I've been lucky enough to have spoken to two Fragile X "Royal Family" members this week. I fucking love them. I love hearing about their children, their passion for their children and how they believe their Fragile X child has made them better people. They are devoid of self pity and rich with appreciation.
They fight. And I'm going to fight with them.
Tuesday, August 10, 2010
Monday, July 26, 2010
So this is what Ole Bill W. was talking about
Today I feel that my mother made things much easier for me. I am confident that I will not invite her to holiday celebrations or birthday parties this year. There has been no twinge of guilt today. And no anger.
We may come together again at some point but the chasm is so wide now that it feels (today) easy.
We may come together again at some point but the chasm is so wide now that it feels (today) easy.
No Vacancy
It is estimated that %3 of the population of the United States is affected by Fragile X Syndrome (it's an estimate because there is the assumption that some people who are affected have yet to be diagnosed). So about 100,000 people. And one of them is a child of mine.
It is estimated that %3 of the population of the United States can be considered geniuses due to their IQ scores (it's an estimate because IQ tests are ridiculous and most intelligent & rational people don't take them). So about 100,000 people. And one of them is a child of mine.
For sure, I think too much. Way too much. And this little statistic has been taking up quite a few rooms in my brain hotel.
It is estimated that %3 of the population of the United States can be considered geniuses due to their IQ scores (it's an estimate because IQ tests are ridiculous and most intelligent & rational people don't take them). So about 100,000 people. And one of them is a child of mine.
For sure, I think too much. Way too much. And this little statistic has been taking up quite a few rooms in my brain hotel.
Thursday, July 22, 2010
Anyway
So. I love facebook. LOVE IT. What I hate about facebook (because there's always something, isn't there?) are those bizarre, non-specific, mysterious, juvenile status updates that go a little something like this:
Some people really don't know how to treat some other people, SHEESH!
Don't you wish some people would stop acting like CHILDREN!?
Hmmmm, I thought FRIEND meant FRIEND!
In the event I stop being such a snob about such things, here's what I'll post:
Really?! Really?! Do you REALLY not know that when you use the word RETARD I want to punch you in the face?
Some people really don't know how to treat some other people, SHEESH!
Don't you wish some people would stop acting like CHILDREN!?
Hmmmm, I thought FRIEND meant FRIEND!
In the event I stop being such a snob about such things, here's what I'll post:
Really?! Really?! Do you REALLY not know that when you use the word RETARD I want to punch you in the face?
Wednesday, July 21, 2010
Out of the mouths...
Today, Lincoln responded to a question with a gesture, and a word. A WORD, BITCHES!
Tuesday, July 20, 2010
I guess I can kiss those political aspirations good-bye
By the time I get to the garage at work, I am so filled up with rage and hopelessness... Getting up at 5 am is not my favorite. And it's really not my favorite after an unpredictable night of sleeping by my sweet babe. I get in the car half asleep with not nearly enough coffee coursing through my veins and the gerbil starts runnin'.
It starts running and I start thinking about the folks I will invariably encounter at work who I now refer to as "assholes with perfect babies". If I were Mel Gibson, I'd scream into these motherfucker's telephones to SUCK IT. Oh, God. This business with Link has shaken my foundations.
My instinct at work is no longer to help selflessly. It's to play defense. I catch myself and move on... mostly. The other day I called a Dr. a prick in front of his patient and I told family members to GET OUT OF THE ROOM!
Right now, I hate going there. My car basically pulls itself into a parking space and I haul my disgruntled, depressed ass out of it and into the building. I put my scrubs on and i spend the day trying not to cry.
It's hard to change your dreams. It's hard to re-write the stories we imagine our children can create. Closing chapters, erasing endings, middles, beginnings. It's hard.
And it is made especially hard when I get driven into my fucking face on a daily basis seemingly typical babies born to heavy smokers, drug addicts, 15 year olds with families who couldn't care less... It's just, sad. I'm sad there almost all the time.
So, anyway, these assholes. All puffed up and ignorant playing a revolting game of "Whoever Makes the Most Drama Wins". Wins what? Certainly not the baby. They're not there for their perfect babies, they're there for the spectacle, to be able to tell the story. And. I . Can't. Take. It.
Pity the nice, loving, devoted-to-the-new-life-about-to-emerge families. This bleeding heart is just about packed up and moved out.
It starts running and I start thinking about the folks I will invariably encounter at work who I now refer to as "assholes with perfect babies". If I were Mel Gibson, I'd scream into these motherfucker's telephones to SUCK IT. Oh, God. This business with Link has shaken my foundations.
My instinct at work is no longer to help selflessly. It's to play defense. I catch myself and move on... mostly. The other day I called a Dr. a prick in front of his patient and I told family members to GET OUT OF THE ROOM!
Right now, I hate going there. My car basically pulls itself into a parking space and I haul my disgruntled, depressed ass out of it and into the building. I put my scrubs on and i spend the day trying not to cry.
It's hard to change your dreams. It's hard to re-write the stories we imagine our children can create. Closing chapters, erasing endings, middles, beginnings. It's hard.
And it is made especially hard when I get driven into my fucking face on a daily basis seemingly typical babies born to heavy smokers, drug addicts, 15 year olds with families who couldn't care less... It's just, sad. I'm sad there almost all the time.
So, anyway, these assholes. All puffed up and ignorant playing a revolting game of "Whoever Makes the Most Drama Wins". Wins what? Certainly not the baby. They're not there for their perfect babies, they're there for the spectacle, to be able to tell the story. And. I . Can't. Take. It.
Pity the nice, loving, devoted-to-the-new-life-about-to-emerge families. This bleeding heart is just about packed up and moved out.
Monday, July 5, 2010
Icky Bits
I got into it again at work today with people who for purely cosmetic reasons, think it's cool to cut baby boy's penises. Today it wasn't even close to funny and I'm sure I've earned myself a new label.
Here's the newly minted worldview of mine at work, though (and hey, world wide web, this is a big, hardcore, only said it to myself piece of thought torture. So feel privileged): I was fighting the whole time, the whole time these compassionate, committed healthcare professionals were flippantly discussing slicing off parts of babies... I was fighting the gut wrenching, nagging bitch of a notion that if we had circumcised Lincoln, he wouldn't be different in yet another way than all the "normal" boys in the world.
Here's the newly minted worldview of mine at work, though (and hey, world wide web, this is a big, hardcore, only said it to myself piece of thought torture. So feel privileged): I was fighting the whole time, the whole time these compassionate, committed healthcare professionals were flippantly discussing slicing off parts of babies... I was fighting the gut wrenching, nagging bitch of a notion that if we had circumcised Lincoln, he wouldn't be different in yet another way than all the "normal" boys in the world.
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