Friday, June 3, 2011

chasing never

I thought we were running errands, Army-Navy for socks for M.O.B. dolls, the dollar store for a new coloring book for Beach & small candles for an art project, then the devil’s playground for doll stuffing.  I thought I was doing nothing more than driving the west side I-215 corridor trying to not get yet another rock chip in the windshield. 
“Wow look at the plane.  It is so close.”
Yes, an airplane, what are you three?
“Hey, there is another one.  And look another one.  Mom, this is a great place to see airplanes.”

Wait a second.  She is SEEING airplanes from the car? That isn’t mundane, it’s a flipping miracle. I nearly missed my exit but I would have gladly drive back and forth I-215 for the rest of the day. 
My kid could see something I thought she would never 'really' see.

How quickly we forget the ‘nevers’.  Alexis was born at 27 weeks, 2 lbs 7 oz.  Her age & weight, her eyes & intestines, her brain & lungs, everything about her in question what if this, what if that, what if.  What if she needs glasses from the supplemental oxygen?  What if she doesn’t catch up with her peers? What if she has intestinal problems? What if she catches a cold her body can’t fight? What if her lungs are diseased? What if she is 21 with a little asthma, an adorable smile, a knack for dealing with children, musically gifted, in college studying history and art, preparing to become a teacher?       

Conner was the opposite my full term baby.  I was told how nice it would be to have a healthy baby. Yes, I agree that would have been nice.  Conner was a medical disaster from the start.  He scratched his cornea at 2 weeks, ruptured his ear drum at 3 months, colic, chronic ear & eye infections followed, walking at 8 months he stepped onto a hot floor vent receiving third degree burns on the bottom of his feet and developed ear infections on the antibiotics…

As he got older he got more physically capable. The fourth time he knocked himself out I skipped the visit to the Doctor's office and headed straight for the kids meal & play ground.  Where he was afraid of going down the slide so he jumped from the top of the play structure. He had chicken pox twice. I can’t count the broken bones.  What if he gets hits by a car?  What if he wrecks on his bike and he isn’t wearing his helmet? What if he, lights himself on fire, jumps in fast moving water, jumps from the ski lift, gets in a fist fight? What if he is 17 with a few fist fights behind him most for the right reasons, a 3.9 GPA, a tattoo (oh my), and has early enlisted with the Marines. Way to go Conner!

What if the full term, never sick, or any trouble kid is the most ‘broken’?  What if the early walker, talker, thinker, reader, skater, you name it cool kid is the one that really has the ‘nevers’.  Right before Beach turned 4 we found out she is legally blind in her left eye, the damn thing wasn’t even wired, total nothingness.  The health & future of her vision in both eyes was not good.  To gain any vision in her bad eye we covered the good one and sent our four year old into total darkness.  I would love to explain it to you what it was like to blind your own child on a gamble but I can’t go through it. Thinking about it makes me cry.  At some point it got too much for her too.  Her personality started to change and we started to lose her.  We had to make a choice for a woman we have yet to meet: do we save her or her vision?  After a year of patching 3/4 time we stopped, letting her go hoping 20/180 would be good enough for a life time.

It was medically a bad decision.  And you know what? I stand by it everyday as the mother of a capable happy kid who we rescued from a black hole.

Still, I wonder how long she will have sight good enough to drive, to read college text books,  to see her own children?  I am hoping for technology not yet harnessed to save her vision.  It is the best I can do.  

So how is she seeing an airplane?  The same way she saw 3D for the first time lat month.  Her focus in the gym is defying odds and improving her vision- without patching.  Lots of boring science is involved so just trust me.  We her parents, settled for less than perfect sight to save a perfect kid. And that perfect kid demands perfection, within that demand she is doing for herself what we thought was not possible.  Like her sister & brothers before her she is stomping out the fears and worries of her parents. Checking under the bed, closing the closet door, turning on the nightlight, sending the ‘nevers’ away and letting the dreams pour in.      
Hey Beach, want to go for a ride? I have something I want to show you. 

P.S. from Wonder Girl's mom. Good luck at your gymnastics meet on Saturday. Don't forget your glasses, have fun, & knock 'em dead! I know you will be just perfect. 

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