Family

Decluttering

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I had already decided to make 2019 the year of finished projects, but I was a little unsure of where to start and how best to prioritize them.

Last night I stumbled onto a new Netflix show, Tidying Up, and, having seen reviews of the host’s books on Amazon, decided to give it a whirl. I knew that the host, Marie Kondo, made her fortune helping people de-clutter. Some of the reviews had panned her strategies as being doctrinaire and extreme, So I hit play with healthy amount of skepticism.

Ten minutes into the show I was hooked. I recognized the people she was helping—parents of children a little younger than ours. they too had started the show as skeptics, but as they begin to think their relationship with their possessions, they begin to see the beauty and the advertised joy of illuminating what doesn’t make your life better.

I listen to the show last night as I struggled to settle on an illustration style for a book I’ve been working on for too long. I played with colored pencils. I played on the iPad drawing tool. And finally I got out what worked for me at the very beginning: a number two pencil and a $10 pan of water colors. It took me an hour to redo the first drawing, and it was the first time I’d been happy with the results for this book. I’m onto the next pages, issuing methods that I “should“ be using in favor of the one that works when I’m illustrating.

Focusing on the method that brings joy worked so well, I may actually have to try it on the house. My days of being able to write about being the world‘s worst housekeeper may be coming to an end.

For Pulpy Mountain Majesties

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The first wave of firewood arrived shortly before the heatwave. Conquering Mt. Cordwood is a family affair, and it has to happen quickly, as more is on the way.

It takes a little over 4 cords of wood to heat our earth-sheltered house. We don’t use any other heating source. Some years we cut more than others, but the Big Guy and I mind paying to have it delivered far less than we minded paying for oil in our old house. We know the woodcutters, and it’s nice to have the bulk of the money coming into the community.

Yes, at the Dinner Table

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Denial isn’t a river in Egypt. It’s a pitcher of Kool-Aid, and as the heatwave wore on into its fifth day on Thursday, Thing1 and I were sporting faint purple mustaches, reality about to crash through the walls — again.

 

Heat advisories all week had included warnings for people with chronic illness. The advisories didn’t specify what care the chronically ill should take beyond staying out of the heat. Thing1 and I, however, still mentally had him in the ‘warning doesn’t apply here’ category, and, when Thing2 suggested going to the driving range, I got my keys.

 

It was 92 degrees by the time we put our money in the honor box in the barn that doubled as a pro shop and plant nursery. Thing2 and I were happy to make contact with the ball. For Thing1, every shot matters. He’ll hit one 200 yard ball for every three his eleven-year-old brother knocks into the ruff. Thursday Thing2 swung his way through half the basket before Thing1 had teed off four times.

 

“I need to sit down in the shade.” Thing1 grabbed his water and headed down the small hill to the car. He sat on the shady side, hand resting on the open door, sipping and breathing slowly.

 

“Do you want to go?” I asked, ready to put my foot down and force an exit. Thing1’s illness, however, has kept him indoors most of the summer. I wanted him to enjoy a normal day out.

 

He shook his head ‘no’, waited a few more minutes, and trudged back up the hill for a few more shots. We quickly realized practice was over for him, and he went back to the car for a minute while Thing2 hit the rest of the bucket. We headed home thinking Thing1 only needed a dip in the Green River and some rest to be better for work the next day.

 

Friday morning, Thing1 woke up with a fever and a phone call from the hospital telling us that his latest blood test showed his anemia — a side effect of the ongoing six month flare up — was worse. Neither of us was surprised. His lips had no color. His energy level, briefly improved in June, was almost non-existent again. He didn’t work Friday and stayed in bed all Saturday, determined to go to work today.

 

This morning he woke early and got breakfast. He headed out for his shift, and I took another mental sip of Kool Aid hoping he was over the worst.

 

<<I’m coming home.>> It was three hours into his four hour shift when the text came. <<If I stay any longer I won’t be able to drive.>>

 

We texted back and forth, arguing if should be driven. He was already on the way home by the time he managed to text enough teen tone to convince me of his alertness. He spent the rest of the day on the couch, hydrating to control a new fever, once wondering aloud if his body will ever let him out of limbo. Thing2 waited on him, bringing him water while I worked.

 

When work was done, the Big Guy and I sat on the deck as he grilled burgers for dinner. We talked about the fragility of Thing1’s plans for school in the fall and beyond. The wall of reality was crashing in.

