Awareness Month.......Fragile What?

July is Fragile X Awareness month, my plan is to write a blog every week this month to share information and explain how Fragile X affects our lives.
For 9 years after our diagnosis, I lived in a bit of denial, I shared only the information that had to be shared. I researched, I tried to learn things, we went to doctors, we looked for education plans and strategies, I reached out to only a few other parents online.I have used this analogy MANY times, but it very much was like we lived on an island, some resources we had, but others we would never find on the island. I was fine...my family was fine.....my boys would be fine. It was a very lonely 9 years, my husband and I against the world. Going in to every situation like it was the battle of a lifetime. Scared that we were somehow failing, or that we should do more. In those years there were really only a select few people that we let onto our island, a very select number of teachers, a doctor, some friends, most were scared away by the choppy waters surrounding our island, but some found their way to land........ those very few people were the ones that we shared our struggles with. We were always defensive and on guard, it wasn't a great time.
Then something pretty amazing happened, my husband worked with a man whose wife knew another family with Fragile X (crazy small world), and so finally after YEARS of island living, we found out there were other people on the island.
We met our first Fragile X family in person, they will probably always have a special place in our hearts...because they showed us the world, they introduced us to a whole group of people....people like us, and more importantly they understood.
Shortly after meeting this family we started sharing more, still very cautious on how much. Both of the boys joined studies, our oldest ~ a language study in South Carolina and our middle son a drug study. We also attended our first local conference and finally met more families.Amazing things started happening, we suddenly had more resources than we ever dreamed possible. Our middle son was flourishing with his study, he had gone from paranoid, excluding himself to trying out for musicals and talent shows, he gave me the strength to do what I should have done many, many years ago......I was very nervous to ask, (I don't like rejection) but had learned from an amazing mom how she spoke to her childrens' classes and what a difference that made in their peer relationships.I contacted both schools; at the time, my middle son was in grade school, my oldest was in Middle School. The grade school was very receptive and supportive, the Middle School was not interested......so, I went to the grade school and spoke to his whole grade about Fragile X, I was so nervous, but it went extremely well, and I actually learned some things from them. Kids are smart, kids want to understand, and they want to help. Shortly after my talk at the school, my son participated in a school talent show, one I will never forget....for 2 reasons. 1. He was scared, very scared...walked onto the stage and then off again. Then something pretty amazing happened.......2 girls from his class went up on stage with him and stood by him, that's it.....they just stood by him, so he would sing. They gave him the strength and confidence to do his song, and it was one of the most amazing things I have witnessed in my lifetime, I will never forget it, or the girls that proved to me kindness can be found everywhere. 2. When I left the talent show, I got to my car and had a message from the coordinator of the drug study, they went bankrupt.....we had to stop taking the medicine. One of the best days of my life, suddenly turned to one of my worst.

Amazingly though, I didn't retreat back to my island. I can not possibly ever convey to you the pain that was involved in this whole process. The utter feeling of despair and helplessness. I had finally found something that seemed to be working amazingly for my child and now I had to take that away? It's a terrible thing, it can defeat you. Instead, our little Fragile X island fought, our families who lost the medicine banded together. A few of the moms started a website, we called people, we spoke to senators and representatives from our areas, we wrote letters and stories, a few of us even made it into a New York Times article about the loss of the medication. Fragile X moms (carriers) are nothing if not thorough, Sure, some might say we failed, we didn't get the medicine back......but what did happen was pretty awesome. We spread awareness, we opened people up to our world....we created a bridge to our island, people got to read our stories and feel our hearts breaking. If I had counted during that time how many people said "Fragile What?", I'm sure the count would be in the hundreds, and so I had a new goal.....one that will be a lifelong goal I'm sure, spread awareness, educate people.

Members of The Kansas Fragile X Group at Advocacy Day

After all of that, amazing things started happening everywhere, we joined our first Fragile X Virtual 5K, we had a float in our County Fair parade, we remained vocal. My oldest son started high school and found one amazing friend, and the support of many of his peers. As we were gearing up to attend our first walk in Kansas City, a big hearted high school senior and his family started a walk right here in our community. The night before our walk in town I had dreams that only 4-5 people showed up, I was so nervous and scared. I can't remember for sure, but I think around 85 people attended that first walk, a large part of them high school students. Instead of being scared, I cried (I do that a lot). I think mostly because all these years I was on this self made island, when there were people right here in our own community that love my kids and support their journey, it was an eye opener. So, anyone that knows me (or any carrier) knows that I don't do things half way......I'm an all in kind of gal. The National Fragile X Foundation and the Kansas Fragile X Group have helped our family take part in amazing things. Jason and I were able to attend our very first international Fragile X Conference last year, with a scholarship from both the National Fragile X group and the Kansas Fragile X Group (I will have a WHOLE blog about that this month), we have now been to a total of 3 conferences in Kansas City, my oldest has completed 3 years of his 4 year study, Rhett and I got to attend Fragile X Advocacy day in Washington D.C., again with financial help from the Kansas Fragile X group, and my middle son and I just started a new study through the MIND Institute in Sacramento. All of these studies and events would not be possible without donations to the National Fragile X Foundation and the Kansas Fragile X group.

Members of the Kansas Fragile X Group at International Conference 2014

This week I was contacted by 3 friends (who are teachers) they all contacted me to let me know that Fragile X had made the "new business" agenda at their National Representative Assembly and passed! I was so glad that it did, but more importantly I was glad that when those 3 people; who have never been my childrens' teachers, only one of them has ever met my children, when they saw "Fragile X" on their agenda, they thought of me, my boys and our family. That tells me that people are listening, they care.

Rhein and Rhett's Runner's (Team Holton) 2014

I really don't like to ask anyone for help (again, you know that if you know me), but I do participate in the Virtual 5k, to help spread awareness and raise money for a foundation that has helped my family and so many others, and we will once again this fall host a local walk to help to raise money for the Kansas Fragile X group. It's only twice a year that I ask people to donate to a wonderful cause, one that keeps all of us afloat. Please keep reding my daily "facts", share them with people, and please if you are able to donate even $1, follow this link. It helps more people than you will ever realize, it gives us all hope that moving forward a few more people will know about Fragile X, and one day no one will have to ask "Fragile What?".

https://www.crowdrise.com/KansasFragileXLEK15/fundraiser/christinamurphy