tear jerker -- don't read if it's not a good day...

[Guest guest]

I found this while looking for heart transplant info. I know many of us can

relate all too well.

Michele W

" When Time Stands Still "

by Debbie Hilton-Kamm

It starts with news impossible to hear

It conjures up your every fear

It's when they say your child is ill

That's when time just stands still

In that moment, that suspended time

A thousand thoughts run through your mind

Will he ever laugh and play?

Will I see his wedding day?

All the planning, the hopes and dreams

Are put on hold -- just what does this mean?

His crib is empty, his toys alone

For now, the hospital will be his home

This is a place where time stands still

Where the void's too large to ever fill

For in a hospital's intensive care

Children lie, some unconscious, some aware

And time is measured by a new yardstick

Every second marked by a monitor's tick

Noting every breath the child takes

And every beat his tired heart makes

Just a moment of watching a child writhe or strain

In sedated confusion, or fear or pain

Or pleading for a drink to which you can't oblige

Seems like far more than an entire lifetime

And the children who live far too long

In hospital gowns, trying to be strong

They have old souls, that's what they say

Because in each moment they've lived a thousand days

For those who say time goes by too fast

Sit with an ill child, and see just how slowly time can pass

[Guest guest]

Wow, so powerful and so true. This is a keeper...

www.chargesyndrome.info

>

> a

> " When Time Stands Still "

> by Debbie Hilton-Kamm

>

> It starts with news impossible to hear

> It conjures up your every fear

> It's when they say your child is ill

> That's when time just stands still

>

> In that moment, that suspended time

> A thousand thoughts run through your mind

> Will he ever laugh and play?

> Will I see his wedding day?

>

> All the planning, the hopes and dreams

> Are put on hold -- just what does this mean?

> His crib is empty, his toys alone

> For now, the hospital will be his home

>

> This is a place where time stands still

> Where the void's too large to ever fill

> For in a hospital's intensive care

> Children lie, some unconscious, some aware

>

> And time is measured by a new yardstick

> Every second marked by a monitor's tick

> Noting every breath the child takes

> And every beat his tired heart makes

>

> Just a moment of watching a child writhe or strain

> In sedated confusion, or fear or pain

> Or pleading for a drink to which you can't oblige

> Seems like far more than an entire lifetime

>

> And the children who live far too long

> In hospital gowns, trying to be strong

> They have old souls, that's what they say

> Because in each moment they've lived a thousand days

>

> For those who say time goes by too fast

> Sit with an ill child, and see just how slowly time can pass

>

>

[Guest guest]

I'm reading this as screams and bends her fingers and toes back while her

dad tries to comfort her. Time is standing still and I don't know what I can do

for my child.

Lori Myers

tear jerker -- don't read if it's not a good day...

I found this while looking for heart transplant info. I know many of us can

relate all too well.

Michele W

" When Time Stands Still "

by Debbie Hilton-Kamm

It starts with news impossible to hear

It conjures up your every fear

It's when they say your child is ill

That's when time just stands still

In that moment, that suspended time

A thousand thoughts run through your mind

Will he ever laugh and play?

Will I see his wedding day?

All the planning, the hopes and dreams

Are put on hold -- just what does this mean?

His crib is empty, his toys alone

For now, the hospital will be his home

This is a place where time stands still

Where the void's too large to ever fill

For in a hospital's intensive care

Children lie, some unconscious, some aware

And time is measured by a new yardstick

Every second marked by a monitor's tick

Noting every breath the child takes

And every beat his tired heart makes

Just a moment of watching a child writhe or strain

In sedated confusion, or fear or pain

Or pleading for a drink to which you can't oblige

Seems like far more than an entire lifetime

And the children who live far too long

In hospital gowns, trying to be strong

They have old souls, that's what they say

Because in each moment they've lived a thousand days

For those who say time goes by too fast

Sit with an ill child, and see just how slowly time can pass

[Guest guest]

i like that michelle i do have an old soul my dr used to call a bunch of us

that was all in at once in the same room shed say all the old lags r in

again r they thats no good LOL

>

> I'm reading this as screams and bends her fingers and toes back

> while her dad tries to comfort her. Time is standing still and I don't know

> what I can do for my child.

>

> Lori Myers

> tear jerker -- don't read if it's not a good day...

