RE: ...but I love this list exactly as it is :o)

[Guest guest]

Yuka,

You said it all so well. I was trying to figure out how to say what you so

eloquently wrote.

Bless your heart.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

Yuka,

You said it all so well. I was trying to figure out how to say what you so

eloquently wrote.

Bless your heart.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

Yuka,

You said it all so well. I was trying to figure out how to say what you so

eloquently wrote.

Bless your heart.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

This is an important topic and I am kind of glad that Kim brought it up. I

do have a few suggestions-the first is that if you are writing about something

different from the subject line then changing it to a new subject helps

everyone. That way we can figure out where the conversation is going.

The other suggestion is singing your names. As we have tons of people on this

list I don't know if everyone is aware that signing your name and your

children's names to you signature helps all of us keep track of who's who.

Along

with that writing in their ages helps as well. All you have to do is set up

your signature and bam, it's done. I only have to change my children's ages on

their birthdays.

Other than that- I think the professionals and lurkers here just have to deal

with it. If it were that important to them then they can get on and ask a

question and/or make a statement like the rest of us. Heck, we don't even know

who the lurkers are. I used to be afraid of what I write as I thought some

would use it incorrectly. Now I think, oh well. I must just be who I am and

say what I feel and know or it wouldn't be honest and it wouldn't be me. The

lurkers can lurk no matter who they are. I just hope they are learning good

things. If it were really that important to them shouldn't the professionals at

least have the courtesy to say something here every now and then? Look at

Tim, Meg, Betsy, n, and the others who have shared here. They teach us

tons. And who can not thank Pam for her time. She's become family. As for the

professionals I have to say I have a job too, and I have a life. Everyone's

time is limited in their own ways. But we have lives surrounded by CHARGE

issues and this is where I find strength and comfort. I find healing and I find

camaraderie by those who walk in my shoes. I find this nowhere else in my life,

not even my own loving family. That's why those little snippets are

important.

After coming home and having over 800 messages I know the frustrations you

all are speaking of. I also got it below 180 and it's back up to 300. That's

life. There are ways you can deal with things. In my e-mail I can choose to

have them categorized by type, date, e-mail address, and subject. That helps me

when there's an important topic (subject) but that's not perfect.

Hey, now you all realize that no one has complained yet about the length of

e-mails! I am the worse one for that. How you all stand it I just don't know.

lol

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

Yuka,

How could it be off topic? This is what I wanted to do, to open the

discussion. How I wish I could concentrate in another direction with unread

emails in the inbox.....

And yes it is a magical place and I would not want anyone to leave because

they feel restricted or not valued, that wasn't the point at all, but it

does grieve me when I know families leave the list simply because they are

overwhelmed. The social support and connection is so vital, to find others

who have some idea of what your life is like and to offer you hope, and then

the opportunity to in turn help someone else. This list would be lifeless

if we did not have those personal conversations, and yes all posts go off

topic, because our list is much more like a chat, so I agree I have no

solutions.

So through discussion, hopefully we can find a small thing that might make a

big difference, or simply it will remain that when overwhelmed one goes off

list a while and then comes back on when able to handle it.

Kim

> Beloved Precious Charge List-

>

> I have no suggestions and no solutions. I only know that I cherish this

> list as it is, and I would dreadfully miss if all the chats and happy

> birthdays did not come to me as well as the " meat and potatoes " of the

> posts.

>

> I value and hold a space in my heart for everyone and everything on this

> list - much as I do for my children - things that seem small or big are not

> mine to judge, but only to witness and embrace. The smallest things can

> spark the greatest thread. The trusted intimacy brings such smiles, joys and

> shared sorrow. This is a magical place.

>

> Yet, I understand about overwhelmed in-boxes. I remember when I was

> receiving email through compuserve. It only told me that the mail was

> coming from the charge group. Now I use a different email server and

> program and it shows me who the actual writer of each email is - this helps

> me gauge ahead the tone of the email and the urgency - to expect

> camaraderie, serious information , soul searching or what have you.

> Sometimes I have to skim through and leave many unread in my in box - other

> times it is a great way to immerse myself in this world that few but us

> understand.

