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.

The First Thing

About five years ago I was invited to lead a drawing workshop for a group of teenage boys recently arrived to this country as refugees. I had never taught anybody anything and knew nothing about classroom management. I understood the workshop would be an education for all of us, but some of the lessons of that day have only recently become clear.

The boys were attentive and engaged with the workshop. By the end of the class, they had filled the pages of the sketchbooks I’d brought with drawings of trees and garden statues. As their confidence grew, some of them began to sketch their lives as refugees.

Those very personal drawings often depicted experiences no human, especially no child, should ever have to endure. When I got beyond my outrage at the thought of a child having to hide from people with machine guns, however, I wondered if the resilience of these boys was the most valuable lesson I would take home, but my education was only beginning.

A few years later, I began working with students with complex trauma. Many of the students came to us through the juvenile justice or foster care systems after experiencing years of assault or extreme neglect at the hands of parents or trusted caregivers. Some students tiptoed into the program, scanning every room they entered for threats and jumping at the sound of a torn piece of paper. Other students raged against their lives with profanity and destruction.

These kids take months and years to navigate far enough around their trauma to be able to build their futures. Some never get around it, and, when I first started this work, I wondered how the boys from the workshop who had survived war circumnavigated those memories, seemingly, so much more quickly.

When Thing1 was born, I morphed, in the space of 36 hours, from an ambitious, tech-driven programmer to a bowl of pudding that wanted nothing more than to hold my child until he no longer wanted to be held. At the time, the Ferber method was still very popular, but something felt very wrong about not picking up my child when he was crying. I asked a social worker friend if I should just have Thing1 ‘tough it out.’

My friend put her hand on my arm and said, “Rachel, the first year is about establishing basic trust.”

I never forgot that. Establishing and keeping trust with Thing1 and Thing2 became my parenting touchstone.

Studying education, I read Erik Erikson, the psychologist who promulgated the stages of psychosocial development starting with that first year or so of basic trust. It was bias confirmation, but, as I met more children healing from trauma, I wondered if the loss of trust reset those stages of development. 

Last year I drafted my family into a 5K to raise money for charity. The race, an hour away from our house, gave me a chance to talk a family member and child psychiatrist about the different trajectories I was seeing.  I asked him if the breaking of trust by a parent or trusted individual such as a teacher or police officer cause a more profound or permanent trauma than experiencing atrocities by people who make no secret of their bad intentions.

He didn’t a quick answer for that question. He didn’t have easy answers to the more difficult question of how we help people recover from that trauma. I still suspect there are no easy answers to either question.

Working with children who have been betrayed by people they should be able to trust has brought the lessons from the workshop full circle, showing me that rebuilding a life is begins by addressing the first thing all humans need– the ability to trust.

Better than Before

The girl had received bad news for the umpteenth time in the last few months. Her sobs of despair reverberated down the hall as she asked the powers that be, “What’s the point?”

“You’re the point!“ The cosmos answered in the form of a lanky young man charged with keeping order the school. “People like you are the point, “ he repeated. “Don’t you know that you all make us better?“

I smiled as I leaned my head towards the doorway to listen from my classroom. I was on standby for hugs and comfort, but my young coworker was already working his magic. And, as he elaborated on the ways our students make us better, I thought about how Thing1 and Thing2 have done that for me every day over the last 19 years.

Just before Thing1 was born, I still didn’t have a handle on my bipolar disorder. My depressive episodes sporadically threatened jobs, and manic phases spurred spending sprees and other self-destructive behavior.

But then Thing1 happened, and I knew I had to be better.

“Every day I go home after work and think about how to be better,“ my coworker said to the girl who was now listening quietly. “You do that for all of us.“

I thought of all the ways I have tried to be better for Thing1 and Thing2 over the years. I thought of the therapy I’ve sought and the examples I’ve tried to set.

Then I thought of all the ways our students spur me to be more organized, to learn more, to be better for them. It made me smile as I thought of how no matter what we will ever do for our own kids or for the ones we take care of during the day, we will always owe them far more for every day making us a little bit better than we were the day before.

Commando Parenting

I always said if any kid of mine where is the teeniest bit artistically inclined, I would encourage the heck out of that inclination. Thing2 is, and I do, but I swear that if there is a God up there, he or she has finely honed sense of humor.

