Mayo Road Trip

On the downside I can't do "Battle Royal's", where I lay on the ground and wrestle with Che. Every battle ended with us rolling in the yard, laughingly hugging face to face, and I inhale the hot breath of pure joyous laughter eyeball-to-eyeball. 

On the upside, Sarah purchased and put together a 3 feet deep pool in our backyard, and I can float and Che attacks me, we wrestle, laughing face to face spitting water and huge gulps of hot pure joy.  

"The Lord always provides a way," I was taught going up, and that may well be but, the sad fact is, I'm not physically capable of doing things I was doing a few short months ago. 

It grates on me. 

Like Seasoning Salt. 

Reaching for it, the extra tall bottle with the bright red cap, the Seasoning Salt isn't in it's place among Sarah's alphabetically ordered spices. 

Three days later, I find it by the Olive Oil in the cabinet above the stove. 

"How did it get there?" Sarah laughs exhaustively. 

"I have no idea," I muse, having no recollection whatsoever. 

"It's so frustrating," I sigh, feeling defeated. 

"Oh honey, it's nothing," Sarah scoffs, trying to make me feel better. "Everybody misplaces things like that."

Honestly, we're aware of the constant acceptance of slowly losing control over things I've always easily commanded. We worry what these omens mean for our future and they weigh heavily on us. 

I used to write it out of me, effortlessly crafting letters, articles, books, blogs and songs but the energy and focus required are things I now struggle to maintain. 

Thank God for Twitter. Interacting with people around the world in 280 characters is tremendously fun, well within my manageable focus and energy. 

All my life, regardless of the situation I find myself, I've tried to find the fun in it and things usually get better. 

Usually. 

We're under no illusions anything's going to improve this time. 

On Twitter I boast I'm, "defying death by coloring with Che" posting a pic of our works in progress. 

We understand what an outliner I'm becoming and what an accomplishment it is to be living, and doing okay, with stage 4 pancreatic cancer after 3 years!

Sarah and I rarely discuss these things, choosing instead to focusing completely on the day we've been gifted. 

On the one hand, all the news we get is usually bad. 

On the other hand, Sarah, Che and I have wonderful days playing UNO, Monopoly, Legos, making art, feeding turtles, cooking, lounging in a 3 ft back yard pool and, sometimes, we dance. 

That's how I look at it. 

Sarah let's me live as though these are the only things to think about though, I know she lives a whole other life, handling everything so I can focus exclusively on living.  It means she enables me to seek out the joys with the people and things I love most. 

I see how hard caregiving is for her. 

Today is a family trip to the Mayo Clinic for 2 days of tests and meetings. I'm sitting in the backseat with Che. Sarah's driving Cassidy's car because the air conditioner's broken in her's. Cass sits in the passenger seat. 

We're spending the night as this is likely our "summer trip" and Che's  beside herself with excitement. 

"TODAY IS MAYO DAY!" she said as soon as she woke up, asking me to help pack her backpack, hours before it's time to leave. 

The downside is this regiment is wearing us out. 

The upside is FAMILY ROAD TRIP!!

What's not to love?

Cloud Heart dancing with the Moon

 

I am having the shittiest day. 

Everything I do is slow motion. I struggle to remain focused. I'm short with Che. I constantly get in Sarah's way and can't seem to stop. I have lots of great thoughts flying by but struggle to grab hold of any, so I stare off, perplexed trying to make myself remember what I literally just thought.  

Somehow, I don't know how, I still go through the motions. I care for Che, follow Lainey as she drags me around for exercise, wash dishes and put them away (albeit often in the most interesting places). I read when I can, listen to tons of music, play on Twitter and pull weeds in the backyard. 

And thankfully, I'm gifted with Weed, which I smoke sitting under an umbrella while I pray, despair, question, count my blessings or, sometimes, blissfully fall into a 3 Mile stare for undetermined periods of time because "a minute is a million years".