>

> And I belong to several list-serves of various interests, and I have to say

> that ours does a very great job, if not the very best job, of staying on

> topic. All posts from young adults with CHARGE are always important to me

> because just as this list is a haven for me in a world where I seem to

> require massive footnotes, I think it is for these young adults as well -

> and I would not want to inhibit them one bit.

>

> Here at this list I come with my soul naked. I do my best to honor and

> welcome that vulnerability from each member on this list. I feel that all

> members on this list are excellent at only coming to the list with what is

> important to them. I would not want anyone to hesitate or second guess their

> desire to post. I would feel grief if our list became " professional " and

> " on topic " only - which, by the way, in my experience is still subject to

> it's own types of digressions.....

>

> The life and structure of this list has organically developed over years.

> No other list spawned from this list has created the momentum and community

> this one has. Perhaps regular reminders to correct subject lines would help

> reduce some confusion....

>

> Hmm... I truly have no solutions, but I did want to add my $ 0.02, hoping it

> is not too off topic )

>

> with love to all-

>

> Yuka

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

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

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Yuka,

How could it be off topic? This is what I wanted to do, to open the

discussion. How I wish I could concentrate in another direction with unread

emails in the inbox.....

And yes it is a magical place and I would not want anyone to leave because

they feel restricted or not valued, that wasn't the point at all, but it

does grieve me when I know families leave the list simply because they are

overwhelmed. The social support and connection is so vital, to find others

who have some idea of what your life is like and to offer you hope, and then

the opportunity to in turn help someone else. This list would be lifeless

if we did not have those personal conversations, and yes all posts go off

topic, because our list is much more like a chat, so I agree I have no

solutions.

So through discussion, hopefully we can find a small thing that might make a

big difference, or simply it will remain that when overwhelmed one goes off

list a while and then comes back on when able to handle it.

Kim

> Beloved Precious Charge List-

>

> I have no suggestions and no solutions. I only know that I cherish this

> list as it is, and I would dreadfully miss if all the chats and happy

> birthdays did not come to me as well as the " meat and potatoes " of the

> posts.

>

> I value and hold a space in my heart for everyone and everything on this

> list - much as I do for my children - things that seem small or big are not

> mine to judge, but only to witness and embrace. The smallest things can

> spark the greatest thread. The trusted intimacy brings such smiles, joys and

> shared sorrow. This is a magical place.

>

> Yet, I understand about overwhelmed in-boxes. I remember when I was

> receiving email through compuserve. It only told me that the mail was

> coming from the charge group. Now I use a different email server and

> program and it shows me who the actual writer of each email is - this helps

> me gauge ahead the tone of the email and the urgency - to expect

> camaraderie, serious information , soul searching or what have you.

> Sometimes I have to skim through and leave many unread in my in box - other

> times it is a great way to immerse myself in this world that few but us

> understand.

>

> And I belong to several list-serves of various interests, and I have to say

> that ours does a very great job, if not the very best job, of staying on

> topic. All posts from young adults with CHARGE are always important to me

> because just as this list is a haven for me in a world where I seem to

> require massive footnotes, I think it is for these young adults as well -

> and I would not want to inhibit them one bit.

>

> Here at this list I come with my soul naked. I do my best to honor and

> welcome that vulnerability from each member on this list. I feel that all

> members on this list are excellent at only coming to the list with what is

> important to them. I would not want anyone to hesitate or second guess their

> desire to post. I would feel grief if our list became " professional " and

> " on topic " only - which, by the way, in my experience is still subject to

> it's own types of digressions.....

>

> The life and structure of this list has organically developed over years.

> No other list spawned from this list has created the momentum and community

> this one has. Perhaps regular reminders to correct subject lines would help

> reduce some confusion....

>

> Hmm... I truly have no solutions, but I did want to add my $ 0.02, hoping it

> is not too off topic )

>

> with love to all-

>

> Yuka

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

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

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Yuka,

How could it be off topic? This is what I wanted to do, to open the

discussion. How I wish I could concentrate in another direction with unread

emails in the inbox.....

