Keepin On Keepin On

Lyle Lovett sings a song about flying shoes. Well, it may not actually be about flying shoes, but that’s my favorite line. This week especially, I’ve felt like “flying” shoes.  Just in case flying shoes means something weird, I’m talking about throwing shoes, literally. That’s not a very deep thought, I realize but it reminds me of this: songs sometimes say the things we don’t want to, don’t know how to, or just don’t.  And sometimes, they just make us laugh. So now I’m going to avoid sad songs & songs that make me think, and just start listening to Raffi, or rap. I haven’t decided yet. 

This past week feels blurry in so many ways.  Or I’m blurry and this week just feels.. I can’t tell. For those close to me, I’ve had a lot of rules lately when I talk on the phone, or talk at all. I say I’ll talk, but I don’t want to talk about anything sad, or I have rules for them: they are to tell me something funny right away.  I cover my face if I agree to talking, or hide inside my sweatshirt- like a turtle.  Turns out, I’m bossy.  Things happen we have no control of, life keeps moving forward, and I’m usually trying to stay positive. Sometimes though, the ‘try’ doesn’t work and I don’t want to face all the rest at once.  I’ve cried more lately, but my ‘try’ is finally working again. So, I think I’m baaack. 

I met with Kaitlyn’s doctor Thursday. We talked to the neurologist in SF together by phone conference with Kaitlyn’s nurses as well.  During our phone conference, Kaitlyn’s caring doctors and devoted nurses explained how things have gone this last year, and these last few months especially.  We talked about services that are available to help Kaitlyn, and the kids and I together. Respite care, more help, occupational feeding therapy, and a social worker to guide us, are all in the works; and on their way. Nothing they said about Kaitlyn was new information, because I watch Kaitlyn go through the list we spoke of, every single day. She doesn’t walk nearly as much as she used to, she walks differently when she does, she's weaker, her speech slurs in intervals, her seizures are awful, sometimes she feels like she can't swallow, her body flails, she hurts, she doesn’t eat more than a few bites in a day-if at all, she rarely drinks, tube feedings aren’t going well, she vomits a lot, she’s losing weight again and she seems to be getting worse.  They said that this may be neurodegenerative, and that we may not know a specific diagnosis, as frustrating as that may be.  No one is giving up, and we’re going to do everything possible to make Kaitlyn better, more comfortable, and to always move in a productive-positive direction. Even though nothing we talked about was new, it felt bigger.  And even though those big things I know,  what I want to hold on to and focus on, is that smile she’ll still give me, how she got flowers for the first time from a boy this week, she met Daisy-the SAR bloodhound, that she colored in a coloring book, made me a picture last week, asked for more Mozart music, that she says “Mama” whether she’s happy or sad, that she whispers she loves me no matter what.   

Kaitlyn smiles when I make no sense, she asks me questions in between everything she goes through, she giggles, even if it’s a whisper some nights. Kaitlyn is so Kaitlyn, and that’s what I’m holding on to. 

Some of the things Kai has said this week: 

"Mama.. sometimes I say things that aren't really from my heart- but they do get you to say yes."

"I think I have a fever, the kind with no numbers. Also, my legs are both broken, and my stomach hurts. I don't think I'm breathing. I better stay home, with you, for 17 weeks."

"I'm so confused. I can't decide: do I want to be a pilot? Or am I sticking with police? This is serious."

"If I fall asleep and you don't snuggle me, I'm probably going to taken by bandits. Or zombies. But if you let me sleep with a flashlight and my police stuff, I'll be fine."

"I sometimes throw away my carrots."

"If God looked in my brain, sometimes all he'd see is that I like candy. And badges." 

"I decorated the car windows all with 'I love you' so you can be so happy about driving today. But I nearly froze my finger off doing that."