Last night, at the end of anatomy lab, I was sitting with my new friend and helping her review the foot bones one last time when she asked me about KayTar. It wasn't out of the blue, I've mentioned KayTar a handful of times. I've made comments about shuffling her to and fro various places and I've given the short and sweet "She's got some medical and developmental needs." explanation. But last night she said, "So what exactly is going on with your daughter? Is it something genetic? Is she behind her age group?" And so I gave her the shortest version of it I could manage.
I told her no one is sure what is going on. She's delayed, but brilliant at the same time. I told her she can't run or jump or climb stairs, but she pulled one of my novels off the shelf the other night and sat down to read it. I told her she is deaf in one ear, and that she doesn't really eat. Pediasure is our best friend. I told her she didn't walk until she was over two and used to have the cutest red walker. I told her that KayTar's joints are too loose and her muscles are a bit floppy. I told her she has sensory processing problems, that innocuous stimuli is often misinterpreted as dangerous and offensive. I told her she has little lesions in her brain, areas of demyelinated tissue for unknown reasons, maybe a congenital virus. I told her she's had MRIs, CTs, LPs, EEGs, and probably most of the rest of the alphabet, too. I laughed. I told her she is doing well, though, thriving in spite of it all. She's come much farther than we ever thought. She's in therapies and it is making such a difference.
My friend said, "You must have amazing insurance coverage."
And I told her that we used to, but we just lost it. I explained why we couldn't find new coverage and her eyes filled with tears. She said, "You think you have it bad, and then you hear someone else's story..." I tried to make her feel better. I told her we're okay, really. Because we are. I said, things have been worse...at one point we had nasty possibilities on the table for KayTar. We thought it might be a tumor. Once we found the lesions, they thought leukodystrophy was a possibility. She's alive and she's thriving and everything else is gravy, I said. I told her the biggest hit was losing the private therapies...but at over $350 a week, we just can't continue them. But I told her we have some possibilities on the horizon and things might work out to get her back into therapy at low or no cost. She told me, "We just lost our coverage and my kids have asthma, sometimes they have attacks and the bill can be like $300, but it is nothing compared to what you guys are looking at." Her eyes were still red and wet, I think that mentioning the fact that in the early days we thought she might die wasn't as soothing as I thought. She said, "How old are you anyway, 24, right?" I said yes. She said, "I was 25 when I had my first baby and here you are taking care of all of this, and you've been doing it since 21, and even younger with your son? That's a lot." I agreed. It is a lot, but it is normal for me, for us. It just is what it is. The insurance thing sucks. But the rest? It's just life. And she really is thriving. It is amazing. If you met her, you might not even realize anything was different, save for her wee hearing aid. Again, I told her we are fine, because she still had those sad reddened eyes, moist with tears.
And then we reviewed the foot bones once more, because life just goes on.