I truly believe that I was chosen for this life. I believe it all happens for a reason and we are not given any more than we can handle. Yep, there are days that I feel like it is almost more than I can bear, but deep down I know it’s all part of a bigger plan, one that I am not privy to yet.
I have often said I worry more about Victoria than I do Logan and joke about how Logan is my “easy” child. I know all parent struggle with “dividing” their time equally among their children, but I often feel that Victoria gets short-changed on a lot of things. It’s difficult for us to go places, do things unplanned etc because of fragile x. Fragile X sometimes rules our lives as much as we try for it not to. It’s always there and always will be.
As many people who know me know, one of the things I look forward to every year, is our National Fragile X Foundation Advocacy Day. Every March, we meet for 2 days ending with our visit to Capital Hill where we meet with our elected officials to ask them to make sure to include Fragile X Syndrome and Fragile X Associated Disorders in their funding and to vote in favor of some other bills that directly affect not just FX but the disability community as a whole. The ABLE Act being signed into law in December was a culmination of requests like that from not only our group but others. Its something I never thought I could or would do, but look forward to it every single year. Its empowering to meet with your elected officials, whom work for us and ask them to do this and then be able to return the next year and say “thanks” or even “why did you decide not to support us?”
After my trip last year and seeing some sibling advocates, I came home and asked Victoria if it was something she would like to do. She said yes so I saved all year-long and we were blessed enough to be able to not only afford the trip for both of us, but be able to stay longer AND have some spending money while we were there. Again, it all happens for a reason! As the time got closer, I got more and more nervous about taking her. Was she old enough? Did she really care enough? Could she handle it? Could I handle it?
Just before we left, I saw a post from a friend on facebook about ways to “deal” with your gifted child and when I read the article, I saw soooo many things that just yelled Victoria and why we sometimes have challenges with her. It’s not so much the FX! I decided to use the opportunity to change the way that I reacted to her while on this trip, with it being just her and I alone for 4 days! 4 DAYS!! What was I thinking???!!!!!
As usual, it all worked out like it was supposed to!
The most amazing thing that I got out of this trip, was the ability to sit back and watch her in a completely new element and just enjoy her. It was something I had decided to do after we had an “issue” the very first day when we were both exhausted. The rest of the trip was THE most pleasurable little girl you have ever seen. This was the first time probably since she was born, where she was truly the center of my world. And for me, this trip was the first time I was able to sit back and see the little person she is becoming. I got watch her and experience DC through her eyes. I have been to DC a total of about 8 times now, but this was her very first. So often, I just asked her what she wanted to do, or where she wanted to go and she controlled how we got there. “You are driving this bus” was said more than once. She really and truly blossomed in this environment.
She awed them in our visits and by the time we left, she was maneuvering the DC Metro stations like a pro! She learned and had fun and never complained once! We encountered winter storm Thor, where the entire city was shut down but it didn’t stop us. We played in the snow and even got lost. We had a plan the next day of what sites we HAD to see before leaving and we managed each and every one of them, 7 sights in 9 hours, and NOT ONE SINGLE COMPLAINT!!
I am more amazed now and more in love with the little person she is becoming than ever before. We absolutely needed this trip, together. I truly hope that this created a beautiful memory for her because I know it did for me! I will never ever forget THIS trip to DC. On our way home, she told me that she has decided that when she gets bigger, she wants Logan to live with her….in his own room, of course…but she already gets that she will take care of him.
The joy on her face AND his face when they greeted each other in the airport, warmed my heart because for the first time, in a very long time, I realized that BOTH of my kids will be okay, as long as they have each other, and my job is simply to guide them as best I can. Just like my parents did for me.