And yes it is a magical place and I would not want anyone to leave because

they feel restricted or not valued, that wasn't the point at all, but it

does grieve me when I know families leave the list simply because they are

overwhelmed. The social support and connection is so vital, to find others

who have some idea of what your life is like and to offer you hope, and then

the opportunity to in turn help someone else. This list would be lifeless

if we did not have those personal conversations, and yes all posts go off

topic, because our list is much more like a chat, so I agree I have no

solutions.

So through discussion, hopefully we can find a small thing that might make a

big difference, or simply it will remain that when overwhelmed one goes off

list a while and then comes back on when able to handle it.

Kim

> Beloved Precious Charge List-

>

> I have no suggestions and no solutions. I only know that I cherish this

> list as it is, and I would dreadfully miss if all the chats and happy

> birthdays did not come to me as well as the " meat and potatoes " of the

> posts.

>

> I value and hold a space in my heart for everyone and everything on this

> list - much as I do for my children - things that seem small or big are not

> mine to judge, but only to witness and embrace. The smallest things can

> spark the greatest thread. The trusted intimacy brings such smiles, joys and

> shared sorrow. This is a magical place.

>

> Yet, I understand about overwhelmed in-boxes. I remember when I was

> receiving email through compuserve. It only told me that the mail was

> coming from the charge group. Now I use a different email server and

> program and it shows me who the actual writer of each email is - this helps

> me gauge ahead the tone of the email and the urgency - to expect

> camaraderie, serious information , soul searching or what have you.

> Sometimes I have to skim through and leave many unread in my in box - other

> times it is a great way to immerse myself in this world that few but us

> understand.

>

> And I belong to several list-serves of various interests, and I have to say

> that ours does a very great job, if not the very best job, of staying on

> topic. All posts from young adults with CHARGE are always important to me

> because just as this list is a haven for me in a world where I seem to

> require massive footnotes, I think it is for these young adults as well -

> and I would not want to inhibit them one bit.

>

> Here at this list I come with my soul naked. I do my best to honor and

> welcome that vulnerability from each member on this list. I feel that all

> members on this list are excellent at only coming to the list with what is

> important to them. I would not want anyone to hesitate or second guess their

> desire to post. I would feel grief if our list became " professional " and

> " on topic " only - which, by the way, in my experience is still subject to

> it's own types of digressions.....

>

> The life and structure of this list has organically developed over years.

> No other list spawned from this list has created the momentum and community

> this one has. Perhaps regular reminders to correct subject lines would help

> reduce some confusion....

>

> Hmm... I truly have no solutions, but I did want to add my $ 0.02, hoping it

> is not too off topic )

>

> with love to all-

>

> Yuka

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

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

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Dear Everyone,

Obviously this topic is a sensitive one, and has hit a few nerves. I can tell

that everyone has put a lot of thought into their replies and suggestions. I

actually think it's ironic that this topic came up again. I am a " lister " of

less than 6 months, and I actually commented on trying to change the subject

headings several months back. I think Yuka and one other person replied to me

and that was it. What I have realized is that I think the list works the way it

is. Chantelle brought up an excellent point--each and every person has their

own ideas about whether or not a post is important or if it is " junk " --it's all

about your perspective, and what your relationship to CHARGE is. Sometimes I

may be a little free with deleting messages, but that doesn't mean that I don't

think that EVERY person who posts here has something valid to contribute. Kim

brought up the point of time...now being completely truthful...do you really

think you would spend that much less time on the

listserve with a fewer messages? I don't think you would. I think your

passion for helping others and giving thoughtful answers is what keeps you here.

As for the parents who say that the volume of messages is what keeps them off of

the list...I think that if you truly want to be a participant here you will make

time. It's about priorities. And I think some of these people would say the

same thing whether it was 15 messages or 100.

PS One thing I found helpful for " avoiding " the list when I'm at work was to

separate it entirely from my regular email. I have a separate yahoo account for

the CHARGE listserve only.

Kim Lauger wrote:

Yuka,

How could it be off topic? This is what I wanted to do, to open the

discussion. How I wish I could concentrate in another direction with unread

emails in the inbox.....

And yes it is a magical place and I would not want anyone to leave because

they feel restricted or not valued, that wasn't the point at all, but it

does grieve me when I know families leave the list simply because they are

overwhelmed. The social support and connection is so vital, to find others

who have some idea of what your life is like and to offer you hope, and then

the opportunity to in turn help someone else. This list would be lifeless

if we did not have those personal conversations, and yes all posts go off

topic, because our list is much more like a chat, so I agree I have no

solutions.

