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For Pulpy Mountain Majesties

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

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

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


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.

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