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Re: Re: Amelie home this evening,

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I still find it so hard to believe that you have time for school work. You

amaze me. I suppose that's why you're able to stay somewhat sane, huh?

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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I still find it so hard to believe that you have time for school work. You

amaze me. I suppose that's why you're able to stay somewhat sane, huh?

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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I still find it so hard to believe that you have time for school work. You

amaze me. I suppose that's why you're able to stay somewhat sane, huh?

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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Lelsey-

Ok, now wait -- 22 yrs!!! I have been picturing you way too young for that!

DJ and I have been married for nearly 25 and I can hardly believe it! But--

we haven't done as good of a job in dividing the labor. We've gotten more

things figured out but it sounds like you 2 started off much more mature

than we did.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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Lelsey-

Ok, now wait -- 22 yrs!!! I have been picturing you way too young for that!

DJ and I have been married for nearly 25 and I can hardly believe it! But--

we haven't done as good of a job in dividing the labor. We've gotten more

things figured out but it sounds like you 2 started off much more mature

than we did.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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Lesley,

On a day full of the usual rigours and irritations of life, you just about

made it worth it for me. Really good news to hear about Amelie and lots of

" willing " her to stay well as long as possible to allow you, Darrel (just

kidding, I do know his name now!) and the girls to enjoy her loveliness and

for you all to enjoy each other.

Housework? What the hell is that? I was heartened in Miami by Tim's

presentation to hear that it is the bottom priority in his household too.

Did you ever hear the story about our burglars? Another time. (Michele,

time to send the " I don't do windows " e-mail to Lesley. I am on the case).

As someone here said, none of the girls will remember an unkept home (at

least so I hope for my sake!) but they will remember all the little things

you do together and the love you all share.

Now I am beginning to sound like a big sap!

With the very best wishes to one of my inspiration women..........

Flo

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yay fro u and glad the charge thign went so well id love to see it my

brother graduates uni tomorrwo cool istn it think hes acutaly heading ur way

soon wat college r u acutaly at think hes gonan do a dip ed at the uni of

london in september two years now mroe excuses for me to coem meet you all

LOL love u

>

> Lesley,

> I am glad Amelie is home and I hope she keeps getting better and

> doesnt catch anything else.

>

> Hugs,

> Crystal and Eva

>

>

>

> >

> > Hi everyone

> >

> > Amelie was supposed to go to a ward today from HDU but with no

> > answers from anyone and her sats at 99 which is amazing for

> amelie,

> > her last brady was at 1pm yesterday and she has had none today, I

> > persisted that if she is well enough to go to a ward then she is

> > well enough to come home, I didnt want to risk catching something

> > else whilst on the wards, in the UK they are so understaffed, its

> a

> > nightmare, they have sometimes 2 staff to 16 kids, and because she

> > is so silent, if we leave her for anything, her secretions build

> up

> > and noone notices until shes almost choking, at least at home she

> > gets one to one 24/7.

> >

> > The doctor had to get confirmation from above, but in the end they

> > agreed, she was probably safer at home.

> >

> > So the big wait for all the teams to sort out this meeting, and

> find

> > out what we do next. I really hope she can stay at home longer

> than

> > we usually get on average 10 days so can you all will her to stay

> > home longer we really need the time for the other three girls and

> > the house is a disaster, and it freaks me out if its not organised

> > and tidy, in fact it makes me ill!!!

> >

> > lol les xx

> >

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group 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 web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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Lesley-

Our kids challenge us beyond our comfort level in so many unexpected ways. I,

too, have found the need to adjust and rethink many things about my own " ways " .

Don't we all have something that we do that doesn't make so much sense? Gosh --

I hope we all do or I'm really a nut! Anyway-- don't beat yourself up for

being a clean-freak. There are worse things to be addicted to! But embrace

your new open-ness.

I have to find a Family Circus cartoon I clipped. I intended to frame it and

put it on the front door. Something like this: 2 neighbors talking over the

fence. One with a well-manicured yard, one full of " stuff " . You can guess

which one said " We're growing a family over here. "

Same applies inside. Yes, the mess in my house makes me crazy sometimes.

Yes, I envy others' magazine-worthy homes. Yes, I feel inadequate because I

can't seem to get it together. But -- I am realizing that it's just one thing I

can't do and that it really is of little true importance. We're clean enough --

just cluttered and dusty. Ah well...

I also found great comfort in the room when Tim talked about this at the

conference!

Michele W

Aubrie's mom

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Lesley-

You know, even moms without any extras like CHARGE in their lives find

themselves in those terribly guilty " bad mom " moments when they suddenly

realize the kid's shoes don't fit, there are no clothes for the season,

they're out of milk, the kid's had an ear infection for a week without

notice, etc. Just take it as a wake-up call but don't get too upset about

it. We can each only do so much. I often wonder how different would

be if I'd had more time and attention to give him. I continue to make a

grand effort, but I there are definitely regrets there. You're not alone.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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Lesley-

You know, even moms without any extras like CHARGE in their lives find

themselves in those terribly guilty " bad mom " moments when they suddenly

realize the kid's shoes don't fit, there are no clothes for the season,

they're out of milk, the kid's had an ear infection for a week without

notice, etc. Just take it as a wake-up call but don't get too upset about

it. We can each only do so much. I often wonder how different would

be if I'd had more time and attention to give him. I continue to make a

grand effort, but I there are definitely regrets there. You're not alone.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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Lesley-