Sarah's equally exhausted, conducting an orchestra that never stops, with instruments constantly breaking, temperamental musicians, adoring audiences to the point of suffocation and her own questions, thoughts and feelings. 

At the moment, I'm outside watching Che swim in the kiddie pool Sarah got and put together for us. Che's waiting on a friend to arrive, after spending a fair portion of the morning playing with another friend. 

Sarah's trying to take a few minutes for herself, though I'm certain she's working on something for someone, so I'm watching Che. 

Our daughter happily splashes imaginary games as I light the pipe, hoping for a second of infinity before her friend arrives.  

"DADDY! DA! DA!," Che suddenly screams. "A HEART CLOUD AND THE MOON!"

Staring through the flame, my eyes follow the point of Che's arm and look up. 

"IT'S FOR US DADDY! THE HEART CLOUD AND THE MOON! THEY ARE FOR US DADDY!"

Impulsively, I snap a photo between puffs while simultaneously going inside to tell Sarah. 

The cloud dissipates quickly.  

Che's friend arrives. 

Sarah's suddenly busy scheduling me another Doctor's appointment because of a suspicious looking bump. 

I resume my place under the umbrella, now wondering about signs from Heaven on an otherwise shitty day.  

Dad's Carnival of Angels

Mostly she loved my Dad, a seemingly impossible task, because my Father was something ... a giant of a heart with a teenager's soul, a great streak of bad luck surrounded with the best of friends and a sense of humor that could laugh at Hitler.

"You know why Hitler hated Golf?" 

I can hear him asking, eyes already moist from the explosion of laughter that follows the punch line.

"Because he always finished in the Bunker."

Mom put up with ... even encouraged ... him.

Once, at the Athens Holiday Inn while we're at the game, pulling for the Beloved Dawgs of Georgia, Dad and Robie Hester order a case of beer from room service.  They want to ensure there would be plenty when we return and neither wanted to walk to the store because they were watching the game on television. 

Everything was fine until they got the bill, when both blamed the other for being too lazy to walk to the store. 

Awe Dad, you were something. 

There was a time when I was busy trying to change the world and you were busy enjoying life when we'd sometimes sneak off together and share a pitcher of beer at the Captain's Quarter. 

We talked about everything. 

And we had fun sitting in the dark, dank watering hole. 

That's how I see you now. 

You were in your 50s then, with a Babe Ruth body from playing golf every day, and constantly busy with a boatload of friends. 

We clicked beer mugs and toasted being together again. 

Today Che and Sarah will take me out to celebrate Father's Day and I wish to God you could be there Dad. 

Lord you would love them so. 

I'll get a beer today in a frosty mug and toast you like I do every year, and I know that you'll take a moment to step away from the carnival of Angels you drink with at Heaven's Dive Bar, to tip your mug back at me. 

I love you Dad. 

Happy Father's Day.

Feeding Turtles

Now that schools out, Che's taking to accompanying Lainey on her

Morning drag of me through the neighborhood, which we call "exercise.

Down the street, behind the Library and the school, there's a path through the woods. It's a spectacular trek, dotted with lagoons, ball fields, patches of thick woods, an outdoor assembly ground and a playground for kids.

The lagoons are stocked, beaming with fish and turtles, which Che loves to feed. 

Everything about Lainey dragging me for morning exercise, and what's involved, has changed because of Che. 

She has to dress right before we leave and it's usually some theme. She's a Fairy, a police officer or a spy. I never know. 

Then she packs, something I never found necessary. Lollipops, Gold Fish, gum with food for the Turtles thrown in a backpack with other miscellaneous things she may need. 

It weights 32 lbs and I know I'm going to carry it soon after the walk starts. 

I use this time to smoke a lot of medicine. 

A lot!

As Che yells she and Lainey are ready, I eventually join them after enjoying personal hygiene products. 

She hands me the lease and, Lainey immediately jerks me out the house so quickly Che has to run to keep up. 

