Chapter 1- Marcia

What had to be done for me to walk.

Chapter 1-Marcia

I talk normal for being almost one and a half years old
I miss some physical milestones, so my parents, Agnes and Fioreno Bucella, are concerned.
I don't try to crawl like normal babies. I drag my legs behind me and pull with my arms to move.
It's hard to change my diaper because I'm stiff. I don't try to pull myself up to stand. I have a hard time rolling over when I'm on my back.

I'm hard to get to sleep. I love to lay on my daddy's chest. It helps me sleep. I am comfortable there.
Daddy's decided to take me to Children's hospital. He's worried about me not doing things I should be doing by now.

I love my daddy very much. I feel safe with him.

Daddy doesn't like the doctors at Children's Hospital they call me slow this makes daddy upset.

"My daughter is not slow. Something else is wrong if you choose not to help me find out what is wrong then I will find a better hospital with someone who is willing to listen to my concerns about my daughter."

The next day daddy took me to Alfred I. DuPont Hospital for Children in Wilmington, Delaware.
A lot of testing is done. It took many visits to A.I. DuPonts to find out what was going on with me and why I had trouble doing the things I should be by now.

Daddy and Mommy are much happier with the doctors at Du Ponts. They were more willing at the time to deal with my frustrated parents.

My parents found a good team of numerologists and after a lot visits and many tests they were given my diagnosis of Cerebral Palsy with Hydrocephalus—Water on the brain

My parents choose not to tell me what is wrong with me.
I'm a happy little girl and they want me to stay that way.

Time passes—I want to get to the point where I actually remember what is happening to me—Which is around the age of five. 

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I'm a five year old little girl. I'm not like most kids. I struggle to get around. I don't know why I struggle so much. All I know is my body won't allow me to do certain things like the other kids do like--Stand, walk, and run. I don't understand why I can't do these things. All I know is I just can't move like everyone else does. I never ask why I have trouble doing things. Nothing bothers me. I'm always happy. I love to smile. It doesn't upset me that I can't stand up. I just try to get from one place to the in other ways.

My name is Marcia Belle Bucella, but everyone calls me Marcy.
I like my name. I wish everyone would call me by my real name, but very few people say it right most people call me Marsha; instead of Marcia.It's pronounced-Mar-see-a. I settle for Marcy with a y—it will due for now.

I don't tell anyone I don't really like being called Marcy because they would still call me Marcy anyway because I want people to like me. My mommy even calls me Marcy, sometimes she calls me Marcy Belle.

When I get old enough I will ask people call me Marcia because I'll tell them I like my name, but for now, Marcy it is. I'm sure my family will still call me Marcy, but it will be okay because I love them all dearly.

I am much smaller than most kids, but you know, I don't think my height has anything to do with my disability.

I have medium-brown eyes and hair. Mommy likes to keep my hair short because its easier to take care of when its short. I don't like my hair short. I think it makes me look like a boy. Mommy says when I get old enough to take care of my own hair I can have it as long as I want it. I can't wait.

Every three weeks I go to A.I. DuPont hospital for Children. I like my doctors there. They are trying to find a way to help me be able to stand and walk someday. My legs don't work well. I am tip toed. I can't put my heels flat. My knees turn in so, it is hard for me to stand up without some help or some kind of support or mobility aid.

My doctors tell mommy I'm spastic which means I am stiff all the time. My left arm, legs, feet, and toes are what is affected. My legs aren't straight unless you make them straight. They can be put straight, but it is uncomfortable for me to keep them straight and they won't stay straight for long unless you hold them that way. When you let go they just bend strange again. It hurts to keep my legs straight for a long period of time.

I have a severe fear of falling. My body just buckles when I try to stand on my own without help.

My doctors tell mommy and daddy about a new surgery that is being tried on children that have the same difficulties walking as I do. Together they decide this new surgery would be the best chance I have at being able to stand to learn how to walk. My surgeons name is Doctor Mcquinn. My operation involves heel cord, hamstring and adductor lengthening. The adductors and the hamstrings were done to help my muscles relax. The heel cords were done to help me walk with a flatter foot. Only time will tell if the operation will work.

The surgery is scheduled.

On the day of surgery I had no time to be afraid. I was admitted the night before so I was already sedated and prepped for surgery(I remember feeling like I was swinging on a swing)

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When I wake up I'm in a body cast from the waist down. When the doctors put this heavy cast on they also put two long sticks horizontally between my legs to keep them apart. Sadness fills my heart whenever my caregivers carry me; I am after all, nothing short of excruciating, dead weight. I wish I could control the stiffness in my body. I try hard but, my body doesn't seem to be in my control sometimes.

