How many times I have picked up this pen ...
starting but never finishing ... unable to write thru all my tears ...
If only I could write the words to heal,
find the verses to give you back these lost years ...
~Little Girl Lost~
I watched you from across the room today ...
I saw your beautiful smile thru my silent tears.
You don't smile like that very often,
you carry so many burdens on those shoulders of only sixteen years.
And I watched you ... watching them ...
I saw the left behind, hurt, look in your eyes.
I see the way they look at you ...
but they cant see past your mask, your protective disguise.
You should be there with them,
laughing and just being a teen.
Not sitting here with me ...
as your life passes you by ... fate must seem so cruel, so mean.
It hurts me in a place so deep ...
this never ending pain I try so hard to hide.
But the way you handle each moment with grace,
makes my aching heart fill with healing pride.
I sit here each new day ... in awe of you,
you are already so much stronger than I will ever be.
You carry all your pain and losses ...
and you do it each day with such dignity.
I think back to the promise born in you ...
and the dreams and futures that have been stolen away.
The gifted violinist, the talented artist ...
now a body tormented with pain ... those gifts seem gone to stay.
Each day I try not to ask why ...
I try to accept the reasons, the way you do.
But God I would give anything ...
if it was me who was sick instead of you.
I've already lived my life ...
you never got a start on all your dreams.
It all so unfair ...
still I must try to hide my mother's tears and screams.
Together I know we can make it ...
I know we can find the strength to get through.
Anytime I think I'm lost ...
all I have to do is see the light that radiates from you.
You are the sunshine in my day,
you are my reason and my rhyme.
You give me hope to carry on ...
by you ... my life is sweetly defined
I love you my sweet Rachel Rene,
more than you will ever understand.
Well, thats not entirely true ... I know you do,
I know by the way you just reached over and took my hand.
for my daughter Rachel, who suffers from Fibromylagia and Myofacial Pain Syndrome, as well as Chronic Fatigue Syndrome. (Diagnosed at 12)
It is an Arthritis like illness that causes muscle, joint, and soft tissue pain throughout the body.
As well as attacking the bodies immune system.
She is a lesson in strength, patience, and dignity.
Though too sick to attend classes at her high school, she is home tutored and
continues to make straight A's as she did when she was able to go to school.
I wrote this after we had a rare day out ... we went to the mall to have lunch to
celebrate her report card.
It was hard to see many of the kids from her school there, but she took it all in stride
with her usual grace.
This is the first time I have ever been able to write about this subject.
Something's are just too hard to express.
I would like to thank a special friend from here, who when I told of Rachel's illness--
sent me websites and names of books to look for new information about
As well as several long informational E-mails.
Thank you Parker, you are a good friend and kind soul.
I truly appreciate the time and effort, and you.
**** I want to come back and clarify,
so there is no confusion,
What Rachel has is not life threatening...
I know there are SO many parents who care for sick children and many live each day wondering if its their last.
I thank God everyday I dont have to live with that burden.
I just wanted to make this clear. I should have put it the post at the start.
[This message has been edited by Janet Marie (edited 06-25-2000).]