Ideals

The girl has always been curious beyond her years. She pays attention to things. When she was perhaps six, she asked me one night, “did there used to be laws that said boys couldn’t marry boys?” When I answered in the affirmative, her immediate follow-up question was, “what was it like back then?”

This was perhaps a month after the Supreme Court’s landmark gay marriage ruling in Obergfell v. Hodges.

The girl pays attention.

So it came as no surprise when the now sixth-grader asked if she could watch last night’s Presidential Debate. At first, we answered yes. But then, as the hour drew nearer, I told her we would record it and she could watch today instead. We asked her to go to bed and read.

Part of the reason for the change was Central Standard Time. Having lived out here for nearly six and a half years, I have in some ways overcompensated for having spent my first 43 years on the east coast. When I read the debate was to begin at 8:00, I assumed Eastern Time, meaning a 7:00 start for us. Plenty early for the girl to see the first hour or so.

The other part was harder to explain at the time. But there was something in me, telling me I did not want my child to watch what was about to happen.

“You think they’re gonna talk about racism and stuff?” she asked.

“Yes, but it’s not just that,” I answered. “I just… I don’t know that this is something we want you watching right now.”

We have always tried to raise our children with open eyes to the world around them. I want them to learn about the world, about the country they call home. I want them to know the men who founded this country fell far short of the ideals they put to paper. They drove slaves. They deprived women of basic rights. They broke treaty after treaty, and nearly extinguished an entire population in the name of Manifest Destiny. They were unable to end the stain of slavery without first fighting a war that killed more than 600,000 of them. And even then, they followed that war with another century of systematic oppression, which even today has not been entirely expunged.

They fell short of their ideals, but the reason we know this is because they put those ideals down in writing. Which, for 240 years, has given us a target to strive for. When we fall short, we can try to improve. That has been the purpose of the “grand experiment” from the beginning.

I did not want my child, or any of them, to see exactly how far we have fallen from those ideals.

I knew the President would use last night as another opportunity to lie to the American people. It is literally the only tool in his verbal arsenal. He would lie about having a health care plan. He would lie about COVID-19. He would lie about Black Lives Matter. He would lie about the military, the economy, his own record, his opponent’s record.

But it was the way he lied. The bullying. The interrupting. Talking over and through both his opponent and the alleged moderator. Joe Biden spoke for too much of America when he finally said, “will you just shut up, man?”

 I stopped paying attention after about 20 minutes, feeling very justified in my decision to have my child read in her room instead of watching. My parents probably would have been delighted had I asked to watch the Reagan-Mondale debates. But I don’t want my kid to see the country like this. I don’t want her to see what level of awfulness 43% of the country happily support. An 11-year old may not recognize creeping fascism or racist dog whistles (“Stand back and stand by.”) But she recognizes a bully when she sees one.

My vote in this election was never up for grabs, and has in fact already been cast. I voted for Biden, but I’m really voting for her. Not just for the health care she or her mother could lose. But for the country she’s growing up in. The country I would like her to continue growing up in.

Learning at risk

Our local school district released its proposal for in-person learning when classes resume this fall. Families will have the choice of full-time online learning from home, or a hybrid of online and in person learning.

The hybrid plan works like this: Mondays will be taught online entirely. For the remainder of the week, students whose families choose the hybrid model will be divided into two groups. Group A will attend school on Tuesdays and Thursdays, and will attend virtually on Wednesdays and Fridays. Group B will do the inverse.

It’s an imperfect plan, but that’s largely because no perfect plan exists. We live in imperfect times. The Coronavirus pandemic in this country shows no sign of being under control. To reopen schools in any form is to expose children (and educators, and administrators, and support staff) to the increased likelihood of infection. There’s simply no argument otherwise.

We already send our children to a day camp while we work. We scarcely have a choice. The camp is being very careful, taking every precaution. Attendance is limited from previous summers. Masks are worn when indoors; social distancing is enforced when outdoors. Temperatures are taken every morning when we drop them off.