We find a pace and stroll along tall Pine Trees, a football field, a large lagoon full of egrets, Lilly pads and frogs.  

And we talk. 

"Da, when Mom and you are gone, Jacob and I are going to live in our house," she says sweetly holding my hand. 

"What? When Mom and I are gone?"

"You know," she explains pulling me along, "when you're dead."

"Yeah?" I ask, completely intrigued. 

"You're old Da, so you will die first. Then Mom. So Jacob and I will get married, move in, and Lainey and HopHop will already be there and we will take over your bed. We will change Cassidy's room to be my office and for my art supplies." 

"You are your Mother's child," I smile. 

"Jacob will take care of the animals because I'll have to work," she continues. 

"You two have really thought this through."

"But," she sighs, "we will also have a place in New York and the Beach."

I howl in laughter. 

The picturesque lagoon teams with fish and turtles accustomed to being fed so they flock to Che holding a stick of celery, which they eat from her hand. 

She squeals in joy and actually pets one. 

"Mom has to come!" Che proclaims. 

After the turtles are full, we have snacks and I learn Che's belly button, an innie, is big enough to hide a "Smarty."

Dragging me back, we talk about things we're going to do and what Mom's got up her sleeve because Sarah forever comes up with the most wonderful excursions or things for us to enjoy together. 

Before we make it back she's already playing with a neighbor. 

Inside I unleash Lainey and collapse on the sofa.  

As soon as I can, I smoke some medicine. 

Sarah gracefully floats in, immaculately dressed, taking a break from the several billion things she manages, asking me how it went. 

"Well," I begin slowly, "she really wants you to come so we have a family time feeding the turtles."

"Of course," Sarah laughs, pouring a glass of Lemonade. 

"But then after we're gone, she and Jacob have it all figured out."

"What?" my wife asks. 

So I let her know what's coming. 

Family Pier Pressure

Want to go to the Beach?" Sarah asks, munching on a veggie burger.  

Sighing heavily, I shake my head, "Not today."

"Che you want to go to the Beach?" she yells, turning her attention elsewhere. 

"YEAH!" she screeches, racing to her bedroom to change. 

Sarah puts on a bikini and packs a cooler. 

They're excited and as I watch them apply suntan lotion, I feel deflated. 

I'm so tired.

All of the time.

But there's no way in Hell I'm not going with them regardless of how bad I feel. 

"Yeah," I finally say, "Dad's coming."

"YEAH!" Che explodes. 

"Put sunscreen on," Sarah says, lovingly rubbing my shoulder and shooing me off to get ready. 

So we go to the Beach. 

"We had to get out," Sarah says with her toes in the sand. 

"Yep," I say, lost in the love of a wonder of a woman. 

"Da, get in the water with me," so I grab a chair and sit beside Che, submerged in a Tidal Pool pretending she's a Mermaid. 

Fairy Health Care

 

Dad, if you drink enough water you can live to be a hundred," she says, dressed as Fairy, walking our dog Lainey. 

"I drink water," I reply, lagging behind them. 

Lainey jerks the leash and she and Che take off in a dead run, fairy wings flapping behind her. 

Pausing under a tree, I catch my breath under a brilliant blue sky. 

In the distance I see that they've turned and returning in the same dead run. 

Stopping directly in front of me, showing no signs of expending any energy at all, not out of breath or flush, and looks exactly like a beautiful Fairy missing her two front teeth. 

"I want you to live to be one hundred," she says seriously, looking me straight in the eye. 

"Well, me too," I laugh. "I'm giving it my best shot."

Turning she grabs my hand and we resume our walk. 

"You drink lots of water Dad. It makes you healthy. That's why I am so healthy."

"Got it," I smile as Lainey drags us to the woods. 

The most civil of disobediences

 

Most every morning Lainey drags me for a walk, down the street, behind the Library and the school, there's a path through the woods. 

