This month I have been sharing facts about Fragile X Syndrome, and most people who know me know that most of the time I really hate Fragile X. I want to focus on the positives, though I don't like to admit it, there have been many since we started our Fragile X Journey.
"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ~ Kahlil Gibran
1. Fragile X changed me and my outlook on many things. Where I used to look at how things would affect ME, I now see how things affect my children. Where I used to lack self-confidence I now realize I must be confident to teach confidence. Where I used to be too proud to admit I needed help, I now realize I must ask.
2. Fragile X has allowed me to travel. I took my first plane ride when I was 31 years old (shocking I know). That trip was actually an Anniversary trip and had nothing to do with Fragile X (except for my anxiety). Since that first plane ride, I have boarded 28 airplanes....yes, in the past 5 years. I have been to South Carolina with my oldest son 3 times (we have one more trip next year). Jason and I were able to attend the International Fragile X Conference. My middle son and I attended Fragile X Advocacy Day in Washington D.C. and traveled to Sacramento to the MIND institute.
3. Fragile X has forced me to learn to do things on my own. It's not a big secret that I have extreme anxiety about certain situations. I met my husband when I was 18 years old, I had never been anywhere outside of a 60 mile radius of my hometown without either my parents or my husband, until I started traveling to studies with my children. I still remember that first trip on my own (with Rhein). It was going to be his first plane ride, I was going to have to navigate 2 airports, get us through security, through take-off, pick-up a rental car, and then drive ourselves 2 1/2 hours down an enormous (by my standards) highway to get to our destination in Columbia, SC. This may seem silly to some people, but this is a whole list of anxiety ridden situations for me.....to top it all off, I have to control my own anxiety because both of my children feed off of my energy, so if I am anxious, they are more anxious.
4. Fragile X has made me a fantastic researcher.....Oh the things I have learned in the past 11 1/2 years. I have researched IEP's, behavior plans, modifications, learning styles, learning and behavior strategies. I have learned from other parents, educators, therapists, doctors, conferences, and online articles. I have tried to share what I learn, the learning is never done though, there is always a new article, or new technique, new medications, new ideas.
5. Fragile X has connected me with amazing people and lifelong friends. I will tell you a secret.....the mothers of children with Fragile X (the dad's too) are amazing, strong, inspirational people. In some ways I think our support group helps to hold us all up. On days that I feel like it's too much, I might see a note from another parent who has seen worse, or has amazing news to share and I think to myself......I can't give up, she didn't give up. Some of the best advice I have ever received has been from fellow Fragile X parents. I know for a fact there are days that I would not have made it through without the love and support of my Fragile X family. For years, I only knew most of these people online. I was able to meet a few here and there at local events or conferences, but when I went to the International Conference that all changed.....finally I could meet these women in person, who without even knowing it, have meant the world to me and seen me through some of my darkest times.
6. Fragile X has welcomed me into a world of acceptance, I'm sure it has happened before, where you meet someone and you instantly feel like you have known them for a lifetime. Like you don't have to explain anything, you can just be.....now, imagine that times 600. Yep, welcome to the International Fragile X Conference. I'm not sure how many people were in attendance at our first Conference in 2014, and sure not everyone agrees or instantly likes each other, but there is a total respect for one another. To walk into a room of "strangers" and NOT have social anxiety, simply because you know EVERYONE in the room has social anxiety.......is an amazing thing. After attending our first International Conference last year, I honestly can not imagine skipping one in the future. It is good for your mind, good for your soul. I made friends there that I can't imagine going a lifetime without knowing. I know this seems dramatic, it is.
So, for all the bad things that come along with Fragile X, there are a lot of good things as well. The diagnosis of Fragile X has changed my life, I will never be the same person that I was pre-diagnosis. But, that's ok, honestly............... I am a much better person because of it.
""But we are strong, each in our purpose and we are all more strong together" ~ Bram Stoker
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