I was a slob as a kid. I collected everything and threw away almost nothing. I had drawings on little scraps of paper and stole my mom‘s scissors for drawings and creations. She never expressly said she hoped I’d have a kid just like me, but I think in the back of her mind she must’ve known that it be a pretty good revenge.

She’s getting it.

Thing2’s room has gone from being inspirational to hazmat training ground. His creativity has gone high-tech, so boxes of pencils, markers, and half-filled sketchbooks share space with a DIY Recording studio where he swears he’s going to make animated films to make George Lucas drool. It’s also filled with empty popcorn bags and scraps of paper and – you guessed it – Mom’s stolen scissors.

I have drawn several lines in the sand to get him to clean it. Carefully delineated boundaries worked beautifully with Thing1, but, despite his volcanic colon, he can be pretty obsessive about keeping his space organized. It took only one full-scale clean out of his room to help him make the jump from messy tween to fastidious young adult.

One thing I’m finding about artistically-inclined offspring, however, is that simply bulldozing the room doesn’t get the point across. It just creates more canvas. So I’m taking a new tactic today.

As I carried out a little clutter control this morning in the rest of the house, I noted that my creative kid had left “his” iPad and ten-year-old computer in the living room, presumably after shooting footage for a fan-fiction movie he’s been scripting. The iPad is old, but it still works so it wasn’t going into that sty of a room where we might invent the first human to iPad virus. I decided to hide it in ours until the room gets clean.

Hiding precious objects gets rooms superficially clean quickly, but today I mean business. I want it actually clean. On my next trip back to the living room, I picked up the laptop to find a hiding place for it. I had almost passed his room when I thought of the perfect place. I went into his room and moved some of the carnage away from the bunkbed. I put the laptop in the safe little nook behind the bunkbed and then put the carnage back.

I figure about 4PM, I’ll either be up for parent of the year or getting a visit from child protective services — right after he hears he can the laptop back when he can find it.

What Kind of Mother

It’s two day before Thing1’s graduation. I’m on hold with the pharmacy for the third time this week trying to find out what’s happened with the most expensive of his five prescriptions. The insurance company won’t approve an increased dosage.

I’m scrolling through Facebook while I wait, stopping to like a friend’s post about a daughter’s scholarships or add a frowny-face to a post about a shelter dog on ‘death row’. I’m thinking about Plan B and C, including a three hour drive to Montreal to buy the temperature-controlled drug there. 

The hold music is still playing as I pause at a picture of a crying toddler. I click on it and open the article.

The boy in the article has been recently separated from his immigrant mother. The article doesn’t mention if they entered the US illegally or were seeking asylum, only that he is traumatized and that his mother is now incarcerated several states away. I break a strict self-imposed rule and scroll to the comments below the article. There is outrage at the child’s situation. There is also indifference and even smug vitriol cast at the mother and, by extension at the child on whom our government is visiting this psychological trauma, for his mother’s ‘sin’, a misdemeanor at worst, of crossing the border.

The pharmacy customer service rep returns and pulls me back to my current battle, which suddenly seems almost insignificant. I harden my heart and head and click the back button, for now forgetting the child and the hundreds like him.

“I’m sorry, Ma’am,” she says, her voice almost robotic. “The insurance company has denied the claim again.”

“Well can you at least send out the original prescription?” I ask. “He’s getting way behind now.”

“I’m sorry, Ma’am,” she says again. “The old one was canceled with the new one. We’ve sent it back to the hospital to reauthorize.” 

I want to ask her if she worries about job security if medical marijuana – a derivative of which we are on now wholly dependent to stop my firstborn’s internal bleeding – ever gains real traction. Instead I thank her for nothing, knowing I’m being rude for no good reason and with no expectation of an improved result. I call the hospital as soon as I hang up. 

The nurses – there’s a special place in heaven for them – are already faxing and calling and liasoning between the doctors and the ‘experts’ at the insurance company (there’s a special place for them too). The nurses inform me that the insurance company’s chief pharmacist denied the new dose again, and they are appealing the denial a second time.

By Friday afternoon, company is due to arrive for Thing1’s graduation. I finish most of the cleaning and sit down to call the hospital before the weekend starts. I sit on hold, thumbing through the Facebook feed on my phone again, smiling in spite of my frustration. Images of kids smiling at parties and beaming parents flood my feed. I know they have their worries too, but, for a moment, I feel like I’m looking through a window at another world.

