+

As Juno McGuff says, "That little pink plus sign is so unholy."

Thankfully, mine is in a whole different ballpark!!!

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Guys.....it seems that yes, we have a winner. I display most of the physical/cognitive/emotional features associated with Fragile X Syndrome. Thankfully, it appears that mine is not an overly severe case, but am still slightly.....kind of lost right now. My case doesn't seem that severe, and it's no guarantee that I will have a mentally retarded child should I ever actually to decide to want to have children physically....(Ditto HD) but it DOES increase the risk.

Don't get me wrong: I believe every baby is beautiful, regardless if it should have a disability. But after all the drama, trauma, and heartbreak over my brother's well-being and placement in the world, I just don't think I could personally do it.

This is ridiculous. I'm only eighteen years old, and I'm dreaming every night of the little girls I want to adopt. Wow. This is really sad. Maybe it's just the fact that I'm seeing Luca so often that I want to have a child of my own.

I keep thinking over and over: "Someday. Someday." I realize that if I should become a mother, I'd be so frazzled trying to keep up with just ONE kid and trying not to royally screw them over that I'd spend any scarce free time I could find dreaming of the days where I was independent, solitary, and able to stroll into Einstein's at school if I wanted to for a bagel and spend as much time as I wanted doing nothing. Absolutely nothing.

How pointless and important and precious is that! I realize it's not happily ever after when you bring a child into your home. It's a consistent struggle to keep and maintain a warm household-a safe place for you and loved ones, despite the fact that it will see tantrums and tears and arguments and lies and messes and screw-ups and disappointments.

A happy place, beautiful in its chaos. This was the place I saw in a dear friend of mine-our prime destination, despite the fact that her home was tiny, and often messy with several children milling around. I must confess I envied this friend's home life for some time, only to be devastated when I heard it fell apart some years ago.

Keeping a family together-creating a warm environment-is a much harder struggle than people believe it is. Despite the fact that TV glorifies it by turning it into a wacky, zany stream of misadventures, for too many people, maintaining one of the two is difficult enough by itself. Some people stay together and "tough it out" for their loved ones' sake, despite the fact that they might be unhappy or uncomfortable in each others' society. Others need to separate and nurse their own wounds whilst looking after the people they love, like their children.

Keeping a hearth fire brisk and warm when it feels like half your coals have been shoveled out must be so hard-harder than I ever hope to fully appreciate.

Several women whom I adore deeply have had to make that decision to keep their coals glowing instead of suffocating them with a layer of dust. And while it can't be an easy transition for too many, and my tribute is uneloquent and flimsy, I just wanted to give a shout-out to all the broken hearts out there.

May your new year be abundant with hope and joy.

Back to the Fragile X...

Darn it. But am glad this really doesn't change much, if anything. When I was tested for ADHD, the results were inconclusive, and I never bothered to go back in for more thorough testing.

This DOES, however, explain a number of things....

1. Visual-spatial skills- skills involved in placing objects accurately in space. This can affect map reading, locating objects in diagrams, instruction guides, etc.
2. Executive functioning- this is the ability for problem solving and modifying incorrect strategies when the elements of the situation change. This can affect planning ability, organization skills and adaptation to unfamiliar environments or new systems.
3. Visual memory – this can affect the memory/understanding of diagrams, figures, tables and mathematical information.
4. Non-verbal communication- this is the recall and interpretation of non-verbal information. This can affect interpretation of non-verbal "body language" and communications, or the ability to closely follow a complex story, joke, etc..
5. Mathematical computation and comprehension

Okay. All of the symptoms were there, but I think the "math" one kinda hits a home run. Lol.

Dude, Congenital Nevi, Scoliosis, AND Fragile X Syndrome? My sister Julia assures me that this changes nothing in the long run-that I might be too young to be tested for these syndromes anyway, that it guarantees nothing, sets nothing in stone.

I know she's right. And yet I shied away from getting tested for HD last year, as was my initial intention. Julia and Ashley were positive that they WERE positive, and, at the age of 21, finally had the paperwork completed to be tested after genetic counseling.

I wish my journal entries weren't ripe with one alphabet soup condition after another. I wish I found more to talk about other than my weight (The holidays have been hard-I am DEFINITELY hanging out at the pool these next few days), my schoolwork, my family, or my fears for the future.