 

Thing1 used his last bit of energy for the day moving from the couch to the table. He looked at the burgers.

 

“I’m not really hungry,” he said. “It smells great. I know I need it, I just don’t have have any desire for it.”

 

Thing2 had spent the day monitoring his brother in an unnatural state of quiet and was bubbling with energy as the Big Guy served the burgers. He waltzed to his seat, a speaker-connected iPad in his hands and a devilish grin on his face. He tapped the screen and a loud fart emanated from the speaker. He tapped again and a Beavis and Butthead laugh echoed into the surrounding forest.

 

Tap, fart. Tap, goat laugh. Tap bark causing the pets to look in our direction andThing1 to smile and then quietly chuckle.

 

“All that science and technology for a fart joke,” Thing1 murmured. Then he grinned at me and the Big Guy and reached for a burger. Thing2, never one to let an audience down, serenaded his older brother with more creative fart sounds as he ate until, as happens with all great jokes, the farts grew stale. But the farts and the technology had served a higher purpose.

 

It’s still early evening. Thing1 is already in bed as I write this. We have a visit to the hospital this week, and I’m pretty sure both of us are no longer drinking the Kool Aid. Thing1 is in the ‘really chronically ill, better heed the warnings category. He’s in the ‘no idea what his plans are past tomorrow category’. We’re off the sugar high of denial, but just because the walls fell in, doesn’t mean we’ve fallen down.

 

One of my favorite books growing up was Alice Walker’s Possessing the Secret of Joy which traces the voluntary circumcision of Tashi, an African woman trying to mediate her gender and and cultural identity. Through her physical and emotional recovery in the aftermath of the mutilation, she discovers and reveals to the reader that “resistance is the secret of joy.” I’ve never wanted or been able to forget the story and the beauty of Walker’s writing, but that missive burned itself into my subconscious. It resurfaces in chaotic times, it is guidance.

 

Since Thing1’s illness intensified this year, my resistance has been finding the right drug, the right strategy to get him well enough to start his adult life. As squeaky gassy sounds from the iPad surround us at the dinner table, however, it becomes clear that resistance is not about finding the solution to every problem. It’s about recognizing that some problems won’t be solved, but life will go on, and, if you’re willing to seize it, joy — however dinner table inappropriate — happens anyway.

Fathers and Sons

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The Big Guy and Thing1 have been working to replace the radiator in Thing1’s Volvo wagon, a car that’s seen more winters than he has, gifted to him by my parents when they bought a new one two years ago.

The Big Guy went to a car show with a friend earlier in the day.  Interested more in exotic cars, our boys Stayed home while I worked. I’m working Sunday, Fathers Day, so the holiday atmosphere is a bit muted.

We’re closing out the afternoon as the Big Guy and Thing1 closed out the repair job. Thing one was so engrossed in the project he forgot to try to dodge the camera.

It’s a quiet, gorgeous afternoon, but it’s not the shared love of cars and fixing things that makes the afternoon glow. It’s watching them bond and the Big Guy’s pride as he remembers he had a big hand in raising the capable, affable mechanic next to him.

I can’t help feel like that’s the most best way to honor a relationship between father and son.

Negotiations

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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

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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

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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.

Strange Territory

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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.

Smelling the Roses

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“When are they due?” I texted, knowing exactly what the answer would be.

“Today,” he texted back.

I had tons of baby pictures, but we hadn’t snapped many pic of Thing1 or Thing2 since Christmas and none that were remotely yearbook-worthy. So that’s how the Big Guy, Thing1 & 2 and I found ourselves packed into my Jetta, zipping toward the mall portrait studio after I got done with work.

The ball-drop was my fault. I had messaged a friend about senior portraits a few weeks earlier and then forgotten about it when round 3 of this year’s flu started up. Thing2’s classroom has been a petrie dish that would make a bacteriologist green with envy and gangrene, repeatedly recycling flu and strep that caught Thing1 in an especially vicious spin of the cycle.

Thing1, understandably, has had to work to remind himself of the good things that have happened to him this year — getting into most of the schools he applied to, a job he loves with people he likes, and miraculously managing to be in the hospital mainly on days he’s not scheduled.

Still, he’s been out of school a lot. Normal bodily functions require planning. A fitness buff, he struggles to remember the healthy version of himself, and it has definitely affected his mental health.

“I just wish he’d get a break,” the Big Guy says every so often.

