lots of kkids, not just my own.

> >

> > maria

> > mom coping

> >

> >

> > >

> > > ----- Original Message -----

> > > << ... I have no idea who I really am anymore... I think the pto

> stuff

> > > annoying as it is, helps to keep me grounded >>

> > >

> > > I've taken a part time job at the Disney store for just that

> reason. It's

> > > annoying because I'm not used to planning my whole life around

> someone

> > else's

> > > schedule, but while I'm there I'm not anybody's mom & I am busy

> enough

> > that my

> > > latest worries about Eddie don't even creep into my mind. The

> only down

> > side is

> > > I've already spent more than I've earned!

> > > Joanne

> > >

> > >

> > >

> > > Membership of this email support groups does not constitute

> membership in

> > the CHARGE Syndrome Foundation.

> > > For information about the CHARGE Syndrome

> > > Foundation or to become a member (and get the newsletter)

> > > please contact marion@c... or visit

> > > the CHARGE Syndrome Foundation web page

> > > at http://www.chargesyndrome.org

> > > 7th International

> > > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

> 2005.

> > Information will be available at our website

> > > www.chargesyndrome.org or by calling 1-. In Canada,

> you may

> > contact CHARGE Syndrome Canada at 1- (families), visit

> > www.chargesyndrome.ca, or email info@c... Thank you!

> > >

> > >

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