Re: today was awful

[Guest guest]

Oh Pam...

I am so sorry for all of you. I can somewhat imagine 's

embarrassement...I fainted (nothing as serious as a seizures to be

sure) during a 5th grade chior concent and knocked 5 boys off the

bleachers. Of course, one of them was the one I couldn't even look at

without blushing, my crush on him was so complete. To this day, I

feel hot and itchy around the collar thinking back on that day. I

have to say though that I truly remember all the kids being very

caring and not one person ever picked on me about it. I'll be

praying it's the same for .

I can also understand your feelings of wondering what it must seem

like from the outside looking in. We are very matter of fact with

Sev's seizures now...there's only so many you can cry and panic for

and then it's just another day, another seizure. People are always

so taken aback by our relaxed attitude to what in most people's lives

is a RARE and HORRIFYING event. Once, a diagnostician asked what I

felt Sev's greatest skill was and without thinking, I

said " seizing...he's GREAT at that. " She was really thrown off and

I'm sure she wrote something about denial in her report. Not sure if

this is helping, other than to let you know you ARE NOT ALONE in all

of this. Hope tomorrow's a better day for ...Nan

[Guest guest]

Pam, I don't even know what to say exept to send huge hugs to you

and your family! I pray that s next performance goes better for

her. I wouldn't worry about others reactions to you and your

husband, you know what is best, I think we do grow cold to the

situation for we see it every time, they don't have to live with the

pain of it... Praying for a happy holiday for you and your family,

[Guest guest]

Oh Pam, feeling that one, and hating this disease right along with you and

. That 'thud' we all know so well, ugh, how absolutely devastating to

hear it when she was up there in that position.

How brave of her to be willing to try again tomorrow, she truly is a

battler, and I take my hat off to her - she has more guts than I probably

did at her age. The VERY best of luck for the 2nd concert to all of you,

lets hope dh is able to stay tucked away in the wings, and that she

shines.......as she deserves to.

----- Original Message -----

> Our local auditorium (home of the symphony orchestra) held a benefit

concert today for our local shelter house. Admission was a canned good for

shelter house.

>

> Local groups sang, played instruments, danced, etc.

>

> My son's violin ensemble group played three carols and then 's choir

was on. It is a city wide choir with three levels. is in the Bel

Canto group for children ages 10 - 14. The first two songs went great. I

took my eyes off of for a brief second and then heard thud. She went

down fast and lay on the stage with an audience of 600 or better,

convulsing. The choir director went to her side and then myself and a

nurse from the crowd ran up onto stage. The nurse carried her off stage to

save her the embarassment of coming out of it to find 600 people staring at

her.

>

> She came around about 5 minutes later. She is devasted and beyond. She

is a Christian, but doesn't understand why. Do any of us at times? She

says she prayed all the way to the concert that God wouldn't let her seizure

during those 10 minutes that she was on stage.

>

> She has another performance tomorrow. It is her choir's big Christmas

concert. She will be singing for 1/2 hour - 45 minutes. My husband is

going to sit just off stage. She has permission to just walk off if she

feels one coming on and has any warning. If not, dh will catch her

hopefully.

>

> I want to give my daughter no seizures for Christmas and I can't. I hate

this horrible disease! I feel like I've grown cold. I watched everyone

caring for her today and it is so commonplace with us that I feel we seem

cold to others who watch our reactions. My 2 year old knows what seizures

are. She said just yesterday, " Mommy, had a seizure, she was blowing

bubbles again. "

>

> Pam

[Guest guest]

Pam-

Gosh, like many, I so feel your pain.

Just a thought...I was listening to a Zig Zigler (positive motivator)

tape the other day and he was discussing taking test's and how one

student studied and studied and the test day came and the student

repeated over and over to himself not to fail, do not fail. But he

failed anyways, Zigs point in all of this was the last thing on the

students brain was " not to fail " and he became so stressed about not

failing that is exactly what happened. I know we can't control seizure

with just positive thinking or none of us would have kiddies with this

awful disorder, but I know stress can cause seizures I have seen it in

my son as well as heard of many of stories. Is there something you

could do with to distract her the day of her next performance, do

something she loves to do? Get her mind as far away from stress as

possible? Just a thought...

