Re: Mom on a Mission column July 2007

[Guest guest]

Casey, meeting the adults has been the absolute highlight - I said it

before, it's like meeting celebrities! The presenters are great too, I must

say, I was ugly at Graeme when he took a picture of me between Rob Last &

Brown, it was just like I was getting my picture taken with Hollywood

celebrities and he forgot to put the flash on and we ended up with a blurry

picture! I still printed it and scrapbooked it though!

We will take and send lots of pics. I still have all my Miami ones up -

I'll try to remember where I uploaded them to and send you the link.

L

>

> Jeanie,

>

> Ms Mac is my girl.. has been since she was born, (she and Kennedy, the

> twins)

> The hours you, me and have spent in hotel rooms are precious to me.

> Dang I wish I could meet you all again. We will some day.

>

> I so envy you all meeting the adult CHARGErs.... they show so much what

> our kids will and can be.. One day Ms Mac will be traveling the world

> like and Belinda. And she'd better come visit Aunt Casey..

>

> Casey

>

> PS: I want pictures !!!!!!!!

>

> __________________________________________________________

> Yahoo! oneSearch: Finally, mobile search

> that gives answers, not web links.

> http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

>

>

[Guest guest]

lis u need to send all the pics to me u cris and anyone taking pics i need

them want them NOW and lis can u some how put the time line as a file in the

group page id like to read it hugs ellen

>

> Casey, meeting the adults has been the absolute highlight - I said it

> before, it's like meeting celebrities! The presenters are great too, I

> must

> say, I was ugly at Graeme when he took a picture of me between Rob Last &

> Brown, it was just like I was getting my picture taken with

> Hollywood

> celebrities and he forgot to put the flash on and we ended up with a

> blurry

> picture! I still printed it and scrapbooked it though!

>

> We will take and send lots of pics. I still have all my Miami ones up -

> I'll try to remember where I uploaded them to and send you the link.

> L

>

> On 7/12/07, Casey Fisher aarididdle@... >

> wrote:

> >

> > Jeanie,

> >

> > Ms Mac is my girl.. has been since she was born, (she and Kennedy, the

> > twins)

> > The hours you, me and have spent in hotel rooms are precious to me.

> > Dang I wish I could meet you all again. We will some day.

> >

> > I so envy you all meeting the adult CHARGErs.... they show so much what

> > our kids will and can be.. One day Ms Mac will be traveling the world

> > like and Belinda. And she'd better come visit Aunt Casey..

> >

> > Casey

> >

> > PS: I want pictures !!!!!!!!

> >

> > __________________________________________________________

> > Yahoo! oneSearch: Finally, mobile search

> > that gives answers, not web links.

> > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

> >

> >

[Guest guest]

lis u need to send all the pics to me u cris and anyone taking pics i need

them want them NOW and lis can u some how put the time line as a file in the

group page id like to read it hugs ellen

>

> Casey, meeting the adults has been the absolute highlight - I said it

> before, it's like meeting celebrities! The presenters are great too, I

> must

> say, I was ugly at Graeme when he took a picture of me between Rob Last &

> Brown, it was just like I was getting my picture taken with

> Hollywood

> celebrities and he forgot to put the flash on and we ended up with a

> blurry

> picture! I still printed it and scrapbooked it though!

>

> We will take and send lots of pics. I still have all my Miami ones up -

> I'll try to remember where I uploaded them to and send you the link.

> L

>

> On 7/12/07, Casey Fisher aarididdle@... >

> wrote:

> >

> > Jeanie,

> >

> > Ms Mac is my girl.. has been since she was born, (she and Kennedy, the

> > twins)

> > The hours you, me and have spent in hotel rooms are precious to me.

> > Dang I wish I could meet you all again. We will some day.

> >

> > I so envy you all meeting the adult CHARGErs.... they show so much what

> > our kids will and can be.. One day Ms Mac will be traveling the world

> > like and Belinda. And she'd better come visit Aunt Casey..

