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.
So as the month of
August draws to a close, we ask that as you go about your day and the
days ahead you make a conscious choice to never lose courage in the face
of the fact that someday it will come to end. Make the most of your
time in between. It will take an insane amount of courage to take the
day as it comes. It will take courage to focus on whatever you choose,
whether it be quantity or quality, and do so unwaveringly. Life takes a
level courage that is unmatched. Having the courage to live in the life
you have been handled is the most courageous thing that anyone will ever
have to do. Courage is a choice and it is a choice that must be made
repeatedly throughout a lifetime and, sometimes, one that must be made
repeatedly in the span of a day. It is a solitary choice that
individuals must make on their own. The choice to have courage or not is
one that will impact others. It is not an easy choice but rather the
opposite, maybe the most difficult. Whatever you choose in other aspects
of your life, the choice of courage will undoubtedly make all the
difference. Choose to Have Courage and Never Ever Lose It!
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