Navigating by Stars

When Thing1 was diagnosed with ulcerative colitis six years ago, his doctor told us, “This is a permanent diagnosis.”

We thought we understood what that meant, but even after a year of unsuccessful treatment and the discovery that he would have to have surgery — not to cure but to manage his illness – we all had trouble wrapping our heads around the idea the concept of what a chronic illness really meant. Four years later, then one has changed his diet, his lifestyle. He’s learned to make his own appointments and monitor his own prescriptions, We think we understand what chronic means for him, but I don’t think I ever really got it until last Saturday.

For six days before, my Menieres had been remarkably inactive. I was still taking daily medication, still told myself that most of the “cure“ was due to the multiple injections in my ear. But for the last five or six days, I had so little vertigo that, the last Tuesday in February, I drove for the first time since just after Thanksgiving. I drove again on Wednesday , and then on Thursday. This was it. I was cured. I could plan for the next year of school at a district that requires a two hour daily commute. We can think about a vacation with a lot of walking.

And then a few days ago it happened, and I started to understand what Thing1 figured out the minute he learned that his UC wasn’t getting better and that he wouldn’t be going to college next week, that he would be dealing with it for a long time.

Saturday, I was watching the clouds roll in for another storm, feeling my ears pop and crack with the change in barometric pressure. I’d read other people with Menieres say the same thing and knew an “attack” was building. As the Big Guy and I made plans to go to breakfast while Thing2 was at his weekend job, I reluctantly handed him the keys, not knowing when I’ll be able to take them back again.

There’s very little good in what’s been happening, as far as I’m concerned, but the few only bright spots have illuminated the my way forward. That morning, as the world began to spin and rock again, I tried to focus on my memories of Thing1’s stalwart examples of acceptance and determination for the past six years. Those memories and the reminder that chronic often means permanent suddenly helped me truly understand my oldest son who, not for the first time, has often been my Northstar in learning how to navigate life challenges.

Tumbled

I’m starting to get used to the vertigo now. It’s been going on for all day for the last month, and it’s hard to remember a time when the world hasn’t seemed like I’m watching it from inside a dryer.

Chronic illness is nothing new around our house, and Thing1 set a really high bar for accepting fate with graceful determination when he got his ulcerative colitis diagnosis a few years ago. I watched his experience, and, I know that, no matter how you handle it, a chronic illness means chronic, not curable.

Last Tuesday I had an injection of steroid into my inner ear that hopefully well control the symptoms for a few months at a time, putting the disease into remission. Forty-eight hours later, there were breaks in the tumbling until I torpedoed my success with too much salt which led to a hangover on Thursday. When the hangover began to recede, my first sensation was exhaustion. After a 20 minute nap, however, I felt like a towel that had been pulled out of the dryer and hung on the line, fluttering with my second or third wind.

The Hardest Best Day

Kissing Thing1 goodbye two years and one pandemic ago as we dropped him off on the corner closest to his dorm was tough but good. He was doing what kids are supposed to do. He was trimming away the apron strings.

But then, yesterday, he shredded them.

He had been back for two weeks after his classes ended and then packed up and drove back to school to an apartment he’s rented for the summer. Without any prompting from his parents who would really love to spend more time with him, he’s found work and a place to live and started building an adult life.

He submitted to a long maternal hug and some tearful kisses, promised not to drive too fast and text when he got there safe (which he forgot to do, of course). It’s what he’s supposed to be doing, and, even thought in some ways it’s the hardest day of being his mom, having the proof that he’s standing on his own two feet and happy made it the one of the best.

 

Some Things Stay the Same

Not belonging to any religion — organized or not- our nuclear unit reconfigures most holidays to fit our wants and needs. The fourth Thursday in November is no exception, especially this year.

Like many Americans, the Big Guy, Thing 2, and I have been recreating, working, and schooling from home since March. Thing 1, needing a break from being parented, decided to run away from home with one of his cousins and quarantine in an apartment Connecticut where they did their classes online all fall.