> >

> > Casey

> >

> > PS: I want pictures !!!!!!!!

> >

> > __________________________________________________________

> > Yahoo! oneSearch: Finally, mobile search

> > that gives answers, not web links.

> > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

> >

> >

[Guest guest]

lis u need to send all the pics to me u cris and anyone taking pics i need

them want them NOW and lis can u some how put the time line as a file in the

group page id like to read it hugs ellen

>

> Casey, meeting the adults has been the absolute highlight - I said it

> before, it's like meeting celebrities! The presenters are great too, I

> must

> say, I was ugly at Graeme when he took a picture of me between Rob Last &

> Brown, it was just like I was getting my picture taken with

> Hollywood

> celebrities and he forgot to put the flash on and we ended up with a

> blurry

> picture! I still printed it and scrapbooked it though!

>

> We will take and send lots of pics. I still have all my Miami ones up -

> I'll try to remember where I uploaded them to and send you the link.

> L

>

> On 7/12/07, Casey Fisher aarididdle@... >

> wrote:

> >

> > Jeanie,

> >

> > Ms Mac is my girl.. has been since she was born, (she and Kennedy, the

> > twins)

> > The hours you, me and have spent in hotel rooms are precious to me.

> > Dang I wish I could meet you all again. We will some day.

> >

> > I so envy you all meeting the adult CHARGErs.... they show so much what

> > our kids will and can be.. One day Ms Mac will be traveling the world

> > like and Belinda. And she'd better come visit Aunt Casey..

> >

> > Casey

> >

> > PS: I want pictures !!!!!!!!

> >

> > __________________________________________________________

> > Yahoo! oneSearch: Finally, mobile search

> > that gives answers, not web links.

> > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

> >

> >

[Guest guest]

I will as soon as we get back, k?

Lis

>

> lis u need to send all the pics to me u cris and anyone taking pics i

> need

> them want them NOW and lis can u some how put the time line as a file in

> the

> group page id like to read it hugs ellen

>

>

> >

> > Casey, meeting the adults has been the absolute highlight - I said it

> > before, it's like meeting celebrities! The presenters are great too, I

> > must

> > say, I was ugly at Graeme when he took a picture of me between Rob Last

> &

> > Brown, it was just like I was getting my picture taken with

> > Hollywood

> > celebrities and he forgot to put the flash on and we ended up with a

> > blurry

> > picture! I still printed it and scrapbooked it though!

> >

> > We will take and send lots of pics. I still have all my Miami ones up -

> > I'll try to remember where I uploaded them to and send you the link.

> > L

> >

> > On 7/12/07, Casey Fisher aarididdle@...

40yahoo.com>>

> > wrote:

> > >

> > > Jeanie,

> > >

> > > Ms Mac is my girl.. has been since she was born, (she and Kennedy, the

> > > twins)

> > > The hours you, me and have spent in hotel rooms are precious to

> me.

> > > Dang I wish I could meet you all again. We will some day.

> > >

> > > I so envy you all meeting the adult CHARGErs.... they show so much

> what

> > > our kids will and can be.. One day Ms Mac will be traveling the world

> > > like and Belinda. And she'd better come visit Aunt Casey..

> > >

> > > Casey

> > >

> > > PS: I want pictures !!!!!!!!

> > >

> > > __________________________________________________________

> > > Yahoo! oneSearch: Finally, mobile search

> > > that gives answers, not web links.

> > > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

> > >

> > >

[Guest guest]

I will as soon as we get back, k?

Lis

>

> lis u need to send all the pics to me u cris and anyone taking pics i

> need

> them want them NOW and lis can u some how put the time line as a file in

> the

> group page id like to read it hugs ellen

>

>

> >

> > Casey, meeting the adults has been the absolute highlight - I said it

> > before, it's like meeting celebrities! The presenters are great too, I

> > must

> > say, I was ugly at Graeme when he took a picture of me between Rob Last

> &

> > Brown, it was just like I was getting my picture taken with

> > Hollywood

> > celebrities and he forgot to put the flash on and we ended up with a

> > blurry

> > picture! I still printed it and scrapbooked it though!

