Numbed to It

My daughter is losing more vision.   It’s confusing because we don’t know why it’s happening.   But that’s not new—anything that happens to my daughter’s eyes is confusing, unpredictable and it doesn’t follow a typical path of progression.   Her eyes are just an unknown.

When she first had the retinal detachment, the “inciting event” that was an infection coupled with malformed eyes, that caused the main insult to her eyes, I was in fight mode.   Fight to do everything we can to get her eyes “fixed”.    We were told the situation was serious, but I thought it would be fixable.   No one said it couldn’t be, but it wasn’t looking good.   Still, I was completely hopeful.   Scared, but hopeful.

Then we saw Dr. Trese for the first time in December of 2015.   I remember asking him how much vision he thought she could get back.   In his calm, assured manner he said, “I’m hoping we don’t lose any more.”  

That took a bit to settle in.   And it was depressing.   I was depressed for a while.   Not a long while, but it was rough, imagining a world in which I couldn’t see—my daughter couldn’t see—and I couldn’t do anything to fix it.   But I got over it and accepted my daughter’s fate and vowed to fight it again and again for as long as there was a fight to be had.   Because there was no other choice.   Because that’s what parents do for their children.

That wasn’t the only time my daughter’s vision changed.   I’ve had to fight to be her advocate many times.   Fortunately we have some tremendously kind and responsive doctors and medical practitioners we’re working with that come to our aid when we need it.   But it’s hard.   Every time something happens and things get worse.

Right now my daughter’s vision is declining again.  It has been for a few months.   She can’t find doorways in our own house now and is getting lost moving around depending on lighting.   It’s so scary.   And yet I’m calm.   I’m not upset.   Is it because it’s happened so many times since August 2015 that by now I’m just emotionally numbed to it?

I still fight for her.   I will never stop fighting.   She’s my girl.   Now if only I can learn to read braille…

The Big Boy Update:  My son sings now.   He likes singing, hums to himself and makes up songs.   Last year he would have found singing totally uncool but thanks to his music teacher at school he’s grown to appreciate it.

The Tiny Girl Chronicles:  We got a pressure reading of my daughter’s eyes today in her eye doctor’s office.   Which is a crazy great accomplishment because she has a visceral response to having her eye pressure taken, even though it doesn’t hurt in the slightest.   I told them (when she wasn’t listening) that we were going to flat out lie to her and tell her we were looking at the color of her eyes or something else so she could have a successful pressure reading.   Which worked and she did well and afterwards we told her what we’d done and how great she was.   Now, going forward, I hope she’ll be more relaxed about having her pressure taken.