Chapter 5-Learning About Cerebral Palsy

Marcia truly begins to learn How to work with her body

Learning About Cerebral Palsy

In my mind I knew my body was going to fight me because it has so far. It's always stiff and at times it won't let me do what I'd like it to do. Note to self— my first mission is find out if there's anything I can do to change any of this.

I don't know what's going on with my body, but now that I'm here at the hospital for a while I hope to learn everything I can about why my body is the way it is. I need to find out for myself what this cerebral palsy is and how it's going to affect me?

I don't sleep well because I'm nervous about starting my therapy the next day. I toss and turn all night long listening to the noises around me in this large room with a roommate. I think my tossing and turning is keeping her awake because she, finally, speaks.

"It seems you're having a hard time getting comfortable or you can't sleep. Which one is it?"

"A little of both." I reply.

"What's your name?" She says, very quietly, because we knew we're supposed to be asleep.

I whispered back, "Marcia."

"Hi! Marcia, I'm Selina, if my bandages don't frighten you, I'll come over to your bed so we can talk until we get sleepy.

She has bandages wrapped around whole head; all you can see are her eyes, nostrils and her mouth.

I smiled at her and reply, "Your bandages don't bother me one bit, as I lift my covers up for her to join me under my blankets. We begin giggling as Selina jumps from her bed to mine.

"Shhh...We’re going to get caught. You know, this is against the rules. I said.

"I know it is. But it's so awesome to finally, have a roommate!"

"What's keeping you awake, Selina asked?

My mind won't shut off. I've got so many questions for my therapists tomorrow. Tomorrow is my first day. I'm nervous and scared because this is all going to be new to me.

“I can understand you being nervous, but don’t be afraid the people here are very nice. They know what they’re talking about. They'll help you out in any way they can. Everyone here makes you feel like family. Everyone here cares about you and hopes you get better. They're all here to help you achieve your goals.

"What is your main goal? “ Selina asks me.

I can't walk yet. I was born with cerebral palsy. I'm here to learn all about what cerebral palsy is. I need to learn how to stand up; and then I hope to learn how to walk.

Selina spoke so, gently, and so, sweetly. She was so easy to like; even though I couldn’t see her face. I could hear the smile in her voice. It was so pleasant. Talking to her relaxed me. I was already getting sleepy, but my curiosity got the best of me so; I fought sleep a little while longer, asking, if you don't mind me asking, why are you here at the hospital ?"

She explained she was born with a cleft palate and needed some facial reconstruction as well as her cerebral palsy, but she had to have a shunt put in to help drain the water from her brain.

I knew I had water on my brain too, but I didn’t know why mine wasn’t being drained. Another question I need to ask someone.

Selena noticed I was getting very tired so she went back to her bed and said we would talk more tomorrow. I was more relaxed and more excited about the day ahead of me. I made a new friend which helped me feel safer for some reason. I said my prayers and thanked Jesus for my new friend as I fell into a peaceful sleep with a smile on my face.

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I woke up bright eyed and bushy tailed. I couldn’t wait for my therapy to get started. I smell breakfast in the air so I knew it wouldn’t be long before they would be bringing it to us. I wanted to sit up, but again my body was fighting me. Cindy came in saw me struggling.

"What are you trying to do Marcy?"

I’m trying to sit up.

"Here, let me help you. Your breakfast is on the way I’m here to help with that as well"

I couldn’t contain my excitement. She asked me why I was so excited I explained I was starting physical therapy today.

As Cindy started helping me sit up I realized I had to go potty.

Cindy saw the puzzled look on my face and asked "What’s wrong sweetie?”
I said, “I’m sorry Cindy I have to go potty.
She says. “I’m so sorry to sweetie I should've asked you. You did just wake up after all."

We both began to laugh. Cindy carried me to the bathroom. This is a free pass for now, but just think, in few short weeks you'll be walking to this potty. I gave her a look that said "Really?" because she just answered, "Yup, you'll see."

Breakfast had arrived by the time we finished in the bathroom.

Jean was in my room too. I smiled at her. I didn't eat yet. I told her.

I know she said. I'm here to start your therapy. I want to try something okay?

"'Sure," I said.

Cindy, asked Jean if she wanted her to put me in bed or in the chair to eat.

Jean looked at me. I'm going to start you on tilt table therapy.
We're going to put you on a special table it's called a Tilt table it's going to help you get used to standing. You'll be strapped to the table, but we'll slowly, put the table in a vertical position. A small table will be placed in front of you so can eat while you're standing.

I was already scared because I never stood up before. I also have a fear of falling. Now, I'm supposed to stand while I'm strapped to a table and eat too?

My heart started to pound fast. I knew this was going to happen; even if I begged Jean not to strap me to the table. I knew I had to find a way past the fear. I began to shake

I began to cry, "I want my daddy. Please, call my daddy!"

Cindy looked at Jean she knew I was frightened she said Jean can I chat with you in the hallway, please. They both left my room.

Sure enough in about an hours’ time daddy appeared.

I'm still strapped to the tilt table, but I was so upset Jean waited for my dad to proceed.

“Hello, Mr. Bucella I am Jean Marcia’s physical therapist. We called you because today is the beginning of her therapy and a very important part of her success toward her goal. We have Marcy strapped to a tilt table. We realize she’s scared we thought it might be best if you could be here for the first few times we do this."

"I'm sure we can work something out here. Let me speak with my daughter alone please."

"Sure I will be right at the nurses station."

"Now, dry those tears up baby girl and tell daddy what the problem is here. This isn't like you."

"I know, daddy, but what if I fall? I'm so scared daddy!"

"Baby girl listen to daddy you're not going to fall. This table is designed to help you stand up. It's designed to help you feel safe.
now, I cant guarantee you that you aren't going to fall at some point during your physical therapy here at AI, but I can promise you; you won't fall while you're strapped to this table."

"Now, if you be a good girl and do everything your therapists tell you to do even if it scares you I'll bring you a snack every night after I get off work every night"

I smiled at my daddy,"Daddy, I'm ready to try to stand now"

All the fear not so bad now as my daddy watches my therapist bring my tiny six and a half year old body to a standing position for the first time in my life.