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 |  The first twelve years of my life learning to like myself and overcoming cerebral palsy. |
| My Physical Therapy Begins My body is going to have to learn how to do things it has never done before. I am essentially a baby still in some ways. I need to be toilet trained. I still wear a diaper. I don't know how to crawl right. I only know how to drag my legs behind me. I don't know how to stand. I have a fear of falling, so I don't even try to stand. I still have a long road ahead of me. I don't like goodbyes so when we left my house I didn't say goodbye to Leigh or anyone at my house "I just said," If it is time for me to stay, for therapy, I will be back when I am better. I will be okay." I never cry when I go to the hospital. I always smile because I know how lucky I am. I see so many other kids at the hospital unable to do lot more than I can. I know I have a lot to learn yet, but when I think about what is ahead of me and I am nervous and scared, I know in my heart that someone or something is on my side because of what I see going on around me. I see kids that can't talk.I see kids with no arms or legs or both. I see kids that can't see, hear or both. I see kids that are deformed so bad their bodies look like they hurt and can't be fixed. I go to sleep at night feeling sad wishing I could take all their pain away somehow. I know I have my own pain, but to me it is so small compared to what I see. I know things could be so much worse for me. It was time for me to be admitted. Mommy and Dr McQuinn had to take care of that. I know that this means that this hospital is going to be my new home for as long it is needed how long that was going to be I didn't understand. I didn't really even understand what was wrong with me, but I was about to learn what my body can and won't do even if I want it to. I am about to learn what Cerebral Palsy is. I might not understand it, but I am on a new adventure to learn about my body that is for sure and I will never forget it. Mommy packed a bag for me, but she bought everything new. Mommy is just that way. She wouldn't let me bring anything I wanted with me. It made me very sad because I am very attached to my blanket. I can't sleep without it at night. I hold it at night especially on nights when Leigh isn't with me. Before I had my surgery and I had to sleep in a hospital bed Leigh and I shared a bedroom and we slept together in a double bed. I was used to having her near me when I slept. I often didn't sleep well or would have bad dreams. I would (I admit it was every night) reach over and wake Leigh up and ask her if I could hold her. Leigh would tease me and say,"Aw man again? No!" I would cry and beg her, "Please Leigh! I can't sleep. I'm scared! I had a bad dream! I just need to put my arm on you so I can feel you there. I promise I will go right back to sleep." Leigh would get tired of me whining and give in. I knew she would cause she always did and I would snuggle up real close to her back, as close as I could get  put my little arm on her side and fall sound to sleep a happy little girl! I am such a brat. I am really not trying to be a brat. I just love my sister!I guess Leigh tired of me asking if I could hold her because I remember one night like it was yesterday. It was before my surgery and it was a Wednesday night. Wednesday night mommy had off from work so it was her night out to relax so Leigh and I were being babysat by our new babysitter Berenice. I started whining and crying because I wanted to put my arm around Leah and she kept saying, "no,now leave me alone and stop that whining!" I just kept it up "Please Leigh you know I can't sleep without holding you. I have bad dreams." Leigh said, that's it and she snatched my blanket out of my arms and threw it. It landed in the Chandelier above the bed I was devastated. I started crying, "Please, God help my blanket fall down."With my arms pointed toward the ceiling as close as I could get them I continued to sob. You are so mean Leigh. I only wanted to hold you! Leigh tried to get my blanket, but she was too short even Bernice tried, but she was to too old to get on the bed.You know as I look back on that whole scene now.Did we really think of everyone older then us as old? (I never really knew how old Berenice was even though she becomes one of my dearest friends as you will see) Soon enough I could cry no more because I was getting tired, but Leah could tell I was still fighting sleep because I was taking deep heavy breathes and still praying out loud somehow that my blanket would just fall. "Please, Bernice can't you just call mommy?", I asked. " No,they will be here soon.", Bernice said. Minutes felt like forever to me. Sleep finally took over, but I felt someone step on the bed. It was Terri my brother Jimmy's wife. She was tall. I watched with a smile as she reached with ease and handed me my blanket. I loved her already, but at that moment my heart swelled with more love for her. I was so happy. I had my blanket back I thanked Terri and God. I didn't have any trouble going back to sleep that night. I was so tired from crying and waiting. I don't even know if Leigh got in trouble for throwing my blanket in the the chandelier and I still