It’s been hard to keep up with both the caring bridge and this blog lately. To be honest, most days I get to the end of the day and I’m exhausted, so I don’t even feel like writing one post. But I know it’s important to keep everyone informed of what is going on, so I make sure I at least write something on caring bridge. But I do miss writing here, too.
I am tired. I think it’s why most days I don’t get sad about what is happening to us, because I’m operating on autopilot. I keep holding onto the responsibility of so much for my daughter, wanting to at least do some little thing for her. So I’ve become an expert at tracking her meds and measuring them. Once in a while I let Travis do it, but mostly I hold onto it as my job as though no one else can. And when I do relinquish it to him, I worry and second guess him on it. It’s not fair to him, but it’s my need to be in control of something.
For a while, I was just memorizing when she had her meds, but now I’ve gone to taking notes. A lot of that has to do with her needing different meds at different times, so the combinations are different each time. She’s on six different medications now. Two are every 12 hours, two are every six hours, two are every four hours. And she gets formula every four hours as well. Part of the note taking is because the schedule has changed a couple of times since we’ve been home.
I have a feeling that when she does die, I’m going to sleep the clock around – both out of sorrow and from sheer exhaustion. I’ve already started to figure out some things to keep myself and my mind busy when this is all over – painting at my parents’ house (or maybe even my house), exercise, getting back to work, writing, organizing. And now I look at my daughter again and I wish so much that I didn’t have to think about what’s going on or eventually miss her. I hate knowing that she will be gone soon. After everything we’ve been through with the pregnancy, the hospital stays (hers and mine), and all of this year, it sucks that we have to come to this. I HATE IT!