Washing Frumple Bear

My 4 year old daughter Stella has about 200 stuffed animals. No exaggeration. She hoards them, loves them and tries to sleep with about 30 of them each night. We love watching her love on her little animals and pretend that she is caring for them all. She has recently taken a liking to her brother Sloan's favorite stuffed bear - Frumple. He is 17 years old - the age my son would be if he were still living. He is full of stains and has a faint smell of hospital and PediaSure still on him. I put him in her stuffed animal pile a couple of years ago after I had unpacked him from my son's memory box.

My daughter takes Frumple everywhere now and constantly asks why Sloan isn't there to play with his pal. It is difficult to have a conversation that she comprehends - she truly believes anyone who dies wakes up and comes back the next day. She believes he is playing and will return soon. I love how she thinks. Would help me to think that way sometimes.

The other day she asked me to give Frumple a bath because he was stinky. I got a bit short with her and said "NO!".....she has no idea why. But, I guess I should explain why....

Frumple was Sloan's headrest in his wheelchair. Frumple was Sloan's Hospital bed pal during every hospital stay and every surgery. Frumple was Sloan's napkin as his feeding tube would leak Pediasure all over his fabric coat. Frumple was Sloan's casket companion when he died. He traveled from Ohio to Michigan on the plane with Sloan and was supposed to lay to rest with him at the cemetary. During the ceremony at the funeral my brother Jeremy who was 9 years old at the time walked up to the casket, grabbed Frumple, handed him to me and said "he wants you to take care of him". Frumple became my comforter, my Kleenex and the only smell I could remember my son by for a long time.

My son has been gone for twelve years now. Frumple has been sitting patiently waiting for some time now. My lovely, beautiful, amazing child wants to play with him now. She wants to give him a bath. Ugh.

I put Stella to bed a couple of nights ago and took Frumple in to the laundry room. I smelled him and hugged him close one last time with all of his PediaSure stains and haunting smells. I turned on the washer on gentle cycle, poured in the lavender detergent, gave him a kiss and let the tears falls. In to the washer he went and 30 minutes later he was squeaky clean. I placed him in the dryer and once he was dry I placed him gently in my daughter's bed as she slept. She woke up so happy in the morning!

I miss you Sloan - now I think of you each and every time Stella is playing.
Thank you my two wonderful children for the gift of love you have given me.
Shelley

Birthdays....

Today my son Sloan would have been 12 years old. He was born on election day in 1994 while Tropical Storm Gordon was raging through south Florida where I lived. He weighed all of 3 pounds and 4 ounces and I don't really remember much of it because I was so sick. He has been gone for over 7 years now. It gets easier in some respects because it is harder to connect directly to the pain anymore. But, if I let my mind wander I can place myself back in a room with him at The Hattie Larlham Foundation, cuddling with him in his chair, holding his Frumple Bear to support his neck and watching him soothe himself with his pacifier. When I do this the pain is just as real and just as current as if he just passed away.
I wasn't going to blog today because it is hard to write the words above. Tears just seem to keep streaming down my face. Its hard to go where it is so painful. I changed my mind about blogging today because of a conversation I had with a coworker about coincidences and synchronicity. She lost her mother recently in a tragic car crash. We were talking about ways we want to connect with those we have lost. She said that she has been having strange happenings that make her feel closer to her mother. It reminded me of two distinct occurrences that happened after Sloan died. I will tell you about both.

When Sloan died the funeral home was out of "big boy" caskets. The only casket they had was a white casket. At the time I didn't want him to have a baby casket that was white. I was really upset about this but had to adjust to the fact I wasn't going to get what I wanted for him. We flew his body to Grand Haven, Michigan for the funeral service. The cemetery out by the Lake was where we held the service. It was a beautiful summer day. Ron Turner, the minister was reading his notes and speaking to us all about how my son was finally able to run, jump, skip and play for the first time in his life. At that moment a white butterfly flew up and landed on the casket. Everyone was silent. The butterfly didn't move. Everyone stayed silent - all 300 people who attended. We were moved by this butterfly sitting on the white casket. The butterfly stayed for the rest of the service. It signified to me that my son had been transformed. Here is where the coincidence comes in. A couple of weeks later my genetics counselor wrote me a letter. She had been at the funeral. Earlier that week she went on a Labyrinth walk. On the way through the labyrinth walk she was told to release and pray for whomever came to her mind. She came across a black butterfly and it reminded her of someone who had died that she had not forgiven. She forgave the person. She walked further and came across an orange butterfly. This butterfly also reminded her of someone who had passed away. She prayed about this person. Just before she got to the church at the end of the walk she came across a white butterfly and thought of Sloan. She prayed for Sloan and I. She thought it was strange at the time because Sloan was alive and the rest of the people she had thought of were dead. After she prayed she kept repeating a mantra on the way to the church - "Run, jump, skip and play." It was just like the minister and the white butterfly at his service. The day she did that walk the day that my son went in to the hospital for the last time.

The second coincidence was when my son had been gone for two years. My husband knew I was going through a hard time on the anniversary of his death and asked me if I wanted to write Sloan a poem and then balloon launch the poem for him. I thought this sounded like a good idea. We were living in Columbus Ohio at the time. We went out that evening and let my writing go off with the wind. I really was struggling at the time and the event didn't soothe my grief. A couple of months later and well in to the winter season, my husband and I decided to go and visit a friend in Chicago. We liked to drive the 5.5 hour route so that we could talk and catch up with each other. During that drive I spoke of how hard it was to move on after losing a child. We ended up stuck in a traffic jam on the Chicago Skyway. We weren't getting anywhere quickly so I reclined my seat next to my husband who was driving and looked out the window. Up in the huge electrical poles were my deflated balloons and my poem stuck in the wires. It was a moment where I truly felt my son was telling me that he was okay. I never would have noticed the details of the balloons or of the package hanging from it if we had just been able to drive through.
I wish I could say that I've ever reached a point since his death that I feel totally complete again. I do see white butterflies everywhere I go now and it reminds me of his transformation and how happy he must be now that he isn't in pain all of the time. Whenever I see a balloon launch or a balloon floating off on its own in the sky I think of my son and the time we did have together even though it was short.
Happy Birthday Sloan. I love and miss you more than words can try to express.
Happy Birthday.
Love, Mom

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.