Attitude of Gratitude - The Cure

Written as a Facebook status on May 25, 2019.

There has been some incredible news in the SMA Community that came out this week. I think, my Aunt Maureen has said it best, "Science rocks!!"
Yesterday, after hearing about the "cure" for 31 years, it is finally coming true.  Of course, it is 30 years too late for Emma and for me too. I have been blessed to be able to witness the effects of gene therapy first hand and I must say that it is like seeing a miracle every single time, Unfortunately, the old adage, miracles happen every day, came true too late for so many families. In most situations, I aim to be the optimist and for the most part, that is the case with gene therapy and its approval. However, my heart hurts, aches, for so many families, the parents, and siblings who never got to witness their children grow up. My Emma, my sister, passed away 27 years ago this year, for others, it has been even longer, and for still others, it has (only) been a week. In this case, despite what I grew up knowing, life is not fair (sorry to my grandpas). I don't say that lightly as fairness is not something I have ever chosen to focus upon, but in this case, I will make an exception. It is not fair, that Logan will  never dance at his wedding; it is not fair that Andy will never protect his little sister from a heavy down thunderstorm; it is not fair that Jerika will never get to hold her firstborn child; and it is not fair that Emily will never have a ballet recital. there are so many that I could go on for pages, but please know that I think of them always. I don't want to be the downer on this incredible news but I promised, long ago, to never forget, that I don't break my promises. I guess my message is;  be grateful for what you have, to those who came before you and to those who didn't make it. We are the survivors, we are the lucky ones. We have battled every day to survive and we made it. We aren't sure how much it will help us, yet, but we are here, we made it without a magic "pill". Don't tell us that we don't understand, we have seen everything and have witnessed everything. Just be grateful and have an attitude of gratitude! 

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.