Less dark, still a little twisty

If you’re not keeping up on our CaringBridge account, we recently had an appointment with a surgical oncologist that was very positive. Given the uptick in the mood in the Willhelm household, I wanted to check in with a slightly less dire/macabre/ennui filled post.

It’s still very hard right now.

As I write this, Ronan is playing with our friend, Sarah, while Andy chills on the couch. I find that this space from the day-to-day caregiving of Ronan is such a relief AND I feel incredibly guilty about that.

Up to this point I hadn’t experienced a ton of mommy guilt. I was with him almost every waking minute of his day. He was surrounded by a lot of good, loving caregivers, and we still got time together in the evening for just the two of us. I was clearly fitting all the societal standards as a “good mom” balancing time with my son and time away from my son, a precarious balance that seems to be undefinable except when we see a mom not managing it. And then the internet has a lot to say.

But now, he’s cared for by a veritable battalion of people. Everyone adores him. No one signs up if they’re not into kids. He is proving to be happy, adaptable…interesting, even to some.

But I worry as this is the big initial push for Andy and his care, am I doing harm somehow to him?

Of course, my higher self who can get on the balcony says, “Absolutely not.” Even now his laughter comes easily with everyone who he is with, the ultimate sign to me that he is fine.

But now that the pressure of Andy’s immediate care is letting up, I have mental space again to start to stress about stuff. And first up gets to be my son.

I know I’m not a bad mom. By all other measures, I’m a fucking great mom. But if you know anyone who is a mom, or are a mom yourself, you know the weird standards that are put on us by, largely, white older Christian Republicans for whom family is defined by how it appeared in the 1950s, aka the height of oppression in the post-war age. We’re fighting back against this, but since the internet is full of trolls and people who don’t have to hide their judgment or civility, we still hear regularly about how we’re not doing motherhood right.

For the most part, I can remain immune to this pressure, but my defenses are down and instead of brushing off the bullshit, I find my inner voice that is concerned about single parenthood internalizes this judgment. If I can’t have Andy, can I still handle raising a boy in this time? I don’t know, says the voice, you certainly abdicate your motherhood to a lot of people.

Smarter, more compassionate parts of me look at it as expanding the motherhood circle, really embracing the whole “it takes a village” especially when mom is occupied with, like, keeping Papa alive. And my village is full of wildly capable, extremely loving people. So Ronan’s in good hands. Probably more qualified than me in some cases.

♥♥♥♥♥♥♥♥♥♥

I’m also wildly overwhelmed with projects. I have several full time jobs I want to apply to, I have a lot of writing I need to do for one of the consulting firms I’m in the dugout for, and I’m still trying to manage a household and a business. It’s just a lot and it feels like a lot of things on my to-do list truly can’t be put off. But when I sit down to work I just want to write about Andy, or about my experience, or just read Facebook.

Again, smarter, more compassionate parts of me are able to see that I’m battling depression, fatigue, overwhelm, and the desire to do self-care first and work second is normal. But I also have a part born out of the trauma of a country that judges a person’s worth on their work contribution and thinks that I’m just not bootstrapping enough. Why can’t I do more?

Because you can’t and that’s fine.

Ugh.

Fine.

I’m back to working out fairly regularly. Listening to my body and doing what it wants as a way to release some of the pent up anxiety. So I’m getting stronger again and it’s helping me sleep better AND I’m not punishing my body in the process in order to meet fitness goals. I’m just moving for the joy of moving…and the better sleep that comes from it.

That’s me. Less dark than before, still a little twisty. Feeling cautious about the future and trying to stay positive, but not Pollyanna about all of this.

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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.