So through discussion, hopefully we can find a small thing that might make a

big difference, or simply it will remain that when overwhelmed one goes off

list a while and then comes back on when able to handle it.

Kim

> Beloved Precious Charge List-

>

> I have no suggestions and no solutions. I only know that I cherish this

> list as it is, and I would dreadfully miss if all the chats and happy

> birthdays did not come to me as well as the " meat and potatoes " of the

> posts.

>

> I value and hold a space in my heart for everyone and everything on this

> list - much as I do for my children - things that seem small or big are not

> mine to judge, but only to witness and embrace. The smallest things can

> spark the greatest thread. The trusted intimacy brings such smiles, joys and

> shared sorrow. This is a magical place.

>

> Yet, I understand about overwhelmed in-boxes. I remember when I was

> receiving email through compuserve. It only told me that the mail was

> coming from the charge group. Now I use a different email server and

> program and it shows me who the actual writer of each email is - this helps

> me gauge ahead the tone of the email and the urgency - to expect

> camaraderie, serious information , soul searching or what have you.

> Sometimes I have to skim through and leave many unread in my in box - other

> times it is a great way to immerse myself in this world that few but us

> understand.

>

> And I belong to several list-serves of various interests, and I have to say

> that ours does a very great job, if not the very best job, of staying on

> topic. All posts from young adults with CHARGE are always important to me

> because just as this list is a haven for me in a world where I seem to

> require massive footnotes, I think it is for these young adults as well -

> and I would not want to inhibit them one bit.

>

> Here at this list I come with my soul naked. I do my best to honor and

> welcome that vulnerability from each member on this list. I feel that all

> members on this list are excellent at only coming to the list with what is

> important to them. I would not want anyone to hesitate or second guess their

> desire to post. I would feel grief if our list became " professional " and

> " on topic " only - which, by the way, in my experience is still subject to

> it's own types of digressions.....

>

> The life and structure of this list has organically developed over years.

> No other list spawned from this list has created the momentum and community

> this one has. Perhaps regular reminders to correct subject lines would help

> reduce some confusion....

>

> Hmm... I truly have no solutions, but I did want to add my $ 0.02, hoping it

> is not too off topic )

>

> with love to all-

>

> Yuka

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

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

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

,

This is one of the thoughts I am considering for me. I know it will need to

be completely invisible to me.

And yes you are right, my passion will still require that I spend a lot of

time posting on areas that I have experience with and my concern for each

person here will keep me from choosing to skim messages, so I am grateful

that some ideas are surfacing that can help me manage all this and I hope

that are useful for everyone here as well.

On changing subject lines - what works best for you, changing to a brand new

one or keeping the thread active and adding new words????

Kim

> PS One thing I found helpful for " avoiding " the list when I'm at work was to

> separate it entirely from my regular email. I have a separate yahoo account

> for the CHARGE listserve only.

[Guest guest]

Brainstorming here -- would it be possible to let new members know that our

volume is high and that they are welcome to post and only read those

replies?? If there are folks who can't read everything, they are still

welcome and encouraged to post questions when they have them and read only

the replies to their post. Does that make any sense?

The list has a different purpose for different people at different times in

their lives. If the volume decreased, then all of the valuable content

would decrease. We don't want that.

Seems to me that our goal is to make the list effective and usable for each

person. The archives make it possible for people to use it as a research

tool only. Am I right that people can view current posts from the website

also without being active on the list? So people have access to all or

parts of the information without having to get the daily posts. I think all

the bases are covered with things as they are.

Now, I do think a periodic reminder of things like deleting the original

message when replying, changing the subject line when it changes, replying

directly to an individual when a reply is certainly of no interest to

others... I forget those things after time. And new people wouldn't have

heard them at all. No one should be " reprimanded " for not doing those

things, but if we remember them, they do make the list easier to use for all

of us.

Is it possible to have an automatic " welcome " message sent to new members

giving those few guidelines and maybe Welcome to Holland or something that

seems to be a common thing we offer to new families?