And still, the reality is, their risk of exposure and infection is increased by going to camp. Perhaps minimally, but still increased. Should they ever contract the virus, I would spend the rest of my life apologizing to them, begging them for the forgiveness I would never give myself. I do not seriously entertain the notion of quitting my job. But should any of them become sick, I will blame myself for not doing so. It would be a struggle, but we could survive on my wife’s salary alone. And in six months, or a year, or whenever, I could re-enter the market. I’ve found two jobs since we moved to this city six years ago. Both times, it took less than four months of searching. I could do it again. But I don’t.

Part of the reason, I suppose, is I want them to return to school. School is important. Important in a way that goes far beyond learning. They need the interaction. They need to be among their peers. Socialization is a crucial skill that can’t be taught at home (and certainly not by me!) It’s been only four weeks that they’ve been going to camp, and I see the difference in their demeanors. They have more to talk about at the end of the day. They are out in the world doing things. Is that enough to balance out the increase in risk? I don’t know. Since they were old enough to talk, we have told them that our most important job, any parent’s most important job, is to keep them safe. If they get sick, haven’t I failed that job?

So what brought it to this point? We basically shut down the entire country four months ago. What was gained from that? The government did nothing to prepare for the eventual reopening. It openly pressured states to reopen before they should have. It politicized the basic steps people could take to inhibit the spread of the virus. It made wearing a mask, or more appropriately *not* wearing a mask, a political statement. Meanwhile, we’ve passed 4 million total documented cases and are closing in on 150,000 deaths. Nearly 70,000 new cases are documented every day; more than a thousand new deaths. Here in Illinois, yesterday brought the highest number of new cases since June 2.

The virus is not unbeatable. In Germany, 454 people tested positive yesterday. Five people died. 280 cases and nine deaths in Italy. It’s been contained in many countries, just not here. 1,600 new cases in Illinois yesterday. 23 deaths. 68,000 cases and 1,100 deaths in the United States.

And we’re re-opening schools.

So my children will go to school. And they will be careful, and wear masks, and practice social distancing, and wash frequently. And despite all that, their risk of infection will increase. And I will never forgive myself for placing them in that situation if they become sick.

But there is a long list of people who I will also never forgive.

Quarantine Diary, Week Two

Saturday, March 21, Day 8:

A lot of laundry today. A little bike riding. A quick grocery run that will, I hope, get us through the week. The shelter in place order took effect at 5:00 pm.

I spend a lot of time wondering what the world will look like on the other side of all this. Different, obviously, but in ways I can’t imagine.

I think there’s been a complete failure of leadership the last 60 or 90 days. Carolyn told me two months ago all this was coming. The doctors she works with saw this pandemic in January. It is either a knowing lie, or unforgivable incompetence to now claim no one could have predicted this.

My guess is that as we begin to emerge from this, trends and timelines will vary wildly from state to state. States like California and Ohio have been far more proactive than Texas and Florida. There can’t be a national outcome when there isn’t a national response.

Sunday, March 22, Day 9:

It’s been 11 days since I last shaved. Josh says I can go a couple more days. Carolyn would prefer I shaved yesterday.

Between the dearth of personal grooming, the abundance of white stubble on my chin, and the ice cream-heavy diet of the last few days, I could possibly one day make a living as a department store Santa if my career goes sideways.

It snowed today. The weather is doing its part to enforce the Shelter in Place order.

***

Back to work tomorrow. So many things up in the air. Agendas that had been set two months ago do not seem particularly relevant. But there is still a job to do. I work in communications, and there is definitely important information to be communicated. Sometimes multiple times per day. I shall continue doing what’s asked of me. Every industry everywhere is touched by this, and a big part of what I do is keeping people in one particular industry on top of things.

Monday, March 23, Day 10:

The ice cream-heavy diet hasn’t been as bad as I’d imagined. I actually weighed three pounds less this morning than when this all started. Chalk that up to atrophy, rather than healthy living. Atrophy, of course, is the same diet that took me from 205 pounds to 185 during Josh and Lia’s first year of life. 12 months of not sleeping really peels the pounds away.

To my credit, I’ve kept most of that weight off since then. I tipped the scales at 187.5 this morning. I could probably drop another half pound by shaving this rat’s ass of stubble of my face, and boy would that make the wife happy.

Eventually, it will come off. But not today.