>

> I found this while looking for heart transplant info. I know many of us

> can

> relate all too well.

>

> Michele W

>

> " When Time Stands Still "

> by Debbie Hilton-Kamm

>

> It starts with news impossible to hear

> It conjures up your every fear

> It's when they say your child is ill

> That's when time just stands still

>

> In that moment, that suspended time

> A thousand thoughts run through your mind

> Will he ever laugh and play?

> Will I see his wedding day?

>

> All the planning, the hopes and dreams

> Are put on hold -- just what does this mean?

> His crib is empty, his toys alone

> For now, the hospital will be his home

>

> This is a place where time stands still

> Where the void's too large to ever fill

> For in a hospital's intensive care

> Children lie, some unconscious, some aware

>

> And time is measured by a new yardstick

> Every second marked by a monitor's tick

> Noting every breath the child takes

> And every beat his tired heart makes

>

> Just a moment of watching a child writhe or strain

> In sedated confusion, or fear or pain

> Or pleading for a drink to which you can't oblige

> Seems like far more than an entire lifetime

>

> And the children who live far too long

> In hospital gowns, trying to be strong

> They have old souls, that's what they say

> Because in each moment they've lived a thousand days

>

> For those who say time goes by too fast

> Sit with an ill child, and see just how slowly time can pass

>

>

[Guest guest]

Lori,

So sorry to hear that is having a hard time. Seems like she's trying

to communicate something...how hard for you & she both.

Hugs,

http://www.chargesyndrome.info

>

> I'm reading this as screams and bends her fingers and toes back

> while her dad tries to comfort her. Time is standing still and I don't know

> what I can do for my child.

>

> Lori Myers

> tear jerker -- don't read if it's not a good day...

>

> I found this while looking for heart transplant info. I know many of us

> can

> relate all too well.

>

> Michele W

>

> " When Time Stands Still "

> by Debbie Hilton-Kamm

>

> It starts with news impossible to hear

> It conjures up your every fear

> It's when they say your child is ill

> That's when time just stands still

>

> In that moment, that suspended time

> A thousand thoughts run through your mind

> Will he ever laugh and play?

> Will I see his wedding day?

>

> All the planning, the hopes and dreams

> Are put on hold -- just what does this mean?

> His crib is empty, his toys alone

> For now, the hospital will be his home

>

> This is a place where time stands still

> Where the void's too large to ever fill

> For in a hospital's intensive care

> Children lie, some unconscious, some aware

>

> And time is measured by a new yardstick

> Every second marked by a monitor's tick

> Noting every breath the child takes

> And every beat his tired heart makes

>

> Just a moment of watching a child writhe or strain

> In sedated confusion, or fear or pain

> Or pleading for a drink to which you can't oblige

> Seems like far more than an entire lifetime

>

> And the children who live far too long

> In hospital gowns, trying to be strong

> They have old souls, that's what they say

> Because in each moment they've lived a thousand days

>

> For those who say time goes by too fast

> Sit with an ill child, and see just how slowly time can pass

>

>

[Guest guest]

Lori -

I'm so sorry that times are difficult right now. Please take a moment to

take a deep breath and feel the cyber hugs from all of us. We can't make

the clock start moving, but we can give support to you as you try to manage

in this moment. Did you guys get any sleep last night? How's today?

I hope this day has brought something better.

Michele W

Aubrie's mom 8 yrs

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Lori Myers

Sent: Saturday, October 14, 2006 10:26 PM

To: CHARGE

Subject: Re: tear jerker -- don't read if it's not a good day...

I'm reading this as screams and bends her fingers and toes back while

her dad tries to comfort her. Time is standing still and I don't know what I

can do for my child.

Lori Myers

[Guest guest]

Michele, thank you for the beautiful poem. After two years, it is still

comforting to know that others feel the same as I do/did.

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

4 years, married to the best daddy in the world for 9 years!

-- tear jerker -- don't read if it's not a good day...

I found this while looking for heart transplant info. I know many of us can

relate all too well.

Michele W

" When Time Stands Still "

by Debbie Hilton-Kamm

It starts with news impossible to hear

It conjures up your every fear

It's when they say your child is ill

That's when time just stands still

In that moment, that suspended time

A thousand thoughts run through your mind

Will he ever laugh and play?

