A Story

I guess…I guess it all started 6 years ago. We were a normal family. Nothing special, except for you… I always knew God had something unique in store for you. I just wasn’t sure what it was. You were my little sister, and as a big sister, I was suppose to be able to protect you. Which was hard considering the personality you had. You were like a butterfly, always flitting from one person to the next. You had so much energy it was hard to fandom how you could use it all by 8 in the morning and still have enough to make it through the rest of the day. My job was to make sure you didn’t get beat up, get yourself into anything you couldn’t get out of, and to just be there. I tried, I really did. I thought I would be able to protect you through everything…
Four years ago you were diagnosed with a uncurable, untreatable disease. I remember the day like it was yesterday. You woke and started yelling, “Mom, Mom! I can’t stand up.” You were so, so scared. We brought you to the hospital and they ran test after test after test. The doctor finally came to talk to us. An aerie silence ran around the room as we heard the devastating news. You were diagnosed with a fatal neuro-degenrative disease called MLD. To break it down, this disease destroyed all of the white matter in your brain. Leaving you with a rapidly decreasing ability to walk, talk, and eat. We were told you wouldn’t be able to eat or walk soon. It was only going to get worse, and there was nothing the doctors or I could do about it.
All of the blood ran from your face and you became as pale as a ghost. You were clutching my hand looking into my eyes. Speechless for once in your life. At that moment I wished for the world that I could be anywhere except in that room, with you. The pain filling your eyes was too much to bear. I dropped my gaze. My thoughts ran wild as the doctors filled mom and dad in on the rest of the diagnoses. I couldn’t believe this had happened to you. Why had God chosen you, the loving, free, wild one of the family? Why couldn’t I be the one that was chosen to bear this? You didn’t deserve it.
I think you decided to be strong after that, leaving me with the thought that I too had to be strong in order to help you along with this. Life was never the same, although we tried to make it as normal as possible for as long as we could. It felt like I was living a lie. We went to school for a while. You tried your best to keep your chin up the whole way. I admire you for that. You pretended everything was fine and spent your days helping people. Although everyone knew the situation that we were going through, they tried to make everything as normal as possible. Pretty soon going to school was out of the picture. It wasn’t an option. There were too many medications you had to be on, and it was way to hard for you to keep up with your studies. We had the face the facts. Although I didn’t want to admit it, everything was not going to be fine.
I have to hand it to you though. You did an amazing job. You were always happy. You always said, “Live your life to the best of your ability. Love until you loose and never forget to persevere through the bad and the good. Make it for me. And make it for you.”Although you couldn’t walk and could hardly talk, the huge effort you made to make everyone feel like there was still hope, showed us that this was happening for a reason. You were bed ridden but you never ceased to show courage, hope and perseverance. Sometimes I could hear mom quietly sobbing in your room. She would sit by your bed at night. I guess she was hoping for some sort of miracle. One time, I walked past your room to her crying, and I though you were asleep. Oblivious to the things happening around you. But when I looked closer at moms body shaking I could see tears running from your eyes as you played with her hair. A small reminder that you knew what was happening to you but never gave up.
I remember when you lost all ability to write, walk, and almost all ability to talk. You used to hum quietly and talk in your sleep. I knew your time was coming up quickly. Those were the days that I would sit in my room, in the dark, listening to you talk for hours and hours. It got to the point where I couldn’t understand what you were saying. Finally, you lost all your ability to talk.
Because of how hard it was for us to take care of you outside you never got to go out. For a year, you only went outside to get in the car on the way to Hospital. One thing that sticks in my memory was that you never cried. You would laugh at our silly attempts to break the ice on the way to the hospital and smile when we would tell a stupid joke. You were just like that. When I would sit in your hospital room and tell you about school, boys, and everything that goes along with a normal teenage life, you would listen intently. I could see in your eyes that you weren’t envious, just proud. You were proud of the fact that I would come to you, and talk to you. You would laugh at the best moments, and when I would cry about what was happening you would sit silently, knowing that you time was coming soon. You were so brave.
A year later you were gone. It was a blissful, snowy afternoon when it happened. I came into your room to play a song on the guitar that I’d been working on. It was for you. And you looked at me; the pain in your eyes was gone. Something had replaced it. I think it was peace. You looked at me so intently I didn’t want to look back, but I had to. You slowly closed your eyes and a smile spread across your face. You died happy, which was a miracle to me.
A year later I’m still sad about you; how you died…I still think that you didn’t deserve it. But I know you made the most of it, stayed with us as long as you could. You persevered to the end and I know you were telling me the whole time. “Live your life to the best of your ability. Love until you loose and never forget to persevere through the bad and the good. Make it for me. And make it for you.”



Written by Me
Thank you Em. You were my inspiration.