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> Dear Gravesian Friends,

> The last thing I want to see is

> this board break up. might

> throw her cat out the window

> again, and who would tell her to

> rescue it? After reading your e-mail messages and

> posts and considering what this has all really been

> about, I feel bad about letting down.

> She or he isn't at fault. I am.

> This is a support group where

> people come for info and advice and sharing

> of experiences. I re-read 's

> first introductory post tonite, and

> I recalled how overwhelming everything can seem

> after a GD diagnosis, let alone one compounded by

> hyperparathyroidism. Unable to

> work and depressed, she's the one

> reaching out for help and answers. I've been blessed

> in that I've never missed a day's

> work or an aerobics class

> because of GD, and I've always had access to the

> latest information and free lab tests. But what

> good is the information if it's not shared?

>

> After working in hospitals since

> 1970, my last day of work is

> tomorrow or later today, which

> makes me wistful. I hate goodbyes

> and I've loved this job and my

> coworkers. And I'm in the midst

> of moving. Along with this new

> gluten free lifestyle, compounded

> stresses and the old Graves'

> rage, I've indeed been more

> sensitive than usual. So I

> apologize for over-reacting, and

> although I may not post much

> until I'm settled, I'll be back.

> And , you did me a favor and

> I appreciate your non-public

> e-mail message. I know you never intended things to

> escalate like they did. Anyway, I'm now going over

> all my manuscript endnotes with a fine

> tooth comb making sure everything

> is perfect. So fire away your

> questions and the members of this

> board will reach out to help you and welcome you in

> the way that you deserve.

Dear group,

This 48 hours moratorium has been the best idea, and the best present

you could have given us Bonnie Jean. So thank you very much for such

a wise decision.

I love this group, really love it.

I've been reading old messages, and paying special attention to

those

from april 1 to date, as to bring things into context And would like

to share a couple of thoughts with you.

What has happened here lately, semeed very troublesome to me.

It broke my heart that Elaine had to pass through this.

She, the most valuable among us, generous, honest, responsible,

knowledgeable, hardworker, noble, kind, and could I go on, she,

Elaine, had to unpack and dig papers for hours, just to match

's

needs of clarity relevance, and accuracy when it comes to health-

related matters.

I understand those needs , but if you wouldn't mind and in

all

fairness I'd like to say that Support groups are thought mainly

for

support, and then for connecting people, for sharing, learning,

relating, and they are not intended to be for other type of things,

or for graduate school discussions.

, this disease is a difficult one to deal with. So, I borrow

Elaine's words to you: fire away your

questions and the members of this board will reach out to help you

and welcome you in the way that you deserve.

So, let's go along sticking together, sharing and searching, and

helping each other the best way we can do.

All my best.

A.

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Yippee!

Elaine, I am happy, and my cats are relieved!

Love to , too.

At 07:32 AM 06/07/2000 -0000, you wrote:

>Dear Gravesian Friends,

>The last thing I want to see is

>this board break up.

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Elaine, that was a wonderful response. My admiration for you and the

members of this group grows daily.

Yea, Gravesians!

Now, let's go forward -- because we can't go back.

Red

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Elaine,

I am so very glad that you will remain here :)

Hope all goes well with the move, you will have much to keep you busy for

the next while. Take care.

*HUGZ* to you,

Jody

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

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Hi Elaine-

I'm very glad you're back.

Take care,

Utecht

elaine moore wrote:

> Dear Gravesian Friends,

> The last thing I want to see is

> this board break up. might

> throw her cat out the window

> again, and who would tell her to

> rescue it? After reading your e-mail messages and

> posts and considering what this has all really been

> about, I feel bad about letting down.

> She or he isn't at fault. I am.

