Tuesday, November 5, 2013

Olivia's Story

I know it has been a long time since my last post, and SO much has happened since then. Perhaps I will fill in the blanks later, but in the meantime I had to share a guest post from Olivia. She was asked to write a memoir for school about a transformative moment, and she chose to write about Simon's first seizure. I think it is an amazing testament to sibling love and to her incredible spirit. 

The Long Journey Through Epilepsy

How could I know what would happen that night? How could I guess that it would be the scariest night of my life; a night that would change me forever, but change my brother even more?

When we went to bed that night everything seemed perfectly normal. My mom and dad, my brother Simon and I, were all fast asleep in our own rooms. We were unaware that we would be woken up at 11:00 PM to find my brother making strange noises, unable to respond to us, and shaking uncontrollably.

I was suddenly woken from my dreams by the bright yellow light shining from my brother’s room across the hallway. The light seemed odd to me, because I knew that Simon loved to sleep so much that he sometimes went to bed on his own (which was odd for someone his age). I definitely didn’t think he would wake up late at night and turn his light on. But, tired as I was, I was also full of curiosity about what might be going on. Maybe he wanted to play with some toys, or go downstairs to watch TV? When I opened my eyes, I saw something I did not understand. My brother was lying flat on the floor and my parents were with him.

I heard my brother making a strange noise; it sounded almost like continuous hiccupping. I’d never heard a human being make a sound like that before, and I also saw that he was shaking violently--as if the floor underneath him were vibrating. I heard my dad calling Simon’s name urgently, but he didn’t answer. Then I heard my mom’s voice talking to a 911 operator even more urgently.  Though it was difficult to clearly see everything happening through the opening in my bedroom door, there was no hiding the fear in my parents’ voices.

I immediately wanted to help my parents, I wanted to run right into my brother’s room to find out what was happening and ask if Simon would be okay. I was filled to the brim with questions, and what I wanted most was to help my brother.  But I found that when I tried to get up I was frozen. It was as if I were glued to my bed, and the harder I tried to get up the more I felt myself being pushed down by my own fear. Instead of helping my brother, my questions overwhelmed me and I cried silently in my bed.

It was only a few moments later that I heard a siren. I was relieved that finally help had come. Still crying, I peeked from underneath my covers and saw glimpses of paramedics dashing into the scene. Just as quickly they left -- taking my brother and my mother with them.  As Simon was rushed out of the house on the gurney, my dad came into my room and told me to get up quickly and get ready to go. Finally unfrozen by my dad’s directions, I did as he asked and left with him.

Outside of our house was a fire engine (which seemed a little weird to me because from what I could tell, our house was definitely not on fire), and an ambulance getting ready to go. Dad quickly took me across the street to my friend’s, house. As he knocked loudly on the door, I asked him what I desperately wanted to know.

“Dad, what’s going on?” I asked, “What will happen to Simon? Where is he going and how long will you be gone?”
When Dad turned to me, I noticed that his face was stained with tears the way that paint stains a white T- shirt. I could see the fear in his face, and I had a feeling that if I were to take out a mirror I would see the very same expression on my own face.

“Simon is having a seizure,” said Dad. “We have to take him to the hospital, so that they can make it stop. The doctors will know what to do.”

As he said this, one of the neighbors answered the door. As soon as they saw our faces and the lights from the ambulance, they told me to come in and told Dad to go. As he ran back across the street, Dad shouted that he would call as soon as he could. My neighbor pulled me into a hug and I tried to explain what had happened, but all I could do was cry. I cried harder and harder as I realized that I didn’t fully understand what was going on, and I didn’t know what was going to happen to Simon, or to my family.

Not long after I had settled down, there was a knock at the door. My grand mom had come to get me and take me back to my house. Once we got back I refused to return to bed knowing that Simon was in danger. So grand mom and I just sat at the dining room table and I tried to talk about what had happened. She tried her best to comfort me, but it didn’t help. All I wanted was to know if Simon was okay.

