Two Years

Payson got diagnosed with Leukemia on May 3, 2017, and the world hasn’t ever been the same.

Like, the stars shifted.  The whole world is different.  Every single thing changed.  In my mind, somehow there wasn’t anything before May 3, 2017.  The pictures on our wall and the people around me and my life full of so many memories better than I deserve tell me that I’m wrong about that, but somehow, I don’t remember.  Not really.  A whole new way of experiencing this thing we call life started that day.

I think one thing lost, that I miss and don’t think about much, was the care-free way we used to live.  The quickness to laughter.  The ability to shrug things off.  Dancing through life.  I cherish those times.  On that day, everything got harder.  Just, harder.  I’ve forgotten what it truly feels like to be on top of the world, totally in control and alive and unstoppable.  I’m not sure that’s ever coming back, I’m not sure it ever could, and it’s OK.  But I miss it.  Continuing on when there’s always just a hint or a tiny tiny shadow of something weighty, that’s kind of just the way things are.

All of this sounds really angsty and navel-gazey and written by somebody who wears really dark eyeliner and listens to too much Depeche Mode.  There’s also so much that we’ve found.  Meaning and purpose and focus.  Depth to our souls that I wouldn’t trade for all the happy-go-lucky in the world.  It’s just that, lots of times, something sparkly is lost in the exchange of experience for knowledge.

Life, for all practical purposes, just keeps moving on.  Like, Payson’s just a kid.  He’s got a thing.  He’s dealt with stuff that sucks.  But he’s a kid.  He wakes up.  He does his thing.  He complains about going to school.  He does chores around the house.  He gets moody.  He plays the piano, he performs in plays, he plays soccer.  He has lots of opinions.  He’s too loud sometimes.  He finds things funny that are so impossibly stupid that no person with a fully functional brain should even entertain with a single thought, but he laughs until he cries sometimes.

Visits to the hospital are just part of the routine, pills every day are just what we do, visitors washing their hands upon entry into our home with a Bill Murray in What About Bob? intensity is just how it is.

Life keeps going.  In one direction.  And there’s not a damn thing we can do about it.

And really, our family is so fortunate.  You don’t spend much time in the cancer fraternity without starting to thank the Good Lord for things you never thought it would be possible to be grateful for.  So many have it so much worse.  That’s always part of the thought process, this new, more acute awareness of suffering and trial that surrounds us.  We don’t take any of it – our situation, our support, Payson’s progress – for granted.  We know how lucky we have been.

So, with life just continuing on, with Leukemia just part of the fabric of our family, how in the world is it possible to sum up the 730 days since every single thing changed?  How to possibly capture the excavation in our souls?  How to express the journey?

Maybe just three things to try to capture the range of this seeming never-ending thing – (1) a super dark time, (2) a super bright time, and (3) the two most important lessons so far.

And also, this day we experienced right after he was diagnosed.  Whoooboy, that was a day! RIP Deer.

(1) The dark time was in November of 2017.  He was in a phase of treatment called Delayed Intensification.  He was bald.  He was pale.  He was puffy.  People would see him who hadn’t seen him in a while, and their breath would sort of catch in their throat.  He was so weak that we setup a little hangout spot just inside our door where he’d collapse as soon as possible into pillows and blankets, where he didn’t have to go up any stairs to go throw up in the bathroom.  And, even in the middle of throwing up, he’d be talking about what he was hungry for.  His counts were non-existent.  He had no immune system, by design.  He had very frequent hospital trips for treatment, and home health visits most of the days that he didn’t go to the hospital. He battled the sticky stuff way too often.

One night during this phase he started to run a bit of a fever, which is a very not good thing.  I remember just this uncontrollable need to just run away, to just disappear, shut everything down and bury myself away and just wake up whenever it was that Payson would be OK.  I remember making my way outside as fast as I could, and just walking.  Wandering.  It was a bitter cold, clear night, and I remember watching my breath as I walked around the park by our house, stopping at random to look up at the stars and feeling their eternity. I remember the cold, totally unrelenting and scary and uncontrollable.  I remember the weight of the helplessness, the feeling that nothing would ever be OK again, that we’d never know anything else but that exact point in time.  I remember questioning why anything at all mattered, why anything in the whole world meant anything.  That despair stuck around for awhile.  I think I did a good job of hiding it.  But it was tangible, and real, and I’ll never forget what it felt like, that night I was closer to darkness than I’ve ever been.

(2) The bright time was June 2, 2018.  Payson’s baptism.  His hair was back.  His schwerve was back.  His little hangout spot was long since abandoned.  He had a hawtt little leisure suit. He still talked about his cravings all the time, but not while he was barfing.  That day, he was surrounded by a giant group of the most loving people, people who had prayed and served countless times during the previous year.  He approached it all with his usual uncanny mix of childlike awesomeness and grown-up wisdom.  It felt like a milestone.

I remember the overwhelming feeling when it was time to confirm him and give him a blessing.  I’ve never felt anything like it.  The light in the room, the totally overpowering feeling of love and perspective, the undeniable peace, the strongest whisper of people that aren’t still with us, but are still totally with us.  The brightness of that moment was the absolute answer to the darkness of the moment that night in the park.  It was a new chapter, and a promise that, no matter what, no matter what, Payson was OK.  Things were OK.  We were going to be OK.

Finally, the two most important lessons so far:

The first most important lesson – People are the thing.  They really are.  The only thing.  Our family has experienced this indescribable web of support and kindness and encouragement and love.  Two years later, and it doesn’t stop.  We are absolutely shamed by the goodness of so many.

People we’ve known and cherished always – old friends and best friends and family – have shown up for us, time after time after time.

People we haven’t known long have become part of our clan, permanently part of our souls.  They are tangible evidence of God’s love for us.

And people we didn’t know at all before this whole thing started have become significant to us.

The people around us are the most important thing.

The other most important lesson – Hope!  The absolute undying energy and life that exist in the concept and reality of hope. 

Hope didn’t end on May 3, 2017.  Hope began that day.  Because without despair, there is no hope.  Without fear and dread and questions and doubts and anger and helplessness and loneliness, without all of these fundamental things that are part of being a human, there is no hope.  Hope is empty without all of its opposites.  It only matters in opposition.

And because of hope, all of the opposites are OK.  We control so little.  We spend our lives on things that are so silly, so temporary.  We worry about so much, but so little really matters.

There is hope.  No matter what happens, no matter what, there is hope.  And hope is enough.

Let’s kick this pig.