> This is a support group where

> people come for info and advice and sharing

> of experiences. I re-read 's

> first introductory post tonite, and

> I recalled how overwhelming everything can seem

> after a GD diagnosis, let alone one compounded by

> hyperparathyroidism. Unable to

> work and depressed, she's the one

> reaching out for help and answers. I've been blessed

> in that I've never missed a day's

> work or an aerobics class

> because of GD, and I've always had access to the

> latest information and free lab tests. But what

> good is the information if it's not shared?

>

> After working in hospitals since

> 1970, my last day of work is

> tomorrow or later today, which

> makes me wistful. I hate goodbyes

> and I've loved this job and my

> coworkers. And I'm in the midst

> of moving. Along with this new

> gluten free lifestyle, compounded

> stresses and the old Graves'

> rage, I've indeed been more

> sensitive than usual. So I

> apologize for over-reacting, and

> although I may not post much

> until I'm settled, I'll be back.

> And , you did me a favor and

> I appreciate your non-public

> e-mail message. I know you never intended things to

> escalate like they did. Anyway, I'm now going over

> all my manuscript endnotes with a fine

> tooth comb making sure everything

> is perfect. So fire away your

> questions and the members of this

> board will reach out to help you and welcome you in

> the way that you deserve.

>

> ------------------------------------------------------------------------

> Free @Backup service! Click here for your free trial of @Backup.

> @Backup is the most convenient way to securely protect and access

> your files online. Try it now and receive 300 MyPoints.

> http://click./1/4935/5/_/585824/_/960363149/

> ------------------------------------------------------------------------

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

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Guest guest

Just got back from a mini-vacation (did I say vacation? an almost two year

old and almost four year old at a cabin filled with breakable items and a

lake ten feet away? Call it work) and was soooooooooooooooo happy to see

your message, Elaine! Great news and I needed some.

B

Hello

> Dear Gravesian Friends,

> The last thing I want to see is

> this board break up. might

> throw her cat out the window

> again, and who would tell her to

> rescue it? After reading your e-mail messages and

> posts and considering what this has all really been

> about, I feel bad about letting down.

> She or he isn't at fault. I am.

> This is a support group where

> people come for info and advice and sharing

> of experiences. I re-read 's

> first introductory post tonite, and

> I recalled how overwhelming everything can seem

> after a GD diagnosis, let alone one compounded by

> hyperparathyroidism. Unable to

> work and depressed, she's the one

> reaching out for help and answers. I've been blessed

> in that I've never missed a day's

> work or an aerobics class

> because of GD, and I've always had access to the

> latest information and free lab tests. But what

> good is the information if it's not shared?

>

> After working in hospitals since

> 1970, my last day of work is

> tomorrow or later today, which

> makes me wistful. I hate goodbyes

> and I've loved this job and my

> coworkers. And I'm in the midst

> of moving. Along with this new

> gluten free lifestyle, compounded

> stresses and the old Graves'

> rage, I've indeed been more

> sensitive than usual. So I

> apologize for over-reacting, and

> although I may not post much

> until I'm settled, I'll be back.

> And , you did me a favor and

> I appreciate your non-public

> e-mail message. I know you never intended things to

> escalate like they did. Anyway, I'm now going over

> all my manuscript endnotes with a fine

> tooth comb making sure everything

> is perfect. So fire away your

> questions and the members of this

> board will reach out to help you and welcome you in

> the way that you deserve.

>

>

>

> ------------------------------------------------------------------------

> Free @Backup service! Click here for your free trial of @Backup.

> @Backup is the most convenient way to securely protect and access

> your files online. Try it now and receive 300 MyPoints.

> http://click./1/4935/5/_/585824/_/960363149/

> ------------------------------------------------------------------------

>

> -------------------------------------

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

> ----------------------------------------

>

>

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  • 2 months later...

thanks for the answer zelma..ive suggested he make an appointment with his

allergist to see if he can switch to allegra...the claritin just doesnt

seem to be doing the job

Amber

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  • 2 years later...
Guest guest

Welcome Gracie! You're right, this is an active group and you'll

find them full of information, compassion, courage, encouragement,

and all the e-hugs you can stand! ;-) And YIPEE is right!!! 4 years

disease free is something we LOVE to hear about and celebrate with

you. CONGRATULATIONS!!!

