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!