Re: Request regarding Subject Lines - 's (H) personal comments

[Guest guest]

May I be honest here? I am a little confused. I'm trying to figure

out the purpose of this listserve. I distinctly remember a few

months back that there was a problem with the subject line and

omission of Chat that apparently was supposed to help us discern

whether or not it was friendly discussions or whether it was related

to RSS. I thought we all made that accommodation quite immediately

and things were going very smoothly. If it were up to me (which it

isn't) – I would be inclined to say that we definitely need to be

more cognizant of what we are typing in the body of the message to

ensure it's validity to the text of the subject line. I agree with

others on that point.

May I also point out, it is my understanding that we are here to

support individuals through their difficulties, joys, sorrows,

accomplishments, grief, etc., etc.. Isn't that the function of a

support group?

Support groups like this are quite uncommon - this is not just a

place that people glean information from one another - from the

limited time I have been here, it has developed quite clearly into a

very loving, comfortable, and reassuring venue of which based on my

personal experiences has been quite encouraging considering the

difficulties we have faced. Friends, neighbors, and family members

(outside of my mother who is active here and very active in trying

to understand Ian's syndrome) do not always understand the

challenges we face on a day-to-day basis. Point-in-fact, Ian has

been admitted to the hospital 5 times in 4 months and there were

days (very recently) where I yearned for some conventionalism

or " normalcy " in our lives, but knew that those around us would not

be able to understand my desires because I was still managing my

son's issues (Four one-hour bolus feeds per day, remember medicine

doses, trying to get to preschool on time while working in a bolus

feed). That's where the listserve comes in. Some days it can be

nice to talk about who is going to win the super bowl, tell a funny

joke, or more recently – who can knit. Individuals with children of

RSS do not necessarily accomplish these conversations any better

than the " average " person without an RSS child – but, it is still

comforting to maintain a conversation with individuals who have as

much on their minds (in addition to the " normal " things we do in

life) as I do. It is as if there is a special sense of camaraderie

that isn't always readily available anywhere else.

Please correct me if I am wrong. If this site is merely to give

information about RSS to other individuals – then I have made a

terrible judgement error and will gladly find another avenue for

which to develop new friendships and share my experiences related to

RSS, and of course, enjoy lighthearted conversations now and then.

>

> Katy,

>

> I am afraid that I have to politely and respectfully disagree with

> you. This listserve and the members of it are more than just

> members. Many of them have become my friends and lifeline. This

is

> the only place where I can post that Max is doing well, or not

doing

> well, where I can support those who need it, where I can help

> educate people or just cheer them up. If I were to have to email

> these people separately, it would be just a nightmare! I would

not

> have the relationships that I have with so many and I would be

quite

> upset at that.

>

> I do agree that some of us are lax about using the " chat " heading

in

> our posts. I know it is a pain for those who receive digests and

> such. I can try to do better with that. But those same people

have

> a delete button. I do that when there are too many posts and I

just

> cannot read them all.

>

> HOWEVER, for people to complain to you is really not appropriate.

> This listserve is not a MAGIC listserve. It is here because of

> and Ken as our moderator. If people have a request or

> complaint, they should be referred to Ken and he should be the one

> to make the request and/or handle the situation.

>

> I, for one, enjoy reading the how are yous, the where is, the

> updates, the I had a lousy day, etc. posts. It makes this whole

RSS

> adventure more real and personal.

>

> I would be very interested to read what others have to say about

> this.

>

> Jodi Z

>