Kindest Regards,

Donna Sisco

> Hello all,

> I'm new to this site and just wanted to introduce myself. I'm a 37

> year old female diagnosed in '99 with rectal cancer. I usually hang

> out over at the webmd site and just happened to find this one. This

> seems much more active than webmd. Last April was 4 years " cancer

> free " Yippie! This is my first time here so I'm off to read some

> more posts to get acquainted. But I'd first like to send my

> condolences to Betty at the loss of her husband. I'm so very sorry

> for your painful loss.

> Gracie

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Guest guest

Gracie - Welcome. Your good news is like a breath of fresh air! We

need some positive reports as many members have not been so fortunate

lately. Glad you are doing so well and pray it will continue.

Peggy

bellagrace2003 wrote:

> Hello all,

> I'm new to this site and just wanted to introduce myself. I'm a 37

> year old female diagnosed in '99 with rectal cancer. I usually hang

> out over at the webmd site and just happened to find this one. This

> seems much more active than webmd. Last April was 4 years " cancer

> free " Yippie! This is my first time here so I'm off to read some

> more posts to get acquainted. But I'd first like to send my

> condolences to Betty at the loss of her husband. I'm so very sorry

> for your painful loss.

> Gracie

>

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I'd like to second that. And all stage II/III's should remember, the

longer you have gone without recurrence, the less likely you are to

have one in the future. MOST recurrences occur in the first 2-3

years, so the odds get better with time!

Best Wishes,

> Gracie - Welcome. Your good news is like a breath of fresh air! We

> need some positive reports as many members have not been so

fortunate

> lately. Glad you are doing so well and pray it will continue.

>

> Peggy

>

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  • 2 months later...

Will he drink a regular milkshake? Try bananas, pudding, cream soups, peanut

butter if his system can handle it and cream pies like chocolate banana or

Boston crème.

Scrambled eggs (cooked DON'T add RAW eggs to food) are a good way to add protein

so is cheese.

Although it doesn't have a lot of calories you can also try chicken and beef

broth. Macaroni and cheese is good. If he like Alfredo sauce you can try that

with chicken and noodles. A baked potato is pretty filling and he can load it

with all kinds of treats. Sour Crème Cheese Bacon Broccoli you name it.

I'm going to stop now because I'm getting hungry and I DON'T need to GAIN.

<giggle> Take care.

Narice

Hello

Hello,

My daughter Kim found this group a couple weeks ago, and talked me in to

joining. I signed up a week ago, and have been reading all the messages, and you

sound just like what I need right now.

My hubby Ron was diagnosed on June 26, 2003 with stage 4 sigmoidal cancer. It

is spread to his fat cells, his lymph nodes, and still in his bowel. He will

start chemo on Aug 27, his treatment will be 3 weeks on and 1 week off for 2

months. The meds used will be camptosar/Leucovorin/fluorouracil.

They said the meds won't make him sick and he will be able to drive himself to

and from chemotherapy. But I do have a question for you all. Just getting the

dyes from the CT scans makes him have diahrea bad for days. Will this? Also he

has lost about 40 lbs. just since June. He doesn't like ensure, or boost and

doesn't care for the carnation either. Now what do I do? He has pracitcally been

living on Pop tarts. Well, that is all I can think off for now. All suggestions

welcome.

Tammy

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Hi Tammy,

<<The meds used will be camptosar/Leucovorin/fluorouracil. They

said the meds won't make him sick and he will be able to drive

himself to and from chemotherapy.>>

<<Just getting the dyes from the CT scans makes him have diahrea bad

for days. Will this?>>

I don't know - it is very possible.

