Hello all! I hope you all are well and enjoying the warmer weather. The worst is behind us and summer will be here before we know it. The BallouSkies team has been busy planning our summer events and is very excited for this time of year! This update I want to talk about what having MD and helping others thru BallouSkies means to me. The only good thing that has come with all this rain lately is the fact that I have had tons of time to think about things. Introspection is healthy for everyone to assess their own lives. I have spent countless hours thinking about what the hell I am supposed to do with my life. I won’t lie and say I am a very religious person, but with my diagnosis I have found that believing in a greater purpose helps me to deal with the adversities I face on a daily basis. There has to be a reason I have this awful disease. With the creation of BallouSkies my belief in this greater purpose has only been strengthened. I used to lash out at my friends, family, and anything I could possibly think of to blame my predicament on. To pass off my feelings of “why me” and try to run from the truth seemed easier than facing the facts with my head held high. I also used to think that trying to stay healthy had no point because I would eventually succumb to the MD sooner or later. Now that I am a little older I realize that this was one of the stupidest things I could think. This disease is a disadvantage in every sense of the word, but nothing can change that fact. I have been trying my hardest toturn my situation into an advantage. With BallouSkies I have accomplished this task. Our charity is helping to redefine the protocols currently in place that state how this disease and its effect on the body should be treated. Not only does this help me, it helps people everywhere affected by the disease.
I am so happy that I have come to terms with my disability and have found a reason to fight through every day. My fight is no longer just about myself anymore. I need to push forward to continue to help boys with DMD. I need to push forward for my family, friends, and every person’s life that I have affected along my journey through life. I have to stay strong and healthy to prove to myself disability is just a state of mind. Sure things are a lot harder, but what fun is it to sail through life. To sit idly by and not change something in the world is not what I want for myself. The time for feeling sorry for myself is over. If I can get through each day with MD I can sure as hell help make the world a better place for everyone in my life. If I can help to make someone’s day better by simply smiling at them or make someone think about something in a different light than my day has been worthwhile. I know I sound preachy and self righteous, but this is how I will be living my life from now until the day I die. I feel as if my MD has helped me to rise above all of the shallow crap our world holds dear and actually see what things in life I should truly aspire for. Live each day to the fullest and don’t let other’s notions of how you should act or what life can truly be, affect the way you think and carry yourself every day.
I hope that my speeches and writing actually reach through to people and they understand that I do not want pity or others to feel bad for my situation. I sincerely hope you can reach a point in your lives that you are truly at peace with yourselves and do not take one single second for granted. I believe I can do more to reach this point but I am definitely on the right track. No problems we face are insurmountable, and if you judge a person be sure to do it based on how they deal with hardships they encounter in their lifetime. Be well, stay warm, and enjoy the little things in life!