Shades Of Memory

Shades Of Memory

By: Sari Sugar

Part 1 Maddy

Most people don’t treat me like a real person. I am like a piece to a puzzle. You are not happy until you finish the puzzle. I am 15 years old. I am 5’4’ and I have cerebral palsy. Most people don’t realise because mine isn’t too bad. I can walk, talk but sometimes, things in my body don’t communicate and then everything shuts down. Sometimes my parents explain my disease to me as if i’m a robot. When the wires move or are not placed in the right spot the robot doesn’t work. When you have the wires in place the robot and walk talk and do whatever it is programed to do. I have been going to school but I see different teachers and I have a machine that helps me talk and transport when my body is broken. My best friends are Katy and Ruby. We met at this playgroup and they have always been very supportive of me. I am very glad to have them by my side.

Part 2: Mom

Oy! It’s hard to remember a time when Maddy was okay. I still view her as normal yet we all knew things were going to be hard once we figured out what was wrong with her. Every day we drive to physical therapy. I remember when she was young she used to walk around with this bar that was connected to wheels. That was a bad time. She had a hard time walking and that was the only thing we could get her to use. I am scared to see how things will turn out. My husband and I think that overtime things can get better but that takes years. I have to go take Maddy to school.

Part 3: Maddy

“Maddy it's time for school. I am taking you in early that way we can review your 504.”

“Ugh, mom seriously?” “We do this every year. Don’t you think they can tell by looking at me that I have problems.”

“Don't talk that way to me you know that there are rules that we have to abide so let's go.”

“Fine.”

As soon as I get to school I find Katy and Ruby. School is different for me.  I have a special teacher that escorts me to make sure I stay safe. They have a backup wheelchair in case anything happens but so far I haven't needed it.  

School is fun but it also a bad environment. When I was little some classmates would make fun of me by saying “Hi baby have you learned to walk yet?”(baby sounds) Thank god I have Katy and Ruby otherwise  I don’t know what I would have done.  

“Hi,” I say as I find Katy. Since we spent the whole summer together we have barely anything to catch up on. “Hi,” she replies after talking about our classes and talking to some of our other peers before we go to our first class.  In the middle of the hall I spot rachel. Rachel and I used to be best friends. Nothing happened but after her mom died we grew apart. Rachel and I used to have playdates every week when we were younger but now we have drifted.

“What’s up” she asks

“The sky.”  

“How was your summer?”

“Fun. Remember when we used to have plans like all the time?”

“Ya, that was fun”

“So do you like anyone as of right now?”

I reply, “I do. His name is James”

“Oh ya I know him. Well I have to go see you later.”

“Okay bye.”

Part 4: James

Maddy and I are friends and she is really nice. She and I met when we were young in playgroup. We have science together.  I used to like her but I think I still might. I don’t want things to get awkward. Every time I see her I get butterflies in my stomach and my face turns as red as a tomato. I want to become more than that but I don’t know. Ugh, here comes Maddy,

Part 5: Maddy

Today is Thursday. We are going to the doctor. I am excited yet, really scared. Every 4 months we go to this doctor to make sure my body is functioning. I am scared because I have recently had a hard time breathing.

As we get there we have to wait 20 minutes just to fill out all the paperwork and see a nurse. The nurse measures my heart rate. Then she takes my temperature and weighs. Following the basics with the nurse Dr. Reeves comes in. After asking about the medicines i’m taking and giving me shots. My mom informs the doctor about my respiratory system. After running a few tests the doctor came in and told us that we had to go to the hospital. She said I developed something called pneumonia. She said many died from it. All I could see is the horror in my mom's eyes they went from warm to icy cold and frozen blue.

Once we got to the hospital and after running more tests we found out that this has been in my body for too long. The doctor approchaed us and told us that I only had a year left. My mom was horrified and I don’t think I have ever seen her so scared or still. On the way home my mom was quiet and just stared at me. In the next few weeks as we tried medicine and vaccines we decided it would be better that we stopped and let my body do it’s own thing.

10 months later

It has been 10 months now. Lots has happened I dropped out of school, went to Paris, Israel and Europe. Along with that I have spent a month with each set of cousins and family. I only have a few months left so this is why I have this journal. I am writing a letter to James to let him know the way I felt but also to let him know that he needs to move on and be strong.

Dear James

Hey its me Maddy. As you know I only have a few months left. I am sorry but I can’t bare the sadness of talking to you about this subject so I will write it. I have always liked you. I am sorry if this sounds weird.  You have always put a smile on my face. Science is fun! You are in general a good friend. You never let anyone down or make them feel insecure. I want to thank you for always being there for me. I hope one day you will find someone almost as great as me:). I hope you have a great rest of your life.

Sincerely,

Maddy

Part 6: Goodbye

I would like to thank everyone who has encouraged me to be myself. Look at everything half full and always look at life from every perspective.

As Always,

Maddy