Rough day today. Carolyn had to teach a class online, which did not go well. Servers were overloaded, and additional hours were required. I had a conference call in the morning, and more editing in the afternoon. The kids suffered from want of attention. Josh, especially. Being the lone boy means feeling left out more often than his siblings. I took a couple breaks in the afternoon to play some games with him. I wish I could have done more.

I’ve left the house three times in the last two days, which is three times more than would be ideal. One of those trips was unavoidable. The others were a product of impatience and poor planning. I need to do better. I wouldn’t easily forgive myself if I brought this damned virus into our house. And now that the President is very clearly hinting that people should get back to work soon, it’s that much more important to do my part in quarantining for as long as that’s allowed.

Of course, I’ve got a wife with low white cell counts and three young kids, one with asthma. I’ll be coming off quarantine on my clock. Not the President’s.

(All of which makes the three trips in the last 48 hours even more inexcusable.)

Tuesday, March 24, Day 11:

It was quiet today. The kids spent a lot of time on their Kindles. They periodically took turns on the computer, doing school work their teachers have dedicatedly set up for them.

It was another gray, dreary day. We played a couple hands of Uno after dinner.

I haven’t heard many updates about local cases of COVID the last few days. I’m sure there are some. I’m more concerned about the national trend line. That, and the idiocy of wanting to send people back to work and school with the virus so rapidly spreading. And the blasé nature of some pundits saying that grandparents should be willing to die to keep our economy on track. It’s a completely false choice. Going back to work isn’t going to save the economy when tens of millions of more people become sick. The economy won’t be saved when our health care system collapses under stress because we couldn’t just stay the f–k home for an additional three or six weeks.

These people don’t imagine it would ever be them. It’s my kids whose grandparents they’re willing to sacrifice. Well, my kids have already lost a grandfather way too early. They get to keep the other three around for a while yet. So says me.

Wednesday, March 25, Day 12:

My mood is very cyclical when thinking about this disease. Sometimes, most of the time, I’m comfortable. We’re doing what we need to (that’s the family “we,” not a national “we.”) We’re being careful.

But sometimes, I think of Nora’s lungs, and I wonder how strong they really are. No matter how far she goes in this life, she’s still a 28-week preemie, and those lungs… She’s perfect in almost every way. But the lungs. She gets frustrated that she can’t run as fast, or bike as far as her friends, or her younger brother. She sometimes resents carrying her asthma inhaler everywhere. Even when she’s on the ice, when she’s at her absolute happiest, it’s there by rinkside, in case she needs it.

To her, it’s an inconvenience, and occasional embarrassment. To me, it’s a reminder of how she came into this world weighing barely two pounds.

***

Speaking of how Nora came into the world 12 weeks early, somehow the conversation at dinner turned to her twin brother. This happens every so often. It’s something Carolyn and I don’t want to discourage. But talking about Ben sometimes isn’t something I’m equipped for. It’s probably what has me in my particular mood tonight.

Anyway, the dinner time consensus is Nora thinks it’d be great to have someone in the house who understood what it’s like to be a fifth grader *in the Year 2020*, and Josh thinks another boy would be good for when the sisters are playing hospital or something. I can’t disagree.

Thursday, March 26, Day 13:

I’m not afraid of getting COVID-19.

I’m a little afraid of getting it now, while the hospitals are inundated. Now, while the doctors and nurses are nearing the (considerable) limits of their ability and stamina. Now, while respirators and ventilators are too few, and patients too many.

***

A co-worker had a baby just last week. I spent 78 days with Nora in NICU, I watched Ben die, and I still can’t imagine how scared I would be to have been in a hospital now, with a newborn infant. Fortunately, they’re all back home now.

***

It was just another day here. Doing my work the best that circumstances allow. The kids are doing their best to get through the days too. We’re all doing our best.

Josh asked me to sit in his room with him tonight until he fell asleep. He’s worried about something, but he can’t or won’t say what. He used to do this every night for at least a year after Carolyn’s seizure/cancer diagnosis/surgery. It wasn’t until he learned to confidently read on his own that he stopped asking and would just read himself to sleep. But tonight, he asked again.