Will I see his wedding day?

All the planning, the hopes and dreams

Are put on hold -- just what does this mean?

His crib is empty, his toys alone

For now, the hospital will be his home

This is a place where time stands still

Where the void's too large to ever fill

For in a hospital's intensive care

Children lie, some unconscious, some aware

And time is measured by a new yardstick

Every second marked by a monitor's tick

Noting every breath the child takes

And every beat his tired heart makes

Just a moment of watching a child writhe or strain

In sedated confusion, or fear or pain

Or pleading for a drink to which you can't oblige

Seems like far more than an entire lifetime

And the children who live far too long

In hospital gowns, trying to be strong

They have old souls, that's what they say

Because in each moment they've lived a thousand days

For those who say time goes by too fast

Sit with an ill child, and see just how slowly time can pass

[Guest guest]

This group is so wonderful to help and is full of information. I have been a

member for four years, but never felt I knew enough to contribute. I hope to

change that and be more helpful. I sure wish my mother could have had this

support back when my brother was born in 1980. He was born with Hypoplastic left

ventricle. In the 80's a heart transplant wasn't an option. I am still amazed

that we can e-mail a doctor half-way around the world for support. Crystal, I

sure hope you find the comfort you need to get through this hard time in your

life. Maybe, you could check with the nurses in the hosptial and ask if there

are other families in your situation. When Tag was in the hosptial our nurse

introduced us to a family with a CHARGE baby and it helped alot.... (I know what

are the chances of that?????)

Abbey mother to Tag(CHARGE)Baylor, Payton, Ryder

---------------------------------

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

Abbey-

You're right - the Internet has made a huge difference in the lives of our

families and kids by bringing us all together. You've probably noticed that

we all seem to go through spurts of being very active and being quiet. Each

of us gets busy with our lives and can reply more at some times than at

others. So feel free to chime in whenever you have time to make comments

and suggestions. But never feel guilty when you can't. And always know

that any comments are helpful. You never know to whom your words will have

meaning - sometimes beyond what you intend.

Michele W

Aubrie's mom

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Abbey Harding

Sent: Monday, October 16, 2006 12:35 PM

To: CHARGE

Subject: Re: tear jerker -- don't read if it's not a good day...

This group is so wonderful to help and is full of information. I have been a

member for four years, but never felt I knew enough to contribute. I hope to

change that and be more helpful. I sure wish my mother could have had this

support back when my brother was born in 1980. He was born with Hypoplastic

left ventricle. In the 80's a heart transplant wasn't an option. I am still

amazed that we can e-mail a doctor half-way around the world for support.

Crystal, I sure hope you find the comfort you need to get through this hard

time in your life. Maybe, you could check with the nurses in the hosptial

and ask if there are other families in your situation. When Tag was in the

hosptial our nurse introduced us to a family with a CHARGE baby and it

helped alot.... (I know what are the chances of that?????)

Abbey mother to Tag(CHARGE)Baylor, Payton, Ryder

[Guest guest]

Abby - your kids have great names!

Lori Myers

Re: tear jerker -- don't read if it's not a good day...

This group is so wonderful to help and is full of information. I have been a

member for four years, but never felt I knew enough to contribute. I hope to

change that and be more helpful. I sure wish my mother could have had this

support back when my brother was born in 1980. He was born with Hypoplastic left

ventricle. In the 80's a heart transplant wasn't an option. I am still amazed

that we can e-mail a doctor half-way around the world for support. Crystal, I

sure hope you find the comfort you need to get through this hard time in your

life. Maybe, you could check with the nurses in the hosptial and ask if there

are other families in your situation. When Tag was in the hosptial our nurse

introduced us to a family with a CHARGE baby and it helped alot.... (I know what

are the chances of that?????)

Abbey mother to Tag(CHARGE)Baylor, Payton, Ryder

---------------------------------

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

,

Thanks so much for your reply. I have noticed you are always so kind and make

sure everyone gets a reply to their questions. I have really enjoyed reading

your comments over the years. You're so sweet.

Abbey mother to Tag(CHARGE)Baylor, Payton and Ryder

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Lori,

You're so cute!! Thank you, that made my day!!!

Abbey mother to Tag(CHARGE) Baylor, Payton and Ryder

---------------------------------

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