Friday, April 8, 2011

Been so long since I felt this way, don't worry about me now.

Holy crap, where the hell was I? Where have I been, faithful readers? (SK ; ).  I wouldn't say I had a full fledged nervous breakdown but it still registered on the Richter scale.  My grandmother dying, the anniversary of 'the diagnosis', the stress of opening a business while still trying to work full time all combined to push me over the emotional edge.  I think (?) I'm pretty good at going about my day looking like an emotionally regulated person, except those occasional times I freak out on a receptionist, or yell at a woman for talking on her cell phone while pumping gas. Mostly though, I just try to stuff it and go, and then smile and nod and engage with others while trying not to crumple in a puddle, or at the very least have my face, my eyes, betray me.  This blog became the only place I vented.  I mean, I can't rightfully walk around moaning all day, all month, all year, all life? Who wants to listen to that? Like when a cashier says "How are you?" do you say "Uh my wife is cheating on me, my teen daughter had a pregnancy scare, my dog has cancer"?  No, you say, "Good."
There is an isolation to 'all of this disability stuff - fragile x stuff'  - no one gets it, no one understands, nobody knows the trouble I've seen, nobody knows my sorrow...
Recently I have joined some facebook fragile x groups, which lead me to fb fragile x friends (other parents) and other private posting groups.  And guess what - EVERYONE  has a blog! HA! I think I'm so special when I'm really one of thousands - millions? People deal with this crap everyday, but how? I read other blogs and people seem so upbeat, positive, HAPPY???!!  Really, people can be happy again? To me that is unfathomable.  Than I think maybe I AM just a wimpy bitch.
Anyhow, this blog became the only place I 'talked' and the only people who truly knew what was going on in my head is the people who read this blog.  This exempted my mother, many coworkers, and frankly I think even my husband.   I finally had a breakdown in front of my husband, and he was pretty shocked at how fucked up I was -  do I hide it that well or his he really just that clueless?  Combo?  That's when I realized what I was doing, and how this CAN'T be my only outlet.  It's freeing, and relieving, and informative for you peeps who really want to know, but it can't be the sole thing I do to cope with my thoughts.
A few weeks after my last post, I got sick with strep.  In my face.  Yes, I know, noone has ever heard of that, but if you missed it I am SPECIAL so my head blew up with what looked like an external/internal 1st degree burn.  It was tender to the touch, all the lymph nodes in my neck were tender and enlarged, and my face was red, swollen, and I resembled like Cher's son in the movie "Mask."  My head had become ridden with infection, just as I complained of feeling 'poisoned' with bad DNA.  The internal representation of my poison became externalized on my outside, my physical self, showing what I really felt like inside.  I think my body broke down because of the stress.  It needed 5 days in bed and a week out of work.  I slept SO MUCH for the first time in years, and after the week I feel SO much better! I'm rested! Wow, this is what getting enough sleep feels like! I think it served as a wake up call that I have to take better care of myself.  We all know this cliche to be true, but don't always practice it.  I'm going to make some small changes (more fruit, in bed by 11, take my vitamin faithfully, drink more water, perhaps TALK aloud about my feelings once in a while,  blah blah blah) and hope that that these help.  
Next time, instead of blood poisoning, I'm going to write about winning the lottery and see if that will come true.

At this point, Owen is almost 2.9 years old.  He is over 40 lbs, nearly as tall as his almost 6 year old sister, loves big trucks and spending time in the kitchen.  He is into EVERYTHING, particularly kitchen cabinets, cupboards, the fridge, anything water related, food related, action related.  This kid is driving me nuts!  Completely mischievious, he knows exactly how to push your buttons when he isn't getting what he wants.  Cell phone, knife, glass cup, he grabs the EXACT item that he knows will get you to move the fastest.  You can tell him a million times to 'not touch the faucet' in the tub, but the SECOND you look away he changes the temperature setting.  Loves running in the opposite direction of the way you need to go.   When he gets really mad he will grab something and throw it on the floor, we call 'going Hulk' - "Hulk maaaad, Hulk throw on floor, grrrrr."  Oh yeah, I have a toddler boy alright.
Owen loves emptying and filling the dishwasher.  He adores his father and when dad is around, I am invisible and he wants nothing to do with me.  He has already been brainwashed into loving football, hockey and baseball, and gets mad when any of them have commercial.  He is talking, but it is tough to understand, and he also uses lots of signs.  Owen also LOVES going to daycare 2 days a week, runs into the class without a second glance at me.  He is in a 'typical' daycare with all 'typical' kids, and he does really well there and enjoys it, loves the other kids, his teachers, his daily activities of songs, books, gym/outdoors and toys.  The teachers there also use signs, and he has learned many signs there that I would have no idea he knew until he would suddenly bust out with 'more' or 'please'!   Owen's early intervention workers also visit him at daycare, and I have heard he 'thrives' there, and also he TALKS way more there!! WTF?? I realized he probably talks less at home because he doesn't have to, we understand him and anticipate his needs. 
Owen will be getting evaluated at the end of the month by the school system to asses his needs and assist in the production of his IEP (individualized educational plan).  I am also going to look at a specialized daycare/preschool/school/summer camp program nearby that has tons of services, to see what they offer and if it would be beneficial for Owie attend.
So there ya have it.  That's our update. I deeply appreciate the people who care enough to read, to follow, and who try to understand, and when I don't post I feel like I'm letting you down.  Please know that checking this blog helps me enormously, and always feel free to ask questions, make comments, or SAY something to me about it.  That may help too.  

Now for my plans to publish a book, get on Oprah and achieve worldwide fame....


  1. I love my friend Kathleen Quinn!!!
    That is all

  2. So glad you shared this with me. I am happy to know I am not the only one who lives with incessant guilt for my perceived failings in dealing with the trials of life. The fact that you haven't put a bullet through someone's head, kicked someone in the groin or run someone over with your car at this point is amazing! When I got cancer that was all I heard is God only gives us what he knows we can handle. At the time I wanted to rip off the noses of anyone who even dared to say such a thing! I can't even pretend to understand what you are going through, but I am damn sure that you should not worry about having bad days and an emotional explosion every once in a while.



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