It's quite the spectacular track, dotted with lagoons, ball fields, thick patches of woods, an outdoor assembly area and a playground for kids. 

Over time, I've become friendly with others regularly walking the same path at the same time. 

We greet each other, chat, joke and bring a bit of spark to the day. 

When I miss walks, they notice and they fret, wonder, even pray for me. When I return, they celebrate.

So one of them, Gordon, decided to get everyone together for Bloody Mary's, and a bowl, to celebrate us all. 

And that we did!

I think life's a gift to be enjoyed and not a prison sentence to be endured. Find joy every day is the goal of living. Break out of whatever, or whoever, holds you back from laughing. Even if a few rules are broken.

So today, here's to my friend Gordon, who orchestrated the most civil of disobediences resulting in a community of laughter. 

And here's to all of us trying to have as much fun making joy every single day.

YA VOLL HERR KOMMANDANT

This is not the former drummer for REM but the other one from a long time ago. 

He is leaning over from his berth in the sleeper on a train traveling from the Czech Republic into Poland. 

A few moments after I snap this picture, the train pulls to a halt in the middle of a snowy, black night as the border patrol boards the train to inspect passports. 

Bill Berry and I are the only passengers. 

We've rearranged our cabin by using a screwdriver to take out one of the 3 births so we have more room. The extra bed's in the corridor of the train. 

This is, of course, the first thing the Polish border patrol sees as they bang on the door to demand our passports. 

When we left Prague, we purchased copious amounts of Pilsner Urquell and the empties are rolling around on our cabin floor. 

The train's comprised of six cars and one conductor dressed in a black double breasted coat with gold buttons and matching cap. Two of the buttons are missing from his coat. 

When he brought our dinner, he found the extra berth laying in the hallway and burst into uncontrollable laughter but the only words we understood were "crazy Americans."

Our conductor's nowhere to be seen when the border patrol stops the train. 

Everything is suddenly very still and quiet. We can hear ourselves breath. 

BAM-BAM-BAM!!

Guards pound the door after pushing the discarded bed out of their way, imposingly stand with flashlights and demand our passports. 

This is when it gets weird. 

Wearing only his "tighty-whities" Bill leaps from the top berth, snaps to attention, raises his arm in a Nazi salute and quotes Sgt. Schulz from "Hogan's Hero's" shouting, "YA VOL HERR KOMMANDANT!"

In the bottom berth, I cover my head with my blanket, sticking one hand out so they can take my passport. 

Ignoring me, they inspect Bill's passport for a long time while I stay under the blanket with my head covered. Someone snatches my passport and returns it to my hand a few minutes later. 

Without saying a word, the guard snaps Bill's passport shut and hands it to him indicating we may proceed.  They exit quickly kicking the empties rolling on the floor. 

Pulling the covers down, I see Bill's standing there grinning at me. 

"I should have said 'Seig Heil'," then starts yelling it out loud lest the guards might still be within earshot.  

The old train lunches forward and we slowly start moving. 

"I gotta find the toilet," he says, heading down the corridor in his underwear. 

I fall asleep, clutching my passport, as the train rolled down the track towards Auschwitz.  

Things got really weird after that but that has nothing to do with this picture. 

My Early Buddy

 "Da, who's going to be my 'early buddy' when you die?" Che asks, holding my hand as we walk her to school. 

"I dunno Kiddo. Ask your Mom."

Letting my hand go, Che turns towards Sarah. "Mom whose going to be my early buddy when Dad dies?"

Her eyes lock mine for a second as we share the moment. 

"I have no idea Honey. I hope you'll be sleeping late by then," she answers. 

Mrs. D, our tremendous crossing guard, blows a whistle, yells, "Good Morning! Come across!" so Che quickly
kisses us goodbye and joins 30 other small kids lugging huge backpacks.  

Holding hands as we return home, Sarah mimics, "Who's going to be my Early Buddy?" and we burst into laughter as we dissect it. 

Che was so matter of fact in how she asked, as though "Did you pack my lunch Mom?"

"Hopefully, she will be a teenager and not need an Early Buddy," Sarah quips.

We laugh again at our "Love Child" before wandering into speculation over how Che processes things. 

Later, our friends Mike and Hania are passing through town and take us out to a dog friendly lunch. 

"How's Che doing?" they ask. 

"Well," Sarah laughs answering, "this morning she asked who's gonna be her 'Early Buddy' when Mike dies." 

Hania and Mike stare with blank faces as Sarah and I crack up at the comedy of it all, until we realize we're the only ones laughing, giggle to a stop and resume talking. 

We have our own language I suppose and that includes Che, who handles things in her own unique ways, like freely bringing up very practical questions.

I'm almost always up when our daughter wakes, regardless of the time, so if I'm not around to sit with her in the predawn darkness, who will?

Che has complete faith in Sarah's answer and moves on and we wait to see what she'll want to know next, amazed, proud and in marvel of the ways she works things out. 

I missed her school Art show because I had to be at the Mayo Clinic for my monthly injection and a MRI. Sarah explained where I was, brushing it off as no big deal, and Che was cool with it, insisting only that she be allowed to wait up on me to get home. 

We learned the test results and the cancer's grown but otherwise I'm doing great! Except for continuing to drink, I'm the perfect patient. 

"Da, I don't know why but I feel like crying and taking a nap," she explains after a friend's birthday party the next day. 

Sarah and I share the look and since then we're content to be together at home. Che plays with her friends but quits earlier than she used to so she can be with us. 

Nothing's really changed though they'll be more trips to the Mayo Clinic in our short term future. That, and I'm not enjoying the red wine I like in the afternoon. 

Putting Che to bed, Sarah and I watch a movie where, like everything we watch someone has Cancer or dies, the guy dies. 

Sitting on the sofa, Sarah and I sit in silence staring at the screen. 

"Well," I snicker. "That was good."

Sarah gives me the look, and our eyes meet, and I see another entire Universe full of love, and we explode in uncontrollable laughter that lingers for the longest time, well after the blackness of night. 

Ready or not

"I  don't know," Dad sighs irritably. "What do you think Mike?"

Mom, David and I are in his Hospital room where he's been quiet until now.  

"About what Dad?" I ask, putting a hand on his knee.

His hands are in his lap and he's wringing them as though washing.  

"I think I'm ready," he says softly, sucking all the air out the room.

The room is dim, monitors are beeping, hallway noises intrude but it's as quiet as when the earth was without form and void in darkness. 

"OK Dad," I say, watching him watch the wringing of his hands, "if you're ready, that's okay."

David rushes over and tells Dad Jesus is ready for him if he's ready to pray, which David does as Mom moans and then quickly collects herself. 

Dad moves to Hospice and for the next 3 days all manner of family and friends visit to say goodbye. 

At the same time though, he's telling us about others who are long dead, calling some by name before sliding off into a seemingly private conversation with himself.  Three days after moving to Hospice, Dad dies. 

A few years later, now doing Hospice work, I visit for a patient whose wife asks to speak with me privately after I'd met with him. 

"I can't take this anymore," she softly cries. "I am ready.  I want to go before him.  I don't have a preacher. Will you be my preacher?"

A few short months later, I hold Liz's hand as she dies, leaving her lost Dementia husband behind.

Like Dad, Liz confesses she's ready to die. 

I find myself pondering what exactly it was they were ready for?

Certainly both indicated they were ready to stop living life as they'd always known it and, perhaps, that's all there is to it. 

They were sick and tired of being sick and tired and decided to stop.

I can wrap my brain around that. You can't see things getting any better so you surrender, accept it, stop participating in being sick and tired. Everybody reaches the point when they stop beating their head against the wall, opting for something, ANYTHING, else! 

Or maybe they chose nothing else over being sick and tired, just acceptance of death. 

I certainly can't blame them. 