I should stop these negative feelings. I need to learn to be patient with my body and follow doctors orders so I can go home. I am still learning about my body and what is wrong with it.

When I finally get home, excitement overwhelms me. Mommy managed to set up a nice, comfortable hospital bed in our living room. I was all settled, but something was missing. My sister Leigh isn't there by my side.

My sister Leigh and I are close in age. She was born on June 29th, 1961 and I was born on March 1st, 1964. Leigh has dark brown hair, cut short in a pixie style and dark brown eyes. She is not as tiny as I am, but she's built small.

Mommy is not real tall. I think that's where we get our height.
Mommy has blue/gray eyes. They always look sad to me.
She rarely smiles, but when she does it could light up a room.
Mommy doesn't laugh often either. She works a lot. She is a bartender. She works at a bar called the Fishermen's Inn.

I keep asking, "Where's my sister? I miss her. Leigh couldn't go with me to the hospital when I had my surgery. She had school. We play school often. Leigh teaches me things that she learns from school. I love my sister so much!

Leigh never treats me different. She loves me very much. I can feel it. She plays with me often. We sing together! I love to sing! I don't have a favorite singer yet. My sister's favorite singer is Donny Osmond. He still is . I love it when she reads to me at night. One of my favorite things we do together is play Barbies. We have so much Barbie furniture. Barbie, could have a twenty room mansion! Our Barbie dolls have more clothes than we do. Barbie campers, Barbie pools and Barbie cars.You name it we have it. My sister even has Donny and Marie Osmond Barbie dolls. She still has them.

I keep looking at the door.

"Mommy, why is she taking so long? Tell her I want her to come home, please."

Mommy came to the bottom of my bed.
"Now Marcy your sister will be here when she gets here."

Finally, after what seemed like forever to me. The screen door opened and in stepped my sister. I was so happy she was home. She looked beautiful to me.

Mommy heard her come in so, she asked Leigh if she said hello to me.

Leigh looked over at my hospital bed saying, "That's not my sister!" She ran from the living room crying!

I heard mommy go after her explaining why I looked the way I did with the cast on my legs.
Mommy gently explained to her that the cast wasn't hurting me. I had to wear it until my legs got better to a certain point after surgery.

Leigh came out of our bedroom, but she didn't come near me until she heard me crying in the middle of the night.

She came to my bedside and asked worriedly, "What's wrong Marcy?"

Wiping my tears away I explain to her that my feet hurt.
She asked me if I wanted her to tell mommy. I told her "No"

"Leigh, will you stay out here with me?"

Leigh replied,Yes, on the couch."

I smiled at her and offered her my own blanket and pillow for the couch.

I never asked her why she ran out of the room earlier. I was just glad she was with me now.
"Hey, Leigh can we play tomorrow?''

Leigh answered, "Yes, now go to sleep, Marcy."

Even though I was still hurting, I went to sleep feeling much happier and safer just knowing my sister was closer.

The next morning I was still in pain so I told mommy.

"You would feel better if you took your medicine."

I don't like to take medicine, because it makes me feel funny. However; mommy made me eat breakfast and I had to take it anyway.

I must've fallen back to sleep because when I woke up Leigh is beside my bed asking me if I am ready to play.

I nod my head, yes, excitedly! Wondering what we are going to play with me in bed.

Leigh ran to our bedroom. On her way back to me she yelled, "Close your eyes and no peeking."

I yelled back, "Okay." I loved surprises so, I did as she asked. It took more than one trip to our bedroom for her to bring out everything she needed. I could feel her next to me again.

She reminded me not to look.

"I won't," I say, as I close my eyes tighter. I felt her put stuff on my bed.  Then, Leigh, climbed on my bed and set to work on her surprise. While she was working she asked me if my feet still hurt today. I told her mommy gave me pain medicine.

Leigh began to tell me she came up with this idea last night when she was trying to go back to sleep and she couldn't wait to try it today. Finally, Leigh told me I could open my eyes.

When I did the sight in front of me was awesome! My sister set up a Barbie doll house; between my legs. Everything is placed at my reach! How clever of her to use the sticks that held my legs apart as the walls to separate the living room and the kitchen! I can't stop smiling! We play for hours. This is a memory I will treasure now, always and in eternity.

Chapter 2-Why Is There Pain?  (E) What is causing Marcia's pain? #1905637 by Marcia~I'm Home :)