Stories of children being separated from parents also appear. I don’t click on the articles; I’ve just heard their stories on the radio. A father, separated from his young son, has killed himself. Mothers in detention are being told they may never see their children again. Today, knowing I can do nothing, I choose to be blind.

The nurse picks up and tells me the insurance company is still stalling. My son is now over a week behind on the main medication he needs to know will work before he makes too many plans for fall. 

Saturday I tune out, focusing only on our small family celebration. At noon, our firstborn, my baby crosses the great divide from high school to a world that expects something of him. It is a huge step, and I constantly think how fortunate we are to have been able to travel toward and cross over that divide with him. Now, increasingly, he will travel independently. 

Once, I thought this part of the journey would be like ripping a band-aid off of an unshaved leg. 

Before Thing1 was born, I did not want kids. I was a wretched sinner. I had fornicated. I had lied — to people I hated, people I loved, to myself constantly. I had been guilty of almost every deadly sin. I was selfish. I was the worst candidate for a potential parent.

Somehow the miracle of my son happened. It would trite to say that he saved me, and he didn’t. He instead brought out a best part of me that I didn’t know existed so that I could be there to save him if the need ever arose.  

When he was first born, in my dreams, the need always arose. Shortly before I went back to work my dreams became colorful scenarios of someone pointing to my past sins. A judgmental family member or actual judge would tear him from my unfit arms, a rhythmic, colicky cry providing the nightmare’s soundtrack.

Initially, I thought these dreams were more selfishness — the fear of losing the one good thing I had ever been a part of making. Eventually, I began to see my anxieties about losing my child were really about the fear that my earlier sins, in the form of karma, delayed ‘justice’, or just incompetent mothering might threaten his foundation, that the sins of his mother would be visited on him.

Tuesday is Thing2’s last day of school. Our older son’s case is still under appeal. The three of us decide to go to lunch rather than wait by the phone. It’s a perfect Vermont summer day until we get back to the mailbox where we discover the first denial letters, signed by the insurance company’s chief pharmacy officer. 

I call the hospital for a status report. As I wait on hold, I google the pharmacy officer, a woman I discover. Knowing it’s psychotic, I get on Facebook, stalking the woman who’s denied my child’s prescription. I find her profile easily, discovering a professional portrait and a few snapshots of her with a little girl, maybe her daughter. 

I want to message her, to ask her what kind of mother can look at my seventeen-year-old’s charts and deny his chance at health. How can she be so blind to his condition?

The nurse returns and informs me that the doctors have conferred with the insurer for yet another review. We’ll know more Wednesday morning. 

Wednesday after lunch I start my daily calls. Our son is anxious to go back to work. Three weeks without his medication, however, are causing a backslide, despite the cannabis oil on which we’ve pinned too much hope.  

But I still have hope. I have a Plan B and C through Z if needed, and Thing1 knows it. That knowledge is letting both of us see his future through an optimistic lens. 

I keep Facebook open for a few more minutes after I hang up the phone. Graduation photos still appear in the feed. So do more articles about children being torn from their families in the name of national security. 

I click on a few, avoiding the comments, focusing on the families, on the children. I mull over a new Plan A, then Plan B to help safeguard those futures. They are not my children anymore than my son is the pharmacy officer’s child, but they are someone’s children. I still don’t know exactly how to help, anymore than I know if we’ll win our second appeal, but today, as I wait, I refuse to be blind.

Negotiations


Since he could crawl, Thing2 has been chasing after Thing1.

Thing1 played in Little League. Thing2 cheered for four seasons straight, mangling his brother’s name at top decibel. Thing1 started playing golf, Thing 2 held the flags. Thing1 wanted to be alone, Thing2 had to be next to him and even on him.

Thing1 was about four when he began begging us for a baby brother. He didn’t want more playdates, and he definitely didn’t want a baby sister. He even accepted that, eleven years ago, Thing2 was the big present that Christmas.

He was very serious about his responsibilities as his big-brother. He read to Thing2 and held his hand on the jungle gyms. He made sure that I didn’t pick any outfits or Halloween costumes that violated the boy code of ‘not-too-cute’.

