Tag: Thing1

Widgets and Wonders

The senior class graduates Saturday. The fifth grade, the elementary school’s senior class, celebrated their ‘moving up’ to middle school a few days earlier. Thing2’s graduation to the next step of his education was a huge milestone for us. It’s the first time in twelve years that we won’t have a child in elementary school. But it’s not only our perspective that made the afternoon unique.

The Big Guy and I each went to schools with thousands of kids. Graduation at mine lasted almost two hours because we had to wait for hundreds of kids to accept their diplomas. I knew the principal’s name, but I doubt he knew mine before he read it on the slip attached to my diploma. We were widgets, school was a factory.

At Thing2’s ceremony, there were songs. The music teacher handed out awards to the kids who had done chorus and band. The teachers from each 13-kid section handed out academic awards, and then, at the fifteen-minute mark, it was time to hand out the ‘diplomas’.

The principal started with a gentle reminder of the rehearsal instructions the kids had received earlier, producing a chorus of giggles from the risers behind her. She started to read out a name and the first boy climbed down to accept his certificate, but then she stopped.

“Wait a minute Mr. Smith,” she said, holding up her hand and seeming to wipe a speck of dust from her eye. The grinning boy froze, watching her as she stopped to tell the parents a story about his first day at preschool. It took less than thirty seconds, and the entire diploma handoff took less than thirty minutes for all thirty kids, even though, for most of them, the principal paused to recount a special moment or running joke.

Even for a small state like Vermont, we know our school system is on the very small side. It’s small enough that, despite ranking second in the state, there’s been a push from above for improved efficiency and lower costs by consolidating with other districts. Our district has strenuously resisted that push, and much of the resistance has focused on the school’s academic achievements. The district has also conducted more than one study to justify its existence financially.

It was Thing2’s commencement that reminded me that, in education, value can’t be determined solely by efficiency, or even scores.

The principal and teacher to student ratio won’t be any different on Saturday when Thing1 is climbing the risers. The high school principal has taught each of the kids, has coached many of them in little league, has been a presence in most of their lives for the last thirteen years. The teachers have been coaches, are parents of their classmates.

The whole ceremony, if history is any judge, will take 30-45 minutes. In those 45 minutes, however, will be packed thirteen years of phone calls and parent-teacher conferences, of field-trips and spur-of-the-moment meetings to talk over a parent’s concern, of newsletters and community service days, of nurses calling to make sure everything’s still alright, of teachers saying ‘he can do better’ because they absolutely believe that their students can. Those 45 minutes will be the result of thirteen years of creating young adults invested in a community that they know has invested in them. They will be the results of a community saw something more important than widgets.

It saw the future.

Summer Breaks


It’s the week before graduation. Thing1 and the Big Guy are working together to disassemble a third-hand swing set that has become too tired and worn to allow even the cats to play on. The swing set arrived at the house when we did, when Thing1 was in first grade and Thing2 was on the way. This weekend, both boys are too big to use it, and watching the Big Guy and Thing1 work together as equals to take it apart and clean up the rest of the yard for next weekend is making my eyes sweaty.

Thing1’s on weekly Humira now. The levels still aren’t high enough to make a difference, and he’s using cannabis oil to handle the inflammation. I get to make the odd joke about being mom of the year for getting my kid to use pot (it’s not, it’s hemp), but it is working to a degree. He’s weaning off of Prednisone which isn’t working, still taking Lialda, which isn’t working and waiting for the next blood test to see if we’ll stick with Humira or move on to the next trial-and-error.

And he’s waiting for his life to begin.

Except a funny thing has happened in the last few weeks. In between the phone calls and the daily inquiries into his bowel movements, he’s managed to get to alumni dinners for this year’s grads. He’s helped plan and pull off a senior prank centered around screwing up a parking lot for a day. He’s scheduled a new student orientation day for college.

We don’t know if he’ll be going to college in the fall. We don’t know what his future holds. The reality is, however, even if he weren’t sick, we wouldn’t know that.

