Re: CHAT why I need support

October 11, 2005

Well said !!

I completely agree. Here in my household there are many issues consuming my

life that I have not gone into with you all, some of you know parts of it,

but suffice it to say that there are days when I am only hanging by a

thread.

And then I come here. As Sheldon said " to home " .

Here I find laughter, silliness, pain, comfort, information, understanding,

despair and an unbeatable sense of hope! I need this outlet. I felt such

anxiety and despair last night in reading that our beloved " spot of pure

acceptance " was going to be altered. I don't know what I would do if I

couldn't log on and read about being attacked by toothpaste or my

falling off my heels!! I need this!! That is truly what support is about and

we do it the best.

I read Anita's message on the Magic Yahoo site (where the true medical

discussions are held) and she was mentioning (for those of you who don't

know) that she had joined another YAHOO site in regards to a medical concern

for one of her daughters and she didn't even receive a welcome let alone an

answer to her questions after several days!!!!

We are SO NOT like that here and I am proud, so very proud to belong to this

family, just the way it is.

Ken you have done a fabulous job of keeping us all together as a working,

caring family. We welcome new members daily and we all seem to just " gel " .

That's the magic you have created Ken for this terrific site that is truly

one of support!!!

Thanks for the chance to share my thoughts as well. OH I shall go up and

change the subject line right now!

Debby

Re: New Parents who join Listserve - response long -

sorry

> 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?

> >

>

October 11, 2005

Deb,

Wow. That was a great message. It brought tears to my eyes. I have

to say I agree with what you are saying. We support each other in so

many ways. Not just gving each other advice about all the medical

stuff, but in ALL ways. I know I can come here and find family who

understands what I am dealing with. And, if I am having another

issue on top of all the RSS stuff I deal with, I know to come hear

because you all " get it " ! It is nice to be able to come here and

talk to you all about you are right. People respond to each other

here. We are such a family and that is why I took to Sheldon's

welcome home saying. It fits perfectly! I love you all!!!

Jodi R.

AKA: (there ) Hee, hee.

> > >

> > > 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?

> > >

> >

October 11, 2005

Who's ???

LOL

Re: CHAT why I need support

> Deb,

> Wow. That was a great message. It brought tears to my eyes. I have

> to say I agree with what you are saying. We support each other in so

> many ways. Not just gving each other advice about all the medical

> stuff, but in ALL ways. I know I can come here and find family who

> understands what I am dealing with. And, if I am having another

> issue on top of all the RSS stuff I deal with, I know to come hear

> because you all " get it " ! It is nice to be able to come here and

> talk to you all about you are right. People respond to each other

> here. We are such a family and that is why I took to Sheldon's

> welcome home saying. It fits perfectly! I love you all!!!

>

> Jodi R.

> AKA: (there ) Hee, hee.

>

> > > >

> > > > 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?

> > > >

> > >

October 11, 2005

hey everyone!!

i agree as well these last couple of months have been nothing but major

stress, not only over christopher but my hubby and ect. some of you

know what we have been going through and i am so glad to be able to

come on here and vent as well as laugh at heather (oops i mean with

heather) or anyone else that posts something crazy that their kids or

themselves might have done!!

also i have been really enjoying us going into the chat at night!! it

has been a god send!! my hubby was wondering what the heck was so

funny and what we were talking about (dont worry deb, heather, and um

allison i didnt tell him a word) the only thing is i wish that alien

would stop kidnapping us!!

jodie c

PS SEE YOU GUYS TONIGHT!!

October 11, 2005

JODIE! LOL!!! I'm used to being laughed at by the way! LOL But, I

equally am enjoying laughing with all of you. Thank you for that!

My husband said he heard what he thought was laughing and moaning at

the same time. That must have been when I was eating and laughing

together! Of course, I didn't tell him it was the alien I was

laughing with! LOL

- H

>

> hey everyone!!

> i agree as well these last couple of months have been nothing but

major

> stress, not only over christopher but my hubby and ect. some of

you

> know what we have been going through and i am so glad to be able

to

> come on here and vent as well as laugh at heather (oops i mean

with

> heather) or anyone else that posts something crazy that their kids

or

> themselves might have done!!

>

> also i have been really enjoying us going into the chat at

night!! it

> has been a god send!! my hubby was wondering what the heck was so

> funny and what we were talking about (dont worry deb, heather, and

um

> allison i didnt tell him a word) the only thing is i wish that

alien

> would stop kidnapping us!!

>

> jodie c

>

> PS SEE YOU GUYS TONIGHT!!

>

October 11, 2005

The Alien!

- H

> > > > >

> > > > > 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?

> > > > >

> > > >

October 11, 2005

LOL!!! too funny!! you better watch that laughing and eating, you

might choke and he wouldnt even know!! and we would just think the

alien got you!!!LOL!!

jodie c

>

> JODIE! LOL!!! I'm used to being laughed at by the way! LOL But,

I

> equally am enjoying laughing with all of you. Thank you for

that!

>

> My husband said he heard what he thought was laughing and moaning

at

> the same time. That must have been when I was eating and laughing

> together! Of course, I didn't tell him it was the alien I was

> laughing with! LOL

>

> - H

>

October 11, 2005

Im right with you. It feels like home. In fact, this list is darn right

addicting! I too may not be able to comment on everyones issues, but just

reading them and knowing I'm not alone really makes me feel good inside. I know

that I can always come here and tell everyone about any ups and downs and I know

that I will get a response. Lets keep up the good work.

Tammy

Deb wrote: