When life takes a dump on your chest

Mmmm. What a ladylike title, right?

It’s how I’ve been feeling lately. Because trying to raise a toddler when your co-parent has Stage IV cancer isn’t bad enough, I was fired from a job I actually liked for literally no publishable reason on Friday.

Pluses: My boss offered to be a reference and write a letter of recommendation. I now can party with Ronan more. I can be with Andy all mornings before his call. I can wear yoga pants more regularly.

Minuses: Oh, you know, just, like, a lack money and healthcare and security and meaning and purpose and structure. Just those things.

I had a mini-piphany the other day. This is when you have an epiphany that shifts your perspective just a little so you don’t end up having to travel to Italy, India, and Indonesia to find meaning.

I have been telling the religious among me to pray for peace for us. We have strength, we could use some peace and calm.

But, what if this is actually just my normal?

What if the plan for my one small life is to bring me immense challenges and force me to navigate them? What if I do this so others can learn about their own strength or so they can develop a road map for themselves? What if it teaches me how to find calm in a storm or peace in a war? What if all of this is so Ronan can see what it’s like to do good work in a world full of trials so he can do something incredible like be the best damn chairlift operator in all of Washington?

Who am I kidding, he’s totally going to go the East Coast and swear the snow is better like a weirdo.

But truly, what if this is it?

Maybe if I stop hoping for a break, I’ll be less thrown for a loop when the hits keep coming. And maybe then the moments of respite will seem sweeter.

So I’m going to try that. It means expanding my capacity for turmoil a little more and I’ll have to change some things in my physical environment and the systems I use, but we all know I’m a willing and able prototyper.

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A letter

Dear Congressional Representative,

I am so tired today, aren’t you? I’m fighting a cold and my 18 month old is sick and my husband is having a hard time with his chemo treatments. I started a new job last week and I’m managing the stress of getting the kiddo off to his grandparents or his nanny share every morning and all the different logistics and checklists for myself, my baby, and my husband are kind of overwhelming.

My son got really sick on Monday. We ended up having to go to urgent care for his first ear infection, which, because us Willhelms do everything to the extreme, turned out to be in both ears, plus an acute viral infection in his throat. No wonder he wasn’t drinking any fluids. I had to leave him at home on Tuesday, which was so hard because I both wanted to be with him and desperately wanted to work at my new job so I could have some respite from the constant onslaught of logistics and management all day long.

See my husband, he’s 47, was diagnosed with Stage IV Colon Cancer in November. It was really sudden. He had no symptoms and it’s a type of cancer that can’t be detected through the annual colonoscopies or CT scans he was getting to monitor his Crohn’s Disease. Hell, we had been saying that it was best he had felt in the 10 years we had known each other. What a kick in the ass to find out it was Stage IV cancer.

But anyway, he was home with the baby on Tuesday and I had to keep saying silent prayers and checking in to see if he was doing ok because he’s immunocompromised. And a cold, which was already tricky because of his Crohn’s, could be devastating with the chemo.

But we had no other options, right? He couldn’t go to his nanny share. We didn’t want to get her kid sick, too. Grandparents, while they are amazing, we try to use them judiciously and a sick baby for a whole day is a lot to deal with. So he stayed home, fatigued from the chemo with a fragile immune system that I hope holds up to this bacterial and viral onslaught.

So in addition to the sickness of the baby, we’ve been managing the cancer: the treatment, the grief, the upset to work. Thank God he has an employer who actually cares about him and is making our lives less hellish by actually making it easy for him to work. He’s the Master Electrician at the Seattle Repertory Theatre, a big regional non-profit theatre that he’s worked at for 20 years. He LOVES his job. Like in a way that tells you someone has been paired up with their true calling.

But I write today not about his healthcare (thank God for his union’s good coverage) or the lack of affordable daycare, or the difficulty I had finding work with two Bachelor degrees and a Master’s degree and the crushing amount of student loan debt I got following the advice to “get more education” so I could get a good job. Today I want to write to you about guns.