, mom to Ethan (almost 10 months old)

today was awful

Our local auditorium (home of the symphony orchestra) held a benefit

concert today for our local shelter house. Admission was a canned good

for shelter house.

Local groups sang, played instruments, danced, etc.

My son's violin ensemble group played three carols and then 's

choir was on. It is a city wide choir with three levels. is in

the Bel Canto group for children ages 10 - 14. The first two songs

went great. I took my eyes off of for a brief second and then

heard thud. She went down fast and lay on the stage with an audience

of 600 or better, convulsing. The choir director went to her side and

then myself and a nurse from the crowd ran up onto stage. The nurse

carried her off stage to save her the embarassment of coming out of it

to find 600 people staring at her.

She came around about 5 minutes later. She is devasted and beyond.

She is a Christian, but doesn't understand why. Do any of us at times?

She says she prayed all the way to the concert that God wouldn't let her

seizure during those 10 minutes that she was on stage.

She has another performance tomorrow. It is her choir's big Christmas

concert. She will be singing for 1/2 hour - 45 minutes. My husband

is going to sit just off stage. She has permission to just walk off if

she feels one coming on and has any warning. If not, dh will catch her

hopefully.

I want to give my daughter no seizures for Christmas and I can't. I

hate this horrible disease! I feel like I've grown cold. I watched

everyone caring for her today and it is so commonplace with us that I

feel we seem cold to others who watch our reactions. My 2 year old

knows what seizures are. She said just yesterday, " Mommy, had a

seizure, she was blowing bubbles again. "

Pam

[Guest guest]

Pam,

I am so sorry this happened to . 2 months after my daughter,

, was diagnosed with e. she had her first piano recital. She was

so afraid she would have a seizure while playing. She didn't... but

she did have a tc seizure backstage right after she was finished.

Everyone was great... but they all commented on how calm I was.

Well, maybe I seemed calm, but I definitely wasn't. I was thankful

that if it had to happen it happened when it did, but still.... (

The proof of 's strength is that she's going back to sing

again. Not every kid would do that, and no one would blame them.

But, it is a tribute to that she has chosen to " get back in the

saddle " as we say out West. Let us know how it goes.

I believe that God has a plan for each and every one of us. I can't

begin to know why her prayer for no seizures during her performance

wasn't answered with a " yes " . One of my favorite passages in

scripture is Romans 8:28.

" We know that all things work together for GOOD for those who love

God, who are called according to His purpose. "

There IS so much we cannot understand, especially when it comes to

why our kids have seizures. But, I believe God has a plan for each

and every one of us, included ... and his plans are always

GOOD. God's ways are not our ways. I don't think I will ever

understand why our kids must suffer through this malady. But, I do

know that God can bring good to any situation in His own time.

Please give a hug from us and tell her we are so proud of her.

Cammie

> Our local auditorium (home of the symphony orchestra) held a

benefit concert today for our local shelter house. Admission was a

canned good for shelter house.

>

> Local groups sang, played instruments, danced, etc.

>

> My son's violin ensemble group played three carols and then 's

choir was on. It is a city wide choir with three levels. is

in the Bel Canto group for children ages 10 - 14. The first two

songs went great. I took my eyes off of for a brief second

and then heard thud. She went down fast and lay on the stage with

an audience of 600 or better, convulsing. The choir director went

to her side and then myself and a nurse from the crowd ran up onto

stage. The nurse carried her off stage to save her the embarassment

of coming out of it to find 600 people staring at her.

>

> She came around about 5 minutes later. She is devasted and

beyond. She is a Christian, but doesn't understand why. Do any of

us at times? She says she prayed all the way to the concert that

God wouldn't let her seizure during those 10 minutes that she was on

stage.

>

> She has another performance tomorrow. It is her choir's big

Christmas concert. She will be singing for 1/2 hour - 45 minutes.

My husband is going to sit just off stage. She has permission to

just walk off if she feels one coming on and has any warning. If

not, dh will catch her hopefully.

>

> I want to give my daughter no seizures for Christmas and I can't.

I hate this horrible disease! I feel like I've grown cold. I

watched everyone caring for her today and it is so commonplace with

us that I feel we seem cold to others who watch our reactions. My 2

year old knows what seizures are. She said just yesterday, " Mommy,

had a seizure, she was blowing bubbles again. "

>

> Pam

>

>

>