I keep waiting to be used to the idea that my girls are losing their vision. I keep waiting for it to become our new normal. I'm waiting for it to not hurt.
And for weeks it doesn't hurt, because I don't think about it much. In the every day scramble and the every day joys it doesn't ache because it isn't there. But stars make me sad now, because I know they make Naomi sad now. Every time someone talks about stars, every time a picture of the stars pops up on the computer, or in a Highlights magazine, Naomi and I are both reminded of what she's lost already and what she will keep losing and it aches again. I wish it didn't, but it does.
Today Naomi had her electroretinogram that told us exactly what we already knew to be true: that Naomi's night vision is significantly reduced now, a first step in the degeneration of her retinas that will continue until she's lost all vision, apart from a miracle of God or modern medicine. And when the doctor who didn't know Naomi but had performed the test, met with me in a little bare consultation room to break this news to me gently, I smiled and assured her that it was OK, that we already knew this to be the case. And it didn't hurt too much, not too much. Until the doctor, who I guess hadn't read Naomi's chart, tried to assure me that the findings were non-specific and that maybe it wouldn't progress to blindness. When I had to inform the doctor that Naomi was genetically diagnosed with Bardet-Biedl Syndrome and that we knew for certain that it would progress, and when the doctor looked at me sadly, and I had to put on my happy face and tell her that at least we had the tools now to help Naomi, so that we could both walk out of the room without crying, that's when it hurt again.
When I found Naomi waking up in the recovery room watching a Doc McStuffins episode where the little Doc and her stuffed animals spend the night in the backyard watching a meteor shower, that's when it hurt again. Of all the things on TV, why does this show have to be on right now? When Doc McStuffins realized that one stuffed animal had trouble seeing the stars, but cheerfully proclaimed that it could be fixed with glasses and all the little fuzzy animals cheered I suddenly wanted to strangle those animals. That was not the happy ending Naomi or I needed to see, because it is not Naomi's happy ending. No glasses will fix this. And it hurt again.
When we were finally released, I let my 115 pound little girl climb into one of the children's hospital's red wagons and I drove her out of there as quickly as we could. And I think we both sighed with relief to leave those walls behind again for a few weeks, and to drive home in the warm daylight where Naomi's eyesight is just as good as anyone else's…at least for now. We were relieved to drive home to the every day scramble and the every day joys, to find the house the mess we knew it would be, and kiss the little faces that were happy we were home, and to put it out of mind again, at least for awhile.