At some point I must have fallen asleep, I really don’t remember. What happened next is a blur. I spent many days with my grand mom and papa while Simon was in the hospital with my parents. They called to check on me, and at first they just said that Simon’s seizure had stopped, but they couldn’t tell if he was okay or not because he was in a type of sleep called a coma. Finally, a few days later, they called with the best news I felt I had ever heard. Simon had finally woken up, they thought he would be okay, and they would all come home soon.

When my parents finally came home with Simon he seemed tired, but like himself. While he was resting they sat down with me to try to explain what had happened.
“Olivia,” said mom, “what Simon had last Thursday is something called a seizure.” Then my mom handed me a small, thin book. The book was printed in black and white and it looked like it had been put together by a broken stapler. Though I knew that I shouldn’t judge a book by its cover, I couldn’t help thinking that this book did not look good. On the cover there was a drawing of a man that looked like a slightly upgraded stick figure. He had his hands on his hips, and above his head was a thought bubble with a question mark in it. It looked like he was confused about the exactly what book he was on. The title of the book was, “What Is a Seizure?”

I put the book down and looked back up at my parents. I had too many questions to just settle for a book. I needed answers now.

“Why did Simon have a seizure?” I asked.

“We don’t know yet.” Said mom.

“Will I have seizures, too?”

“No,” said mom, “seizures aren’t contagious.”  

“Will Simon have more seizures?” I asked.

“Maybe,” said mom, “but Simon is on a medicine now to help prevent them. We hope that he won’t have any more. But he might. And most of the time seizures aren’t as bad as the one Simon just had. Most of the time they are fast and he won’t need to go to the hospital.”

Then my parents went on about how seizures are hard to understand, and that the book would help explain it for me, and so on. I could tell they were tired. Finally, I nodded and went upstairs with the book in my hand.

I didn’t read the book at first, instead I just shoved it in with another pile of papers and books so that it could have some company.  I sat on my bed trying to take in the short conversation that I had with my parents. I was still dying to know more…
The clutter in my bedroom made me feel uncomfortable and the light inside my room made me squint. I wanted to go downstairs and listen to the conversation that my parents were having with grand mom and papa. I was still worried out of my mind. It felt as if the seizure happened just a few minutes ago, and I still felt unsure about whether my brother was okay or not. I finally picked up the book.

“What is a seizure?” I asked the little man on the cover. He didn’t answer me, but I stared at him for a long moment before I finally turned the page.

It has been few years since I first read that book, and since my brother had his first seizure. Since then, Simon has had many more seizures, and I have learned all about what seizures are.

Seizures are caused when the electricity in your brain sort of goes wild. There are many different kinds of seizures, and my brother has a variety. The worst is when he has nocturnal seizures (seizures that occur in the middle of the night), because they can be dangerous. My parents have an alarm attached to Simon’s toe that goes off if his breathing stops or his heart goes too fast.

I learned that my brother had his seizure because he has epilepsy. Simon has epilepsy because he had a stroke before he was born and had brain damage. He has hydrocephalus, cerebral palsy, and epilepsy. There is no cure for his disabilities, but he takes medicine every morning and night to try to prevent more seizures.

Though I still get a little scared when he has a seizure, I don’t get frozen any more. I have learned ways to help Simon and my parents in an emergency. Sometimes I get the phone. Sometimes I hold the door open and wait for the ambulance. Sometimes I even hold Simon while my parents get his medicine. I’m even learning how to help train his service dog, Tigger.

I also learned that if Simon was going to have a happy life, then I would need to be the very best big sister that I could be. I knew I had to set an example for other people about how not to be afraid when someone has a disability. I am proud of Simon and am always glad to help him whenever he needs it (even if he is a crazy monkey sometimes). Disabilities could never make me love my brother any less. He is the very best brother around. I am blessed to be his sister, and I know as much as I love him, he loves me.