poem by an adult survivor of encephalitis....I hope my Julia isn't in pain! I wish she could just tell me!!

Encephalitis by Sarah Hill

It locks you away
inside your mind
inside your head
it keeps you alone
and different

Deep down you know
what the difference is
who you used to be
the person you once were
But who are you now?


Try and explain it to others
can they really understand
Try saying “I feel different”
Folks politely ask me why?


Its simple,
my mind is like treacle
(the extra sticky kind)
that pulls out all your fillings
and causes your teeth to grind.


My head is like a vacuum....
of the cleaning type
that sucks up bits and pieces
clears away in one full swipe.


My memory is shot to pieces
my arms and legs are weak
my balance is non existent
held up by two left feet.


There’s my vision too
my eyes – mere shadows
of their former selves
Two friends who find it hard to work
although they can with help.


Some mornings I find it hard to wake
My brain’s been left behind
It’s vanished, gone the night before
Looking for things I cannot find.


I feel like something’s got me
Something weird form outer space.
Am I a “Stepford wife”, a “zombie”?
Am I part of the Human Race?


It doesn’t feel like it.


Do they tell you about the head pain,
The pressure building up,
The depression and the mood swings,
Desperation fills my cup.


My tendency to drop things
through my fingers light and weak
How many pairs of trousers torn
from falling off my feet.


Its changed my personality
every ailment caused by you
And so the list continues
my life revolves around –


trying to get over this
dreadful illness.


Encephalitis,
it changes life,
it changes you.

AAAGGGHHHHHH - copy and paste

http://www.drdeeblanco.com/Articles/Vaccinations/tabid/331/Default.aspx

GO ROBERTA!

Spoke with Julia's Life Care Planner Tonight -she will be here within the next few weeks. She had a lot of insight into how she would represent her against the dept of human services Life care planner (who she said was a "female dog" - my response - LET ME AT HER!) Anyway, I am hopeful for some financial and resourceful help for Julia for the rest of her life. Julia will likely be unable to live independantly - ever, so her future depends on Roberta and Ron. PLEASE PRAY AND BELIEVE - in the system and more importantly, in God.

Susan

why oh why do my links not work...if anyone knows tell me how to fix it....this is an awesome video, even though julia is not "autistic", her neurologist said she would benefit most from a program for autistic kids......

please copy and paste.....

http://www.youtube.com/watch?v=HDdcDlQVYtM

another cancellation

Julia's attorney will not be able to make it out now til the new year....cancelled yesterday. The life care planner will still be coming out in november, but not him. Dissappointed to say the least. Oh well, it will happen soon, i suppose. We are closer now than we were three years ago.

Susan

Mark Shultz song - can you hear me - change the "son" and "him" to to "daughter" and "her" and I love it. Borrowed from Santana's web page...

I'm down on my knees again tonight,
I'm hoppin' this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone.

Can You hear me?
Can You see him?
Please don't leave him,
He's my son

Julia's neuro appt today

Julia had her 6 month follow up with neurology today. The news is not good or bad - not suprising -basically just wait and see again. One bit of concern was that her head has not grown since the vaccine injury three yrs ago. Her weight and height are in the 75 and 55% but her head is too small to even be on the charts. I asked about repeating an MRI and they said it really won't give us much information and that the only way to see if she is getting better is to SEE her get better. She explained to me that with the damage being primarily on her frontal lobes of her brain (both sides) that she is always going to have issues with behavior and impulse control. She said she will never be normal. But that she still has hope that she will improve - to what degree??? nobody knows. She said me putting her in that school that I did was the best thing I could have done for her - that hopefully the structure will teach her about appropriate behavior and socialization. She said it will likely take a lot of time, and I only have enough money for about 10 months for the school, so i will have to figure that one out.

I am so so so very angry about what happened to her. The dr's seem so callous - well maybe not callous, but just very "nonchalant" or "indifferent" about it all - i guess i get that way too in vet med, but these are people KIDS, not just dogs and cats. I don't know - i want it put to me straight, but it hurts to see them so...whatever....about it. They never knew her "before" - that she was an incredible baby with a fabulous personality, and now her life is FOREVER changed because of a stupid vaccine, for something she NEVER would have probably gotten anyway. I am so sad today. Happy birthday to me.....whatever. I just want to go to bed - tomorrow is another day.

Thanks to all of you who show your continued support for Julia and her crazy mom! :) Kidding, sort of.

Susan