Re: denial Parent's view

[Guest guest]

Donna,

When I think back at the first time I met you and the gang. I never seen

a difference in appearance. I seen people dealing with one Disease JRA.

Normal people to me. I knew though had to realize also she was not

alone

in this fight. I have told many about you. I say you have to meet Donna. She

is cool. I guess I was raised differently though and I have taught the

same. What is the best is what is inside. Always look at a persons heart.

inside is where everyone needs to be. Once you see the Heart of a person you see

the real person. How I came by that was. I do not look in a Mirror everyday.

I do not see what others see about me. I just know my heart is true. When

had issues with how tall she was it wasn't as bad as she thought.

lololol. I said look at yourself from your own view and not by a mirror or by

what

others say. You do thing's differently so it is your way. Climbng up on the

counter to get something is normal to and I. lolololol. Or when the

boys are around just saying heyyyyy can you get this for me? They look at us

and say I seen you got up there yesterday by yourself. We always smile and

say well I would thank you for it lololol. We enjoy it and we get around.

But before that 2004 Conference was different than me and other's

she thought. She thought she was alone. I knew in my heart she needed the

Conference. Because all I knew was her pain she had. I couldn't help the way

she was thinking inside. She was different from those around her. Donna if it

had not been for you sweetie wouldn't be where she is now. Rusty and

Tree also. I have got to hand it to you guys. finally came out of that

shell that night at the Beach. She seen she was not alone. She seen everyone

as the same. She found out it is not just her disease she has to live her

life alone.

BUT people do get married and have kids. Seeing Issadora at that Conference

showed she could attend College also. So life didn't change her dreams

it changed only the way she could achieve her dreams. Maybe slowly than

other's but she has her dreams right where she had them before in her Heart.

Our first Conference was a Life changing experience. Seeing there is a

Big Family who knows what we go through everyday. Was it Denial? for

yes. She would rather stay in her shell and not get involved but this

Conference showed her life does not stop with JRA.

Donna, Remember what ever you did that night with worked. Maybe a

small word or just being there. Whatever it was it worked. Watch

cause you are the one who got her started. :-). One teacher changes a child's

life. One child has a Hero. One child has a role model. One word changes a

childs life. One disease can crumble a childs world. But the right word can

change the outlook. Donna, YOU changed a child's life.

Yes, there needs to be YA's at all Conference's. Be a mentor to a child

and their Parent's.

Without you YA's we wouldn't know what to look for or what to expect. The

kids wouldn't know either. So I STRONGLY recommend YA's be part of the planning

and in seeable eyes at the Conference. Wearing a Special shirt to let other's

know your a YA too. Words like

I am a Survivor of JRA and I can help.

Ok y'all I am stopping I am in tears thinking if it wasn't for Donna and

that group. Not sure if could be the person she is today.

Robbin

[Guest guest]

Wow, Robbin! I am honored but all I have ever done and will ever do is

simply be myself. made the choices she did and although some YAs have

helped in some way she makes the ultimate choice. She is tremendous young

woman!

Donna

Hugs & Smiles !!!!!

Donna