Next week his grandparents and aunt will come to see him graduate. We’ll have a small party at home with a burger bar, music and a slide show of the most embarrassing moments of his first 1.78 decades.

It’s been hot the last few days. We all laugh as we realize the snow tires just came off a week or two ago. It’s springing into summer, and, just as quickly, Thing1 will be into his ‘real’ life. He’ll take his Ulcerative Colitis with him. We’ll help him fight for as much as we can for as long as we can, but, in the long run, the bulk of the battle will be his.

Hopefully he’s heading into a long summer, but the nature of his disease is that he will see winter again. Some winters are easy. Others throw a Nor-easter at you every week until you think you’ll throw in the shovel and let the winter bury you. This winter, he learned how to dig.

Because he also learned that, for the people who can and will dig, the winter does end. It always ends.

How to Raise a Parent


Thing2 is sitting across the couch from me right now tapping on an old laptop my parents bequeathed him when they upgraded theirs. He’s working on a project, talking through the lines as he taps and proving I know nothing about parenting.

I’ve worked in some sort of IT for the better part of the last 25 years. I’m the last person to tell a kid they shouldn’t play on a computer, but Thing1 got sucked into Minecraft in middle school, torpedoing his grades for over a year. It’s safe to say, the Big Guy and I are wary of Thing2 acquiring a tech addition.

Thing2 missed a fair amount of school this winter due to severe pain from inflamed lymph nodes. The pain intensified with each bout of flu or strep he contracted in the petrie dish of elementary school, and we were worried he would fall behind.

Most sick days he rested on the couch with an iPad or Harry Potter book while I worked on support tickets. I’d check during the day to make sure his latest YouTube obsession was PG-11, but for most of the day I let him take responsibility for his own amusement. They weren’t my finest parenting hours.

Thing1 got into video games about the same time, solely on the strength of his test scores, that he also got into a middle school accelerated program. He’d coasted through elementary school math, aptitude compensating for apathy. Except for mathy-science stuff, he needed serious prodding to stay on track.

When he started the more challenging program, I asked the program head how I could help him stay more organized. Her answer surprised me.

“I don’t want you to help him. He’ll learn to rise to expectations.”

So we took the hands-off approach. Bad report cards led to loss of privileges, but when he failed, he failed. When he did well, the success was his. That experience guided him like a river winnows out earth and rock to find the best route. It’s helped him learn to stand on his own two feet and, even if he stumbles, to keep trying.

I know telling the world that I let my kid spend two months playing on the iPad is inviting slings and arrows from parenting experts. Left to his own devices, however, Thing2 scurries from couch to boy-cave, moving laundry hampers and draping sheets over his top bunk to create a movie set between naps. The iPad was soon burgeoning with special effects app and ‘screen tests’. By the time he got back to school full time, he had written a script for a Star Wars fan video, complete with a mental cast list consisting of his classmates.

It’s almost Thing2’s turn to apply to that program, and, watching him create and rise to his own expectations, I’m pretty sure we’ll use the same approach. We’ll call it good parenting even though he’ll be doing most of the heavy lifting.

Cold Turkey with a side of Fries

Tomorrow is Another Diet

Most of my diets start out with the best intentions. The night before the diet, I intend to eat the best foods — and by best foods, I mean best tasting, not necessarily best for you — as I think about the foods that will or won’t be on the menu next to the chart of exercises I swear I’ll start on the same day. They usually end about 12 hours later, right about the time I congratulate myself for not hitting the snooze button at 5AM.

Day one of my breakup with solid food was only slightly different. It was Memorial Day. The Big Guy was working, but I wasn’t. I stayed up till three in the morning the night before finishing a novel and managed to sleep in until 8AM when Thing2 — fully apprised of Mommy’s diet plan for the day — came in to see if, like many holiday mornings — I would be exposing them to a balanced American diner breakfast starring sugar, fat, and more sugar. And salt.

“Is this a test?” I asked as I sat up.