Our autumn of isolation followed a summer devoid of our usual family reunions in Michigan or even a day-trip to see siblings in nearby Connecticut. My septuagenarian parents and the Big Guy’s sister have also been staying home to avoid becoming disease vectors, so when Thing1 and his cousin announced they would join us for Thanksgiving, we knew what this holiday would be about this year — and probably for the next twenty years.

Twenty-year-old Thing1 and my twenty-one-year-old niece (the pig-tailed tyke featured in my first and only book, A is for All-Nighter) drove up Wednesday afternoon. Thing1 and his brother had put in their request list of favorite side dishes. We had all agreed to keep everything but the food casual, and I had most of the meal prepped and ready to go into crockpots by the time they arrived.

The crowd at the Thanksgiving-eve dinner table was half the usual size, and the kids took advantage of a dearth of parents and complete absence of grandparents to indulge their inner eighth graders (much easier for Thing2 who actually is an eighth grader). By the time Thing1 went to the kitchen island for thirds, Thing2, who had been saving up his best fart jokes for an appreciative audience for nine months, had our tiny crowd roaring.

I played Exploding Kittens with the kids after dinner for a few hands before turning in. Thing1 and my niece, now used to studying until dawn, played cards with Thing1 until the wee hours of Thanksgiving morning. Their shrieks of laughter occasionally penetrated our bedroom door, and as we quietly laughed into the darkness, the Big Guy and I tried to recall experiencing a better holiday.

Some things were the same. My niece and I still managed to burn the bottoms of the crescent rolls (I felt like I was literally passing her a torch of some sort). Thing1 still insisted he wanted me to make a quart of cranberry relish. Thing2 assured us he’d be taller than Thing1 by Christmas. And, even though it was a much smaller gathering, the weekend was still about family.

We Zoomed with parents and siblings who had to stay in their states, missing the warmth of a large family gathering, but the fact that any of us could gather at all made this weekend special. I know American Thanksgiving (along with much of our history) is fraught with controversy, but, for our family, any event marked by four days in a row of gathering and giggling with our kids, especially over burnt crescent roll bottoms, is a holiday worth celebrating and being thankful for.

Common Creativity

When Thing1 was still a pea-picker, he hunched over his Matchbox cars for hours, watching their wheels and gears as he drove them around carpets and vitas he created and telling them their stories. I wish I had written them down because sometimes I think he needs proof as to just how creative he is. I think a lot of people do.

Thing1 is about to turn twenty. He knows how to fix cars and program computers. Anyone who watched him studying the movements of cars as a toddler would say it pretty accurately predicted his mechanical aptitude. 

His love of discovering how things work, however, often translates him putting high value on common sense and things that can be proven. When I tell him of the spaceships he conceived and drew, of the stories he told, he answers, “I’m just not all that creative anymore, Mom.”

Yesterday proved him wrong, and this time I got the photos to prove it. 

When Thing1’s college closed, his first action, over our strong objections, was to go job hunting. He received two offers as soon as the state closed down both businesses, but his employment history from the previous year earned him the ability to collect benefits during the pandemic (he wasn’t eligible for the stimulus because he’s too much of an adult and too much of a dependent to fall into any category the government considers visible).  He’s saving some of that money but, still a teenager for another two months, money can burn a hole in his pocket. 

Thursday he announced he was buying a hammock to use at school when it reopens. Then he announced he’d like to test drive at home. He asked the Big Guy and then me if we could think of any appropriately socially distant pairs of trees from which to hang it and, despite being surrounded by trees, we just scratched our heads.

Friday, Thing1 and Thing2 traced our normal route around the house, making incursions in to the forest when this or that pair of trees sparked their interest.  They showed us a few ideas, but the Big Guy and I just couldn’t see the right trees for the forest.

Saturday, Thing1 disappeared again and then took his machete and power saw to the woods behind the house. We heard some hacking and then a familiar buzz. Thing1 came back to assure us that the tree he’d taken down had been punky and about to fall anyway and then to invite us to the clearing he’d made. The Big Guy and I started our usual afternoon route and went to where the boys were waiting, Thing2 dancing from foot to foot to show us Thing1’s work.  