I don’t know how much he knows about Coronavirus. Some, I’m sure. We try not to have the news on when the kids are nearby, and he’d be uninterested even if we didn’t. But he’s a smart kid. They’re all smart kids. And I’m sure he’s talked with Nora about it. And Nora definitely knows enough that it worries her, so whatever she may have shared now apparently worries him too.

***

Today would’ve been Opening Day for Major League Baseball. At least this plague has spared me the sight of Mookie Betts in a Dodgers uniform, leading me to the sight of my son as a Dodgers fan. For now, and the immediate, if not foreseeable future, the Red Sox remain the only team for whom Mookie has played a Major League Game. That’s… something, I guess.

Friday, March 27, Day 14:

Takeout pizza Friday has been replaced with homemade pizza Friday, and the trend might continue long after the quarantine is lifted. Honestly, the crust is a little singed , but tell me this doesn’t look at least a little like something you’d get out of a wood-fired brick oven in New Haven:

I’ve been better the last few days about not leaving the house. We ordered next week’s groceries online. Unfortunately, so has everyone else. The next available pickup isn’t until Tuesday, and we won’t make it that far without milk. So I did have to make a quick grocery run. But overall, we’re doing our part.

What we haven’t done well is keep the kids engaged throughout the day. I think the school district is going to start moving more toward online learning for the next several weeks, if not the remainder of the year, so we’ll have to get better prepared for that. We just received an automated call from the district earlier about distribution of online technology for families that need it. This, just a couple days after we were asked to participate in a survey about our online capabilities at home.

I’m glad they’re taking these steps. I don’t think they’d be taking it if they believed we’d all be back at school in just another couple of weeks.

So I guess what I’m saying is, buckle up friends. After two weeks of lockdown, this party’s just getting started.

Quarantine Diary

Saturday, March 14, Day 1:

I slept well last night: a change from the previous several nights.

I think it’s because the worry had lifted. Once the Governor announced schools were closing, once I spoke with management at work about working from home, once my family and I actually entered our little bunker, all the what-ifs sort of vanished, no longer keeping me awake for hours after the lights went out.

And so here we are. Last night was pretty close to a typical Friday. We watched our weekly family movie (Josh’s turn to pick; he went with Rogue One). We had pizza for dinner. I made popcorn.

Today is a little different. There’s no figure skating. No baseball lessons. No activities of any sort requiring us to shuttle kids around town. We’re working on putting together a schedule of what will eventually be the Daily Routine. The kids have been well-informed this will not be a two week vacation of Mario and TV.

But for now, it’s just Saturday. And there has been a lot of Mario and TV. And laundry. And pancakes.

 

****

We got our first confirmed local cases of COVID. Three people, all from one family. Reason to believe they contracted it abroad. Either in Florida or overseas. Either way, it’s here now.

 

Sunday, March 15, Day 2:

I was wrong about the local cases of COVID. Two people, not three. Different families. And one case has no immediate connection to anyone who’s been abroad.

What I remain correct about it that it’s here. It probably has been for a while. The second patient, in a story in the paper, detailed the last week to 10 days leading up to her symptoms, test, and diagnosis. She sits on the Park District Board. Interactions with hundreds of people. How many degrees of separation between her and me? Between her and Carolyn? Three? It’s a small town.

***

Here at the house, it was a laundry-heavy day. Some picking up. It’s still the weekend; the totality of what we’re in for hasn’t fully set in. Tomorrow’s the first real day. We’ve drafted a schedule for the kids. Some reading time, picking up time, play time, schoolwork time, etc. It’s a work in progress. Everything is a work in progress. We’ll see how it goes.

Monday, March 16, Day 3:

It wasn’t too bad.

We didn’t stick to the schedule as well as we might have, but we kept the kids busy with things other than tv. I got a reasonable amount of work done, with only a moderate amount of distraction. It helps that I have a very definite agenda for what I need to do for work these next two weeks. There are weeks when that isn’t the case.

Carolyn conducted a couple science lessons, and watched an educational program about how viruses like this Novel Coronavirus work. Unfortunately, the program had the effect of frightening Josh, so I’m not sure how many more such home lessons we’ll have.