The entire family has learned that breaks are rare, brief and never scheduled. So, even though it was our first family outing in months that didn’t include a hospital, none of us was ready to let our guard down Saturday night as we sped toward the mall for the last minute appointment I’d booked.

The Big Guy, however, quickly started doing what dads do best, using his special talent for turning innocuous road signs into the finest eighth grade humor, and Thing1 and Thing2 were, as always, an appreciative audience. They segued into fart jokes, and we all started bawling. I focused on trying to drive as I surrendered any pretense of trying to minimize the inappropriate humor.

The shenanigans ceased only briefly as we walked through the department store to the portrait studio, but as soon as Thing1 and then Thing2 got in front of the camera, the Big Guy went to work with his Family Guy impressions ensuring that the two of them smiled for every shot.

They smiled for their individual sessions and then together with Thing2 putting Thing1 in a headlock or grinning up at him as if to say, “I’m willing to be the bratty brother the whole way home if it would get a laugh.”

And in every shot, I can see them completely forgetting their troubles. The only thought they seem to be sharing, as every kid does at least once, is how embarrassing parents can be in public.

Trouble started back up for Thing1 the next morning as his body refused to respond to medication and fart jokes.

We had known the fun would be short, but at least for a few hours on Saturday night, we had been reminded of an important truth which was the only unspoken thing that night. You have to take the bad, but when breaks come your way with a bit of good, you positively need to enjoy them — even if someone has to tell a fart joke to get you started — because you don’t know when they’ll come around again.

The Scattered States of Thing2

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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.

Something to Do

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For the first Saturday and as many Saturdays as I can remember, I didn’t have a class or a fair, Thing1 didn’t have a job, and the Big Guy wasn’t working. 

We have plenty to do. The yard has been professionally neglected all summer, but still with everybody in the family home for once, we felt like we should look for something to do. 

Something fun.

That’s how we found ourselves driving through The rolling hills of Washington County, New York. Thing1’s driving did nothing for my painting skills, but it did wonders for my creative spark. 

Suddenly I can’t wait to get back in the studio.

Yours, Mine, Ours

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blumen-1

For some reason I had a lot of gay friends in high school. It wasn’t something I planned or even thought about until senior year, when a number of friends started coming out.

Homosexuality was not an issue prior to that, and my friends were my friends. Who they loved would never became an issue for me.  They were wonderful people before they were out, and they were (and are) wonderful people after they were out.

Those relationships stayed close beyond high school and brought new friendships with them.  It never occurred to me that there was anything unusual about having a lot of gay friends because that was what I knew.

Most of my close friends had relatively supportive families when they came out, but over time I heard horror stories of people being shunned and even threatened with violence by their own flesh and blood.  I knew of at least one friend who was beaten up simply for ‘acting’ gay even before he himself had seriously contemplated who he was.

It wasn’t until I started dating more that I realized that some people really did have a problem with homosexuality. Some of the objections were religious, but more frequently, there seemed to be an unfounded fear of unwanted sexual advances (ironically often in men who themselves were aggressive with me).

I ended relationships when it became clear that the man I was seeing would never accept my friends.  For a long time, I believed my own intractable position was founded on the fact that my friends were a non-negotiable part of my life, but as I’ve married and we’ve gone our own ways geographically, my feeling is stronger.

It wasn’t until I had a son who defied convention with his tutus and fairy wings that I understood why it had mattered to me so much back then that any companion be accepting of my gay friends.  But when my unconventional son began asking to wear his rainbow wig to the diner, the empathy and love I had felt for those people crystalized.

It wasn’t just acceptance of my friends, I had wanted. It was the assurance that if any child of mine was different, a future husband would respond the way the Big Guy does — by asking if our different child wants to wear his superhero cape with his wig.

It hit again Sunday when the news came in from Orlando, and I read of a mother reading the last texts from her son, knowing he might be dying and that his last moments were filled with terror.

It hit because as a mother I knew that the last thing she probably cared about at that moment was who her son loved.  The only thing that mattered was that she wanted him to be safe so that he could love.

I knew that could have just as easily been my kid who had wanted acceptance and freedom from fear.  It could be your kid that was refused housing or service or even medical care. It could be any of ours that was in that night club in Orlando, murdered for the crime of loving someone.

I don’t know what the future holds for my unconventional son, and it is not our job to project an orientation on to him. It is our job to make sure he knows that our love doesn’t come with conditions and to work for a world where everyone’s kid can be honest about whom they love without fear.