A few weeks ago, I was so very fortunate to be able to go to Washington, DC. I look forward to the trip every year for a variety of reasons, here are just a few: 1) As a Southern girl, even this harsh winter, I don’t get to experience snow, REAL snow, not the brown yucky stuff that we get here that shuts down the city for a day or two, but the beautiful white powdery stuff that blankets everything. Because we go in March, the timing is usually that it snows a few days before so I get to see some but this year, it snowed the day before we got there and stayed cold so it was my first real experience with snow. It took everything in me not lay down on the grounds of the Capitol and make a snow angel, so I opted for the first thing I thought of, and wrote “FX” in the snow. It came out awesome! 2) The chance to meet with our elected officials and their staff and to be a part of the legislative process is truly an experience every one should have at least once. There is something about being on Capitol Hill and walking those halls that just makes me proud to be an American, not to mention it feeds my inner history nerd to be surrounded by all the history of that beautiful city and to be able to either educate them on Fragile X Associated Disorders and just give them an update on how we are doing, its always such an incredible feeling that is difficult to put into words. 3) Its a chance to see in person some of my incredible Facebook FX Family and get to bond and catch up and sometimes even meet for the first time but we all have something in common, Fragile X was introduced into our lives and we can laugh and console and educate and just “get” each other for 24 or 48 hours.
While we were there, someone just happened to mention something about STX-209. Every once in awhile, when I hear it, my stomach drops and my heart twinges just a little. Then, I stop and realize its March and Logan took his last dose in July of last year…..and we are okay. Really! We are!! Its amazing to me and my head is sometimes spinning with all the changes I have seen in him since coming off of the drug. He has SOOOO many words, sometimes his sister has to tell him to stop talking! Seriously!! I turned on a Winnie The Pooh movie and he named all of the characters as well as funny parts of the movie (honey, pot, books, mess, etc)
He came home with his report card today and his progress report and he actually has objectives on his IEP that he has ACHIEVED…things like counting, using some sight words, and tracing his name. He is much more attentive with his sister and even asks her to play with him. There is so much less frustration because he can communicate so much better lately. On our visit to the neurologist last week, when she walked in the door, he turned to her and said “hi”…she stopped and looked at me and I just smiled.
One piece of advice that I always give to parents of non-verbal children is one that I got a few years back on my very first Advocacy Day. It was my very first encounter into the FX world, I had never met any other family or person affected with FX and I was sitting at a table full of them! I sat across from a couple from Connecticut who were telling stories about their kids and they were talking about how their son was talking. I was so intrigued because at that time, I had no idea what to expect and I just knew that Logan, then aged 5 I think, was completely non-verbal and life was difficult in our house to say the least. I leaned in as close as I could, totally enthralled as they shared stories of their kids. I began to ask questions and I am not sure exactly what I said but I expressed how I wondered if my son would ever talk, ever tell me he loved me or if he was hungry or where it hurt…he looked me square in the eye and told me, “Never give up. He will talk”. I wanted so desperately to believe it. I was also sitting next to another parent who had an older child and I couldn’t tell you at all who this person was or is, but I remember her saying rather negatively that she was still waiting to hear her son talk. I made a decision right then and there to only think positively where Logan was concerned. I couldn’t get bogged down in all the what he can’t or won’t ever do. I had to concentrate on what he could and would do. So, I turned from her and turned back to this other parent and continued to hang on his every word but the ones I remember the most and carry with me always is “NEVER GIVE UP” so I haven’t and I won’t.
And tonight when I cuddle up next to my boy, and he tells me “night night” and “love” without me prompting (yep! THAT happened earlier this week!!), I will smile and thank God for sending me the people He sends with the messages He does, just when I need them the most. Most of all, I will never give up.