In other news, there are now visible lines where my wrists meet my hands, marking the abrupt change in skin texture that is the result of washing my hands hundreds of times in the last week. Lotion can do only so much when it inevitably gets washed off 30 minutes after application.

 

Tuesday, March 17, Day 4:

Illinois voted today. Some of it did, anyway. Turnout understandably appears it will be down from four years ago. (Interestingly, it appears to be up in Florida.)

I voted last week. My preferred candidate will not win the nomination. In fact, she’s no longer even running, but I voted for her anyway.

It was also St. Patrick’s Day, and we had our traditional meal of Taco Tuesday.

My work has shut its doors through the end of the month. I imagine it will go well into April. So I continue working from home.

Several major upcoming events for work are also canceled/postponed. The economic fallout has barely begun, and I would be lying if I said I wasn’t worried about my long-term employment.

***

We got our bikes out in the afternoon and I rode around Washington Park with Nora and Josh.

Wednesday, March 18, Day 5:

Same shit.

Thursday, March 19, Day 6:

The first day of spring. It’s a rainy, gray mess. The back yard is a mud bog. Terrible day. TV did a lot of kid-sitting today; Carolyn and I both had conference calls with work at different times.

We had our first local COVID-19 death today. I don’t know details, but when they announced the first cases the other day, one of the patients was a 71-year old woman who’d been admitted to ICU.

I’m closer to my 71st birthday than to my 25th. Sigh.

Friday, March 20, Day 7:

One week down. Who knows how many weeks, or even months, to go.

The governor issued a “shelter in place” order today. It goes into effect Saturday at 5 pm. The kids’ school announced it would remain closed at least through April 14. No similar announcement from work, but it’s hard to imagine the office reopening any time soon.

Nora had a brief breakdown earlier. Maybe that’s too strong a word, but she came down from bed, crying. She’s worried about her grandparents. She misses school. She’s upset that her birthday might be forgotten, or at least that it’ll happen while everyone is still on quarantine. She’ll be fine. She is fine. But she’s a thinker, and sometimes when the lights go out, being alone with your thoughts is not a great place to be.

Ben Chapman and the Revenge of the End Credits

Ben Chapman was a slightly above-average Major League hitter for parts of 15 seasons. He was, for a time, teammates with Babe Ruth, and a member of the 1932 World Champion Yankees. For his career, he batted .302, with 90 home runs. His game seems to have been based more on speed: he led the American League in triples once, and stolen bases a handful of times.

I know those things because I looked them up.

Ben Chapman was a racist, who, as manager of the Phillies, mercilessly heckled Jackie Robinson during Robinson’s rookie year in 1947. He was fired in mid-1948 and never managed again. Up until 10 minutes ago, that was everything I knew about him.

Chapman was a minor character in the movie 42. His racist taunts play a role in advancing the narrative of Robinson’s struggles as he adjusted to Major League Baseball (and as it adjusted to him).  The film is entirely unsympathetic to Chapman. At the movie’s end, narrative cards tell us what eventually happened to many of the major and minor characters. Robinson won a World Series in 1955 and was inducted into Baseball’s Hall of Fame; Chapman was fired in 1948 and never managed again. The audience is made to feel that both characters received their just rewards.

I watched 42 last night with my children. They know who Jackie Robinson was from school, having learned about him (among others) during African-American History Month in February. Some of the slower parts bored them, but they still followed it. The baseball scenes appealed to them, and Nora, whose sense of right and wrong is very well developed, latched on tightly to the social justice aspects of the story. I asked her what she thought of the movie.

“That manager was a jerk,” she said. She lowered her face to conceal a small grin as she recounted the scene where Robinson’s teammate Eddie Stanky confronted Chapman. “I liked it when that other player called him a piece of shit.” Her reticence in repeating the offending word, even in quoting the movie, amused me.

“Yes,” I said, smiling. “That was a good part.”

***

Chapman of course had no way of knowing that a movie on Robinson would ever be made. No way of knowing that the only thing people might know about him 26 years after his death was that he was kind of an asshole to a legendary baseball player and American icon. In that light, it’s a little unfair to make a villain of someone unable to defend himself. But we all will die some day. We all will have obituaries written. And some of us may even be portrayed in a book or a movie about someone we know, even if we know that person only in passing. It’d be nice if more of us chose not to be the asshole of someone else’s story.