You totally knew that, though. The little form online made me tell you that. So, spoiler alert, I’m feeling mad about the recent shooting in Parkland, FL.

I grew up in South Florida and moved to Seattle in 2008 after college. My sister in law is a teacher, my brother’s best friend and his wife are teachers. I don’t fear for their safety every day, because statistics means that it’s unlikely that the shooting will happen at their schools. But, what about when statistics catches up with me? What happens when my son, who isn’t in school yet but will be eventually, because we believe in the public school system, what happens when his school is the site of something like this? How on earth could I live with myself if I didn’t do my due diligence to make my fear and anger known to those who actually have the power to do something?

But then I pause and think, “What the hell is the point? The Dems did their one sit in and nothing happened.”

And now you have so much you are fighting for: healthcare, taxes, Dreamers, general nonsense from fellow lawmakers who seem to have forgotten they are governing people and not faceless voting blocks or donors. How can I, in good conscience, add to your list of struggles?

But really, how can I not? My son’s life is on the line.

My son’s life is on the line.

Do you have kids? I think you do. So, you must know this fear. The fear of motherhood where you let a piece of your heart walk around outside and the strings of worry and love and strength stretch from you to them in a way you didn’t know about until you had your child. I didn’t know the vulnerability I would feel until I held my son in my hands (he was 5 weeks early so he was little) and realized just how vulnerable I would be for the rest of my life. I could be made to do anything for him.

My husband’s mortality is something we are dealing with every day. We don’t know if he will kick the cancer and survive or die a young death, but his mortality that is literally in question right now does not feel as fragile as that of my son’s and his future classmates.

Please, for the love of God, do something.

I listen to NPR and watch CNN and read the New York Times and listen to Pod Save America like a good liberal does. I work very hard to break down internal bias and fight for equity and help my husband and those I can affect learn more about sexism and racism and ableism and fatphobia, but you have got to help me here. I need to take something off my list of things to worry about and fight for and my son’s safety in his school really needs to be one of them. Please.

So, what do you need from me? I’m joining a local mom’s group to be an activist for change in firearm legislation. I support local government and vote in every election. I donate to campaigns when I can and to charities and the odd GoFundMe for people who can’t afford medical care or need to send their kiddo to a once-in-a-lifetime ballet camp. What else can I do to make our country safer and better and less hard to live in?

Thank you for your guidance. I promise I will take the information you give me and be a constituent you will be proud of. Just don’t send me something like “donate to the blah blah blah.” I can’t do that anymore.

Thank you,

Verhanika Willhelm

I am an emotional shamwow

I’m a little brain fried today. We’ve had a few days of battling some illnesses and my body and brain are tired from logistics of a slightly under the weather baby, husband, and self. But, I’ve been getting a lot of private messages and texts asking about how am.

And we all know I love to talk about myself, so here’s an update.

Things are…ok. Stable-ish.

Andy is coming to the end of the second round of chemo. We’ve found a rhythm. Ronan and I are back in the swing of coworking and grandparent daycare and hanging out together.

I no longer have to lay down for all of Ronan’s nap time to feel human again. I actually got everything lined up for my business taxes, which is a pretty sizable undertaking.

The fog of grief and depression are lifting and things feel…normal. Breakfast, activities, lunch, nap time, errands, dinner, bed. The rhythm has emerged again.

But I still get slammed regularly by a reminder of the non-normality of it all. Andy has a pump on and can’t turn easily in his sleep. Ronan is being a baby and kicks Andy in the chest and Andy’s immobilized with pain because Ronan, of course, found his chest port. A list of everything we need for chemo day for ourselves and Ronan sits on the kitchen table. The cards and presents from loved ones sit in our living room as a reminder that we are loved and that love is coming in strong, hard waves because of something as devastating as Stage IV cancer. Someone posts in a Facebook caregiving group about how their loved one had a symptom like Andy and it turned out to be even worse cancer than they thought. Someone has entered hospice care. Someone has died.

Those ones are particularly hard to read and I usually have to walk away from that part of Facebook for a few days.

But never Facebook as a whole because sometimes reading about other people’s stuff is the only way I feel connected.

Also, y’all are good fodder for blogs for Willhelm Consulting. I can take a societal temperature via social media.

I’m still sometimes overwhelmed with the concern about how to pay our bills. Or more accurately, how to buy groceries, gas, diapers, and the crazy non-essentials like a take out meal when our baby has fallen asleep in the back of the car and we want to keep driving so he gets a decent nap. I’ve been told over and over that help will come and people won’t let us go without help. And yet, there is no structure or rules around how and when to ask for money in these situations. And, call me crazy, but out of all the things I’m managing, finding the courage to ASK for money is not something I’m really going to work up the energy for. The human brain can only handle so many open loops and some are bigger than others. My brain hit its capacity 58 enormous loops ago.

At some point I’ll update the GoFundMe with a new amount if Andy is out of work during the HIPEC procedure (God willing that happens. I’m so superstitious about it.), but for now I’ll just check into Mint every day and be very, very judicious about how and where I buy groceries.

You know, the fun stuff that a family in existential crisis should be dealing with.

And even if I wanted a full time job (I don’t) it’s not like the offers are rolling in. That’s not true, exactly. I did get an offer for a slightly less than part time job that comes with childcare for a company I care deeply about. It’s not consulting work (yet), but I can do my back end stuff if things are quiet, so that’s a positive development I need to keep in mind. The start date is fuzzy, which is why I’m not treating it like a done deal yet. A lot can change.

I’m using some consulting dollars to hire a resume coach to help, but I’m sort of mad that I have to do that.

I’m just mad a lot right now.

I’m mad that people can’t keep their shit together or get help so their crazy doesn’t spill out sideways.

I’m mad that the richest country in the world has no safety net for those of us managing serious illness or caretaking those who do.

I’m mad that a group of very wealthy people thought donning black designer dresses would be helpful to those of us who can’t pay for health insurance AND still deal with discrimination and harassment. Or maybe they weren’t thinking about us. Thoughts for another time.

I’m mad that I’m highly educated and smart, sensitive, compassionate, and funny as a banana peel, but I can’t find a way to make a living at 31 that can sustain my family. It’s just not what I had pictured at this age.

I’m mad, so so so mad that our lawmakers don’t just make single payer healthcare a thing. It’s fucking inevitable, let’s just do it now.

And I’m still mad at all the usual stuff like our President and mansplaining and fatphobia and the diet industry playing on new mom’s tenderness to make a buck and a lack of affordable, cute shoes in size 12.

So, yeah, the initial fog is gone and I still feel wildly helpless. Andy still has cancer, we are still stuck in this shitty shitty situation with not a lot of options or ideas beside the course we’ve been set on.

I wake up every day scared that I’m about to lose him. It sucks to go to bed on New Year’s Eve and wonder if this is the last time you will see the calendar change over together.

Will Ronan grow up without a father? Will I have to raise a teenager on my own? Were we poised to raise a well-adjusted, happy, healthy, adaptable boy who could actually be a part of the change in our culture we desperately need, but now that will all fall apart because he won’t have his papa?

Fuck.

It’s probably because I’m tired and listening to music that is making me sad, but I still can’t quite see the light. I still can’t plan more than 4 days in advance. Some days I can’t think about more than what Andy and Ronan need in the moment and completely forget my own needs until I’m dehydrated or hungry or have a bladder that’s about to burst. My body aches all the time from a lack of good movement. It just all sucks.

The shining light in all of this is that Ronan is still a smiley, happy baby and Andy seems to be managing everything very, very well. These Willhelm boys are mighty resilient and I hope that this resilience is working its way through the mucousal membranes of Andy’s body to kick the shit out of cancer.

I am their emotional shamwow and after all of this I’ll need someone to wring me out.

 

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.

Meh

So after my last post I got a lot of messages and texts checking in. My post was very representative of the place I was (am) in and I remain committed to trying to keep this process more transparent for the sake of global education.

Also, I like to whine to a lot of people at once.

As the weekend has passed and I’ve watched Andy just get stronger and stronger each day, the acute sense of anxiety has passed. I’m still so, so deep in planning. There are so many plates I’m spinning and I’m just tired all the time. When people are taking care of Ronan for me, I find I have little energy for more than just scrolling Facebook. I’m not ashamed to say I rely heavily on long drives with the kiddo in the car seat so I can get a break from the pressure of the house, which has so many things that need to be addressed and is in a new state of upheaval.

Our bathroom is really hard for me to walk into.

We had to remove a bunch of things from shelves because toddler. But now we have new shelves that house stoma supplies and are at a good height for emptying a stoma bag. The wedge pillow for Andy lives on the couch and the leftover dishes from delivered dinners linger.

I’m reminded everywhere of the state of deep transition we are in.

I’m trying to do a lot right now.

I’m still trying to secure clients, apply to jobs, write regularly for our family, communicate with everyone, update calendars, track all the pieces, and still do some self-care. I get angry and sad when I think about how much more of this we have ahead of ourselves and how I desperately need a self-care routine to solidify and actually work.

I added exercise back into the mix. We went to the YMCA yesterday and I did a really straightforward 30 minutes on the elliptical. Nothing fancy, just pushed myself cardiovascularly so I can start to get my endurance back. I think we’ll go tomorrow morning so I can lift some weights. My arms are still like steel cords thanks to baby bench presses, but I can feel my back and core and pelvic floor slackening as even long walks have become difficult to work in.

I’m inundated with the sheer number of people who are constantly asking me questions. Some of them are good like, “Can I include olives in the meal I’m delivering next week?” Good question. (The answer is yes.)

But  have like 3 too many people asking for personalized updates that I just don’t have the bandwidth for right now. As I told Andy, a surprising number of people feel entitled to these sorts of updates. I appreciate the notes of encouragement, the cards in the mail, the texts that say “I’m thinking of you,” but I just can’t tell this story one more time to one more person when I have several outlets to collect this information.

Let’s face it, I’m tired.

I’m anxious about my ability to keep up with everything if I should eventually be a single parent. I’m doing research and asking questions about how to set us up for that (“us” includes Andy who is rightfully worried about it). Some people have told me not to think like that. SOME PEOPLE.

It relieves me to know that if I need house projects done that I have friends who have already committed to it. It relieves me to know that Andy is writing a house calendar for me of all the things he does around the house to keep it functional so I can follow it if he’s not around to direct that work. It relives me to know who exactly has my back right now, even if it all changes.

It abates my anxiety to do this ultimate Willhelm Planning. This whole supporting a family through the hard times is a contact sport. This is why we asked those present at our wedding to take a vow themselves to support us in times like this. Though I had always envisioned our marriage being tested because of boredom or something, not through an illness this serious.

His mortality scares me. Andy was always invincible to me. I knew that someday I would live without him, but I didn’t expect to have to reckon with that for another 20 years at least. We know so little at this point about what we can expect with regard to that, but the idea of being a widow in my 30s, losing My Person when we are just getting going…it’s unfair that we have to do this.

And yet, I think about moms who have to do this when they are sick themselves with kids and no family. Or people who go through this with literally no one. We are so lucky to be as supported and resourced as we are.

And yet, I don’t care. I want the guarantee that I (and Ronan) have more time with him.

Failing Baby Calculus?

I met with my doula today for a book return and quick check in.

Kim came into our lives quickly and fortuitously after we learned that my pregnancy had gone from low to high risk. I was going to be induced early due to gestational hypertension and we knew we would want someone to help us navigate the new world of medical interventions and all the new decisions we would have to make.

