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 |  The first twelve years of my life learning to like myself and overcoming cerebral palsy. |
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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 (Gus for a nickname) 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 is hard to change my diaper because I am stiff. I don't try to pull myself up to stand and I don't try to roll over. I was hard to get to sleep. I love to lay on my daddy's chest. It helps me sleep. I am comfortable there. Daddy has decided to take me to Children's Hospital. He is worried about me not doing things I should by now. I love daddy very much. I feel safe with him. Daddy doesn't like the doctors at Children's Hospital they call me slow that 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." The next day daddy took me to Alfred I. DuPont Hospital for children in Wilmington, Delaware. Lots of testing was done. It took many visits to A.I. DuPonts, but my doctors there were much nicer to my parents. Daddy and Mommy are much happier with the doctors at DuPonts. My parents found a good team of numerologists and after a lot visits and many tests they were given my diagnosis of Cerebral Palsy and Hydrocephalus. They choose not to tell me what is wrong with me. I am a happy little girl and they want me to stay that way. Time passes I want to get to the point where I actually can remember what is happening to me....which is around the age of five. ******************** I am a five year old little girl. I am not like most kids. I struggle to get around. It is the way I am supposed to be. 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 is 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 it because they would still call me Marcy anyway and 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 will tell them that I like my name, but for now Marcy is what I am called. I am sure my family will still call me Marcy, but that will be okay because I love them all dearly. I am much smaller than most kids, but 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 it is easier to take care of. 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 for a checkup to see how I am doing. I like my doctors there. They are trying to find a way to help me walk. 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 that I am 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 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. I have a 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 and together my parents and doctors decide that this new surgery would be the best chance I have at being able to stand and 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 is a success. After some serious thought and prayer my parents and doctors decide together that the new surgery is what will be best for me so my 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. On the way to the operating room I remember feeling like I was swinging on a swing. When we got to the operating room someone came up to me and said, Hello Marcia how are you feeling today?" "Tired." I was lifted from my hospital bed to the operating table. The person came up to me again and said, "It is my job to put you sleep and watch over you during your surgery. I am your Anesthesiologist. Can you count backwards from ten and by the time get to one this will be all over okay?" He put a mask over my nose and mouth and told me to begin counting. "I begin to count ten, I begin to feel like I am swinging on a swing again, nine, only faster, eight,sev... I am out. ********* And when I wake up... I am in a body cast from the waist down. 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. I don't understand much I just know that I can't walk like other kids and I don't know why. I never complain about it. I am happy to be me. When I finally get to go home, excitement overwhelms me. Mommy manages to set up a nice, comfortable hospital bed in our living room. I am all settled, but something is 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 is built small. Mommy is not real tall. I think that is 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 Fisherman's Inn." I keep asking, "Where is 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 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 Barbie’s. 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 have 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 a 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 my 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.
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