Michele W

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

Re: ...but I love this list exactly as it is )

Yuka,

How could it be off topic? This is what I wanted to do, to open the

discussion. How I wish I could concentrate in another direction with unread

emails in the inbox.....

And yes it is a magical place and I would not want anyone to leave because

they feel restricted or not valued, that wasn't the point at all, but it

does grieve me when I know families leave the list simply because they are

overwhelmed. The social support and connection is so vital, to find others

who have some idea of what your life is like and to offer you hope, and then

the opportunity to in turn help someone else. This list would be lifeless

if we did not have those personal conversations, and yes all posts go off

topic, because our list is much more like a chat, so I agree I have no

solutions.

So through discussion, hopefully we can find a small thing that might make a

big difference, or simply it will remain that when overwhelmed one goes off

list a while and then comes back on when able to handle it.

Kim

> Beloved Precious Charge List-

>

> I have no suggestions and no solutions. I only know that I cherish this

> list as it is, and I would dreadfully miss if all the chats and happy

> birthdays did not come to me as well as the " meat and potatoes " of the

> posts.

>

> I value and hold a space in my heart for everyone and everything on this

> list - much as I do for my children - things that seem small or big are

not

> mine to judge, but only to witness and embrace. The smallest things can

> spark the greatest thread. The trusted intimacy brings such smiles, joys

and

> shared sorrow. This is a magical place.

>

> Yet, I understand about overwhelmed in-boxes. I remember when I was

> receiving email through compuserve. It only told me that the mail was

> coming from the charge group. Now I use a different email server and

> program and it shows me who the actual writer of each email is - this

helps

> me gauge ahead the tone of the email and the urgency - to expect

> camaraderie, serious information , soul searching or what have you.

> Sometimes I have to skim through and leave many unread in my in box -

other

> times it is a great way to immerse myself in this world that few but us

> understand.

>

> And I belong to several list-serves of various interests, and I have to

say

> that ours does a very great job, if not the very best job, of staying on

> topic. All posts from young adults with CHARGE are always important to me

> because just as this list is a haven for me in a world where I seem to

> require massive footnotes, I think it is for these young adults as well -

> and I would not want to inhibit them one bit.

>

> Here at this list I come with my soul naked. I do my best to honor and

> welcome that vulnerability from each member on this list. I feel that all

> members on this list are excellent at only coming to the list with what is

> important to them. I would not want anyone to hesitate or second guess

their

> desire to post. I would feel grief if our list became " professional "

and

> " on topic " only - which, by the way, in my experience is still subject to

> it's own types of digressions.....

>

> The life and structure of this list has organically developed over years.

> No other list spawned from this list has created the momentum and

community

> this one has. Perhaps regular reminders to correct subject lines would

help

> reduce some confusion....

>

> Hmm... I truly have no solutions, but I did want to add my $ 0.02, hoping

it

> is not too off topic )

>

> with love to all-

>

> Yuka

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

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

the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> 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

> (CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

> 8th International

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

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

>

[Guest guest]

Yuka,

I too love this list for all the reasons you so eloquently posted...

my message regarding overload was not intended to change the

list...however, because of my inability to keep up, I feel badly if I

don't respond to messages of well wishing, congratulations or keeping

those of you in my prayers who may be undergoing surgery or

transitions...so I will just say, I do feel a true bond with you all

and I will just hang in there and read what and when I can...just

please know I am with you even if you don't hear regularly from me.

hugs to you all,

Sharon from West Oz

>Beloved Precious Charge List-

>

>I have no suggestions and no solutions. I only know that I cherish this

>list as it is, and I would dreadfully miss if all the chats and happy

>birthdays did not come to me as well as the " meat and potatoes " of the

>posts.

>

>I value and hold a space in my heart for everyone and everything on this

>list - much as I do for my children - things that seem small or big are not

>mine to judge, but only to witness and embrace. The smallest things can

>spark the greatest thread. The trusted intimacy brings such smiles, joys and

>shared sorrow. This is a magical place.

>

>Yet, I understand about overwhelmed in-boxes. I remember when I was

>receiving email through compuserve. It only told me that the mail was

>coming from the charge group. Now I use a different email server and

>program and it shows me who the actual writer of each email is - this helps

>me gauge ahead the tone of the email and the urgency - to expect

>camaraderie, serious information , soul searching or what have you.