 

False Prophets

I was raised Lutheran. I went to church nearly every Sunday growing up. Sang in the Youth choir. Participated in Youth Group. It was almost without exception, a positive experience.

It’s an experience my kids do not share. We maybe attend once a month at a non-denominational Unitarian Church. Even so, I still nominally consider myself Christian. There is a great deal about the faith that appeals to me. I sometimes question the existence of Jesus Christ the Son of God, but I remain pretty sure there was a Nazarene preacher named Yeshua who spoke some awesome and revolutionary truths about how we should treat each other and the type of people we should aspire to be.

I feel extremely confident saying that guy would be appalled at the people who pretend to speak on his behalf 20 centuries later.

https://twitter.com/jerryfalwelljr/status/1080155906720104452?s=21

If anyone ever asked me why my faith had waned, or why I no longer attended a Christian church, I could scarcely do better than direct that person to this interview. Amid all the grotesqueries therein, this one in particular stood out:

A poor person never gave anyone a job. A poor person never gave anybody charity, not of any real volume. It’s just common sense to me.

Among the many memories I have from my regular church attendance growing up, a handful of Pastor D’s sermons made an impression and remain with me. One in particular, given around the time Jim Bakker and Jimmy Swaggart were having their very un-Christlike behavior become known, was a fiery denunciation of what the Bible calls false prophets.

I have no idea what ever became of Pastor D. He left our church in my 11th grade year. I have no idea how the years may have changed him, or what he thinks today of the younger Falwell.

But I know what the guy I heard preach so often would think. That guy would hold him with the same contempt he had for those other false prophets some 30 years ago. Which probably goes a long way in explaining why I do too.

One year in

One year ago today, I learned a new word. I wrote about it at the time.

 

***

December 4, 2017:

I learned a couple things today.

First, I learned a new word, which I’ll get back to in a minute.

Second, I learned it is possible to see your wife receive a diagnosis of Grade Two brain cancer and feel an overwhelming and immediate sense of relief.

The new word: Oligodendroglioma. A type of brain cancer. Like all cancers and tumors, it can be graded according to its malignancy. Grade One is benign; Grade Four is the most aggressive, and usually deadly.

Today, we got diagnosed with a Grade Two: malignant, but not aggressive. Slow-growing. Treatable. Comparatively favorable long term prognosis. We received this diagnosis perhaps an hour after receiving a different diagnosis, that of a Grade Three Astrocytoma. The sense of relief from the improved diagnosis was nearly overwhelming. The next year, the next two, three, and five years of my life look very different with a Grade Two diagnosis than they did for the brief window we had a Grade 3.

To be clear: the next two, three, and five years look incredibly difficult and challenging. We are looking at brain surgery as our starting point. Perhaps before the end of this week. Definitely before the end of next. We are looking at chemotherapy. We are looking at clinical trials, follow up appointments. Scans and different kinds of scans, and then other different kinds of scans after that. Every aspect of our lives will be impacted. The glue that binds this family, the engine that keeps us running (choose your metaphor, both are apt), is sick, and it will be some time before she is well.

***

Brief aside, regarding my personal vocabulary: Astrocytoma is a word I am already familiar with. Astrocytoma, or Glioblastoma, as it’s called when it progresses to Grade Four, killed my father-in-law not 18 months ago. Our family’s prior experience with brain cancer illuminates every reality we are currently up against with an unmistakable clarity.

***

Everything began on Saturday, late in the afternoon. My wife, complaining of a headache, mixed together birthday cakes for our two younger children, who were celebrating their sixth birthday. She put the cakes in the oven, sat down in a chair, and the next thing she remembers is being in the back of an ambulance.

My recollection is not so spotty. I was in the basement when I heard my three children yelling. Nothing new or suspicious about that. I finished loading the washer and hit start. Coming back up the steps, I ran into my son, who an hour earlier had been enjoying his birthday party, telling me something was wrong with Mom. His twin sister and their older (age 8-½) sister were at the top of the steps, yelling the same. I picked up my pace, came into the living room, and found her reclined in her chair, in full arrest. Her entire body convulsing. Foam forming at the corners of her mouth.