don't know to this day. I knew that once mommy got me settled into my room. I was going to have to say goodbye to her. I didn't want mommy to know I was upset or sad. I put my strong happy face on for her. I was good at it too, because she never knew about lots of things I held inside. Mommy went to the gift shop and bought me some coloring books and crayons,a doll and some puzzles.The doll looked like Mrs.Beasley,so that is what I named her. I could tell mommy didn't want to leave me, but I knew she had to go soon because it was a long ride to take her home then ride back home to Pennsylvania in the same day. My sister, Gwen, and her family had already came to Wildwood,N.J., once today to get us to bring us here to the hospital. This would be their third trip today to take mommy home. "Mommy I understand that you have to leave." "Come see me soon as you can. Tell Leigh I love her." "You want me to leave?" "No mommy. I just know you have too! I will be O.Kay." "You be a good girl and do what they tell you." "I will mommy. I love you!" "I love you too and remember keep the faith!" I will mommy. I knew I was going to be afraid when mommy left, but I wasn't going to tell anyone. It wasn't long after mommy left before a nurse came in to check on me. I wasn't in a private room. There was three other beds in the room so the room was big! I was happy about that I didn't want to be in a room by myself. The nurse said,"Hello Marcy my name is Susan. I am going to be your nurse tonight. Have you met any of your roommates yet?" I smiled at her as I shook my head no. Susan smiled back at me and said,"They must of all been gone already before you arrived. Someone from physical therapy wants to come down and meet you, so you will be having a visitor. You don't start therapy until tomorrow, but your therapist wants to start to get to know you today. Do you need or want anything before I leave the room?" "Yes.I peed. I need to be changed." "Oh don't worry about that I will be glad to change you." I felt sad because I was still in diapers. "You are here for us to teach you many different things. Potty training is only one of them. Are you up for the challenge?" I looked up at Susan and said, " Yes," with a big smile! Susan changed me then she asked me,"Can you tell when you have to go potty?" I said,"Yes." "When you feel like you have to go potty you ring the bell for the nurse and I will come put you on the potty. deal?" I said,"Deal, but what if I don't make it?" "Things take time sweetie. I don't expect you to learn over night." I liked Susan. She liked to smile a lot like me. She made me feel safe and she spoke with a real soft voice. Susan asked me if I wanted to sit in the chair and watch T.V. I told her I couldn't sit by myself very well. She smiled and said,Well that is an easy fix. Susan went to the closet.She brought out a belt it looked like a small strap, but she showed me me that it was long enough to go around my waist. Susan explained that she would put this strap around my waist to help hold me steady while I sit in the chair. I said,"but please don't leave me because I am afraid I will fall." Susan said,"I can't stay in here with you, but I can get an aide to sit with you. Would you like that?" "No, can't I just watch T.V. in bed?" "It is better for you to be out of bed sweetie and you need to get used to sitting up on your own. Will you please try?" "I will try, but am scared!" "I won't make you sit up long this first time. Just a half hour." "Alright,"I said sadly. I was so tiny and weighed very little for a child my age that it was easy for Susan to lift me to the chair. Susan put the strap around my waist then she buzzed the nurses station. While we were waiting for the aide to arrive she asked me what I wanted to watch. I told her Sesame Street. It was one of my favorite shows. I loved Big Bird,Mr. Snuffaluffagus,The cookie Monster,Ernie and Bert. I also told Susan that I liked to sing. Finally the aide came in. Susan said,"Cindy this is Marcy. We are working on two things already. Potty training and sitting up in the chair. Marcy is afraid she is going to fall, so she wants you to sit with her while she is sitting up in the chair. I told her she only has to sit up for a half hour today." Cindy said,"No problem I would be glad to sit with our new patient." Susan left the room. Cindy bent down in front of me. She told me to relax that she would not let me fall. "You are doing a great job sitting up so far, Marcy. What do you want to do now?" "It is not what I want to do. It is what I have to do. I have to go potty." We both laughed! Cindy undid the belt that was holding me in the chair and carried me into the potty. I was stiff from being afraid I would fall out of the chair so, it was hard for Cindy to carry me at first until I relaxed in her arms. She understood why I was stiff though. I knew this because she told me not be afraid that she would not let me fall.She wanted me to feel safe with her. (not done yet, I have not numbered what I have written next because I am not done with this chapter and have much more to write. I wrote recent stuff I don't want to forget and will revise, it all will fall within my book somewhere..Love Marcia) |
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