Yesterday I took her contacts out at night and she ran off as I was cleaning her glasses. Something distracted me and 10 minutes later I realized she still wasn't wearing her glasses. Seriously! This kid can't see without her glasses! Her vision is BAD. B.A.D. BAD. You'd never guess based on the way she was running around playing. When I realized my mistake, "Chloe! You have to tell Mommy when you can't see! You don't have your glasses on!" I half scolded, half pleaded. "What?!" (Sounds like "What I do wrong?") She just doesn't get it. I just don't get that.
The other day I was decorating the Christmas tree with the girls. I sat with the giant bin of ball-shaped ornaments and handed them to Solana after I attached the hook. Chloe, who was previously occupied by dancing to holiday music, decided she really really wanted to help. I was trying to think of something ability-appropriate for her to do when she started grabbing for the ornament in my hand. She made it very clear that she wanted to do what Solana was doing. I wasn't thrilled about handing her a pokey paperclippy thing but also wanted to let her try. I held the ornament by the hook to hand it to her but she immediately grabbed for the ball. I tried to guide her hand to hold it by the hook and she wouldn't do it. We tried over and over but she insisted on grabbing for the ball. It was like a funny little hand wrestling match we were having.
She definitely wanted to hang the ornament on the tree - not play with it - so I needed to teach her how to hold it by the hook. The problem was that she wasn't even aware that the hook existed. Finally I was able to slow her down enough to guide her fingers and "show" it to her. At that point she "got" it and knew what to do. Every time after that she reached for the ball with one hand and used her other hand to feel for, find, then guide her fingers up to the end of the hook.
Watching her do this was a big reality check for me. Her motion was so...blind. It's how I would have done it with my eyes closed. I felt really emotional over it. She has no idea that she's different or that she can't see what other kids see. But I do. It's my job to make sure she gets the most possible out of every situation, even if she can't see as well as other kids. Chloe makes it easy to forget my job sometimes but other times she can't help but display her special needs. Reality checks are good and necessary. We always need to keep her moving forward but we need to remember our job of helping her do so because this world isn't exactly designed for a little girl like her.
But to be fair to the world, it hasn't ever seen a little girl quite like her.
2 comments:
Isn't it amazing how they adapt? I get your reaction, completely. Every now and then I also get a glimpse of just how fragile Daphne is. Because she's never had normal kidney function, she behaves as if her condition didn't affect her at all. I have heard that grownups who reach her level of kidney failure can barely get out of bed with exhaustion. She never stops moving.
She sure is an amazing little girl.
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