The boys had found a perfect opening into the forest and created a more defined path to a pair of trees that, somehow, the Big Guy and I had missed the day before. Thing1 had felled one tree and cleared some rosy bush between the two that would support his hammock. Then he indicated the tree-filled slope leading down to the river that will be the view for anyone sitting in the hammock.  

Thing1 had pulled a paradise from the mass of trees and rosy bush. When the hammock arrives, he’ll assemble it and give credit for the completed project to his common sense. I’d like to think that it was actually good old fashioned common creativity that helped him identify the perfect spot to meditate on the question.

Walking to Paradise

Fathers and Sons

It’s interesting watching fathers and sons connect. It happens in the very beginning, but it seems as if, during those early teen years, a chasm sometimes appears. 

When Thing1 was eight or nine, he and the Big Guy bonded as father taught son and then sons the fine art of burping on command and then advanced topics like the alphabet.  Thing1 got into computers a few years later and entered his own little world — a world he’s making his own now. The Big Guy isn’t anti-computer, but, for him, they’re tools. He doesn’t love to get under the hoods.

While Thing1 was focused on computer camp and making mods on programs, the Big Guy, an engineer at heart, focused on his interests. He still supported Thing1 through school and healthcare troubles every step of the way, but they didn’t commune over common interests until Thing1 got interested in driving. 

Thing1, always interested in how things work, got into cars in a big way. He test drove as many cars as dealers would let him. He researched the workings under the hood. He even started a car blog for a very short time. He helped the Big Guy with a few jobs on his ancient Mercedes. Then, as he prepared to take custody of the keys to our 20 year old Volvo, he and the Big Guy had the ultimate bonding experience as they replaced the radiator together, the Big Guy teaching Thing1 new vocabulary every step of the way.

Thing1 finished his online classes last week and, with no way to work for a while, decided to work on the car that he bought last year. He turned on the hard rock station and took his car apart, demonstrating his command of the colorful vocabulary he’d learned in Home Mechanics 101 a few years earlier. And, every so often he’d call the Big Guy over for a bit of advice but also a bit of bonding over their common ground.

By the second afternoon, his car was mostly back together, and the two of them were sharing car repair war stories. Maybe the sun was in my eyes as I was watching them, and, definitely, the love was always there, but watching the ‘like’ grow was something special too.

I Wonder What Would Happen

The great thing about having raised teenagers is that, when your perpetually adolescent cat puts his front paws up on your plant shelf and starts sniffing the various items that are ‘in his spot’, you know exactly what he’s thinking.

There’s a plum tree right outside my window, and the late spring has produced an explosion of blossoms (and hopefully plums) along with a squad of visiting chickadees. A chickadee chirp woke Jim up. He drew himself up into pounce position, turning his head this way and that as the chickadee hopped from branch to branch. Every few minutes he tried the cat equivalent of bunting — pretending to jump at his prey but not really doing anything.

Then the chickadee made a truly bold move, moving to a lower branch with a particularly lovely lunch of blossoms, and Jim had to make a move. I though he might forget that a window lay between them as he launched his front paws on to the plant shelf.

Instead he paused.

I let him sniff for a few minutes and could almost see the thought bubble above his head asking the classic question,

“I wonder what would happen if….”

In this case, ‘if’ was a temporarily forgotten chickadee as Jim tried simultaneously to move a hind leg onto the shelf so he could what would happen if he pushed the squash plant in front off the shelf. But, having watched Thing1 and Thing2 ask (and test) this question at various times about anything that could be climbed, blended, eaten, or flushed, I know when to let the experiment play out and when science is about to run amok.

I clapped my hands once . Jim’s hind foot returned to the poof and his gaze to the chickadee. The bird heard my clap, fluttered across the yard, and, for the greater good, scientific investigation was stymied.