I know that’s a disturbing visual, and I apologize. But this is a disturbing story, and I don’t know the next chapter, let alone the ending.

It is now two days later. Two nights in the hospital for her. Two solo nights handling children’s dinner and bedtime for me. Countless examples of friends and neighbors eager to help in any way they can: Can we take the children for a night? Can we bring dinner? Anything you need, please let us know. Tonight’s dinner was provided by one friend. Tomorrow’s dinner was just moments ago delivered by our neighbor. They are all good people, and their desire to assist us is touching. But it’s hard for me to grasp things on that day-to-day plane. I don’t know what to ask for, I don’t know what we need. I feel I have to get into this process before I can begin to know what I need. I need to learn what I can let go of, what I can hand off, and what I need to step up and handle more of.

It will be that way for all of us. The next year or more of our lives stretches out before us like a vast, uncharted sea. I have spoken to my children about the need for all of us to understand that when she comes home, that does not mean life returns to normal. It will be difficult in more ways than I can imagine. But we will see our way through it, no matter where and how it ends.

My wife comes home from the hospital tonight. Her mother will bring her here. I imagine we will stay up late discussing what the next steps, the first steps, on this journey will be.  

***

Now it’s a year later. She is currently on what we hope will be her final cycle of chemotherapy. Return visits to NIH in Maryland, where she had brain surgery eight days after that was written, have generally borne good news. MRIs have shown no visible tumor tissue, which is the best possible result. But “cancer free” is not part of our lexicon. Nor is “Remission.” Those terms don’t apply to primary brain gliomas. Gliomas grow back. Always.

We are fortunate that Grade Two Oligodendroglioma grows slowly. We were told Carolyn’s tumor may have been growing for a decade. Our hope, our goal, is that medical science outpaces slow growth.

A year ago, I believed that 2018 would be remembered as “our cancer year.” And to a large extent, it will. But the battle isn’t over. We will fight this every day for the rest of our lives together.

State Fair

Yesterday, we took our annual trip to the Illinois State Fair. I wouldn’t say it’s a high point of the summer, but it’s at least noteworthy. Something the kids definitely look forward to.

State Fairs strike me as a principally midwestern phenomenon (apologies to North Carolina, which is also quite pround of its Fair). Growing up in Pennsylvania, the closest approximation seemed to be the Farm Show, held every January. The Farm Show was a lot of things, most of them genuinely enjoyable, but it wasn’t a Fair. There was also the Bloomsburg Fair every autumn. I went to college not too far from Bloomsburg, and we made the pilgrimage a couple times. But even Bloomsburg wasn’t a STATE Fair.

The idea of a State Fair seems directly proportional to a state’s agriculture industry. Iowa’s is probably the most well known, as it makes the national news every four years when would-be Presidential candidates descend to show everyone how “real” and “normal” they are as they make big displays of their willingness to eat deep fried pickles and various types of meat-on-a-stick.

The other thing about State Fairs — or Illinois’ version of one, anyway — is how frozen in time they feel. Everything feels straight out of the 1950s, or even 30s. Traveling carnival rides, rigged games, farm animals on display, and a cornucopia of different foodstuffs all but guaranteed to give indigestion.

Also, the color. Nowhere is the color more vibrantly on display than in the carnival midway area, where my kids’ growth can be measured not only by the “You must be this high to ride” signs, but by the rides they are now either brave enough to try, or disdain as “for babies.”

 

 

Unknown-1This year’s highlights included the Crazy Mouse, a sort of spinning roller coaster light years more daring than any ride they’ve attempted before, as well as annual highlights like the Farmer’s Little Helpers display, and the butter cow, which made headlines this year for the misspelling of the word “Bicentennial” that no one noticed until its unveiling on the Fair’s first day.

Perfectly imperfect. Just like the Fair itself.

On Charlottesville

A year ago tonight, Heather Heyer was alive. White nationalists with torches marched on Charlottesville, chanting “Blood and soil!” They numbered in the hundreds, and menacingly surrounded a small number of University of Virginia students who had themselves encircled the statue of Thomas Jefferson in front of the famed Rotunda.

