Just some thoughts I’ve been having

To say a lot has happened since my last post would be a serious understatement. Right now we’re 2 days out from a very sudden surgery for my husband, which is part of the treatment he is now receiving for colorectal cancer. The news, meeting doctors, coming up with a plan, arranging the surgery, all came on very fast. You can read about it on our CaringBridge site, but basically from first blush to surgery scheduled was all of 3 weeks.

Now I am sitting in my office, overwhelmed with things to do. But actually there is nothing to do. I have done everything I need to do in reality. My son’s care is accounted for for the next week, I have a lengthy list of caretakers if something happens to one of them, meals are planned and ready to go, all the final bills and mail and chores that have to get done are done. Now we are just waiting.

I am reminded that when I was in high school I had a habit of writing in all my homework very diligently in my planner. I was in an intensive international baccalaureate program and there was a lot of homework always. The closest TV experience to the one I had was Rory in Gilmore Girls. Except instead of writing for a paper, it was singing in my school chorus and every elite chorus I could audition for.

At the same time, my dad was at rock bottom in his journey with alcoholism so I spent a lot of time alone in my room, trying to deal with all the feelings of school pressure and my family being a source of constant, overwhelming tension.

To cope, I would write and rewrite to do lists and spend time looking in my planner at all the things I had to do without actually doing any of it. It’s like the act of making lists would soothe the part of me that couldn’t handle all the disorganization.

I’m feeling that very intensely these days. I write the same to do list in 4 places, often adding and removing things that have nothing to do with what is happening. Or creating lists upon lists that don’t really need to be figured out yet.

I feel the need to write in my journal when there’s really nothing else to say. I stare at blank pages thinking something has to come out because I feel such pressure right now, but I’m just tapped out.

But also, I’m not sleeping well. I’m exhausted every day, but I wake up early and find that I have to lay down partway through the day while my son naps just so I won’t get a migraine. I’m constantly on the verge of a migraine, which is kind of unacceptable right now.

People are worried about me in a way that feels equivalent to the way they are worried about Andy and that is a problem. I get worried that somehow I am coming across as weak, in need of help, unable to cope. Do these people who are worried about me think I need more help because I am not handling this well?

They likely see that care taking a sick person is a difficulty in and of itself, but I feel remarkably selfish being the center of this kind of attention when it is my husband who is ultimately dealing with the mutilation of his body and the lost time with his son. He’s on a lifting restriction for 6 weeks after the surgery and I just can’t imagine my life where I can’t hold my son. I’m trying to brainstorm ways to make this easier for Andy, but I’m stuck.

And then I get mad. I’m mad at the fucking cancer. I’m mad at a healthcare system that doesn’t just support people in these times. (Btw, in the middle of all this we got the notice for the premium increase for mine and Ronan’s health insurance. It went up 50% for 2018. What the hell are we even doing anymore?) I’m mad that we had a moment of gratitude that this was happening at the end of the year and his out of pocket max had already been reached, so we’re effectively getting free surgery. I’m mad that instead of spending time with him and Ronan, I’m freaking out about money. Andy will be missing a huge tech so the normal pay bump we get during the time won’t be happening. We have a GoFundMe to cover some of those expenses, but I’m pissed that I live in the richest country in the world and have to worry about paying our mortgage.

I’m mad that out of all the things I can do, all the skills I can offer, all the experiences I have, I can’t seem to make this less uncomfortable. Andy will still have to have major abdominal surgery. Ronan still won’t be able to be picked up by his Papa for over a month, and I still have to hold all the strings together when I don’t feel remotely qualified or prepared for this. (False, says a voice in me, you are the most qualified and prepared for this.)

When the surgeon gave us a worst case scenario of the cancer having already spread and said that the cancer might be “incurable” and it “would be more about prolonging your life,” I almost died right in that moment. The blood all rushed to my head and I felt the room spin.

How can I have found this man who loves me so much, a man who I could spend almost every waking moment with and not get tired of him, a man who makes me feel special and loved and appreciated and beautiful in all the ways that matter, and have him ultimately taken from me in this way?

We have a long way to go before we know if this is even a thing, but I’m already mourning his loss. I watch him at night when he turns away from me to turn off the light before bed and think, how will I survive without him? I don’t want to be a single mom. I don’t want to have this giant bed all to myself. I don’t want another person, I want him.

And then I bargain. Right? Because there is always bargaining. What do I have to do? If I keep all the details perfect, will it go away? If I promise to stay on top of the housework and find a job and stop running my own business, will this be the magical equation the universe needs to keep him alive?

And we aren’t even sure if this is the thing yet. But I’m already going through the 5 stages of grief with this.