>Sometimes I have to skim through and leave many unread in my in box - other

>times it is a great way to immerse myself in this world that few but us

>understand.

>

>And I belong to several list-serves of various interests, and I have to say

>that ours does a very great job, if not the very best job, of staying on

>topic. All posts from young adults with CHARGE are always important to me

>because just as this list is a haven for me in a world where I seem to

>require massive footnotes, I think it is for these young adults as well -

>and I would not want to inhibit them one bit.

>

>Here at this list I come with my soul naked. I do my best to honor and

>welcome that vulnerability from each member on this list. I feel that all

>members on this list are excellent at only coming to the list with what is

>important to them. I would not want anyone to hesitate or second guess their

>desire to post. I would feel grief if our list became " professional " and

> " on topic " only - which, by the way, in my experience is still subject to

>it's own types of digressions.....

>

>The life and structure of this list has organically developed over years.

>No other list spawned from this list has created the momentum and community

>this one has. Perhaps regular reminders to correct subject lines would help

>reduce some confusion....

>

>Hmm... I truly have no solutions, but I did want to add my $ 0.02, hoping it

>is not too off topic )

>

>with love to all-

>

>Yuka

>

>

>

>

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

>Membership of this email support groups does not constitute

>membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

>Canada.

>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

>(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

>8th International

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

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

>

[Guest guest]

Yuka,

I too love this list for all the reasons you so eloquently posted...

my message regarding overload was not intended to change the

list...however, because of my inability to keep up, I feel badly if I

don't respond to messages of well wishing, congratulations or keeping

those of you in my prayers who may be undergoing surgery or

transitions...so I will just say, I do feel a true bond with you all

and I will just hang in there and read what and when I can...just

please know I am with you even if you don't hear regularly from me.

hugs to you all,

Sharon from West Oz

>Beloved Precious Charge List-

>

>I have no suggestions and no solutions. I only know that I cherish this

>list as it is, and I would dreadfully miss if all the chats and happy

>birthdays did not come to me as well as the " meat and potatoes " of the

>posts.

>

>I value and hold a space in my heart for everyone and everything on this

>list - much as I do for my children - things that seem small or big are not

>mine to judge, but only to witness and embrace. The smallest things can

>spark the greatest thread. The trusted intimacy brings such smiles, joys and

>shared sorrow. This is a magical place.

>

>Yet, I understand about overwhelmed in-boxes. I remember when I was

>receiving email through compuserve. It only told me that the mail was

>coming from the charge group. Now I use a different email server and

>program and it shows me who the actual writer of each email is - this helps

>me gauge ahead the tone of the email and the urgency - to expect

>camaraderie, serious information , soul searching or what have you.

>Sometimes I have to skim through and leave many unread in my in box - other

>times it is a great way to immerse myself in this world that few but us

>understand.

>

>And I belong to several list-serves of various interests, and I have to say

>that ours does a very great job, if not the very best job, of staying on

>topic. All posts from young adults with CHARGE are always important to me

>because just as this list is a haven for me in a world where I seem to

>require massive footnotes, I think it is for these young adults as well -

>and I would not want to inhibit them one bit.

>

>Here at this list I come with my soul naked. I do my best to honor and

>welcome that vulnerability from each member on this list. I feel that all

>members on this list are excellent at only coming to the list with what is

>important to them. I would not want anyone to hesitate or second guess their

>desire to post. I would feel grief if our list became " professional " and

> " on topic " only - which, by the way, in my experience is still subject to

>it's own types of digressions.....

>

>The life and structure of this list has organically developed over years.

>No other list spawned from this list has created the momentum and community

>this one has. Perhaps regular reminders to correct subject lines would help

>reduce some confusion....

>

>Hmm... I truly have no solutions, but I did want to add my $ 0.02, hoping it

>is not too off topic )

>

>with love to all-

>

>Yuka

>

>

>

>

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

>Membership of this email support groups does not constitute

>membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

>Canada.