But while I've swore a promise to my sister that I wouldn't try and kill myself, (I couldn't anyway) I feel like the hideous snow sculpture Calvin made from the Calvin and Hobbes cartoon. The one well-titled: 'The Agony of Existence Weighed Against The Horror of Nonbeing.' The snowman has gone stark-raving mad in his frantic indecision, and is screaming, and screaming, and screaming in his frenzy. Sometimes, when everything rises up inside and I seem like I'm at my very ugliest, I imagine dying. Often. I've concocted plans.

And I still can't. I still need to keep trying.

Lately, I've been having some really bizarre, scary dreams at night, and I'm going to try adapting some lifestyle changes. To be frank, it's really starting to scare me how many twisted and creepy dreams I've been having, and I disgust myself with my own thoughts. I haven't gotten any writing done (Though I have had a number of computer problems), I've been eating a lot, (Gained two or three pounds) and after panicking, resorted to numerous pilate exercises and binging/purging. Again. When I said I wouldn't. Again.

I want to be better for this. I want to write, and the nasty voices in my head tell me that I CAN'T. I'm too selfish. Unoriginal. Lazy, selfish, sloppy, sentimental, stupid-I don't finish my projects. I'm still untidy.

But damn, I want to live, and the only way I can live without excessive guilt is to write, so here I am.

Am going to start listing ten positive things about my week when I post these mucho grande entries, so here goes:

1. It's a New Year, and hopefully, 2012 will be a bright one.

2. The Rose Parade is tomorrow. (It's a big, fancy parade they hold every new years with grand floats made entirely out of flowers! You should watch it on your telly.)

3. Probably am seeing a movie tomorrow. I've heard some very nice things about Tin Tin...?

4. My siblings are leaving on a trip to California this week, so there won't really be much of an excuse for me to not have any writing done. Ergh...I mean, yay!

5. After a snowless holiday, it finally started dusting flakes over the windy city. It's bitterly cold outside, but it does look beautiful. Everyone, stay warm!

6. I ate the motherload of chocolate this holiday season after visiting the Hershey and Ghillardelli factories in Chicago. (The act was not premeditated; and is this a good thing, or a bad thing?)

7. Am sitting here whining on my journal in a warm apartment on a chilly night.

8. Will be sleeping on a bed again by the end of this week! (I don't really mind the couch, though.)

9. Ordered a couple of books from Amazon that will be waiting for me when I fly back to Georgia in eleven daaayyyyss.....

10. I won't bend.

Some bad news: Unfortunately, yes, my brother's stay in Chicago Heights has been extended after some underhanded, but sadly, still legal work. It was crushing, after we learned that placement was possible in Spring, but this is just another extension. We're pushing for a new judge and lawyer, as this has gone on long enough. I won't stand to see my brother humiliated and exploited this way, and come June, summer school or not, I will be sitting in that courthouse for the appeal.

My sister's name is still on the co-guardianship list, and the State is looking in her favor, whereas the judge is more sympathetic to my grandmother's cause, despite the fact that is a severely unbalanced and misguided one. (We believe she is a grandmother and caretaker to her grandchildren, herself.) While again, it sounds awful to say so, if my grandmother should pass away in good time (Unlikely; my family tends to live awhile....my great-granny died at the ripe old age of 95....)......than Julia has legal custody of my brother.

If this is something that goes on for a number of years and one of my other relatives is keen to take on the fight for my brother's guardianship and Julia can't do it anymore, than once I've earned a degree and a life for myself, I'll hire a lawyer myself. I want to live. I want my brother to live. He deserves to live. I want to believe I do, too.

Sadly enough, this sounds a lot like the plot line of 'Auntie Mame....'

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For my readers and comments, thank you. This blog has kept me from falling to pieces when I'm literally at the end of my rope. Even if I don't always respond, (And I suck for that... Many times, I simply don't know how to respond) I always value your words and suggestions, which are both extraordinarily kind and have brightened up my hearth considerably. Even if you don't comment, I appreciate you taking the time to listening to a git's fine whine, and it makes me very happy.

For your happiness, I raise a glass.

For your future this year, I raise a glass.

For your safety, I raise a glass.

For your opportunity, I raise a glass.

For your (hic) journey down a bumpy and weird-looking corridor, I raise a glass.

Something interesting my brother-in-law Alvaro told me last night/very, very early this morning: In Peru, instead of kissing when the clock strikes twelve on New Years' Day, you immediately eat twelve grapes. With each grape, you're allowed one wish for a certain month.

For your hope. (Gulp.) For your prosperity. (Gulp.) That the whackbacks are not correct, Sarah Palin is not elected president, and the world goes down in a bloody apocalyptic nightmare. (Gulp.)

Much love, always.

Lauren