And now I’m back to thinking how selfish I am that I even have grief over this. I’m not the one with the cancer. How can I think of myself at a time like this? How? How? How?

…just some thoughts I’ve been having.

Welcome to Stars Hollow

I have spent the last few weeks watching A LOT of Gilmore Girls. It’s a show I’ve watched in the past and with the new nugget at home it’s a great show to have on in the background.

See, a lot of being a new mom has entailed feeling really, really lonely. When my dad was in town he talked about the people he works with who need the TV or radio on in the background. He talked about how he was so happy with himself that he didn’t need the fake company. My dad’s personal psychology aside, the truth is that I need the fake company in the form of TV characters. I spend a lot of my day hoping that my day will come to an end, I can put my son to bed, and get 45 minutes to myself before I must to go bed to be somewhat adequately rested.

Ronan doesn’t yet have enough attention span or energy to fully interact with me for more than a few minutes, and I spend a lot of the day keeping him calm and holding my breath until he wakes up again. My days feel held hostage by my tiny human. I want to get projects done, do some work, write, read, hell even work out, but the capacity and ability to do all of that evaporates because of how unpredictable he is.

These last two weeks were particularly hard. Andy was in tech and he was gone from roughly 8am to midnight every day. I was usually up when he woke up and asleep when he got home. All the hours in between were just me and our son. I didn’t realize just how many decisions I made with Andy until he wasn’t here. It started with the simple choice of whether to leave the swing on or off during Ronan’s nap. Sometimes if I let it continue to swing after he fell asleep, he would wake up. Sometimes if I turned it off, he would wake up. What made the difference only the internal synapses of my son’s brain will know, but I had to play that guessing game every time I put him down for a nap.

And let’s clear  up that phrase “put down for a nap.” This is not actually how this process goes. Usually I would be holding my baby, feeding him, letting him hang out on his Mat of Neglect/Self-Sufficiency, and then he would start crying. I’d realize that he was likely tired so I’d start to rock him, I’d rock him some more, and more, and more. Sometimes for 30 minutes we’d rock. And this rocking didn’t happen in a rocking chair. It happened standing up, baby in arms, swaying back and forth. Do that for 45 minutes and tell me how your body feels afterwards because mine felt exhausted.

If he managed to fall asleep during that time, I’d try to lay him down in his pack ‘n’ play, a portable bassinet/crib, but because the pack ‘n’ play was helpful to Mommy and he had a sixth sense about easing up on Mommy, he would wake up about 10 minutes later and the rocking would start over.

I got desperate at one point and a friend gave me her old swing. Ronan had taken to delightful mid-afternoon screaming fits, likely because he wasn’t actually getting naps that were restorative, and was so distraught that there was very little I could do to help him fall asleep. He would sleep in my arms, making it impossible to do anything. We have all these beautiful romantic notions of motherhood. One of the primary images is a mother with a sleeping baby nestled in her arms with her supremely white couch/sheets/living room behind her. She always looks so peaceful with her sleeping baby next to or on top of her.

For me, I was getting overloaded by the sensation of being touched for so many hours a day that I would hold him and just start to cry to relieve some of the tension and anxiety. I’m sure other moms know the sensation that comes with the phrase “touched out,” but if you haven’t experienced this, it’s the physical equivalent of having to look at strobe lights all day. It’s overwhelming and constant and has very little relief. The only real cure is space from being touched. Which is why the baby who would fall asleep on me or wake up after being put down was so damn problematic.

So the swing saved the day. He would go into it and a within a few minutes be completely relaxed or asleep. These days I have to sometimes add the help of a pacifier, but it is still the magic seat.

But having to make the minor decisions about the swing added to all the other decisions one makes during the course of the day left me overwhelmed and anxious.

We talk about decision fatigue among adults in their working lives. It is well documented that if we don’t automate as much as possible people become overwhelmed and lose more and more capacity to deal with sudden stressors. I was already overwhelmed with decision fatigue before the baby came along, but I was lucky to have my partner to bounce things off of. Then I went from having help half of the time to having help none of the time.

I’ve said many times the last few weeks that nothing could have prepared me for being a parent. There is no amount of research, reading, or talking to other parents that could have helped me have a sense of what this experience would be like. So I can’t adequately explain how overwhelming it is because I don’t have an appropriate frame of reference. I now understand the great divide in our society between parents and non-parents. I don’t have animosity or even feel like I’m better than my friends who are not parents. I truly lack the words to explain the experience of going from managing oneself and all that a singular life brings with it, to managing a whole new being who can’t communicate or make their own choices and is constantly barraged with new experiences. How do you help that new being through all of that whiplash?

As it turns out, I needed Lorelai and Rory in the background to remind me that someday my new being will be grown and may even be able to have coffee and witty conversation with me.