One more day, one more pill: thats it. After the pill we give Logan in the morning, I will box up 3 unopened packets and a few open ones and fedex them back to our clinic. What happens to them after that? I don’t know. What happens to us after that? I don’t know.
I still haven’t had the heart to tell Logan that this is it, we are done. While his communication skills have blossomed, I am just not sure if he is ready. If I could, what would I say?
Probably something like this: “I’m sorry. I’m sorry for that there are no more pills. I’m sorry you had this new beautiful world opened up to you and for you, and the door might close on it. All I can ask is please don’t leave me. I have grown so accustomed to the little character you have become over the past year and the thought that I might lose that is heartbreaking. The knowledge that you have real friends at school helps ease my anxiety when I drop you off everyday knowing you can’t tell me how your day was when you get off of the bus. Seeing the relationship between you and your sister blossom warms my heart. The joy I get from seeing you pick up a toy and play with it, the right way, REALLY play with it, is more than I thought possible. I will not give up on you. Fragile X may be in our DNA, but it WILL NOT take you over. I have always told you I would fight a lion for you and baby, right now this is our lion. We will pack up those pills and send them back and we will move on. I will find something else that will help. You know the cowboys you love to watch so much? Well, this is our frontier. There are amazing things being researched every day. and they need our help. So, I’m sorry this one didn’t work out the way we wanted (just yet) but maybe there is another one out there that will be better! So until we find it, I just hope that you will continue to grow and blossom.”
To read more about our story and more families involved in the STX-209 study, please visit http://www.stx209stories.com. For more information on Fragile X Syndrome, please visit http://www.fragilex.org