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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Sunday, November 15, 2009

thoughts for today

I will post this later bc i want you to all read about the yellow poop, so I'll just save this, until I've given you ample time to read the post I just made.

Okay so I have nothing deep to say. I just need to get my thoughts down on some "paper."

I am watching the cutest baby Ridge you've ever seen- probably the only baby Ridge you've ever seen, read about, heard of, whatever.  He's just standing in his exersaucer, and yes, he is cute, even doing that.  He's just smiling.  And having some big brown eyes.

I, in no way, mean to sound whiney or gripey or ungrateful as I type this, but can I just say, not that you don't already know, that I am so sick of all of this?  Sometimes I feel like I am having a pity party for ourselves, but the truth is, I don't really think so, I just think I feel like I'm supposed to feel like when I cry or lament about this stuff, I'm in the wrong.  But who in the world would WANT this for their kid?  I don't doubt God is in control, I've always said that, through this entire journey.  But while that is true, and while that is what will carry us, it doesn't make me happy about this. It doesn't make me want this.  It does mean my life is completely different than I'd ever imagined.  Certainly not what I'd dreamed of-- not that it isn't so much more than I'd dreamed, as well.  I've only shared this with my husband, entire life, when I thought of the children I'd have, I always imagined one of them being "special needs"-- of course I didn't necessarily think of a physical disease being the "issue."  And I wasn't imagining that bc that's what I wanted.  So when I say this is different than what I'd imagined, that's only a half truth, I guess.  I always, when I'd "see" my future family, I'd always see a little boy who needed something more from me than my other children.  But I thought I was just being weird, I didn't actually WANT that to happen, I didn't actually think that it would be truth.  I hope none of this story sounds just totally horrible, I'm just trying to be open here.  And I don't know if "special needs" will carry a stigma that offends some of you- I don't mean it to...I mean, obviously, Ridge has special needs, right?  He needs more than Sawyer needed as a baby.  His needs are "special-er" right now.  Some of you can attest to my fears with this pregnancy.  I don't think I ever really had any real complications with it, none that were as scary as I might've made them out to be, but there was just something kind of "off" about it during the first trimester to me-- of course, when  you are pregnant, you want a healthy baby.  And you probably always worry in the back of your mind "what if..."  But I remember one morning, I went into my friend Melissa's classroom to talk to her about somethings in the pregnancy (she was also pregnant), and I just couldn't stop tearing up bc I thought something horrible was going to be wrong.  Everything was always fine at the ultrasounds and at the doc. appts.  So I don't know....and when Ridge was born, I had no doubt in my mind that he was "fine." And he is...and he will be.  But no one can argue w/ me that he is completely "normal"-- bc he isn't.  And I love him all the more bc of it.  I don't even know where this post is taking me, I'm just free typing....

I know he is supposed to- he will- get better.  It is an unbelievable peace knowing that, and now having someone I can regularly communicate with who has walked this road and is continuing to walk it w/ her own son.  However, one more year, two more years, four more years, whatever...I KNOW it will seem like a blip on the map, I know it I know it I know it...but for TODAY, it is hard.  It is difficult.  It is the wanting to take your children to the zoo, or to see the Christmas lights, or on a walk around the neighborhood, or out to dinner, or WHATEVER...and not being able to.  It is worrying about missing the little moments of Ridge's infancy/toddlerhood/etc b/c of this disease.  It is missing the next 1, 2, 3, 4, whatever years of Sawyer's life.  It is not being able to be 100% present 100% of the time.  It is annoying.  And that is just how I feel.  You can agree w/ me or fault me or chastise me or encourage me or whatever you want, but this is just how I feel. Somedays, nothing phases me.  I am happy as the day is long and just roll with it....but other days, I just can't pull it together.  I want to say WHY US?  WHY HIM?  and some days I just cry.  That's the truth.

God has been ever faithful and thankfully, forgiving and patient.  It is difficult for me to "keep it together" in any sense of the phrase sometimes. I lose it- I lose my cool, I lose my patience, I lose my faith, I lose my trust, I lose my joy, and sometimes, I lose my "witness."  There is no excuse. There isn't.  Nothing I can say will justify my anger at this situation and the way I act out that anger, but it doesn't change the fact that sometimes...I am angry. And I believe it is okay to be so- but I want to respond to my children and husband and my God in a different way, even in my anger.

I am a homebody.  It doesn't bother me to be cooped up w/o a ton to do, bc I'm with Ridge.  I wish I was at home w/ Ridge, but whatever.  It does bother me that I'm not cooped up with my husband and my Sawyer.  And it bothers me that right now, my Sawyer is sick, and my husband is taking care of him alone, and I'm not sure he knows how to work our new thermometer :)-- I'm sort of kidding there- it doesn't totally bother me, but I am certainly not sure he knows how to work the thermometer.  But, honey, you are a good dad, and thank you for taking care of our sick little man.  Here's to praying it's just an ear infection.  Yes, I would be pumped if it's an ear infection. BC that means it's not something else.   Something contagious.  update/edit: it's something strep-throaty-like. ick.

Speaking of my dear husband, last night, before the fever hit the fan, we had a hot date.  I thought he was taking Sawyer hunting this weekend (no, sawyer doesn't shoot anything or even hold a weapon).  Instead, he and Sawyer showed up at the hospital Friday night.  We hung out that night, watching TV, making a poster for Sawyer's school assignment, just being a family.  Then Saturday, we lounged around and then he and I went downtown, since we're kind of already there anyway (downtown OKC)....There really weren't any good movies showing, but we went to see A Christmas Carol anyway.  Not that it isn't good, it was fine, but I'm just not ready to see Christmas movies yet.  Warning, though- it's scary.  Or I thought it would be scary to a child . Sawyer won't be seeing it.  And for heaven's sake, I might've even been scared of some parts if I saw the 3D version, so I'd skip it if you're taking your kids!  If they are young, anyway.  But it was good.  We then spent a little time @ Starbucks and walking around downtown.  Then we went and ate here.  He did this all on his own- my sister in law and her husband ate there the night they got engaged, but Brandon didn't know/remember that... men and details. :)  So...this was all Brandon- he did it all on his own.  Or so he said.  Binet', don't you tell me otherwise!  So, anyway, I was very surprised.  The evening held other surprises, but some of them I will just hold dear and "ponder them in my heart"-- anyway, Mr. Cary, he did good!  This date/concert was also a great surprise a few years ago....but last night's date was definitely in our top 3.  And it definitely held the most surprises.

Like how Sawyer got a fever while we were out.

Alas, I guess it can't be perfect.  But until Sawyer's fever showed up, and when Ridge and his MLT weren't on my mind, the night was pretty close to perfect.  Thanks to my sneaky sweet husband and a super kind person who sent us a card that was "fixed up" with a gift that was supposed to be used for a night out.  Well, that's what we used it for.  Thanks thanks thanks.

Forgive the randomness of this post.  I had to get it all down on paper.  I'm sure more will be written later as my thoughts continue to brew.

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