Organically Grown

Somedays the wind is howling around the mountains. Other days, the sun is pointing out every new bud in the forest. Even when it’s grey and the back section of our trail is more pond than path, though, at four o’ clock, at least one kid and one adult will ask if we’re all ready to walk. Our walks have attained the ritual sacredness of communion, and, even though they are peppered with swear words when the boys argue about whose turn it is to chase the frisbee into the increasingly green rosy-bush, there is serious communing going on.

The walk around the house is about a tenth of a mile. Thing1 has a goal of getting his parents to do 30 laps walking and then running. I’m treating it as physical therapy for my ankle and, on days when my lungs allow it, have managed 10 laps with a few passes through the garden to talk to the peas and carrots. The Big Guy, waiting for a knee replacement, is less focused on the number of laps than on just walking with the boys. 

The kids will do two laps for each of ours, deliberately tossing the frisbee into the woods or at each other’s heads. Thing1 and the Big Guy will talk car repairs. Thing2 will talk music and life.

We don’t see each other for most of the rest of the day. Thing1 is finishing up classes from college online until late at night. Thing2 has class in the morning and then has creative projects. I write and study, and the Big Guy reads. There’s an implicit understanding that, while we are locking down, we need to have our physical and mental separate corners.

Vermont’s governor is slowly relaxing restrictions that have helped keep our infection rate down, but, with high-risk people in the home, our family won’t relax the current routine until we see evidence of a prolonged absence of a second or third wave of infections. As the rest of the state returns to normal, I’m grateful for these organically grown rituals that keep us close but not constricted, knowing they’re about to become even more important.

Pole Beans

The boys have been playing catch and frisbee on our walks around the house in the afternoons. Lately when Thing2 reaches for a deliberately off-trajectory frisbee, it seems as if his feet barely have to leave the ground for him to grab it out of the sky. The boys adjusted to living apart when Thing1 left for school and then adjusted again when he came back for the quarantine, but, as Thing2 grows faster and taller than a Kentucky Wonder pole bean vine, there seems to be an another adjustment taking place.

Thing1 specifically asked for Thing2 to be born, badgering us for a baby brother for almost two years. When we granted the wish (don’t ask me what we would’ve done if it had been a sister), Thing1 enthusiastically stepped into the role of guardian/teacher/benevolent dictator. He helped coach Thing2’s Little League team. He alternately shushed and comforted him through colicky rides in the back seat.

Thing2 accepted the paradigm and fell into his role of hero worshiper without question or deviation—even when it bugged the crap out of his brother. It’s a tossup as to whether a baby brother or an actor dog is more dogged in their loyalty. He followed his brother from room to room, and even from hobby to hobby. If Thing1 was good at a sport, Thing2 had to give it a go. When his older brother built a computer, he had to build one too.

And then Thing1 left. Thing2 had to find a new hero.

Our youngest has used the vacuum to bond with the Big Guy over a shared love of music and cooking. He has learned how to tech-support himself on computer issues. He has nurtured talents he discovered on his own and become his own hero, and when Thing1 returned home from school early, Thing2 very much wanted to spend time with him. There were no repeats, however, of a little kid banging on his older brother’s door, demanding to be included.

In the mornings, they each go to their corners to work on their academics. We eat dinner in the den together, but after about 20 minutes, the boys go to their separate activities. Thing1 tries to stay in touch with his new college friends as much as possible, and Thing2 will geek out on the computer or come hang out with me.

The one time of day come they really come together if over the daily games of catch. Thing1 is still slightly bigger and much stronger, but Thing2 is now a teammate, not an acolyte. There’s less coaching and more rough-housing, but, despite the extra bumps and bruises, the gaps between my two pole beans are getting narrower.

Don’t Go There

Still on the Group W Bench together

It started with a writing prompt a few days ago. Write a scene with no more than four characters that happens in one room. It was a good assignment, but at first it took me to some very dark places before I remember I was in control of this story. I don’t have to go there.

