Re: Re: Back from conference

[Guest guest]

> Well shoot, Barb! How in the world am I supposed to see you?!?!? How

> much longer until you're done with classes altogether?

December 2005

[Guest guest]

Welcome back everyone! You were all missed! Not being able to get on the

computer everyday makes it hard to read what everyone has already written. Any

specials highlights (besides meeting and playing with everyone) that you don't

mind sharing with me? I was so sorry that I couldn't go but know I made the

rigtht decision.

Take care all !!

love and hugs,

[Guest guest]

Welcome back everyone! You were all missed! Not being able to get on the

computer everyday makes it hard to read what everyone has already written. Any

specials highlights (besides meeting and playing with everyone) that you don't

mind sharing with me? I was so sorry that I couldn't go but know I made the

rigtht decision.

Take care all !!

love and hugs,

[Guest guest]

Welcome back everyone! You were all missed! Not being able to get on the

computer everyday makes it hard to read what everyone has already written. Any

specials highlights (besides meeting and playing with everyone) that you don't

mind sharing with me? I was so sorry that I couldn't go but know I made the

rigtht decision.

Take care all !!

love and hugs,

[Guest guest]

From: Mdmssmile@...

Welcome back everyone!..... Any

specials highlights (besides meeting and playing with everyone) that you don't

mind sharing with me? I was so sorry that I couldn't go but know I made the

rigtht decision.

Take care all !!

love and hugs,

****************************************

Hi , I wish you could have gone, maybe another time.

I guess for me, as a first timer at the convention, it wasn't exactly what I

expected. It was better. The classes where OK. I thought I'd learn more. A few

where helpful and I walked away with some new interests to explore. But the

people... Wow! Finally meeting the folks from this board and meeting people from

other boards, making friendships and an unspoken understanding. There is sharing

at such an intimate level, that in a normal situation does not occur. It hard to

put into words what happened there. Hard to explain what I left with in a new

since of awareness and understanding. It's not so much about anything anyone

said, it's more just watching and being in the presence of so many people with

EDS. Watching how they handle things, live their lives, and simply learn to live

their lives with love and understanding despite the pain and hardship. Of course

there where some that thrive on the attention of their disability, and those

that sit in a corner and let the disability dictate their lives. I walked away

with a bigger picture of what EDS can do to a person, for the good and the bad.

And an appreciation of what a person can do with their lives inspite of it. The

conference is about the people, not the Drs and speakers.

I spent a bit of time as kind of an assistant to Mike at times. His wife

Darleen is a sweet, supportive, wonderful lady. Her ability to stand by his side

with the support and understanding on this adventure he is on is amazing. Those

of you that are able to meet Mike and get his treatment please don't forget,

Darleen is part of what makes him whole. I for one appreciate Darleen as much as

Mike. It has been an honor to watch Mike grow into what he is becoming. And it

seems everytime I'm around him, my abilities grow too. Thank you Darleen for

being part of the whole.

I guess over all, I have a better awareness of how I want to help my son live

with EDS. Somedays I have the mind set that I have a disabled boy. That disables

him more. I see that now. The conference brought that awareness to me. I choose

to change that to.... I have a son that I love and will help to him to do

anything and everything he can. I will help him to do it alone. I will help him

find a goal of his choice and reach it. I lost that awareness somewhere along

the way, but the conference brought that back to me. I need to stop enabling

him, and to have him do more for himself. I will do it with love and

understanding and in a way that he will know I will be there for him if he

falls. But I can't pick him up, unless he can't get up alone. It's time for him

to choose if EDS will rule him or if he will learn to live his life with EDS.

I'm not sure how I'll do this yet, but the awareness will help me find a way.

This is what I learned from the conference.

Cindylouwho

[Guest guest]

From: Mdmssmile@...

Welcome back everyone!..... Any

specials highlights (besides meeting and playing with everyone) that you don't

mind sharing with me? I was so sorry that I couldn't go but know I made the

rigtht decision.

Take care all !!

love and hugs,

****************************************

Hi , I wish you could have gone, maybe another time.

I guess for me, as a first timer at the convention, it wasn't exactly what I

expected. It was better. The classes where OK. I thought I'd learn more. A few

where helpful and I walked away with some new interests to explore. But the

people... Wow! Finally meeting the folks from this board and meeting people from

other boards, making friendships and an unspoken understanding. There is sharing

at such an intimate level, that in a normal situation does not occur. It hard to

put into words what happened there. Hard to explain what I left with in a new

since of awareness and understanding. It's not so much about anything anyone

said, it's more just watching and being in the presence of so many people with

EDS. Watching how they handle things, live their lives, and simply learn to live

their lives with love and understanding despite the pain and hardship. Of course

there where some that thrive on the attention of their disability, and those

that sit in a corner and let the disability dictate their lives. I walked away

with a bigger picture of what EDS can do to a person, for the good and the bad.

And an appreciation of what a person can do with their lives inspite of it. The

conference is about the people, not the Drs and speakers.

I spent a bit of time as kind of an assistant to Mike at times. His wife

Darleen is a sweet, supportive, wonderful lady. Her ability to stand by his side

with the support and understanding on this adventure he is on is amazing. Those

of you that are able to meet Mike and get his treatment please don't forget,

Darleen is part of what makes him whole. I for one appreciate Darleen as much as

Mike. It has been an honor to watch Mike grow into what he is becoming. And it

seems everytime I'm around him, my abilities grow too. Thank you Darleen for

being part of the whole.

I guess over all, I have a better awareness of how I want to help my son live

with EDS. Somedays I have the mind set that I have a disabled boy. That disables

him more. I see that now. The conference brought that awareness to me. I choose

to change that to.... I have a son that I love and will help to him to do

anything and everything he can. I will help him to do it alone. I will help him

find a goal of his choice and reach it. I lost that awareness somewhere along

the way, but the conference brought that back to me. I need to stop enabling

him, and to have him do more for himself. I will do it with love and

understanding and in a way that he will know I will be there for him if he

falls. But I can't pick him up, unless he can't get up alone. It's time for him

to choose if EDS will rule him or if he will learn to live his life with EDS.

I'm not sure how I'll do this yet, but the awareness will help me find a way.

This is what I learned from the conference.

Cindylouwho

[Guest guest]

In a message dated 7/27/04 9:16:12 AM Eastern Daylight Time,

Mdmssmile@... writes:

> Any

> specials highlights (besides meeting and playing with everyone) that you

> don't

>

Dear Diane:

The Buffalo wings were great!! So was the pillow at the hotel.....oh I

brought my own pillow. Darn it. Hugggers