> >

> > We will take and send lots of pics. I still have all my Miami ones up -

> > I'll try to remember where I uploaded them to and send you the link.

> > L

> >

> > On 7/12/07, Casey Fisher aarididdle@...

40yahoo.com>>

> > wrote:

> > >

> > > Jeanie,

> > >

> > > Ms Mac is my girl.. has been since she was born, (she and Kennedy, the

> > > twins)

> > > The hours you, me and have spent in hotel rooms are precious to

> me.

> > > Dang I wish I could meet you all again. We will some day.

> > >

> > > I so envy you all meeting the adult CHARGErs.... they show so much

> what

> > > our kids will and can be.. One day Ms Mac will be traveling the world

> > > like and Belinda. And she'd better come visit Aunt Casey..

> > >

> > > Casey

> > >

> > > PS: I want pictures !!!!!!!!

> > >

> > > __________________________________________________________

> > > Yahoo! oneSearch: Finally, mobile search

> > > that gives answers, not web links.

> > > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

> > >

> > >

[Guest guest]

k

>

> I will as soon as we get back, k?

> Lis

>

> On 7/13/07, ellen howe ellen.howe@... >

> wrote:

> >

> > lis u need to send all the pics to me u cris and anyone taking pics i

> > need

> > them want them NOW and lis can u some how put the time line as a file in

> > the

> > group page id like to read it hugs ellen

> >

> > On 13/07/07, Weir kawfolks@...

> wrote:

> > >

> > > Casey, meeting the adults has been the absolute highlight - I said it

> > > before, it's like meeting celebrities! The presenters are great too, I

> > > must

> > > say, I was ugly at Graeme when he took a picture of me between Rob

> Last

> > &

> > > Brown, it was just like I was getting my picture taken with

> > > Hollywood

> > > celebrities and he forgot to put the flash on and we ended up with a

> > > blurry

> > > picture! I still printed it and scrapbooked it though!

> > >

> > > We will take and send lots of pics. I still have all my Miami ones up

> -

> > > I'll try to remember where I uploaded them to and send you the link.

> > > L

> > >

> > > On 7/12/07, Casey Fisher

aarididdle@...

40yahoo.com>

> 40yahoo.com>>

> > > wrote:

> > > >

> > > > Jeanie,

> > > >

> > > > Ms Mac is my girl.. has been since she was born, (she and Kennedy,

> the

> > > > twins)

> > > > The hours you, me and have spent in hotel rooms are precious to

> > me.

> > > > Dang I wish I could meet you all again. We will some day.

> > > >

> > > > I so envy you all meeting the adult CHARGErs.... they show so much

> > what

> > > > our kids will and can be.. One day Ms Mac will be traveling the

> world

> > > > like and Belinda. And she'd better come visit Aunt Casey..

> > > >

> > > > Casey

> > > >

> > > > PS: I want pictures !!!!!!!!

> > > >

> > > > __________________________________________________________

> > > > Yahoo! oneSearch: Finally, mobile search

> > > > that gives answers, not web links.

> > > > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

> > > >

> > > >

[Guest guest]

k

>

> I will as soon as we get back, k?

> Lis

>

> On 7/13/07, ellen howe ellen.howe@... >

> wrote:

> >

> > lis u need to send all the pics to me u cris and anyone taking pics i

> > need

> > them want them NOW and lis can u some how put the time line as a file in

> > the

> > group page id like to read it hugs ellen

> >

> > On 13/07/07, Weir kawfolks@...

> wrote:

> > >

> > > Casey, meeting the adults has been the absolute highlight - I said it

> > > before, it's like meeting celebrities! The presenters are great too, I

> > > must

> > > say, I was ugly at Graeme when he took a picture of me between Rob

> Last

> > &

> > > Brown, it was just like I was getting my picture taken with

> > > Hollywood

> > > celebrities and he forgot to put the flash on and we ended up with a

> > > blurry

> > > picture! I still printed it and scrapbooked it though!

> > >

> > > We will take and send lots of pics. I still have all my Miami ones up

> -

> > > I'll try to remember where I uploaded them to and send you the link.

> > > L

> > >

> > > On 7/12/07, Casey Fisher

aarididdle@...

40yahoo.com>

> 40yahoo.com>>

> > > wrote:

> > > >

> > > > Jeanie,

> > > >

> > > > Ms Mac is my girl.. has been since she was born, (she and Kennedy,

> the

> > > > twins)

> > > > The hours you, me and have spent in hotel rooms are precious to

> > me.

> > > > Dang I wish I could meet you all again. We will some day.

> > > >

> > > > I so envy you all meeting the adult CHARGErs.... they show so much

> > what

> > > > our kids will and can be.. One day Ms Mac will be traveling the

> world

> > > > like and Belinda. And she'd better come visit Aunt Casey..

> > > >

> > > > Casey

> > > >

> > > > PS: I want pictures !!!!!!!!

> > > >

> > > > __________________________________________________________

> > > > Yahoo! oneSearch: Finally, mobile search

> > > > that gives answers, not web links.

> > > > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

> > > >

> > > >

[Guest guest]

k

>

> I will as soon as we get back, k?

> Lis

>

> On 7/13/07, ellen howe ellen.howe@... >

> wrote:

> >

> > lis u need to send all the pics to me u cris and anyone taking pics i

> > need

> > them want them NOW and lis can u some how put the time line as a file in

> > the

> > group page id like to read it hugs ellen

> >

> > On 13/07/07, Weir kawfolks@...

> wrote:

> > >

> > > Casey, meeting the adults has been the absolute highlight - I said it

> > > before, it's like meeting celebrities! The presenters are great too, I

> > > must

> > > say, I was ugly at Graeme when he took a picture of me between Rob

> Last

> > &

> > > Brown, it was just like I was getting my picture taken with

> > > Hollywood

> > > celebrities and he forgot to put the flash on and we ended up with a

> > > blurry

> > > picture! I still printed it and scrapbooked it though!

> > >

> > > We will take and send lots of pics. I still have all my Miami ones up

> -

> > > I'll try to remember where I uploaded them to and send you the link.

> > > L

> > >

> > > On 7/12/07, Casey Fisher

aarididdle@...

40yahoo.com>

> 40yahoo.com>>

> > > wrote:

> > > >

> > > > Jeanie,

> > > >

> > > > Ms Mac is my girl.. has been since she was born, (she and Kennedy,

> the

> > > > twins)

> > > > The hours you, me and have spent in hotel rooms are precious to

> > me.

> > > > Dang I wish I could meet you all again. We will some day.

> > > >

> > > > I so envy you all meeting the adult CHARGErs.... they show so much

> > what

> > > > our kids will and can be.. One day Ms Mac will be traveling the

> world

> > > > like and Belinda. And she'd better come visit Aunt Casey..

> > > >

> > > > Casey

> > > >

> > > > PS: I want pictures !!!!!!!!

> > > >

> > > > __________________________________________________________

> > > > Yahoo! oneSearch: Finally, mobile search

> > > > that gives answers, not web links.

> > > > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

> > > >

> > > >

[Guest guest]

Michele,

You just made this trip next week have even more meaning then it

already did in my mind.

Everyone I know is so happy for us and that we get to meet all our

wonderful friends we have been watching on line for the last 2 years.

Hugs,

Crystal and Eva

>

>

> Mom on a Mission: " You're Okay, I'm Okay "

>

>

>

>

> Like many families, we are preparing for our summer vacation.

