LilSqueaker's blog: "ugh"

  Many of us have lost ones that mean a lot to us, but i lost one that is hard for me to bounce back from. On November 19, 2011 I lost my older brother Joe. He was 2 years older than me but he was like my twin. Let me tell you a little about him.

   Joe was a very strong man even thought his body was not strong. He had a disease that most of the time wouldn't have allowed him to do as much as he did. Joe would not let his disease or his doctors limit him from what he wanted. Everyone loved him and he could put a smile on peoples faces that were having such bad days that they were ready to just cry. He was told that his disease would kill him early, since they only gave him a life expectancy of 20-25, but that did not stop him from loving the people in his life and being an inspiration.

    At 6 years old Joe was diagnosed with Duchenne Muscular Dystrophy or DMD. At the age of 10 he was in a wheelchair and told that he would never walk again. As he had to give up things such as kickball and swinging i gave them up along with him. Put my own life on hold to live with him. When he was 14 he had a surgery that allowed him to walk with a walker but he couldn't keep it up. With all the fights that he had then it wasn't enough to stop him. Three years ago we moved to a new town, away from our home that we had been at for 10 years, that is when things really started to go down hill. In September of 2010 Joe was taken to Wayne Hospital by ambulance. When they arrived Joe was comatose. My mother and myself, who have been his main caregivers, tried everything that we could think of to get him to wake up. They ended up in-abating him there and taking him under lights and sirens to Miami Valley Hospital to the ICU. We stayed there the entire time with him. We were in the ICU for around 1 1/2 months and the whole time Joe was trying to get the tube out and was determined to get out of there, of course only when there wasn't some gorgeous nurse.

  After 2 tries of getting it where the tube was removed and him coding they finally decided all they could do was put in a trac. We moved to Pulminary and there he was trying to break the need for the vent. The nurses and respitory tecnitions and PCTs all fell in love with him. Everyone including him were bent on him breathing on his own. That stopped when he coded trying to breath on his own. We were there for 74 days when they finally told us that we could go home. It took around 30 min. to get him out of the room because no one wanted him to leave.

  For the next year we were in and out of the hospitals with many different things. The entire time my mom and me were right there with Joe and you could tell that we helped him. I ended up getting pregnant on my 21st birthday and Joe made me feel that it was OK and that things would work out, that life always moves on even when you are faced with hard times that you never seen coming. Joe was always in a very hard place do to the fact of his issue and was always in pain, but he still smiled and would have a smile on his face. No one in that hospital seen him be upset unless of the fact that he was coding but other than that he would smile and laugh and make everyone in the room with him laugh. He was an amazing inspiration to all.

   It will be one year this November 19, 2012, and this is hard for us. He passed 7 weeks before Miliana was born and so has missed a lot. Whenever I have a hard time I think about Joe. I think about what he used to tell me...don't wait for someday make someday today because you never know when that last day will be. 

The main thing that i remember is that sometimes even when we are in pain and we are completely ready to give up and just not want to be in pain anymore there is a kid out there that is suffering everyday and still fights to live another day. Fights to see that one more achievement, one more movie, one more birth, or maybe even meet one more person. Don't take your life for granted because somewhere out there, there is someone who wishes to have a life to take for granted!!!

I love you Joe and I miss you everyday!!