The reaction to chemotherapy seems to vary quite widely among

patients, from " not too bad a time " to " absolutely miserable a

time " . It is impossible to say beforehand where he will fall on the

scale. Because of this, I would suggest a cautious approach. Why

not have someone drive him to/from treatment the first time, " just in

case " ? Can't hurt, might help!

Here are some booklets for Camptosar patients

http://www.meds.com/colon/camptosar/camptosar.html

Scroll down to " Camptosar (Irinotecan) Product Information for

Patients "

See especially

http://www.meds.com/colon/camptosar/guide2.html

http://www.meds.com/colon/camptosar/guide.html

Diarhhea can be a serious side effect of Camptosar, don't let it get

out of control as it can be life threatening!

http://www.meds.com/colon/camptosar/usx5987.html

http://www.meds.com/colon/camptosar/usx5687.html

Best,

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Found this link that may be helpful even if you don't give him Ensure

http://www.ensure.com/SpecialHealthConcerns/8CalorieTips.asp

Hello

Hello,

My daughter Kim found this group a couple weeks ago, and talked me in to

joining. I signed up a week ago, and have been reading all the messages, and you

sound just like what I need right now.

My hubby Ron was diagnosed on June 26, 2003 with stage 4 sigmoidal cancer. It

is spread to his fat cells, his lymph nodes, and still in his bowel. He will

start chemo on Aug 27, his treatment will be 3 weeks on and 1 week off for 2

months. The meds used will be camptosar/Leucovorin/fluorouracil.

They said the meds won't make him sick and he will be able to drive himself to

and from chemotherapy. But I do have a question for you all. Just getting the

dyes from the CT scans makes him have diahrea bad for days. Will this? Also he

has lost about 40 lbs. just since June. He doesn't like ensure, or boost and

doesn't care for the carnation either. Now what do I do? He has pracitcally been

living on Pop tarts. Well, that is all I can think off for now. All suggestions

welcome.

Tammy

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  • 3 weeks later...

,

I'm glad to see you here. Best wishes always to you and . Our

hearts and thoughts are with .

Mom to Kendra, and Camille

Hello

just wanted to let everyone know and I are doing ok I am still

lurking on the list LOL

mom to CHARGE 9/3/01-8/3/03 (wow is that second part tough to

write) and 3/27/03

http://community.webtv.net/maryechick12/

http://community.webtv.net/maryechick12/

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-.

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I am so glad you are here-

Give and yourself a big hug from us all-

All our best always to you and your family-

Yuka, and family

Hello

> just wanted to let everyone know and I are doing ok I am still

> lurking on the list LOL

> mom to CHARGE 9/3/01-8/3/03 (wow is that second part tough to

> write) and 3/27/03

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, glad to hear you are doing well--eep in touch and lurkk all you want.

, mom to timmy 8 ChARGE, keegan 5 starting kindergarten today, liam

2.5, wife to pat

Hello

> just wanted to let everyone know and I are doing ok I am still

> lurking on the list LOL

> mom to CHARGE 9/3/01-8/3/03 (wow is that second part tough to

> write) and 3/27/03

>

> http://community.webtv.net/maryechick12/

>

>

> http://community.webtv.net/maryechick12/

>

>

>

> 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-.

>

>

>

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Hi . It is good to hear from you.

Kay

Hello

> just wanted to let everyone know and I are doing ok I am still

> lurking on the list LOL

> mom to CHARGE 9/3/01-8/3/03 (wow is that second part tough to

> write) and 3/27/03

>

> http://community.webtv.net/maryechick12/

>

>

> http://community.webtv.net/maryechick12/

>

>

>

> 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-.

>

>

>

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  • 2 months later...

DJ interviewed on Mon so now we wait. We hope to hear something by the end of

the week... Thanks for asking :-)

Michele

hello

>

>

> hi all, it's been awhile since I've written. just thought I'd give you

an update. Timmy recieved his first report card yesterday and did quite

well. we were happy with it, of course he needs improvement on handwriting,

ind. working skills and starting and staying on task at times. otherwise it

was all satisfactory and he even had excellant in music and library!!!

