Tuesday, July 12, 2011

Lets get this story started....................

First of all, I'd like to introduce myself.  My name's Gidget and I'm a single Mom living in Fishers, Indiana with my three kids, Cody, Emilie, and JB.
There are many reasons why you decided to read my Blog.  Most likely you're researching what Fragile X Syndrome is all about. Could be you just found out your child has it. Maybe you know someone who has this Genetic Disorder, or your a teacher, doctor, or one of my friends who just want to read my blog? Whatever your reason, I'm glad you're here.  My reason's behind writing this blog is not for anyone to feel sorry for me, or for me to complain about how hard life is with a child with this disorder. It's definitely not pitty party hour either.  Rather, I want to help all you readers understand, learn, and figure out what's going on with Fragile X children.  This Genetic disorder started off slow, but has built up a lot of momentum, so much, that one day we will all know someone who either is affected by it or is a carrier.  Although that's just my opinion, but I hope I'm wrong.  I do know they have made some sort of break through, which I'll talk about later, since it's only in the test stage, and I find it confusing (reversing Fragile X Syndrome).
Keep in mind I'm not a doctor, but I would venture to say, since I've raised my child with FX for over 20 years,  I'm more of an expert on this subject. This is the common response I've encountered over the years from the majority of doctors, when I ask them if they know much about FX, "Oh yeah, I've heard about it, but could you refresh my memory."  That's something no parent wants to hear. BTW I'm going to abbreviate Fragile X, so I don't have to type it out.  And the letters FX kinda looks cool.
I have so many things to say about FX, numerous stories, things to do and not do,explaining FX so it makes sense, so this blog will be going on for a long time.  I'll try to entertain you, because everyone needs to laugh every once in awhile. 
 On a serious note, in every stage of a child's life there are things that will happen. Walking, talking, starting school, puberty (yuck), dating, sports, driving, going off to college, career, and getting married, you know...things like that.  But when your child has FX, those stages take detours, and won't always happen, or don't work out that way.  It's a different game plan, and even now, I'm still trying to figure it out.   Even so, I've survived through the first 20 years, and for those of you just beginning, welcome aboard.
I think the best way to get things going is to start from the beginning.  Remember this is not about me, but I play an important part, so if I have to talk about myself here and there, it's just to help those of you with FX children know what you as parents will be feeling and all the shit you're going to encounter over time.  Besides that, I've had to jump through a lot of hoops to get to this point, and not be crazy, so I've got a supporting role as Mom.  But the main Star is my beautiful son Cody Alan Thompson!  
For now I'm going to sign off , because Cody wants to play Wii Bowling. I can't keep him waiting.  Seriously,when trying to wait he gets over stimulated and shit hits the fan.  Over time it has caused me to hate waiting too.  Strange how that works.


  1. Wow is this a ramble or what? Seems to be more about you than Fragile X. I suppose you need to vent, but how about more on your son. What have you done to help him become more independent? What measures are in place for when something happens to you? How have you helped him to understand those steps? This would be the kind of shared information that can help those of us facing similar challenges.

  2. I understand where you are coming from. I know what you mean about writing about me. I'm trying to tell a story about what I have experienced with a child that has fragile X. In my story Cody is only 9 months right now. When my kids go back to school I will be able to write everyday, but right now instead of writing I am having to play Wii bowling 5-6 hours a day with Cody. When Fragile X kids like something it becomes their only focus. If it's a positive focus,then it is like a gift. I am sorry to be rambling and making it about me, but as I get further into my blog I am sure every question you have asked me will be answered.
    If your child is young and your challenges have just begun, I would be glad to lead you in the right direction, just ask. I can even give you my number, so we can talk, whatever you need.
    Just remember EDUCATION is the most important aspect of your child's growth. Even if they are 1 years old. Again I'm sorry for not helping you in my blog, I will try to be more informative in my next posts.

  3. Thank you. I look forward to more of your story as I am sure it will help me in my journey.

  4. valuable information shared online!!!