Seventeen years later, Thing2 is still chasing after, but for the last few years Thing1 has been wanting ‘space’. Often their relationship is like watching a match chasing a long fuse, and the match has been burning hotter as he realizes his big brother is about to put some serious geographic space between them.

This afternoon, after a morning of working together with the Big Guy in the yard, Thing1 grabbed his keys and golf clubs to go to the free course at the park.  Thing2 watched him and retreated to the couch to work on a script. Thing1 noticed his brother sitting in a dark corner on a sunny day, knowing I had to work and that Dad needed to rest his bum knee.

“Get up off the couch,” he ordered. Thing2 started to object, but years of hero worship, like any cult, is hard to fight.

“Why?” he asked instead.

“You’re coming with me,” Thing1 announced. “It’s too nice a day to sit inside.”

The Big Guy and I looked at each other. Thing1 is very serious about his golf time, especially since his hair-trigger colon has kept him off the fairway all spring. The last time the two tried playing together, three-year-old Thing2 had rearranged all the flags on the practice putting green so they ‘lined up’ and Thing1 had sworn he wouldn’t have him as a partner. 

But, as we get the house ready for graduation, Thing2 pitches in with as much vigor as his taller but somehow not-as-much-older older brother before they head out for a fun afternoon together and without parental supervision.  They both seem to understand that something was being renegotiated for the better.

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.

Come Together


We weren’t late, but we weren’t early enough to Thing2’s band concert to have a good seat selection. The elementary school band is small, and I was surprised by the crowd.

The concert program revealed that the middle and high school bands would also be performing. It’s a small school system, so I was still surprised by the increasingly packed house. We’ve been to a lot of recitals and school concerts over the years, so I thought I knew what to expect.

I knew nothing.

The high school band played first. The elementary and middle schools bands sat in the first row of seats waiting their turn. Mr. Neeson, the band instructor, introduced the piece, a march that the high schoolers will also be performing at the Memorial Day parade in five days. He then called for and got a B-flat from the band before them their cue.

The first notes marched perfectly in unison, echoing through the tiny auditorium and daring the audience not to clap. The band, culled from all grades of the high school, handled changes in rhythm and key, and the Big Guy and I had to remind ourselves that we were listening to kids who weren’t old enough to vote carry on a fairly complex musical conversation.

They segued to a jazzier number, a ‘jam’, we were told, that was composed for the concert. The Big Guy and I gave each other the super-impressed look. Our jaws dropped as the students got up from their places and switched instruments.

“I don’t make each kid solo for a performance.” Mr Neeson turned around to talk to the parents for a moment. “I do require they all know how to improvise, to listen to and play with each other.” Then the music started again.

There are fewer than 400 kids in our entire school system and, from the outside, it may seem fairly homogenous. The reality is that our school sees multi-generation Vermonters and transplanted flat-landers, Trump fans, Bernie-or-busters, and everyone in between. There are kids who get new iPhones every year and kids who may get their only meal of the day at school.

There was no way to tell if the pianist was a liberal or the drummer is a libertarian. The only thing the audience knew for certain was that these kids had learned how to change their perspectives, see new points of view and express their individuality, creating rich, beautiful music instead of just noise.

More than once during the concert, the Big Guy and I told each other that Thing2 needs to be in band again. Thing2’s creative spark burns hot enough that he may very well propel himself into a creative life when he’s grown up — with or without a school program. The performances, however, melded into a beautiful example of how arts in the schools are about so much more than vocation or even avocation. We knew Thing2 loved band practice, but it was only when we saw him and his friends working together to make something wonderful, that we realized the music program was teaching him as much about life as it is theory and even creativity.

The high school band finished, and Thing2’s band took the stage. Mr. Neeson turned to the parents again.

“So how many of you are Beatles fans?” he asked. Every hand in the audience went up. He asked if we knew the chorus to the first song on the album Abbey Road and then enlisted us as backup singers.

The band had no singer, but as the first drum roll completed, I saw a few parents mouthing, “Here come old flat-top”. My eyes were damp as the next two lines reverberated, and by the time the band was playing “One thing I can tell you is you got to be free,” every parent in the room was ready to sing out,

“Come together, Right NOW!” And really mean it.

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.

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.