> he is starting to sign now when he speaks without realizing he's doing

it :), and teaching us too.

> I have his iep meeting tomorrow, the first one in a long time I'm not

dreading or worrying about--how wonderful is that?!?!?

>

> on another note, I can tell you, cause who are you going to tell, and

you're like family anyway...Pat's next oldest brother just found out he has

ms--it's mild and has probably had it since his teens--he will be 41 in Jan.

they are starting med. as soon as the insurance ok's it--luckily his wife is

a nurse and can administer the shots 1x a week. but they aren't telling

anyone except immediate family as of now, but if you could just keep Mike in

your prayers it would be much appreciated. of course when one hears of

these things the worst comes to mind, and although those things could happen

we hope not. thanks for your thoughts, hope everyone is well and school is

going well for your children also.

>

> mom to Timmy 8 ChARGE, keegan 5.5, liam 3, wife to pat

>

>

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  • 3 months later...

hello

hi all, I feel soooooooo out of the loop!! for some reason my yahoo account

stopped and I wasn't getting mail. but I guess I've gotten resolved because I

just got some mail!! yea!!

we have been very busy here--mostly going to see our friend wayne who does tim's

orthotics--he ahs gotten ones that come up above the knee now. he is much more

stable and is to the point he wears them almost 12 hours a day--on school days.

but, because there's more to them there's more to rub and irritate his feet and

legs, so we've been back (an hour each way) about 4 times now. I " think " we

have them right now--I hope!!

we are also seeing a phsychologist for behaviors--and he has suggested a

possability of asperger syndrome---I got some info from the internet. any

thoughts from those of you with behavior issues? has this been mentioned to any

of you?

tim is off this week for winter break and now that grandma has retired she came

to get him today and he is staying with them until I get him friday am to go to

the octularist--have to get as many appts in this week as possible.

have a good day everyone, and I'm glad I can concerse with you again--I missed

you!!

maria mom to timmy 8 ChARGE, keegan alomst 6 and liam3 wife to pat

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,

Tell Tim I understand about new orthodics. I am breaking in a new pair in my

shoes. It isn't fun and mine are only on the bottom of my feet. I will be

thinking of him.

Lynn

hello

hi all, I feel soooooooo out of the loop!! for some reason my yahoo account

stopped and I wasn't getting mail. but I guess I've gotten resolved because I

just got some mail!! yea!!

we have been very busy here--mostly going to see our friend wayne who does

tim's orthotics--he ahs gotten ones that come up above the knee now. he is much

more stable and is to the point he wears them almost 12 hours a day--on school

days. but, because there's more to them there's more to rub and irritate his

feet and legs, so we've been back (an hour each way) about 4 times now. I

" think " we have them right now--I hope!!

we are also seeing a phsychologist for behaviors--and he has suggested a

possability of asperger syndrome---I got some info from the internet. any

thoughts from those of you with behavior issues? has this been mentioned to any

of you?

tim is off this week for winter break and now that grandma has retired she

came to get him today and he is staying with them until I get him friday am to

go to the octularist--have to get as many appts in this week as possible.

have a good day everyone, and I'm glad I can concerse with you again--I missed

you!!

maria mom to timmy 8 ChARGE, keegan alomst 6 and liam3 wife to pat

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WOW!!!! and how do they measure the levels of serotonin? I just want to be

able to tolerate my child for a long time without feeling like I've been run

over by a mack truck or feeling guilty for losing my cool with him. and I'd

like his brothers to like being around him too. and I'd liek timmy to have

friends his own age, not adults or kids too young to realize he's not

appropriate in all his actions. maybe I'm hoping for too much!

hello

> >

> >

> > hi all, I feel soooooooo out of the loop!! for some reason my yahoo

account

> > stopped and I wasn't getting mail. but I guess I've gotten resolved

because I

> > just got some mail!! yea!!

