Paper

Originally written 9/17/97

Pieces of paper make up life.
Whether living or dying,
in love and in strife.
Fine lines are written each and every day.
Some tossed in a basket
with the words wasted away.
Others given with hope and dreams in the making
and later tears are shed
from the toll they have taken.
Tiny printing as the thoughts are exposed.
As the reader responds with a wrinkling nose.
Unlike the mouth with words thrown to the air,
these pages are unfolding and keeping
a timeless work enriched with passion and despair.
Spoken once and written on an evening's whim,
to be forever cherished or hidden
by the rest of them.
Trees of sacrifice for the human mind
to pen and scratch on the surface of time.
Masterpieces to moms by a child so young,
love letters to a man who has come undone.
Laws and regulations to bind or to break,
and promises kept and buried deep within the grave.
Paper so simple
but complex in the making
have made many lives remembered
or wished to be forgotten.

Shelley Robinson Greeves

Compassionate Friends

After my son passed away I joined a wonderful group called the Compassionate Friends. http://compassionatefriends.org. I was skeptical about attending meetings with other grieving parents as I anticipated it to be a pity party. I was amazed at the parents involved in this organization. I really benefited from their strength and their ability to face their grief head on. Some parents had lost children to murder, suicide, illness, long term illness, accidents, etc. At the time I was really struggling with depression and the people there gave me hope. I highly recommend supporting this organization in any way you can.

Trade With Me

Originally written on May 1, 1996

Kiss that dream goodbye -
I'd gladly die instead.
As I cannot change a thing in my world or my head.
What else can I do but to sit and watch it pass.
I cannot repair,
fix
or create
a way of escape for him.
this life I made is flawed and weak.
I created him out of love -
How could I allow love to mix with pain?
Grief is a mild word when I try to grasp the ache.
Why can't he be at peace in this world I brought him in?
He deserves so much more and I want to trade hi place.
So he can live a healthy life without his frail frame.
But, if he traded with me and lived my life-
I could not bear to think he would have to bear my strife.
The strife of watching this humanity pass on before his eyes.
If he is to watch me go on in my demise.
Both of us have pain to share
As I watch him lying there.
A mother's ache is deep and anguished too-
I could not trade and have him experience this as well.
What a dilemma
I must give up control.
God only has the answers to what I do not know.

Frumple Bear

When my son was sick I found an outlet in writing. One of my outlets was Frumple Bear. I had this idea that since many kids who were hospitalized had friends and others who didn't understand or weren't educated on how to treat people with illnesses. My son and I suffered with many people looking, staring, making assumptions, saying unkind things, etc. Frumple Bear was the idea of writing a series of children's books where kids would learn about disabilities, illnesses, etc. Frumple was actually a stuffed animal my little brother gave my son and that is how the character came to be.