They were fighting the good fight but abruptly reached out of the ring to ring the final bell themselves, which is certainly not what anyone expects. 

"Liz," I ask, sitting on her bed, holding her hand, "I understand you're ready but I'd like to ask you something."

Her eyes are closed and she squeezes my hand. 

"What exactly are you ready for?"

The only sound is her breathing, the slow rise and fall of her chest beneath a pale blue nightgown. Her hand remains in mine. 

"I see them," she whispers, as though sharing a great secret. 

"Them?

"Them," she says with a half smile before falling asleep. 

It's natural for those near death to have visions of family and friends who've died. They seem to function as a sort of welcoming committee for someone fast approaching death.  

Come to think of it, my Grandfather told me of marvelous trips he was taking with long dead relatives as I stood beside his bed listening and asking, "Who," "What" and "Where"? 

Is this what they are so ready for? 

A family reunion?

No dead relatives are dropping in on me yet but I wonder about these things, old memories rising from their graves in my mind, usually in the middle of the night when all's quiet and still. 

"Today I set before you life and death ..." the Bible says, "so choose life that you may live" but the unsaid but implied opposite is also an option, so you could choose death.

"DA," Che's voice cracks in the predawn morning chasing these prayers away.  

In the darkness I rush to her room, kiss the top of her head and we cuddle on the sofa as the stars begin fading. 

Sarah floats in, beautifully dressed for the day, ready to dive into another impossible list of things that must be done now.

"I want Mom's favorite toast for breakfast Da," Che announces as light pours through the windows chasing away the darkness.

Recalibrating

 

"I bet Micheal's glad he didn't go," she says. 

"She" also has cancer and knows the unmitigated joy of missing a regularly scheduled appointment.  

In the car with 16 yr-old-living her-best-life Cassidy, they breeze by the house just after we'd returned. 

Leaving for the second visit in three days for the Mayo Clinic, Che's excited for a day with Mom and Dad doing fun things together in Jacksonville while Sarah and I are "focused and prepared."

Just across the Thunderbolt Bridge, Sarah zips in for gas and notices the tire pressure light's on and pulls up to the air pump.

My wife is both buff and bad ass which is always exciting. 

Putting air in the car tire, her amazing strength breaks the nozzle and air rushes out the tire. Using Super speed she puts the cap back on, drives us to Goodyear before the tire goes flat, makes arrangements for a replacement, cancels the appointments, walks us home and makes lunch.

A Wonder of a Woman, I tell you.

Che's totally bummed and sulks. 

I'm as giddy as I was skipping Mrs. Johnson's 12th grade English class at Groves High School because I was totally unprepared for her insistence of completing homework before attending so I opted to drink beer with Gene Prevatt instead. 

I now open a Budweiser in Mrs. Johnson (now Petricio)'s honor and my good fortune.

At the same time, Sarah's already recalibrating, redirecting her focus, preparing for other things that must be done. 

Che mopes before laying on the sofa lost somewhere on her IPad. 

I want to party! 

Naturally, a train wreck of collapsing emotions happen over the next few hours. We live life raw, close to the bone, grasping for normal things when nothing's as it was before. 

For the next two days, we hold up at home, retreating into ourselves for long bouts or squeezing tightly together to watch a movie. It's one or the other.  All or nothing. 

Gradually, over three days, each of us rally after fighting like hell to get back near the "normal" we were living before. 

It's hard. 

The appointments are now rescheduled, Che's a whirlwind of energy again, Sarah's doing wondrous multiple tasking and I'm back to concentrating on the two things I need to do.

Stay alive. 

Have as much fun as I can which means finding the daily joys of simply being here!

It's hard work no matter how well you are or how sick you might be!

When I went back to Mrs. Johnson (Patricio)'s class, I still had to turn in the homework. I'd merely deferred my obligations.  

We've recalibrated now, back in the trenches of living, fighting for joy everywhere we find it, squeezed together, giving it everything we got!