Frustrated

   I had hoped that the first "real" entry in my blog would be a bit more uplifting,... profound, even. I thought, when I decided to start this, that I would drop all the cares of the world off at the door and share great philisophical tidbits of wisdom to all the people who might flock to read my,... Oh alright, I'm not kidding anyone with all that. But, I did really feel like this blog would be a good way to share personal experiences with folks. All without painting them with the bleek reality that nearly every experience we have seems to be "stained" by Fragile X. I'm not trying to depress anyone, just sharing how it feels to be a FraX Daddy. We LIVE with Fragile X. Every waking moment of my life has something to do with, and some tie to, Fragile X. FXS, the leading cause of mental impairment. Mental impairment used to be called mental retardation. And, even though our society is working to erradicate the word, "Retardation," it still FEELS the same, even though we now call it, "Impairment."
   I don't want this to read like a pity party. This is how I feel. Underneath the smiles, the laughter, the jokes, when I'm at work, at home, at church, at the store, when I'm fishing, painting, playing guitar, building some project, etc. It's always there. It permeates my sleep, it invades my morning coffee, it goes where I go and controls what I do, my how and when. I don't have Fragile X, I HAVE Fragile X. I'm not a carrier, not affected, it doesn't exist in my DNA. But, that's the only place that I'm free from it. Everything else about me IS Fragile X. I married into it, I've helped create it, I've raised it, educated it, graduated it, fed it, clothed it... Yes, it's IN everything I've done or ever will do. It's even in this blog.
   Cold, callouse, cruel,... You might be thinking this about me right now. "He's talking about his kids!", "...his wife!", "...his family!" "He's talking about them as if they were some kind of curse!" No, I'm talking about the simple fact that Fragile X is, for me, another entity within my life. It's NOT,... N-O-T, NOT who my family is, or what my family is. They are and always have been my family. They're mine, and Fragile X can't have them. What they are in my heart is precious. One day we might get rid of Fragile X, I'll NEVER get rid of my family. I refuse to allow them to suffer. I'm battling for the upper-hand against Fragile X. And, guess what... Sometimes, I feel like I'm winning ground, little by little, I'm gaining on it. We might be tempted to celebrate a little now. I could stand back, poke out my chest and yell, "Woo, hoo!" Think that,  "Yup, we're actually getting somewhere!" I could believe that, because our kids will be involved in the search for a treatment, possibly be able to help find a cure, we're SO getting a grip on Fragile X!
   Then, yesterday, TJ was sent home from school with a black eye and assorted red marks. A black eye that resulted from a badly performed MANDT restraint that was required because he escalated to the point of hitting, kicking and spitting on the teachers. He stopped taking Prozac so he can become part of the FIX for Fragile X.
   So, you see what I'm dealing with. Fragile X, that DAMNED Fragile X gets into EVERYTHING and makes a right bloody mess of it. No matter what it is, there IT is. Jerking on us, pulling us, tearing at us... Always there, always wanting a fight and succeeding in starting a war. I'm tired, worn out, frustrated, and sick of constantly trying. The saddest part is, I don't know what I can do for my black-eyed son to make this horrid experience go away. As those of us with Fragile X know, this is permanently imbedded into his memory now. The bad MANDT restraint, the black eye, the pain, the struggle with the staff,... All of it is permanent. There's no way to take it back, no erasing it. It is forever. For TJ, it's another one of  the way-too-many forevers he's had to suffer.
   I love my family they're precious to me. But, I hate, I HATE Fragile X.