Oh Brother (Unfinished)

It seems so long ago now that I used turned thirty and he is going to be twenty eight. It seems like just yesterday we were little kids. I still look back at the pictures when we were so fragile. So innocent. I don't really remember when my brother was actually so called *Normal* in this society. I only can see by pictures and by what are parents have told me. In the pictures I can see his cute smile and see the sparkle in his eyes. Its so hard to believe that it was all taken away in an instant.

Our mother had a hard time the moment she went into Labor with my brother. First off my brother was sideways. Not head up or head down. Sideways, which called for an emergency c-section. Which back then in our area of the world. In Upstate New York it was crazy in our town, the doctors didn't know how to handle it. After Our mom's water broke they were waiting to have her sent to Syracuse to go to the hospital down there. While waiting my brother ran out of air. His heart stopped, once before being born and once right after. But luckily they were able to start it again. I could never imagine how my mother felt during giving birth to my brother. I am sure it is one of every parents nightmares to have their child go through so much turmoil first coming into the world.

My Brother Sonny was born in the spring time of 1984, May 2nd to be exact. We were similar but opposites growing up. I was a splitting image of my father at a young age. I was born with strawberry blonde hair that eventually turned to a dark auburn color, and blue eyes. While my brother was born with dark brown hair and brown eyes. Just like our mother. He was born early. And only weighed 4ibs. But he caught up and became a healthy happy baby boy. I was two years older, born on April 14th, 1982. My parents were overjoyed. They had their boy and girl what more could they ask for.

My brother and I were growing up fast right before my parents eyes. I loved my brother dearly. We danced in front of the radio as soon as my brother could stand. His smile and laugh were contagious. He was such a happy little guy. When he was the age of one he had his first grand mal seizure. But that was it. It was scary and strange but not something that anyone needed to be worried about. So life went one. He was doing everything that a normal child would do and was about to be potty trained. He was walking, talking and growing up jsut like any toddler his age. But when he turned two that all changed. It was like his life was put on rewind. The sparkle faded from his eyes, the smile faded from his handsome little face and he was taken into a world that you and I will never know.

He began to have around 400 to 500 seizures a day. This includes Petimal seizures silent ones that were in his head. Also Grandmal seizures which caused him to instantly stiffen and collapse to the floor and shake. It was terrifying for my parents and myself to see my brother go through so much. It was all happening so fast and there is no answers as to why. The doctors explained that if they could pin point where it started in his brain then they could possibly stop it. But after some testing they realized that they couldn't. They explained it like electricity surrounding the entire brain. Contantly moving like electricity to live wires that had been exposed. My Brother had epilepsy.

For those of you reading this that is not really sure what epilepsy is here is the definition:

ep·i·lep·sy  (p-lps)

n. pl. ep·i·lep·sies Any of various neurological disorders characterized by sudden recurring attacks of motor, sensory, or psychic malfunction with or without loss of consciousness or convulsive seizures.  

This illness trapped my brother inside himself. Trapped in his own body by the seizures that no longer allowed him to communicate, it basically crippled his body. He could no longer, speak, feed himself, dress himself. Nothing. He needed 24 hour care and instantly was just like a baby all over again. It became a guessing game for my parents to figure out what his needs were. And it became like my brother was a lab rat with doctors and their ways of trying to make things a bit better and a little easier on my brother, when it came to life. It was trial and error when it came to the different medications they needed to be tried to try to make the seizures stop, or at least calm them down.

The only thing that he still had basic control over was that he could still walk. But as he grew older there was another thing that the doctors noticed. His bones were not growing properly. The bone structure was not right. His hands turned inward at the wrists and his body structure was quite skinny for his age. They realized that ontop of having Epilepsy he had what they called Cerebral Palsy.

Again for those of you who don't know what Cerebral Palsy is:

 Ce-re-bral Pal-sy

noun 

A condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth

 He ended up having to have surgery on his heals to lengthen the muscles because with the cerebral palsy he walked on his tip toes. He has to wear braces everytime he puts on shoes now, before it was all the time. He also had to wear a helmet to protect him from the sezures. With the Grand Mal seizures he has broken bones, knocked his tooth out, and even cut deep gashes in his head from falls.

I have to say the hardest moments growing up was when I had friends come over to my house for the first time. The questions and the unintentional stares. The frightened look in their eyes when my brother would have a bad seizure that would knock him straight to the floor and convulse. It was so hard because they didnt understand, not like I did. Growing up with him. Some were to scared to come back. At that age I didn't understand. But now I do being older, that they were just scared and didn't know how to deal with it.

I did have other friends though that still come around. They love my brother right to pieces. And kind of have an understanding about our lives. A little bit anyways. They always came over and even though he does not communicate with them they would always say hello and give him knowledge that he is included. It was really heart felt of them. And still to this day they still do.

Yes growing up with a brother with a disability was hard. I am ashamed to admit that when I was young I was so jealous of all the attention he recieved. But growing up, I realized. He needs that attention. He had to go through so much. While I live a normal life. With no stares or whispers or pointing and laughing. Some people are so horribly cruel.

The biggest fear I have ever had is losing my brother. I remember one time as a teenager I watched my brother go through a seizure that lasted so long that his lips were turning blue. I thought that my brother, my only sibling, was dying on me. I remember after he came to and started to breathe again that I sat there and truly realized what my brother goes through. I never cried so hard in my life.

I occasionally have dreams, A miracle it would be if they actually came true. Oh how I wish that they would, even after all these years I will never give up hope. In my dream, we are sitting in the living room of my parents home. My brother always makes a noise, like when someone blows on a baby's tummy. Well in my dream he goes silent. Then he just turns and looks at me and talks. And its like he just comes out of whatever has trapped him for all these years. I usually wake up crying to this.

Growing up besides medicine my parents were introduced to what they called a Ketogenic diet.

Ketogenic diet: A diet devised as a treatment for severe seizure disorders that do not respond to conventional medication. The ketogenic diet is comprised almost entirely of fats and protein. All portion must be precisely weighed and timed. Because this diet can cause the build up of ketone in the blood, it is highly risky and should only be tried under close medical supervision.

It was so hard to watch as my parents struggled to stick to it in hopes that it would help my brothers seizures. My brother as a teenager never weighed more than 65 pounds because of his illnesses. After a couple years of trying this, my parents realized that it was not doing any good, not the results they had hoped for anyways. So after taking him off of it and giving him regular foods again. He luckily now at the age of twenty seven is a little over 100 pounds. The only worry as he gets older is that his upper torso will get to heavy for his legs and that he will lose the only true independence he has and end up in a wheelchair. I pray that never happens.

AS it is he is fed, bathed and dressed my someone. Its like he is an adult trapped in a infants mentality. But I know my brother is in there. And he is very smart. He does things all the time that amazes us.