I’ve tried to treat the last month of Sparkling (and, at our house, often smudged) Solitude as a gift of time, but, as many people are finding, worrying about loved ones, finances, and the world of suffering happening beyond our driveway more than dulls the sparkle. As I wrote, I realized that, while my own respiratory issues have kept me off the frontlines but not terribly fearful, Thing1’s nearly fatal history with a chronic illness that makes him particularly vulnerable has caused more anxiety than I like to admit.

My prompt response grew into a story about a family cursed with endless time and a dark choice that might save their firstborn. The scene grew out the worst night of Thing1’s illness, but, in the story, the husband and wife debating their children’s fate begin to fall apart, and I couldn’t figure out how to put them back together. I had written myself into a corner, but, as I took a break to finish cleaning the pantry, I remembered that during that seemingly endless night, the Big Guy and I had not fallen apart.

We had pulled together. 

We may have squabbled briefly about how fast the ambulance would arrive in a blizzard or if the emergency room would do anything we weren’t already doing or if we could even get there. We had nothing but bad options as our firstborn faded on the couch. In the end we did the only thing we could do. Pulling ourselves together as a team, we decided everything and every phone number until there was nothing else to try and Thing1 started to improve. 

That night wasn’t a gift. Thing1’s illness hasn’t been a blessing in disguise. Those challenges were crucibles so hot we sometimes felt our resolve begin to melt, but when that heat abated, hope solidified around our family, forging an infinitely stronger bond. 

So now I’m back to my made-up husband and wife, still at a terrible crossroads with endless time and a horrible illness and choice in front of them. There is a temptation — for the sake of art – to finish tearing them apart. There is the option to treat the endless time and choice as a curse. 

But I don’t want to go there.

Self Schooling

My favorite picture of the Big Guy and Thing1 doesn’t show their faces. To the casual observer, it’s a picture of them replacing the radiator on our 20 year old Volvo wagon. for me, it’s the moment when our oldest kid learned that sometimes you get the best education when you roll your sleeves up and learn how to figure things out. Yesterday Thing2 got started on that same path.

Time and weekends are almost meaningless, these days. Thing2 has a few assignments every day, but, without the interactive component (and friends) offered by the classroom, our social butterfly has greeted homeschooling with as much enthusiasm as cleaning his room. Yeah, that room.

Friday, however, his iPad which is still my iPad, served up an ad for MasterClass, an online series of courses hosted by famous writers, lifestyle gurus, and artists. T2 watched a video with Carlos Santana and then a couple with a super chefs before rushing to my office. he regained his composure a few steps inside the door and casually begin the process of trying to talk me into buying the discounted two for one subscription.

I’ve seen their ads before and always been curious about the classes but leery of the price. Seeing it half price, however, and seeing T2 getting excited about directing his own homeschooling a bit, I cracked open my wallet.

Last night before bed I walked in on my multitasker reading his English assignment and keeping an eye on the video game, all while watching Gordon Ramsay teach him how to make the perfect soufflé . I put the kibosh on any more video games for the night and figured he’d go right to bed.

we slept in a bit because it was Saturday, but the sun was out and the boys have chores to do outside. I went to rouse my would be guitar playing chef, curled up under his blankets, buried in the kind of oblivion one only experiencesafter staying up way too late. I knocked on the door jam asked, “Do you still want to make eggs for Daddy?” I wasn’t sure if he would even remember the aspiration had mentioned the night before.

“Mmmph,” was the only sound he could muster from under the covers.

“You two have got a lot of work to do in the garden today,“ I said as I walked into the kitchen. I went to the fridge but as soon as I closed the door and turned around to go be the snooze button, there was Thing2, Wondering if dad would actually like him to make scrambled eggs.

Five minutes later he had his answer as the two of them were hovering over the stove, discussing the finer points of making eggs and soufflés and homemade bagels. Thing2 did most of the cooking with just a few pointers. The Big Guy made the toast and coffee. I did a little heavy lifting and got a picture of Thing2 discovering that there are a lot of ways to get your education. That picture is going to go perfectly right next to the original.