>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

>(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

>8th International

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

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

>

[Guest guest]

Yuka,

I too love this list for all the reasons you so eloquently posted...

my message regarding overload was not intended to change the

list...however, because of my inability to keep up, I feel badly if I

don't respond to messages of well wishing, congratulations or keeping

those of you in my prayers who may be undergoing surgery or

transitions...so I will just say, I do feel a true bond with you all

and I will just hang in there and read what and when I can...just

please know I am with you even if you don't hear regularly from me.

hugs to you all,

Sharon from West Oz

>Beloved Precious Charge List-

>

>I have no suggestions and no solutions. I only know that I cherish this

>list as it is, and I would dreadfully miss if all the chats and happy

>birthdays did not come to me as well as the " meat and potatoes " of the

>posts.

>

>I value and hold a space in my heart for everyone and everything on this

>list - much as I do for my children - things that seem small or big are not

>mine to judge, but only to witness and embrace. The smallest things can

>spark the greatest thread. The trusted intimacy brings such smiles, joys and

>shared sorrow. This is a magical place.

>

>Yet, I understand about overwhelmed in-boxes. I remember when I was

>receiving email through compuserve. It only told me that the mail was

>coming from the charge group. Now I use a different email server and

>program and it shows me who the actual writer of each email is - this helps

>me gauge ahead the tone of the email and the urgency - to expect

>camaraderie, serious information , soul searching or what have you.

>Sometimes I have to skim through and leave many unread in my in box - other

>times it is a great way to immerse myself in this world that few but us

>understand.

>

>And I belong to several list-serves of various interests, and I have to say

>that ours does a very great job, if not the very best job, of staying on

>topic. All posts from young adults with CHARGE are always important to me

>because just as this list is a haven for me in a world where I seem to

>require massive footnotes, I think it is for these young adults as well -

>and I would not want to inhibit them one bit.

>

>Here at this list I come with my soul naked. I do my best to honor and

>welcome that vulnerability from each member on this list. I feel that all

>members on this list are excellent at only coming to the list with what is

>important to them. I would not want anyone to hesitate or second guess their

>desire to post. I would feel grief if our list became " professional " and

> " on topic " only - which, by the way, in my experience is still subject to

>it's own types of digressions.....

>

>The life and structure of this list has organically developed over years.

>No other list spawned from this list has created the momentum and community

>this one has. Perhaps regular reminders to correct subject lines would help

>reduce some confusion....

>

>Hmm... I truly have no solutions, but I did want to add my $ 0.02, hoping it

>is not too off topic )

>

>with love to all-

>

>Yuka

>

>

>

>

>

>

>CHARGE SYNDROME LISTSERV PHOTO PAGE:

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

>

>Membership of this email support groups does not constitute

>membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

>Canada.

>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

>(CHARGE Syndrome Canada - http://www.chargesyndrome.ca)

>

>8th International

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

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

>

[Guest guest]

Sharon-

I think that has to remain an unspoken understanding -- that we are all here

for each other even when we don't say it with a post. We need to believe

that everyone is praying for us, caring about us, etc even without

replies... there just isn't time to put into words all of the thoughts we

carry for each other. Just as good friends can restart from where they left

off after not seeing each other for years, we need to be able to join in as

if we've never been gone even after being inactive for a week or several

years. I think part of the reason this list works so well is because we all

get that.

Michele W

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

[Guest guest]

Sharon-

I think that has to remain an unspoken understanding -- that we are all here

for each other even when we don't say it with a post. We need to believe

that everyone is praying for us, caring about us, etc even without

replies... there just isn't time to put into words all of the thoughts we

carry for each other. Just as good friends can restart from where they left

off after not seeing each other for years, we need to be able to join in as

if we've never been gone even after being inactive for a week or several

years. I think part of the reason this list works so well is because we all

get that.

Michele W

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

[Guest guest]

Sharon-

I think that has to remain an unspoken understanding -- that we are all here

for each other even when we don't say it with a post. We need to believe

that everyone is praying for us, caring about us, etc even without

replies... there just isn't time to put into words all of the thoughts we

carry for each other. Just as good friends can restart from where they left

off after not seeing each other for years, we need to be able to join in as

if we've never been gone even after being inactive for a week or several

years. I think part of the reason this list works so well is because we all

get that.

Michele W

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