A Mother's Journal
A Nightmare that Can Be Prevented

Jimmy,
my youngest son,
love of my life:
I'm so sorry that you are suffering

As I sit here
watching your sleeping form
I know you are close to leaving me.
I can't change what is happening
to you. Even so, I feel tremendous
mind-numbing guilt. I am your mother.
I held your hand as it twitched awake
after your surgeries. I watched you
walk clumsily, with your little
lopsided gait for the first time.
You had a proud "I did it" look on
your angelic face.

I watched with tears in my eyes
as you used those newly acquired
walking skills to run from me, the
first of many journeys you would make
into the world. My heart was so confused
as I held your hand on the way to
to kindergarten. Your grasp was firm,
yet shaky as we ventured into this new
phase of your life together.

I sit here now, with an excruciating
pain piercing my heart. I beg GOD for
more time. It's ok that you are too far
gone to remember me. The body that used
to be your freedom imprisons you.

Oh, if only the physical changes that
are happening could be halted by your
strong spirit, by the love you are
surrounded with! I would take your place.
I have lived long enough. I am not strong
enough to function without you. I cannot
bear to watch you die!

All of your dreams are not going to
happen. You will never go to middle school,
attend your senior prom, have children of
your own. Your right to rebel during puberty
has been stolen from you. I would give
everything to hear you defy me! Wake up!
Argue with me! Tell me you hate peanut butter
and jelly sandwiches and Chex mix. Argue
heatedly with me about what you want to wear
to school. I would love to tease you gently
about your forgetfulness. Regret tears at me;
I should have appreciated those times more.

The silence is complete. You are slowly
fading before my eyes, and my only option is
to make you comfortable, the same thing I was
told when our dog was terminally ill. I sit
here, full of uncontrollable rage. You are
dying. Your head is filled with fluid that
your shunt is no longer draining. Your head
is getting bigger, your brain is being pushed
to the side of your head, and you are barely
alive.

As you wither away before my eyes, I am already
grieving. I study you, watching your chest rise
with each shallow breath, willing and dreading
the end. I stare at you, lying there. My heart
feels ripped open and wounded. My eyes are so
full of tears, I cannot see. I wipe them away in
a quick and angry manner. I'm exploding with
anguish that will surely kill me. My weary mind
registers the difference, long before my heart
can accept it.

You are still.
Totally and absolutely silent.
No breath, no flickers, nothing.
I cannot breathe.
I cannot think.
I cannot move.
My heart has surely stopped!

I lose track of time as I study your pale profile.
I want to be close to you. I climb in the bed and
curl up next to you, putting your head on my
breast, the position you loved to assume when you
were watching tv or excitedly telling me about your
day. You feel so cold. I cover you, rubbing your
little arms in some insane attempt to make you better.
I notice that your hair is in your eyes again. I
brush it aside, putting it just right. Then,
remembering that you liked it that way, I ever so
gently push the stubborn wisp back. There. You look
so beautiful.

"Oh dear GOD", I wail, "how could you have let this
happen? Bring him back, Lord, bring him back! Make
him breathe again, warm his body, let me feel his
heartbeat through his adolescent chest! I'll do
anything!"

Somehow I am draped across your body, a mother
without her son, without a reason to live. My eyes
are swollen, grain and red. I can't see past the
pain, but that doesn't matter. I'm trapped inside
my anguish. I need not see the world responsible
for your death. I moan from somewhere deep within
myself as I pull you into my lap, to protect you,
to keep you safe. We rock together, a mother and
son, as I struggle to contain the grief only a
mother can feel... 

The nightmare is so real that I wake up, feverish and sobbing, having kicked myself awake. My son, along with thousands of other children and adults, could die if the Lieberman-McCain and Gekas Biomaterials Access Assurance bills (S.364/H.R.872) of 1997 is not passed. His lifesaving shunt, a shunt that is needed due to his hydrocephalus (fluid on the brain) is made of silicone. Silicone in itself is not harmful, but because of the millions of dollars suppliers of silicone stand to lose due to potential lawsuits, they are halting sales to device manufacturers. Silicone has neither a positive NOR negative affect on the body, and it's used in lifesaving devices for millions of people. Contrary to the initial publicity surrounding breast implant litigation, silicone helps SAVE many lives. Without the protection the Biomaterials Access Assurance Act will provide, my child will suffer. There's no guarantee that fate will not take him from me in some other way, but THIS is preventable. His shunt is as important to his survival as insulin is to mine. This issue should be above politics and should not be held hostage to delays in the legislative process. Congress must adopt and the President must sign the Biomaterials Access Assurance Act into law this year. Patients and their loved ones will not understand if Congress and the President fail to act. I just told you my nightmare. Please, keep it from becoming my reality.

This is not for distribution in any way, shape or form without prior written permission
from the author Vicki Gladden 1997 All rights reserved.

Please Visit Vicki's home page, she is truly a talented lady!!!
http://www.geocities.com/Heartland/Meadows/2888/index1.html

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