Wednesday, July 21, 2010

Washington Post

We are in tomorrow's Washington Post. Our photos are online now...
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85% divorce rate by my favorite blogger Robbert Rummel-Hudson, Schyuler's Dad
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Friday, July 16, 2010

Microarray SNP results

Hello everyone! Sadie had the Microarray SNP test and a CBC blood test. We found out today that she is anemic and will be taking iron supplements. The SNP test showed that her new karotype is deletion 8p23.2 extra xp 22.13 to the terminal deletion. In short, she is missing more chromo 8 than we originally thought an...d she has a larger band of extra xp than we previously thought too. What does all this really mean....???? Not to much, nothing has really changed....I wish I could say differently, but Sadie is Sadie and she will continue to show us her path.

Tuesday, July 13, 2010

a disgusting topic, still funny none the less

While I haven't posted too much in the past few weeks, I found it funny to just go ahead and post this quasi-milestone....Sadie has been getting a complete giggle out of farting. There I said it. When the moment hits her, she will look dead at me, fart, then just so big and proud, she smiles, and follows that up with one of her classic squealing giggles.

With that tidbit of information out there in the universe, I can fill you in on the past few weeks and how summer is going around here.

I honestly haven't felt like writing much because of my new dilemma with making sure I paint a real picture of life around her/here. I struggle to stay strong. I try super hard to keep all emotions about the disappointments about Sadie hidden even from myself. When I feel those tingles of pain ripple through my soul, I quickly tell myself to pull it together. I remind myself of all the wonder and gratitude she has brought to my life. No matter how hard I try to squelch those feelings, they pop in and out weekly and on occasion, daily. I can compare it in a sense to the same feeling when you see one of your children nearly fall, that outer tingle on your skin as you reach out to catch them. But this is different this is the inner tingle, the inner fear that no matter what I do, I CAN'T FIX HER. It's the tingle inside that makes your eyes well up with tears and you are a breath away from pulling it together or finding a moment to cry.

And so I wrote that hours ago, in fact it was this morning, but still to reread it before posting, I wouldn't change a word.

On another note, the summer seems a third over and we have been going to the beach, water park, hanging in our back yard, and of course watching A LOT of Disney's Princess and the Frog. Sadie's attendants have made it possible for all the fun outside these four walls and I'm grateful to live in a country that offers services to her. I don't feel paralyzed to the enormous amount of energy it takes to get both girls out the front door, especially Sadie who still requires 100% help to dress, potty, eat, etc.

Both girls did have random fevers last week that lasted about 48 hours and both recovered without major incident.

Overall, we are having a wonderful summer.

Monday, July 12, 2010

Dear Universe

Thank you for the bizarre coincidences in the past couple of days....they are really getting me thinking. Although some say there are no such things as coincidences.....hmmmmm
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Sunday, July 11, 2010

Good Morning

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Elizabeth Barrett browning: 685. Sonnets from the Portuguese iv    IF thou must love me, let it be for naught     Except for love's sake only. Do not say,     'I love her for her smile—her look—her way   Of speaking gently,—for a trick of thought   That falls in well with mine, and certes brought          5   A sense of pleasant ease on such a day'—     For these things in themselves, Belovèd, may   Be changed, or change for thee—and love, so wrought,   May be unwrought so. Neither love me for     Thine own dear pity's wiping my cheeks dry:   10 A creature might forget to weep, who bore     Thy comfort long, and lose thy love thereby!   But love me for love's sake, that evermore     Thou mayst love on, through love's eternity.  
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