The following is an excerpt from my story idea:
Frumple's Gift
by Shelley L. Robinson
Frumple was very tired of the dark box. He heard lots of noises and singing outisde. Why was he in this box? Frumple heard a man's voice say "Here's the gift you have been waiting for son!" The box moved and ripped and Frumple was in a bright room. "Wow!" He thought. All of the people in the room cheered. There were children everywhere. Balloons and cake and food too! The little boy's mom put Frumple in a big chair next to the little boy. The little boy did not reach out to hug him and did not look at him. He just sat there and wiggled a lot with a big smile on his face. Frumple thought that the little boy did not like him. Frumple was very sad and started to cry. Frumple hid his eyes for the rest of the party because he did not want the children to see him crying. Frumple wanted to be loved. He wanted to love the little boy too. He did not know what to do. All of the people at the birthday party did not seem to notice that the little boy was not hugging or petting Frumple. What was going on? The party was over and the little boy was tired. He was falling asleep in his strange chair. His mommy put him to bed and Frumple sat on the sofa. He will still very sad. "What is wrong little bear?" said a small sweet voice. Frumple looked up from the couch and saw a pretty butterfly in the window outside. "Hi" said Frumple bear. "I am Bella Butterfly." Said the pretty white winged creature. "I live here and watch over the little boy." She said. "He is very different than other little boys." "Why won't he hug me or look at me?" asked Frumple. "He is special. He was born with a brain that was hurt." "His brain is hurt? How did that happen?" asked Frumple. "His parents do not know why, but he is very loving and you are his best birthday gift." Said Bella. "I am?" asked Frumple. He was curious now. "Can he hug me at all?" "No" said Bella, "But he likes to be touched and loves soft toys like you!" "Can he see me?" asked Frumple. "No, but he can feel your soft fur and knows that you love him." Said Bella. "He likes to look at the sun in the sky too as he can only see light." "He looks at the sun? Doesn't that hurt his eyes?" asked Frumple. "No, because his brain is hurt he does not see like other little children." "Can he walk or skin his knees likes other kids do?" asked Frumple. "No, he sits in a big chair with wheels called a wheelchair. It helps his mommy take him to the park or to school. His legs do not work like other little boys." Said Bella. "Does he talk or say words?" asked Frumple. "He can say mommy and that is all. He tries to talk but his brain does not work properly even though he tries very hard." Said Bella. "That is so sad," said Frumple, " I wish he could talk to me." "I want to tell him stories and be his friend." "You can be his friend. He needs friends more than anyone. He is very special and likes to be talked to, but he just can't talk back the way that other kids do." "If he can't talk and he can't see, does he know who his mommy and daddy are?" asked Frumple. "Yes, he knows his family and his friends - he is a little boy just like other boys, but his brain is hurt so he loves through touch, and sounds rather than words." Said Bella. "Wow! I have a lot to learn about my little boy." Said Frumple. "Yes you do", said Bella "and he needs a lot of love from you." "I have so many questions!" said Frumple. "Why does he wiggle so much in his wheelchair? Is he upset or mad?" "No, his brain tells him to move and he can't tell it to stop - he is a little wiggleworm!" said Bella. "Don't let his wiggling scare you - he just needs a hug from you to stop it!" "Does he burp?" asked Frumple. Bella laughed. "Yes he burps, but he does not eat like other little children." "How does he eat and does he spit out his veggies?" asked Frumple. "He eats with a tube in his tummy because his brain will not let him learn how to eat." "Does it hurt?" asked Frumple. "No, it does not hurt and he still burps a lot!" said Bella. "Will the little boy like me?" asked Frumple. "I hope I did not hurt his feelings when I sat by him today." "He will like you. When people meet the little boy they do not know how to love him very well because he is so special." "The little boy just wants love" said Bella. "You can give him love." Just then the boy's mommy came in the room and picked up Frumple. She smiled at Frumple and said "welcome to our family little bear. It's time to go to sleep with my little boy." She brought Frumple upstairs and tucked him in next to the little boy. The little boy did not wake up and Frumple cuddled in next to him. Frumple snuggled in to the little boy's neck and his soft fur was against the child's pudgy cheek. The little boy smiled so big until his eyes were squinted in big wrinkles. The little boy was happy and Frumple was loved. The End. "

To follow are some of the other story line ideas I had for Frumple to continue:

Frumple and the BIG cough ~kids learn about sick kids - i.e. pneumonia
Frumple and the Big Word ~kids learn about seizures/epilepsy
Frumple Goes Shopping ~kids learn about not staring at special people instead befriending them Frumple and the Mean words ~kids learn about people making fun of people who are different Frumple and the Giant Question ~kids learn about how to ask about special one
Frumple's Huge Heart ~kids learn how to be friends with special ones
Frumple's Saddest Day ~kids learn about death

What This Blog Is....

I lost my son due to a five year chronic genetic condition 7 years ago. This blog will highlight poetry and writings from his illness, subsequent death and my personal journal during and after. The personal journey includes my marriage dissolution, my attempts at self love and awareness.  It will also highlight and document my future attempts at pregnancy and ultimately the birth of my baby daughter, Stella Joy.