Thing2 looked confused for a second and then grinned. “Oh yeah. It’s a test.” Then he disappeared, skipping down the hall to see if he could rope Thing1 into helping me get this diet nonsense out of the way bright and early. He reappeared its the unsurprising news that Thing1, whose autoimmune disorder has redefined dietary discipline over the last year, was uninterested in indulging. He thought I should stick with my plan, Thing2 reported.

“Yeah,” we both said at once.

I ended up getting Thing2 a new box of cereal and mixing my first shake for breakfast. A second shake at noon before Thing1 and I headed to the Kmart closing sale and I was feeling more than a little cocky.

The day was still young.

Shopping trips are usually like a pillow smothering my discipline. Whether I’m manic or depressed, shopping is the rush. Food is the opiate. Even scoring a purely functional $3 swimsuit for Thing1, whetted the appetite for the nearby drive-thru.

But, determined not to disappoint Thing1 who is a model of nutritional maturity, I drove past it.

We got home and promptly retreated to the sectional to enjoy the rest of the day off.

Then I saw a notification on Facebook about a petition that needed signing before Tuesday. I knew grabbing the keys, heading out for a drive to blow off steam that hadn’t had a chance to build up on a day off, would break the straw that broke my diet wagon’s wheels.

I grabbed them anyway.

I was driving to sign the petition. Really. And then I passed by the petitioner’s house. And fifteen minutes later the car pulling into a fast-food parking lot.

I knew I was disappointing Thing1 and Thing2. I knew the Big Guy would forgive. I knew I was disappointing myself and starting the best intentions all over again, the best being there would be a clean slate in the morning.

And still I ordered and indulged.

As I drove home, I debated if I should write about it. Should I tell the truth like a recalcitrant child when I got home? On one hand, why not? It wasn’t as if this was the first time I washed out of a diet. It probably won’t be the last.

Usually, however, this stage of the diet happens in secret. I say nothing and then next day I’m off it. No one says anything or even looks at me disapprovingly. But I know Thing1 worries his mom won’t be around for his college graduation. He worries I won’t be able to hike with him on his eighteenth birthday. I know I have some early signs of pre-diabetes, and the only ‘cure’ is control.

So I decided to be honest. On my blog and when I got home.

“I had fast food,” I said as soon as I got in the door.

“That’s okay,” said the Big Guy.

“I’ll start again,” I said as Thing1 said, “You can just start again. It’s a day off.”

Tonight I’m going through the intentions. I’m back on the wagon before I go to bed, and, with any luck, I’ll stay on tomorrow.

It won’t be the first battle that wasn’t won with a single skirmish.

Strange Territory

The other Friday night, Thing2 had a school dance.  Thing1 went over to SuperGal’s house for a quiet pre-prom night hang out.  The Big Guy went to play music with his traditional music band at the Wayside Country Store. For a few minutes, work was finished, school was out and I was somehow alone.

Then at 6, Thing1 texted he was starting home early, so he and I went to a new food truck discovery in Cambridge, NY. We got back just before the Big Guy finished up his gig. Thing1 went to bed early as he has been these days with his hair-trigger colon still sapping his endurance.  The Big Guy and I suddenly had the giant sectional all to ourselves. I had to keep reminding myself that Thing2 was going a sleep over after the dance since, even with the TV turned up to 50, the silence blared, heralding a new era.

When I started this blog about 6 years ago, Thing1 was just starting to pull at the fraying edges of my apron strings.  This year, despite the needs created by an acute episode of his illness, he’s been shredding the one on his side. What I hadn’t expected — but should have — was that Thing2 would start chewing at his share of the strings at the same time.

I’m wearing my UMass Mom t-shirt as I write this. It’s my new apron. There are no strings on it. Like that apron, it’ll get a few tears on it over the next few years, and, hopefully it will have a companion when Thing2 flies the asylum in a few years.

The geography of our new lifestyle is similar to when we were double-income-no-kids (DINKS) even if the absence of money reminds us that no matter where our kids are, there it is. Still, penniless or not, it feels like we’re entering new territory.

