Denise's Journal
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October 31, 2007
to all my HD Family
if it was not for you i would not walk
if not for you i would not talk
if not for you i would not teach everything that i was taught
if not for you i would be an empty shell
if not for you i would dwell
if not for you i would feel alone
i may even not go home
but you give me strength i thought i never had
you are the ones that make me glad
as i sit here by myself i do not dwell on the old life i had
you are the one that remines me i'm not alone
that i have a home
thank you all
thank you family and friends
thank you researcher and test traits
thank you thoughs whom give there hearts
those whom have been there from the start
i give my thanks to all of you and with all
i hope this chain will finally break
and HD will take it's place
....in it's grave. -
October 20, 2007
The Tale of the Beautiful Soul
This soul came to us as an Infant
Concieved in the deepest of love
In the stillness of our hospital room
Came a quiet thought from above
"You can not keep her." said the still small voice
"She is only here for a little while."
Tears filled my eyes as I held her close
I wiped them, and forced a smile
This Babe was so delightful
Bouncey, loving , and smart
A laugh that came from her belly
Eyes that told you her heart
This toddler was fair haired and curly
She was giggley and gutsy and kind
She loved animals and people and flowers
And had no trouble speaking her mind
This child began to have problems
School was not what she thought it would be
But she could run like the wind, play with her friends,
And swim like a fish in the sea
This adolescent was quite different
She was moody and tearful and all
But it just seemed perfectly normal
Until the unusual fall
This time was painful for her
She was subject of taunting and tease
Until the day she finally asked
"Can we go to a doctor, please?"
This moment, I knew the answer
I remembered what that voice had said
" This lovely person has Huntington's!!"
The thought burst into my head
This doctor just confirmed it
And I just wanted to cry
She was just sixteen and surprised me
Saying " I live my life a day at a time and when I die, I die."
This teenager was such fun
She loved football games, NASCAR , and rock
She loved clothes, make-up , pizza, boys,
And New Kids on the Block
This young woman was a beauty
Eyes wide and round as a moon
That learned to talk all by themselves
And a smile that lit up a room
This disease was brutal and heartless
From learning, to walking, and more
It took its toll on the Beautiful Soul
And took her toward Heaven's door
This body was frail and tired
As I held her in my arms
My tears falling on her pallid face
As she said "I love you, Mom."
This Mother felt blessed and humble
Such a courageous soul to know
And said to her, "Don't wait for me."
"I'll be along...so, go.."
In the quiet of early morning
When she was all alone
The Beautiful Soul left us
We know that... she went Home
Huntington's used that body
It rendered it fragile and old
But it never quenched the grace and love
Brought to us by the Beautiful soul
This world may think me crazy
I no longer care
I speak all the time to the Beautiful Soul
Because I KNOW she's there
This heart of mine knows now
That beyond this earth there is more
God sent to us the Beautiful Soul
And now she's with him beyond Heaven's door
Cheryl Brown
October 10, 2000
Of My daughter , Kimberly -
October 20, 2007
The Room
As I looked around the room the shadows looked alive but were they? How did I get in to this room? There are windows and outside the sun is shinning but inside this room the light is dim. There are three doors in one of the walls. Where they go I do not know.
Over in the corner there is movement. It is a wheelchair with someone in it. The person is squirming in their seat. Their arms and legs are jumping about, as if they are dancing while seated. The face is contoured and the person is making sounds. I do not understand what the person is saying.
There is another person here. It is a young girl sitting in a rocker. She is holding something wrapped in a blanket. I can not see what it is but there is writing on the blanket. It is repeated over and over all over the blanket. It says, ?What if, what if.?
Movement outside one of the windows catches my eye. I go over and look out. I see children running and playing in the sunshine with their parents. For some reason it strikes me as odd that both parents are playing with the children. They all seam so happy but here in this room all I feel is sorrow. Why is that?
Out of the shadows of the room appears a young girl. She walks up to me. Looks real hard at me and then asks, ?Can you tell me why my mommy can not play with me??
?Who is your mother? I ask. ?She is the one in the wheelchair.? she replies. I turn and look again at the wheelchair. Yes, it is a woman but when I turn back to the little girl she is no longer there. I do not know where she has gone or for that matter where she came from in the first place.
What is this place and where do those doors go. I go over to the doors. There are signs on each one. The first door is ajar a little and I can see on the other side. The view is of a playground on a very cloudy day, with children playing but the parents are sitting on a bench. The husband appears to be holding the wife up. A little girl runs over and asks her daddy, ?Can Mommy play today Daddy?? ?No, little one you know your mother is not like the other mothers.? ?Will I be like mommy with my children??' the little girl asks her daddy. ?You know I can?t answer that little one. We will just have to wait and see.? The sign on the door reads, ?Daily life if you chose.? I do not know what it means.
I go to the second door. I read the sign, ?Daily life if you chose.? The same thing the other door said. I open it up and take a look. A man is sitting on a park bench watching the people in the park play and have fun. He has a newspaper in his hand but all it says over and over again and again is ?What if, what if.? He looks lonely and very sad. As I watch him he pulls out a picture and stares at it. I can see the woman in the picture. It is the woman in the wheelchair. How does all this tie together? I close the door and look around the room again. What is this room? Why am I here in it?
I decide to look at the third door. I expected the same sign but this one is different. It just says, ?It is over.? What is over? I open the door and the bright light from the other side floods the room. All the shadows are gone. I see the little girl run over to her mom and help her up from her chair. The woman walks to the door looks back and smiles, then goes through. When I look through the doorway I see the woman and little girl running, laughing, playing, they are having a great time. They appear to be floating on air. No, it is clouds they are running on. I close the door feeling like I have seen something that I should not have.
Now I look over at the wheelchair. It is not empty. There is another person there. Then out of the corner comes a little boy and the room plays out it story again. -
October 20, 2007
A poem written by Ron Cleveland
FootSteps
Following Footsteps In The Dust Of Time
From Those Who Have Gone Before
Some Have Wandered On Forever
Others Disappear Behind A Door
A Tracker Of Souls On The Road Of Life
Reads Our Story in The Dust Of Time
Tales Of Happiness And HeartBreak
Like A Tapistry Unwind
We See Footsteps Merge In Time Of Need
To Lend Help With A Heavy Load
Then On To Lifes Destination
Each Again On A Different Road
This Road of Life Has Many Stops
For The Soul Needs Rejuvination
Our Hearts Become Burdened And Heavy
We Turn Aside To Seek Salvation
Here On Lifes Road Is A Stop For Joy
With Cradles And Lambs And Flowers
The Birth Of A Child Has Happened Here
The Angels Sing In The Bowers
Like Mile Markers In The Dust Of Time
Teardrops Mark A Lifes Decline
Footprints Turn Away To Rest
Ending A Journey, Finished The Quest
This Is No Map I Draw For You
Though The Road You Travel, I Travel Too
But Should We Never Chance To Meet
Read This Message In The Dust At Your Feet
No One Knows Their Destiny
When Starting On This Road
Take Small Steps, Hold A Loving Hand
Help Others Carry Their Load
Seek Other Souls Upon This Road
Share Both Your Joy And Sorrow
Lean On A Friend When The Journey Gets Rough
Then Offer Your Shoulder Tomorrow
The Day Will Come When Your Journey's Done
You Feel So Tired And Weary
Lift Up Your Eyes, Hold Wide Your Arms
Behold What You Have Won
Ron Cleveland
8/20/01