At this very moment, two of my friends are preparing to lay their forever 4-year-old daughter to rest. This should never be the case. 2017 has been a particularly difficult year for many of my closest friends. Too many of them have had to say goodbye to their children in spite of the fact that for the first time in history there is a viable treatment for SMA. It is not right and it will never be okay for a parent to have to bury a child regardless of the cause. Today my heart is heavy for Jerry and Brieen as they say their final goodbye, here on earth, to their sweet daughter Jordan. Jordan will be remembered as one tough cookie, brimming over with sass, a smile that could melt the hardest of hearts, and eyes that shone brighter than the brightest star in the sky. Her time was short but her mission was clear; change what is known about SMA. She brought hope to this world and even though she may be gone her mission of hope will live on in the hearts of hundreds, if not thousands, of people who knew of this little spitfire. Jordan, you have touched my heart and will live on as I promise that you will never be forgotten...not by me, not by Brenda, not by the nurses, RTs, PCAs, OTs, PTs, doctors, and on and on at Nationwide Children's, and really anyone who was ever blessed enough to really know you and your incredible parents... You will live on in the hearts and minds of so many people Jordan. Keep sending us ❄️snowflakes❄️, okay 👑sweet princess👑?
Wednesday, December 13, 2017
Thursday, August 31, 2017
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.
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