The mall train ticket was not for Namine, though. It was for me. Namine, being in a wheelchair, rides for free. I, however, am not.
When we roll up, Namine in her wheelchair, to get on the train, there’s never any question from the employees that Namine does not require a ticket. The wheelchair itself speaks to that plainly enough, after all. But when I carry her, it is not so evident that she is disabled. This astounds me.
It was not always this way. Namine used to have a trach, but a barely visible scar is all that remains. Heck, it was obvious enough that she required special care when we were strapping this tiny child into this special wheelchair built for the sole purpose of accommodating a multitude of medical equipment: suction machine, ventilator and its battery, feeding pump. Even her feet are not the shape they used to be; she can wear shoes now. Shoes! It still amazes me what modern medical care has given her.
I love riding on the train with Namine. She’s so energetic, waving hi to everyone we pass and bouncing to the music. Her smiles are always infectious.
When we went into VisionWorks, it took Namine little time to find a pair of glasses that she liked. She’s such a girly girl (except when she’s not), and hearts on the sides couldn’t possibly hurt. The frame she picked out might be pink? Or purple. I don’t know, I’m colorblind.
Namine was a little disappointed that she didn’t get to take the glasses home with her that same day, but she was understanding. As we were hashing things out with the cashier (Namine having my primary and her state insurance always complicates things), Namine piped up.
“Excuse me, lady? Why do you have a doctor’s office in the glasses store?”
She was pointing to the lab where they make the glasses. But the tech inside was wearing a white lab coat, which was, of course, all too familiar to Namine. The cashier explained to Namine that they made the glasses in there.
“Ohhhh. So that’s where you’re going to make my beautiful glasses?”
I’m glad that she’s so excited about getting glasses. It wasn’t until some time in middle school when I needed glasses, but I hated needing them. Namine’s prescription is just for reading, not all-the-time general use, but still, needing glasses is not always an easy thing to deal with.
It’s known and well documented that kids with Pierre Robin Sequence often have both vision and hearing problems. We’re fortunate that Namine so far has had little trouble with her eyes and none with her ears (save for the selective hearing that all five year olds have), but now that she’s reading and writing more, we’re seeing that she’s having some difficulty. It might simply be that she can’t quite get her eyes to focus.
Nothing is for sure, though, and the glasses are the simplest solution to a potentially complex problem. There are several possibilities as to why Namine is having trouble reading and writing, poor vision being the least worrisome.
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