Re: New Parents who join Listserve - response long - sorry

[Guest guest]

Katy - thank you for bringing up a valuable point about adding chat

to the subject line - I myself would benefit from this as well so

that when I see 50 messages and only have time for 20 <grin> I can

skim through them much easier.

I would like to state my opinion however about one-to-one chat

discussions and I hope you will keep an open mind while reading this

post. <grin> I myself am fairly new to the group. I have been in

denial about Ian having RSS since his diagnosis at 9 months. The

convention was completely beneficial in that it really helped me to

admit to myself and face the reality of his growth and health

issuess up front. But, almost as importantly - it gave me the

opportunity to form " friendships " with other adults with children of

similar issues thereby making me feel more comfortable with his

diagnosis and the day-to-day issues that we face. This listserve

has been an incredible outlet for me. Although I wish I had the

time to help EVERYONE - I'm not at liberty to be such a GODsend as

some of the others here because I do not have the " experience "

necessary to help some of the newer parents/grandparents, etc. that

benefit from this listserve as well. However, as it relates to me -

there are days that even if I don't have something important,

helpful or beneficial to say to anyone but it's such a wonderful

feeling to have a comaraderie among individuals who understand what

my day may have been like that day - or, maybe just the ability to

talk about " something " else that may not be related to RSS - and why

do that here? Because I have a sense of belonging with these

individuals (notice how I didn't just say woman? <big grin>). It's

a wonderful feeling to be connected in some way. When I was with a

group of woman this morning at Starbucks while our children were at

preschool - we had a lovely time. But......I didn't dare bring up

Ian's issues or how my day was affected by having to contact the

doctor about medical records, etc., or even the fact that because of

Ian's size, he's hitting more because I think he feels there is a

difference in how he " stands up " to the other children, or even that

I have to make costumes in such a way....etc., etc., etc. - because

in all honesty - they don't want to hear it all the time, nor do

they understand. They nod their heads, etc.....but, it's just not

the same. I have a connection with them in other ways - but, it's

wonderful the connection I have here.

My apologies for any redundancy or for the extreme length of this

note - I think I would like to see this listserve continue as it is -

with the wonderful feeling that many people here will feel the same

and I can be open, friendly and commiserate as much as I need.

However, I totally agree with your message and Ken's post - which is

later on in the message board - that we should definately add CHAT

or VENT to the subject line so that it is easier to find those

particular posts that we may need or are looking for at the time.

Thank you for bringing this up. It gave me a chance to remind

everyone as well that I really enjoy myself here. Thank you for

providing this listserve.

- H

-- In RSS-Support , " katyudine " <rss2katy@h...>

wrote:

>

> Hi Everyone,

>

> One of the things I do when new parents write me or contact MAGIC

is

> to very strongly suggest they join this listserve. I'm attaching

the

> top 10 questions they seem to have when they contact me. Everyone

> here is so great at getting new parents on board. (Ken, maybe

these

> questions could be some sort of FAQ--any volunteers!?)

>

> Also, just a friendly suggestion (and I know Ken has brought this

up

> before, so sorry if I sound like a broken record!): I would

suggest

> that subject lines very clearly deliniate chat versus other

> discussion, or maybe even keep one-to-one chat offline. With the

> Yahoo-groups search function being much more limiting than the

past

> (you have to keep hitting Previous to search new ranges), I think

we

> need to make it very inviting for new parents who " lurk " . If they

> don't immediately see discussion topics related to specific RSS

> issues, they may not immediately join.

>

> (I'll share my " Info all parents of RSS children should know "

letter

> in another posting).

>

> Thanks! -

> Katy

> MAGIC RSS Division Co-Consultant

> Mom to , age 8, GHT since age 3

>

> 1. How do I know my child really has RSS?

> 2. Feeding/appetite enhancement tips?

> 3. Where can I find a doctor in _______? Which specialists?

> 4. Is GHT really safe? Can it be given if a child has normal GH

> levels?

> 5. Is there a blood test for RSS?

> 6. I'd like to talk with other RSS parents.

> 7. I'm an adult with RSS. Can I have children? Is RSS hereditary?

> 8. Doctors are accusing me of not feeding my child. Where can

get

> info on RSS? What are my legal options? (THIS IS THE TOUGHEST Q

of

> ALL!)

> 9. What should I be doing and when?

> 10. What are the developmental risks of RSS?

>