You know, even moms without any extras like CHARGE in their lives find

themselves in those terribly guilty " bad mom " moments when they suddenly

realize the kid's shoes don't fit, there are no clothes for the season,

they're out of milk, the kid's had an ear infection for a week without

notice, etc. Just take it as a wake-up call but don't get too upset about

it. We can each only do so much. I often wonder how different would

be if I'd had more time and attention to give him. I continue to make a

grand effort, but I there are definitely regrets there. You're not alone.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

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Hooray for slobbing out days! Bet you got more satisfaction from this than

you would from any cleaning. I am not trivialising the OCD thing which

obviously may need some attention but really glad that you were able to put

it aside to enjoy the lovely things in life.

And as for the Olivia thing, as Michele said, we have all been guilty of not

noticing what the heck is going on with our kids until the guilt factor is

well risen. Mine is J's filthy coat and her claw-like finger and toe nails

I have neglected to cut time after time. And as for the girls'

shoes......... well, filthy is not a word I use lightly!

Enjoy your girls. Life is not a tape you can rewind.

Flo

>

> Hi flo

>

> I got my mail and pictures, first of all I thought whats this

> about!! Then I read the posts, your absolutely right, and for once I

> thought sod it!!

>

> So today I have not got anyone dressed ie Fleur or Amelie or me, we

> are slobbed in the playroom and the house....I cant look for too

> long otherwise i will get sick..but if I could start to relax about

> these issues which are so trivia compared to Amelie then maybe I

> could get rid of my OCD cleaning problem.

>

> Each day decided to read this post again and again...it may work so

> thank you very much for high lighting priorites which I sometimes

> struggle with, I dont know why I have always been like this even as

> a child my bedroom was so particular......help!

>

> cheers dear Les xx

>

>

>

>

>

>

>

>

> >

> > Lesley,

> > On a day full of the usual rigours and irritations of life, you

> just about

> > made it worth it for me. Really good news to hear about Amelie

> and lots of

> > " willing " her to stay well as long as possible to allow you,

> Darrel (just

> > kidding, I do know his name now!) and the girls to enjoy her

> loveliness and

> > for you all to enjoy each other.

> >

> > Housework? What the hell is that? I was heartened in Miami by

> Tim's

> > presentation to hear that it is the bottom priority in his

> household too.

> > Did you ever hear the story about our burglars? Another time.

> (Michele,

> > time to send the " I don't do windows " e-mail to Lesley. I am on

> the case).

> > As someone here said, none of the girls will remember an unkept

> home (at

> > least so I hope for my sake!) but they will remember all the

> little things

> > you do together and the love you all share.

> >

> > Now I am beginning to sound like a big sap!

> >

> > With the very best wishes to one of my inspiration women..........

> > Flo

> >

> >

> >

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Hooray for slobbing out days! Bet you got more satisfaction from this than

you would from any cleaning. I am not trivialising the OCD thing which

obviously may need some attention but really glad that you were able to put

it aside to enjoy the lovely things in life.

And as for the Olivia thing, as Michele said, we have all been guilty of not

noticing what the heck is going on with our kids until the guilt factor is

well risen. Mine is J's filthy coat and her claw-like finger and toe nails

I have neglected to cut time after time. And as for the girls'

shoes......... well, filthy is not a word I use lightly!

Enjoy your girls. Life is not a tape you can rewind.

Flo

>

> Hi flo

>

> I got my mail and pictures, first of all I thought whats this

> about!! Then I read the posts, your absolutely right, and for once I

> thought sod it!!

>

> So today I have not got anyone dressed ie Fleur or Amelie or me, we

> are slobbed in the playroom and the house....I cant look for too

> long otherwise i will get sick..but if I could start to relax about

> these issues which are so trivia compared to Amelie then maybe I

> could get rid of my OCD cleaning problem.

>

> Each day decided to read this post again and again...it may work so

> thank you very much for high lighting priorites which I sometimes

> struggle with, I dont know why I have always been like this even as

> a child my bedroom was so particular......help!

>

> cheers dear Les xx

>

>

>

>

>

>

>

>

> >

> > Lesley,

> > On a day full of the usual rigours and irritations of life, you

> just about

> > made it worth it for me. Really good news to hear about Amelie

> and lots of

> > " willing " her to stay well as long as possible to allow you,

> Darrel (just

> > kidding, I do know his name now!) and the girls to enjoy her

> loveliness and

> > for you all to enjoy each other.

> >

> > Housework? What the hell is that? I was heartened in Miami by

> Tim's

> > presentation to hear that it is the bottom priority in his

> household too.

> > Did you ever hear the story about our burglars? Another time.

> (Michele,

> > time to send the " I don't do windows " e-mail to Lesley. I am on

> the case).

> > As someone here said, none of the girls will remember an unkept

> home (at

> > least so I hope for my sake!) but they will remember all the

> little things

> > you do together and the love you all share.

> >

> > Now I am beginning to sound like a big sap!

> >

> > With the very best wishes to one of my inspiration women..........

> > Flo

> >

> >

> >

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