Curating Memory

Between skipping dinners at fancy restaurants and driving themselves rather than the limos featured in every movie about proms in ‘middle class’ America, Thing1’s and SuperGal/SeriousGirlfriend’s prom expenses hover far below the $1000+ average we hear about on the news.

Even the least expensive tux rental, however is a budget buster for us. Last year Thing 1 was tall and broad enough that we altered his dad’s tux down to fit him. This year he’s 60 pounds lighter but still has his prom and hers to go to.

I finally break down and buy him a suit that can go to prom and beyond, but it isn’t just about the money.

The two of them haven’t seen each other much this winter. She was under the weather in April. He’s been trying to have a complete week of school since two days after Christmas. The last week or two, we’ve juggled his medications a few more times. Tonight he has enough energy to drive the two of them in our 20-year-old Volvo wagon.

Her mom and I are feeling unusually normal. We snap as many pictures as we can fit in our phone and camera. The kids smile at us and each other the entire time, exchanging tolerant glances as their moms and dads laugh and cry and wonder aloud where the time went.

SuperGal playfully pretend-jabs Thing1 in the chest when he makes a joke intended to provoke the females.

“Careful,” he laughs. “That’s near my bleeding intestine.”

My antennae go up.

“I thought we were done with this,” I want to say.

He was done with this morning. Now, apparently, it’s back.

I don’t go to bed early on any prom night. Until the key turns in the door, I’ll be mentally replaying every news story of every kid that’s been in a prom-related car accident (even though I’ve been comparatively calm when he drives to work at night through most of the Nor-Easters we had this winter).

This prom night when he walks in the door, I’ll ask him if they had fun. Who did they see? Was the music good? Did you have snacks?

The question that has to come, that has become part of our new normal, will have to wait until morning. Whatever the answer will be, it will not become part of his memory of this night.

One Fine Day

Monday night we sent in Thing1’s enrollment fee to UMass Amherst. It was a huge moment but not just because he had finally decided which direction the next step in his future.

He had been back on steroids for a week to give his newest drug a chance to kick in. For four days his energy and resulting mood had been on the upswing. We stopped wondering if he’d need a medical deferral for school.

Thing1’s doctor has told us numerous times that Ulcerative Colitis is a permanent diagnosis, but it seemed as if the drugs and new diet were finally starting to control it. We bypassed hope and moved directly planning for the next few months.

Tuesday he took the last dose. After work we drove an hour to Clifton Park, NY to get a suit on sale for prom. As I drove, he talked about his plans for the prom at his school and the one at hers. A week earlier the long drive and fitting would have drained any energy and interest in conversation, let alone planning.

Wednesday was glorious. I used my day off to fax forms to schools and take care of car inspections. I listened to radio talk shows and reveled in the sunny first day that truly felt like spring. We closed out the day with burgers and silliness around the table at a local haunt. It was a celebration of normal.

It was a celebration of a new journey.

We got home while it was still light out. Thing1 claimed the coveted corner section of the sectional. I got out my laptop to follow up on a few issues at work. Thing2 channel surfed as he worked on his Star Wars fan video script. Chris stretched out on the other sofa for a well-deserved post-burger nap. Thing1 went to bed earlier than the night before. All of us chalked his exhaustion up to his busy day, refusing to entertain any possibility that the glorious string of days was an anomaly.

This morning when he came downstairs, his complexion was paler again. He silently made his diet-friendly breakfast and went to sit on the sectional. I hated the question I had to ask.

“Yes,” he answered. “One step forward, two steps back.”

“I’m sorry, Buddy,” I said, trying not to call a 6’3” gentle growing giant, ‘Baby’ as I’m often tempted to do when his mind or body is hurting.

Thing2 was almost ready for school, and I ducked into the mud room and angrily kicked off my slippers.

“I give up,” Thing1’s voice echoed around the corner. I wanted to swear at something on his behalf, but instead I slid into my clogs and yelled to Thing2 to get his shoes on.

I know parenthood doesn’t come with a finish line. It’s journey. You stay with it — sometimes a little slower — for as long as there’s breath and love in you. I keep wondering, though, if you get to a point where you automatically have a useful answer for the difficult moments.

