Today is the last day of August and for people who are not directly impacted by Spinal Muscular Atrophy (SMA), it is the end of SMA Awareness Month. Today is the last day of newsfeeds filled with facts, photos, fundraisers, and post with pleas for "outsiders" to take notice of the world of we live in 365 days a year, 7 days a week, 24 hours a day. SMA Families live with the knowledge that every day is an important day. There are no guarantees in life and even fewer when you have a life impacted, daily, by the restrictions of a label of a "terminal illness". It's important to recognize that life, no matter who you are or what you do, is terminal. We are all destined to live a life that will, ultimately, end in death. It is a fact and it may seem incredibly callous to be so blunt on such a sensitive subject. That is not, however, what we want people to focus on. We must remember that the important thing to focus on is the time between the day we are born to the moment we draw our last breath. This is never truer than when you, possibly, have an accelerated time table of the "in between" which is what many individuals with diagnosed with SMA are told they face. Whether or not that is true is, often times, the subject of heated debates that never truly cease with a definitive agreement on what "the truth" is. This is largely due to the fact that it is all up to the individual. It comes down to whether one chooses to focus on the quantity of time or the quality of time. That choice, of what to focus on, quality or quantity, can and, often times, does change depending on the situation, the day, the hour or the moment.
Thursday, August 31, 2017
Monday, May 29, 2017
11 years is a long time to do anything. 11 years has a way of making something ordinary turn into a tradition. 11 years changes a person, a place, and all of the things that make certain things important. In 11 years you get comfortable with how it feels to do the same thing on a certain day with certain people. And then out of nowhere that thing that you have done for longer than just about anything you can remember is snatched away. It wasn't like you didn't see it coming but you kept your blinders on and refused to look behind because if you did you were certain that mere sight of the change would shatter