Remembering Jordan

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👑?

Never Lose Courage

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!

Eleven Years

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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

your already fragile heart. Now you know you can't go back, the past is gone and the future is much too far away for you to clearly make out what it will be. You can only see what is happening right now and even though your heart is aching deep down in your chest you force yourself to face forward and to look only at what is beside you. Beside you, you find only one thing; your box of memories of the last 11 years. In order for you to move forward, for your shattered heart to heal, you must, at least for now, pack away the box. It will be easier to move forward if you don't cling to the box of memories. The box is heavy and will cut into your tender flesh, making the change leave visible scars for the world to see. So you put the box away on a tall shelf and pushed to the back where for now it cannot hurt you. You turn away from the shelf and wipe away the tears you didn't even know you were crying. You close your eyes, allowing yourself only one moment, and take a deep breath. You open your eyes and allow a smile to grace your face as think of all of the wonderful things that are awaiting you in the still too blurry future. You may have a broken heart but you know that it will heal, given time. You know this because it has happened before and it will happen again, whether or not you're prepared matters little. Your face has dried from your earlier tears and your smile has become more real than it was before. You realize that the world around you is continuing and outside your window, the sun is shining. Yes, 11 years is a very long time and it is not easy to embrace the change. But moving on and changing is necessary so you go outside and feel the warmth on your skin and suddenly you realize it is all going to be okay.