“It’s a half step back,” was what I finally came up with. I don’t tell him everything’s going to be okay anymore. I know it will, but he’s been looking for real hope and not just flashes of it for a while now. Predicting a rosy future without knowing the solution isn’t optimism. It’s dismissive of his perspective which, while often hampered by youth, is his and which his experiences validates. “I’ll call DHMC,” I said.

Together we wondered if we needed to find a new strategy. Should we talk with our doctor(s) about alternatives such as Cannabis Oil that has been recommended by other people with UC? Should we try the next drug with a 40% success rate on the list? Thing1 finished his breakfast and got up to put his dishes in the sink where they will stay until Thing2 remembers to empty the dishwasher so discussion of staying up later on a school night can ensue.

The only strategy I could devise does not include swearing at the heavens or doctors or my life or Thing1’s. It does not allow giving into tears of frustration once I dropped off Thing2.

“I’ll call and keep calling, Buddy,” I told him, peeking around the mud room. “You call me if you start to spiral or need to come home during the day.” He nodded and started packing his bag for school.

As we have been reminded so often this winter, chronic disease, like life, is a journey. We’ve travel together for a while now. We do have our own paths, and there will be more time in our lives that we’ll navigate them independently than as a team. In these rough stretches, however, I’m sticking close. I making sure that he knows we’re working for answer and that, even with all the steps backwards, we won’t let him give up on the journey.

A Birthday Oddity


I honestly wanted to do nothing more than absolutely nothing yesterday. 

Yesterday, I woke up as a square.  An odd square.  A product of two odd primes. It’s the fourth time I’ve been the square of primes, and, in all probability the last, as I’ll have to be 121 to celebrate the next truly odd birthday.  For this birthday oddity I’d planned a trip to the University of New Hampshire for the last college visit before my first son has to figure out which dotted line he’ll sign. 

But that wasn’t what made it odd — or wonderful.

For the past two weeks Thing1 has been dealing with anemia brought on by his disease. He could not tolerate a drive of any length, so we had postponed the UNH visit already.  The newest drug, however, seemed to hit pause on his symptoms, and his affable nature had re-emerged over the last day or two. We knew this was the last best chance to go.

We got Thing2 to school and then headed down to the hospital. Thing1 needed bloodwork to check trough levels for one of the five drugs trying to control his auto-immune disorder.  It was already 9 by then, and Thing1 was ready for Breakfast Number 2 — a side effect and a sign he was starting to feel more himself. 

Treating the day like a field trip day (if it were run by an really over-indulgent teacher), I took him to our favorite diner in Bennington (my next blog will be titled ‘Diners I have Known’). We’ve been going there since Thing1 was in a car seat carrier, and my eyes started sweating as I watched my gentle giant pick out two entrees for a ‘snack’ (although it could have been tears brought on by the impending dent in my wallet). 

“Mom,” he said in that tone that said other people could see me getting emotional as my baby prepared to leave the nest.  There would be a few more warnings.

After breakfast we headed east toward the other side of Vermont and then to the east side of New Hampshire.  

We stopped for a break during the three and a half hour drive. A girl playing scratch tickets, reminded me of a failed lesson in probability from another road trip a decade ago.  On a whim, I bought a ticket, thinking he’d be my good luck charm again. Ten years ago, I’d told him we’d paid a tax on people who are bad at math and wound up winning on three $50 scratch tickets in a row. I’d chalked it up to some ‘magic’ which had everything to do with being with my seven-year-old and nothing to do with Math.  Yesterday I lost, of course.  Thing1 is too old and skeptical to channel that kind of magic anymore, but we were both laughing as I scraped the silver goo off the losing numbers. He’s still my good luck charm.

It had been a long time since I’ve heard Thing1 really laugh. 

We got UNH and asked our questions before walking around.  Thing1 loved it and was even more undecided about his future. A few more drives around the bucolic campus, we headed back to meet the Big Guy and Thing2 in Vermont for dinner. 

