"A goal without a plan is just a wish" -Antoine de Saint-Exupry
Last summer my husband and I attended our first International Fragile X Conference, it was amazing. Before attending I had always thought it would be neat to go, I had no idea how vital it would be or how much it would change my life.
We have had the diagnosis of Fragile X for 11 years this month....whew, it is so hard to believe that it has been that long! When we were first diagnosed, there was no facebook (there was barely internet). I remember that our doctor knew nothing about Fragile X and was very upfront about that. The library had nothing on the syndrome, I had one book. So, I searched, and searched. I read so many websites that I was filled with information, that honestly at the time scared the living crap out of me, and was also very complex and hard to understand. Through all of my searches I found http://www.fraxa.org/ and http://www.fragilex.org/ from those sites I found an e-mail list I could join, and I did. I also found a parent contact in western Kansas, I called several times, left messages, and heard absolutely nothing. So, I read e-mails. Through the "list-serv" we could sometimes receive over 200 e-mails a day! I could hardly keep up, it was frustrating at times. I did find though, that if I had a particularly hard day, or a question, or any kind of problem and I wrote it in an e-mail and sent it out there in cyber land through the list-serv, people responded....several people.
Through this amazingly complex e-mail system, I found support....real support, from people who truly understood, who knew what I was talking about, who had and dealt with the same issues. It was amazing. I hate to overuse an analogy but I have said before that when you find out your child has a disability it is like you are suddenly placed on an island......alone, and fighting like crazy to get back to the mainland. The island grew slightly with the list-serv and I had conversations with people through e-mail that meant the world to me, kept me from giving up, helped us with IEP meetings, modification needs, learning style differences and gave us hope......hope that life on the island wasn't so terrible, as long as we had a map!
Years went by, and then there came facebook. Finally, we could join a group and actually see pictures of some of the people we had talked to and gotten advice from for years. Through pure serendipity we met another family in Kansas with 2 children affected, and they, thank goodness told us about the Kansas Fragile X group based out of Kansas City, once again our lives changed.......(there's a whole village on the island we didn't know about)!!!
What a life changer, really.
Since finding the group, we have been to 3 local conferences, 2 walks in Kansas City, 1 International Conference and Fragile X Advocacy Day, in Washington D.C. I want to focus on the International Conference though, my husband and I were awarded scholarships to cover our conference fee, so we figured out the rest and went to Orange County California to finally meet a large part of our "Fragile X Family"! I can never put into words what attending the International Conference meant to me, I met some of the most amazing people I have ever met. It was like finding the capitol of our island, and everyone being glad you were there! In a lot of ways the "fragile x family" is like your best friend from Kindergarten, you can tell a story, or ask a question, you can express your opinion. Though we may not all agree all the time, you are just accepted, there is no need to explain, no need to tell a back story, no need to feel embarrassed, it is just honestly a huge community of people who know....that's it, they just know. We all share that twinge of nervousness (along with many other traits) and we all have that hidden, tiny flicker of sadness and that is ok......really it is. I have never been part of anything that made me feel just so unconditionally loved and supported, like coming home, like taking a breath...a real breath, for the first time in 10 years.
After leaving the conference, my goal has been to go to the next one. Not just my husband and I, but our boys, our family members (the ones that want to). At the conference they had sessions for "self-advocates", we found that amazing and wished more could attend. We have amazing support in our home community and my mother came up with the idea of selling food (Indian Taco's) at our city wide garage sales twice a year to raise the money needed to cover the boys' expenses for the next International Conference (conference fees, hotel and food approximately $1200). So, after our first fundraiser we had earned more than half of their total cost, we decided then that if we go over our goal we will find a way to offer "scholarships" to other "self-advocates", so that they may also attend. We just finished our second fund-raiser, the turn out was amazing and am pleased to say we have exceeded our initial goal and have a whole year to earn more! The scholarships we received changed our lives, we just want to pay that forward.
On this island, there are not many things that you can do that actually feel like you are making a difference, a lot of times it is just you ~ fighting the same current.....over and over, feeling lost and confused. It can be overwhelming, it can make a person want to stop trying. But, knowing that you get to visit the CAPITOL OF THE ISLAND (International Conference) every 2 years, that gives you a goal, something attainable, something to work towards, a purpose...... that makes all the difference.
"I am only one, but still I am one. I cannot do everything, but I can do something. And because I can not do everything, I will not refuse to do the something I can do." ~ Edward E. Hale