> >

> > we have been very busy here--mostly going to see our friend wayne who

does

> > tim's orthotics--he ahs gotten ones that come up above the knee now. he

is

> > much more stable and is to the point he wears them almost 12 hours a

day--on

> > school days. but, because there's more to them there's more to rub and

> > irritate his feet and legs, so we've been back (an hour each way) about

4

> > times now. I " think " we have them right now--I hope!!

> >

> > we are also seeing a phsychologist for behaviors--and he has suggested a

> > possability of asperger syndrome---I got some info from the internet.

any

> > thoughts from those of you with behavior issues? has this been

mentioned to

> > any of you?

> >

> > tim is off this week for winter break and now that grandma has retired

she

> > came to get him today and he is staying with them until I get him friday

am to

> > go to the octularist--have to get as many appts in this week as

possible.

> > have a good day everyone, and I'm glad I can concerse with you again--I

missed

> > you!!

> >

> > maria mom to timmy 8 ChARGE, keegan alomst 6 and liam3 wife to pat

> >

> >

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  • 1 month later...
Guest guest

,

Thanks for the update. Although your life is busy right now it is so

wonderful with those boys. Good luck on the hormone testing for Timmy.

How are things with Donna really? She and her children must be in such a fog

right now. Is there any update? I know you said you ran into her by

chance. Sometimes there have been moments in my life where I don't think things

happened by chance. I am glad Donna got to see you. You are a person whose

presence brings joy.

Oh, and good luck on the behavior thing. Besides all the other stuff one of

the most important things we did and still do with Patty is " tough love " ?

When we say no we have to mean it. What we do we have to foolw through with it

though. When I said to do something or she wouldn't.... then WE wouldn't.

Good luck. He is just as persistant as she is. It is what makes her beautiful

though.

Bonnie

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Guest guest

Donna-

As everyone else has expressed, my thoughts too have been (and will be) with

you. Yours is an unbelievable life situation. I know I hated it when people

told me how strong I was, we don't get more than we can handle, blah, blah.

Gee-- I figured it was a crummy reward for being such a great person. Anyway- I

don't want to say all those things.

But I do want to say that you will manage and get through it. Of course, you

know that. But it doesn't hurt to hear others confirm that you *can* rise to

any ocassion. I'm sure you will find that you have a multitude of valuable

skills as you go out there looking for a job. It can be scary to be sure. But

you are someone that any employer or agency would love to have on board. Relax.

Know that things will work out one way or another. If you do what you need to

do but also let it happen, things will fall into place. You just can't imagine

what that will look like now.

Reminds me of the times when Aubrie was newborn and I couldn't imagine that life

would ever be " ok " or " good " again. You all told me that it would. I couldn't

envision what that new " ok " would look like -- but it did all work out. You

were right. And those things that you told me in the beginning hold true for

you now.

Strength and hugs your way--

Michele W

Aubrie's mom

Re: hello

Debbie, Bonnie, , Pam ,Kim and Kay -

Thank you all so very much for your kind words and support.

Tim has been home for just under a week now and hasn't missed a beat. Truely

truely amazing....3 1/2 months in the hospital, in a bed and besides the

obvious need of a haircut....one might never know what he's been through. So,

presently, I wait.....waiting for a school placement so we can all get on with

life

here. Wait for my oldest daughter to start college in the Fall (going as a

pre-med major....unbelievable) and wait for life to return to " normal " .

I have not worked outside of my home for 18 years and I am currently getting

my resume together to go job hunting. Hopefully this will all come together

with perfect timing...yea, right. Nothing is ever that easy.

...and who would have guessed, some 4-5 months ago when life was so perfect

that I would be in this situation.........not me.

But life goes on and we all will be ok........ eventually.

Thank you again for keeping us in your prayers. It means a great deal to all

of us.

Donna

mom to Tim (18), (17), Nikki (14) and (91/2)

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