It poured most of the time until we got near the Vermont border.  It rained from Bellows Falls to Londonderry and got foggy as we headed over Bromley mountain to Manchester. 

My body was getting weary from the travel and from the constant travel and worry of the last few months. It was as if a day of not worrying — of seeing Thing1 happy and debating over pleasant aspects of his future —  had let my muscles relax too much for a moment. 

When we got the the restaurant, Thing1 mentioned a worrying symptom that had appeared, and we knew the tension release was temporary.  In reality it’s always temporary, but it is always welcome.  

When we got home, I got my sketchbook, planning to doodle and promptly passed out on the sofa with Thing1 next to me and eleven year old Thing2 draped over the cats that came to sit on my legs.  I woke up long enough to send Thing2 and myself to bed for the dreamless, satisfying sleep that only an exhaustingly perfect day can produce. 

And the oddest thing was that it was the best present I hadn’t even thought to ask for.

The Scattered States of Thing2

Thing2 at the ER

Thing1  was diagnosed with an autoimmune disorder almost 2 years ago now. We knew the diagnosis would come with big changes to his life, and this winter we really got to understand what it means to live with and care for someone with a chronic illness.

We were still somewhat prepared for it.

What we weren’t prepared for was going through very similar routine with Thing2. After several months of ER visits and tests and flu‘s, we now find ourselves between a number of diagnoses, including a possible tickborne illness.

 Thing2 has found himself and completely unfamiliar territory. My superhero whose used to jumping over tall rock piles in a single bound it’s only found himself with barely enough energy to walk from chair to bedroom.

Except during the worst of the pain, however, he still my superhero. I still see his enigmatic little smile, and he still finds ways to experiment, even if it’s only with making movies with special on the iPad (full disclosure: I could not do it) or testing theories about how your atoms are not really touching your brother that he heard on Cosmos (science hurts sometimes).

I would donate an organ if I could make him better tomorrow, by doing so, but, as Thing1 has Learned over last year, what doesn’t kill you doesn’t just make you stronger, it also makes you smarter.

Breathing Room

At the beginning of this year, Thing1’s autoimmune disorder hospitalized him with an intense flare up and, not to be left out of the fun, promptly Thing2 contracted Influenza-A that, along with a lymph node inflammation painful enough to prompt two separate diagnoses of appendicitis earned him an overnight ticket to the pediatric ward. As a result, almost every week of our 2018 calendar has been dotted with nights in the ER, overnights at the hospital and follow-ups at various doctor’s offices. Last Thursday marked my first day off in weeks that didn’t include a rush to the ER or a four hour round trip drive across the state to a specialist, and I didn’t know what to make of the unexpected breathing room.

For weeks, the voices in my head that run an internal dialogue about art and literature and school shootings and the homeless population and, you name it have been replaced with instructions. Log when you last gave Tylenol or ibuprofen. Call for the new prescriptions. Did T1 have 32 ounces of water or 16? When did T2 poop? Check his weight. Call the insurance company. Call the doctor. Call the insurance company. I wasn’t numb, but I was a robot. Calculating but not thinking, especially if it meant engaging in worry which is all too natural for me (it could be an Olympic sport).

The robot didn’t have much extra processing power for art or writing, and February was burning away without any pictures to show for it. Even a conversation with a fellow artist about drawing in the down times at waiting rooms didn’t get my pencil or brush moving.

There was breathing room, but for some reason, I was afraid to rake that first breath.

A few nights ago, I decided out the iPad to work on a page for Dweezil’s To-Dos, a book about a little boy with too many projects (don’t ask how I get my inspiration).

Inking and coloring over the scanned drawings is methodical. Robotic. It’s not particularly creative a lot of the time. It’s basically just drawing lines – filling in the space between points.

It’s not creative, but it is meditative.

In the meditation, however, the robot slowed down. I inked and colored page 6 six different ways, and the machine started to power down. My eyelids felt heavy, and the iPad fell from my hand. The thud of the Otterbox on the floor jolted me awake again, and, rebooting, I took in a gulp of air and opened a file to start page 7.