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Perhaps 100 feet east of that statue, a bench sits under an old magnolia tree. It was not quite ten years ago that my wife and I sat on that bench, weighing the pros and cons of uprooting our lives and moving from greater Boston (Somerville) to Charlottesville, or C’ville, as we came to call it.

The pros won out that afternoon. In a matter of weeks, we (she) would receive and accept a job offer. Also within weeks, we (again, she) would become pregnant with our first child. Our first two children, as luck would have it.

Over the ensuing five and a half years, C’ville was home. The pros did not win as often as we had hoped. The job she accepted turned out not to be what was promised. My eventual employment at the University was fulfilling but ultimately short-lived. We made many acquaintances, but few genuine friends.

But our children were born there. Our older son lived his entire life there, 31 days in the University hospital. The outpouring of concern and affection in the wake of his death will always be with me. The people of Charlottesville are, with very few exceptions, good people.

I often wonder what I would have done, had we lived there a year ago. I remember the rage I felt a year ago, seeing that torch-wielding mob surrounding those students. I imagine I would have felt it even more intensely had C’ville still been our home. Still been my children’s home. I feel, in my heart, I would have been on the downtown mall that Saturday, after seeing those images. I know I would have been counseled by my parents to avoid it. Perhaps even by my wife. Or perhaps I would have gone in her stead. I don’t know. But I feel I would have gone.

Maybe I would have been blocks away from where Heather Heyer stood. Maybe I would have been right next to her. It’s all conjecture, all unknowable.

There were many reasons my wife and I moved to Charlottesville. Over time, few of those reasons panned out. But for five years, it was home. It’s where I became a father. It’s a beautiful city, and will always be an important part of my life. I hope everyone there has a peaceful weekend.

America’s game ain’t cheap

My son started tee ball last weeks. He’s pretty excited.

This will be his third sport, following past dalliances with hockey and soccer. It is already the most expensive sport we’ve signed him up for. Yes, more expensive than hockey.

The hockey league he tried was sponsored by the NHL. Everything – skates, pads, jersey, pants, gloves, helmet, stick, and gear bag – was branded with the Chicago Blackhawks logo. They were the Little Blackhawks. All that gear, plus the eight week introductory league, was $85. He took two sessions of that introductory league before deciding it wasn’t for him. $170 for his brief foray onto the ice. Not cheap, but not terrible. And we keep the gear. We could probably recoup some of our cost by taking it to Play-it-Again Sports or some other sports re-seller. More likely, we will just donate it.

Soccer was even cheaper. Cleats, shinguards, ball. Boom, done. Throw in registration fees and youth team sports don’t get much cheaper than soccer.

Which brings us to baseball. Even with recycling his soccer cleats, tee ball (and the baseball that follows it) is deceptively expensive. Our registration fees included nothing other than getting his name on a roster. Everything else, even a hat, is on us to provide. The cheapest glove available was $35. The cheapest bat — a “tee ball only” bat that apparently would burst into flame if used to strike a pitched ball — was another $25. Which actually isn’t so bad. But this is strictly entry level stuff; if/when he requires another bat in a year, the median price range appeared to be in the $70 neighborhood. Batting helmets allegedly are provided for games, or so says the coach. But he didn’t sound too sure that would actually be the case, so tack on another $17. Other items we decided against buying until we know whether he intends to play for more than a year or two. But they will add to the cost.

Baseball is America’s game. College and professional football have outpaced baseball as an industry, as a passion for fans. But baseball is still America’s game. Football never goes in a sentence with Mom and Apple Pie. Major League Baseball could take a cue from the National Hockey League. We live in an era where more and more parents are growing reluctant to let their children into football. It would take next to nothing from baseball’s profitability to step in and eliminate cost as a deterrent from getting kids to play.

The teams in my son’s league take their names from their MLB counterparts. There are Cardinals and Red Sox and Dodgers and Royals and even Expos. My son’s team is the Cubs. It’d be nice to see MLB invest itself a little more in making playing the game a more attainable goal for its youngest fans.