We hired her mid-June, went on a babymoon, and returned to an immediate hospitalization and subsequent delivery. It was almost divine in the timing. Initially we weren’t going to hire a doula, but with all the new problems we were encountering, having someone act as a sounding board and medical advocate became vitally important to us.

Kim asks incredible questions and has a whole demeanor that allows for immediate, open conversation. 5 minutes into our conversation I dove deeply into the world of my new paradigm as a parent and explained to her the difficulty of managing the new level of fatigue.

Fatigue isn’t just coming from the obvious source of a lack of sleep. What we don’t really talk about is the fact that our brain is rewiring as parents. Kim constantly reminded me of this in the early days with Ronan and it’s a piece of information I pass on to other new moms. In my work in organizational change management, brain rewiring, both on the personal and organizational level, is the centerpiece of what I am trying to do. In order to successfully rewire brains there needs to be a constant source of energy (glucose), a regular cycle of stress (the change we’re making), and rest.

In parenting, there are several barriers to quick rewiring. First, there is the obvious lack of sleep and downtime to facilitate rest. I type this as my son is napping, but if I weren’t I’d likely be doing dishes, laundry, responding to emails, or planning any of the 10,000 things that go into running a household and business. Even this is not rest. Rest involves a lack of stimulus like sleeping or meditating. Even watching TV or reading, activities commonly associated with relaxing, involve external stimulus that keeps our brains from truly resting.

When we rewire the human brain we need LOTS of rest. Children are the most concrete example of brain rewiring. Part of the reason why they sleep so much is because of all the new neural connections being built and reinforced through reviewing memories.

Though we new parents are doing some serious rewiring, the main source of fatigue comes from what I call Baby Calculus. This is the constant flow of tiny decisions parents have to make every day. There is well-documented evidence of decision fatigue, which is the feeling of exhaustion we get from making many small decisions during the day. Decisions in non-parental life can start first thing in the morning with what to wear. President Obama famously reduces his chance for decision fatigue by only wearing blue or gray suits. As the day goes on, we draw on more and more glucose stores in our brain as we decide how to respond to texts or emails, whether or not to go to the gym, what to have for lunch, to get water now or after the meeting, how to order our coffee today, etc.

For parents, not only do we make these decisions for ourselves, but we also make them for our tiny human. My most vivid example was just after Andy had gone back to work and I was trying to get Ronan down for a nap. We had just gotten a swing from a friend and we were heavily relying on it to soothe him during the day. But we discovered that sometimes if we left the swing on after he had fallen asleep, the movement would actually wake him up. So we had taken to turning it off after 10 minutes. But then in the last day, the lack of movement was causing him to wake up. So you can see the dilemma. Do I turn off the swing or leave it on? My baby needs a nap, but there’s a 50/50 chance that whatever I do will wake him up and could have to start the process of soothing him to sleep all over again.

This is just one of many, many decisions that get made in the course of caring for a newborn. Do I go on a walk while he’s awake or asleep? Should I put him down for a nap now or later? In 3 minutes? 5 minutes? Will this catnap affect his night sleep? Should I let him try and soothe himself back to sleep or go in and offer a bottle or paci? Was that a cry that needs immediate attention or his just making noise in his sleep like babies do?

Add to that all the decisions I have to make for myself during the day and no wonder new parents rely on food that’s easy to make and skip the gym.

Ronan is 3 1/2 months old now and just starting to show some regularity in his routine. This is akin to finding a way to automate email responses or meal planning. As his routine and needs become more regular and recognizable, the number of decisions I have to make in a day will start to decrease and hopefully give me some brain space back for eating a salad and returning to the consulting work I love so much.

Though it’s more likely that, because he’s a human, he’ll start to shift the minute I find some regularity. It’s ok, though, because my brain is rewiring, too, and starting to get better and figuring out what my tiny human needs.