I like planning ahead. I make lists, I schedule, and under normal circumstances, this helps me a lot. When I am anxious, I look ahead a few weeks or months and figure out what’s coming. Over the winter, when I was bummed about it still being winter, I signed our older son up for several weeks of summer camps. I felt calmer. I generally feel I can manage when I have a good plan. 

In caring for our younger son since his diagnosis, making a schedule or a plan for longer than the next couple of days is actually harmful to my brain because the expectation for me to actually stick to a plan right now is unreasonable. I hate this fact. I feel unmoored. I feel irresponsible, and I end up trying to do too many things at once. 

The idea of living in the moment used to sound like an overused cliche to me. It’s still KIND OF a cliche, but as I’ve found in writing previous posts, some cliches exist because they’re true. But MY truth is that I don’t like living in the moment. I LIKE having plans and things to look forward to. I plan both short term and long term. I like basically knowing what I’ll be doing each hour of each day. Maybe “living in the moment” refers more to being mentally present rather than multitasking or being on your phone when you’re supposed to be having quality time with your kids, so I could be mixing things up here, but I’m not living in the moment in that respect either. My mind is always somewhere else, being pulled in different directions.

I’m guessing my hang-up here is about control, and time is about the only thing I have right now. Having control of my schedule seems like it should be doable. I can’t control the insanity of the world, but I used to be able to control when I would go for a run and work and eat and finish my work day. Not being able to plan the week right in front of me, let alone a trip a month away seems like yet another thing that’s been taken from me. How am I supposed to calm and soothe myself, take care of myself so I can take care of everyone else, when my techniques are taken from me or difficult to follow through? 

Another excellent piece of advice I got recently was from a dad of a child with leukemia. We were connected by a friend, and when I called him, after an awkward moment of explaining who I was and why I was calling, I felt like I knew him. He said he lived his life in 3-hour segments. He didn’t try to plan anything more than 3 hours in advance. I’m curious to know if his wife has been living her life in this same set of increments (I’m guessing not), but everyone has their own way of coping. But this mindset is really living as practically in the moment as a person could, I think. He might as well have told me he decided to start walking on the walls instead of the floor, but I am committing to trying harder. I’m using my planner as more of a note-taking and memory-keeping tool rather than something used to plan into the future. Planning ahead is more painful that just rolling with it, in the end. I can do this kindness to myself and choose to stay mentally as close to now as possible.

I can’t control this disease or what it’s doing to our son’s body. I can’t control the inner workings of the hospital or the fact that visits take 2+ hours longer than I think they should. I can’t control anyone’s feelings but my own, and I have limited control over the germs inside my own house, much to my consternation. I’m taking deep breaths as I write this because it makes me want to cry just thinking about it, but essentially all I can control is my response to what is happening. That’s it. I have my own mind. I have my own actions. I have been learning this lesson the hard way my entire life, but maybe now it’ll sink in.