My parents divorced when I was very young. 5 years old to be exact. My father has since remarried and as a result of his new marriage I have been truly blessed with some amazing additions to my family unit. One of which was my nephew, Dylan. We met when Dylan was but 3 years old. Dylan was born with cerebral palsy, a very severe case. He had a very rough and trying life. He was not able to use his legs and had very limited mobility in his arms. This did not stop him! He was never discouraged. While he was limited physically his mind worked just like everyone else's. Dylan and I clicked instantly, it was like we had always been family. We enjoyed making fun of other members of our family and we picked on each other like we were brother and sister. When I got my driver's license I would pick him up and take him to lunch or shopping and when I moved away to college I would make a point to try and still do those things with him. anyone who knows me knows I love my nephews more than ANYTHING in this world. They are truly the light of my life. Dylan was different, he offered something different to my life. He taught me things I had never imagined. I learned a new appreciation for life and every breath I was able to take. Dylan never once "wallowed in self-pity", he never once complained, in fact even on his worst of days he still managed to smile and mutter the words "somebody else has it worse". It was no secret to all of us that Dylan's life was truly a blessing and with his health conditions it was likely he would not live what would be considered an average number of years. Even though we had known this for years we had never expected all our days to be as numbered as they really were. Shortly before Christmas of 2011, during a routine doctor's visits our family was informed that Dylan's lungs were not functioning as they should and as a result his life was very precious and limited. His body was wearing out. He was tired. As time had passed since Christmas each day he got a little weaker and a little more tired. But he was continuing on as he always had, he still went to school, participated in choir and was tride and true to his school athletic events. Several weeks ago my sister texted me one morning and told me she needed to speak with me and I should call her as soon as I could. I of course immediately called her. Dylan had been to an oral surgeon and was informed that some of his teeth were at a risk for septic infection and due to his lung condition doing surgery would most likely (95%) result in Dylan being placed on a ventilator. It was not the news we had wanted to hear. The doctors and Dylan's phenomenal pain management team had decided that before any decisions were made about surgery a more extensive run of testing should be done. Just a few days later I received the call that Dylan was on his way to the emergency room and shortly thereafter he was transported to a Children's hospital almost 2 hours from home and placed in ICU. This was Sunday April 29th. His condition was worsening and only extreme measures could help us now, and they were measures that Dylan decided were not the life he wanted to live. On Wednesday May 2nd, Dylan was sent home under the care of hospice. My sister called me on the way home and informed me of the situation. I had planned a trip to Ohio to see him on May 12th, but once hospice arrived to the house later that evening they informed the family it most likely wouldn't be much longer, with that notice I left Tennessee at 9:30 at night on Wednesday May 2nd and rushed home to be with Dylan and my family. I was able to spend time with him reading, talking, hugging, singing and cuddling. We even got a few moments together to tell each other how much we loved each other. I told Dylan that he had changed my life and I could not be more grateful for my parent's divorce and my father marrying his grandmother because had that not happened I would have never been so privleged to have Dylan in my life. Dylan's presence in my life changed me, for the better. At 11:48 pm on Friday May 4th, at the age of 16 Dylan very peacefully took his last breath in the arms of his mother and father. I had gone to my parents house to sleep for a few hours and received the phone call I should return to the house, I had no idea what I was walking in to at that point, we had spent 2 days with no sleep, barely eating, and quite honestly i was loopy. I guess part of me suspected that something had happened, but a large part of me thought i was going over there because he had gotten worse but there was still time. I was wrong. When I arrived he had already passed. I felt like everything around me was crumbling. I couldn't speak. It hurt in a way I still 2 weeks later cannot put in to words. I'm angry. I'm angry he's gone, I'm angry at some point I am going to have to come to terms with it, and I am angry that there are so many people in this world that will never get to know the beautiful and amazing person that he was. I feel so amazingly blessed to have been a part of his life, I feel blessed because I know how much he loved me and I feel blessed that I got to be the person who helped him unwrap his presents every year for the last 13 years, but I feel sad because I never get to hug him again, or hear him say "I love you Aunt Kelly" again , I feel sad because I never get to take him to lunch and take fake shots with him at parties again , I feel sad because I don't get to pick on people with him anymore, and I feel sad b/c every Christmas eve from here on out I will not be the privileged one to help him open all of his gifts. I feel angry because right now I feel that it's the greatest of people that suffer the most, I feel angry because my sister is now without her only child, I feel angry because he was only 16, and I feel angry because I so desperately do not want to accept that he is gone, but someday when I am ready, I will. I know they say things get better with time, but right now I admit that it doesn't feel that way. During those last few days we were told, "Don't cry because it's over, Smile because it happened." I will cry because it's over, I will have those days were the pain from losing him feels crippling, but I will have the days that I will smile because he was part of my life. I will smile because I was able to love someone like him. I will smile because I have so many beautiful memories of him, and I will smile because I know how much he loved me.
This was a few Christmas's ago. I actually was the one that purchased the goofy glasses for him. you can even see my hand to the left of him and my super awesome shiny pink bag!
This was actually here in Knoxville when my dad and step-mom Rita brought Dylan down for the weekend to see me. He had so much fun! It was probably one of the best weekends I have ever had!
Also this is quite possibly one of the best things I have ever seen. This was a news segment from nearly 4 years ago that covered one of the many business endeavors that Dylan embarked upon. Others included (lemonade stand, dog biscuits, selling his own paintings).
http://www.youtube.com/watch?v=3RHZgNYsJq8
.JPG)
.JPG)
.jpg)
.jpg)