Before Aubrie

> and CHARGE syndrome, we didn't take regular family vacations. Now

the

> location of the International CHARGE Syndrome Conferences every 2

years

> determines the destination for our family vacation.

>

>

>

> Each time we prepare for our trip, I am taken back to our first

conference.

> Aubrie was not yet one year old and was 6 when my mom and I

took the

> kids from Chicago to Houston. The conference always begins with an

evening

> " getting acquainted " reception. We didn't know what to expect as

we entered

> the large hotel ballroom. We found it filled with CHARGE families

of all

> ages, sizes, and ethnicities. There were parents, grandparents,

siblings,

> and kids of all ages with CHARGE. I finally met hundreds of

parents I'd

> been corresponding with via E-mail.

>

>

>

> When we got back to our room, I was surprised to find myself

sobbing on my

> mom's shoulder. I hadn't realized that I was feeling so inferior.

When I

> saw all of these families who were competent, happy, successful, and

> thriving, I knew we would be ok too. I was overcome with tears of

relief

> and letting go of all of those heavy emotions. We spent the

weekend feeling

> totally at home in a far away hotel full of strangers who

understood.

>

>

>

> Two years later, as we drove up to the next conference hotel,

asked,

> " Why are all the CHARGE families so nice? Does CHARGE happen only

to nice

> families or do only the nice CHARGE families come to conferences? "

>

>

>

> Our international CHARGE family has become truly that - a family.

The first

> time I met them is permanently etched in my memory. It's hard to

explain

> what it means to me to have that connection with other people who

absolutely

> understand every nuance of our quirky life. Some parents reject

the idea of

> support groups and have difficulty moving beyond their need for

privacy and

> out of their comfort zone to meet other families living in similar

> circumstances. I ache to express to them the value of making those

> connections. How desperate and isolating it must feel to be alone

on this

> journey. I know Aubrie's successes (and those of our family) are

due in

> large part to the knowledge, experience, and support shared through

our

> CHARGE family.

>

>

>

> I look forward to the upcoming reunion with them. Now - how many

suitcases,

> how much food, and how many books and games can we cram in the car

with 4

> people?? California, here we come!

>

>

>

> Michele Westmaas is a mom, a wife, and an advocate for people with

> disabilities.

>

> Contact Michele by email at momonamission@...

>

>

>

>

>

>

>

>

[Guest guest]

Oh ellen I so wish you were going to be there, but remember we have

plan to go to Harry Potter Land when it opens!!! We have to do it and

its our deal to eachother remember!!

Hugs,

Crystal and Eva

> > >

> > > Jeanie,

> > >

> > > Ms Mac is my girl.. has been since she was born, (she and

Kennedy, the

> > > twins)

> > > The hours you, me and have spent in hotel rooms are

precious to me.

> > > Dang I wish I could meet you all again. We will some day.

> > >

> > > I so envy you all meeting the adult CHARGErs.... they show so

much what

> > > our kids will and can be.. One day Ms Mac will be traveling the

world

> > > like and Belinda. And she'd better come visit Aunt

Casey..

> > >

> > > Casey

> > >

> > > PS: I want pictures !!!!!!!!

> > >

> > > __________________________________________________________

> > > Yahoo! oneSearch: Finally, mobile search

> > > that gives answers, not web links.

> > > http://mobile.yahoo.com/mobileweb/onesearch?refer=1ONXIC

> > >

> > >

[Guest guest]

Crystal-

I can't describe how amazing the weekend will be. It's profound on so many

levels - and in many ways that most people will never understand. Can't

wait to see you!

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

supermama95

Sent: Monday, July 16, 2007 5:10 PM

To: CHARGE

Subject: Re: Mom on a Mission column July 2007

Michele,

You just made this trip next week have even more meaning then it

already did in my mind.

Everyone I know is so happy for us and that we get to meet all our

wonderful friends we have been watching on line for the last 2 years.

Hugs,

Crystal and Eva