Into the Unknown

My son comes home tomorrow.

Hell, we all come home.

This home, this office desk which I sit at tonight, has been something of a thoroughfare these past 17 days. Nothing settled, nothing permanent. Just bodies passing through, on their way home or on their way out to a hospital, or some temporary home.

Brody has been shuttled to grandparents, her aunt’s and uncle’s, the homes of friends, and on to school and daycare. Beckett has sat in his room, one caregiver coming and another going, like forced clockwork, around 5 or 6 p.m.

This cycle is abnormal, and bizarre and taxing. Spaces can be filled with love and life; or they can be strangely cold and silent, left unfulfilled, except by the papers, and furniture and appliances that delineate functions and spaces.

What this place needs is the chaos that life brings – the screaming, the laughing, the smells of a kitchen in use, the toys in motion, the muddy footprints on the floor, cookie crumbs in the seams of the couch. You might be prone to see some of those things as nuisances, until they aren’t there at all.

***

There was definite excitement in the air though tonight, as Brody and I made a quick dinner stop at the hospital. We cleared more stuff from the hospital room. It, like a busy home with busy children, tends to acquire things over the weeks – little gifts from nurses and doctors; drawings and half done school work; gifts from across the city and country, from lots of people who care. People just like you.

It’s hard to know what the coming weeks and months will bring.

If nothing else, the hospital has been predictable. Regularly scheduled checks of vital signs; and a daily routine of physical and occupational therapy. Meals at set times. Wake-up calls when the day is set to begin. The hum of beds on wheels; the buzzing of 50 patients and their various monitors. Impromptu doctors meetings and family gatherings. Periodic peep-thrus into the room from other patients and families, in need of a friendly face to share a brief conversation.

Today, Beckett, Heidi, Brody and I talked to a man who lost his hand in an accident. Beck had to know: “What happened to your arm?” And so the man told him – kindly, like so many people during his stay – exactly what happened. He was in a car accident. His vehicle flipped four times. He was ejected from his vehicle. One flip later, it pancaked. He told Beckett, “Always wear your seat belt.”

In an odd twist of fate, he told Heidi and I later, after Beckett has stopped paying attention, that first responders told him if he had been wearing his seat belt, he would’ve been killed when the car was crushed. He had forgotten to put it on; was just pulling out from a gas station when he was hit. As for telling kids to wear their seat belt, he mused to us: “You’ve gotta’ play the odds.”

He was getting out in a few days. A prosthetic would cost $30,000. It didn’t appear as if his insurance would pay.

He wasn’t too worried about that yet.

“One day at a time,” he said.

***

It’ll be the same for us. One day at a time.

The hospital prepared instructions for Beckett’s school, on fancy letterhead and thick paper, that lays out a recommended plan of action: close supervision, with somebody outside the stall at the bathroom; modified P.E. class with no running, or jumping for a while; somebody holding his hands during walks across campus, lest somebody accidentally bump into him and cause him to fall; half days of school to start, with his time in school each day gradually increasing as his stamina does.

Beckett is still tired in the mornings. It hurts him to stand still. And his joints in his knees and elbows, particularly, are painful in the morning hours – kind of like an older body trying to work out the morning stiffness.

At some point, a conversation with our insurance company probably looms. They only allow for 20 PT and 20 OT outpatient treatments a year. Beckett probably needs more.

Despite his incredible vitality; despite his youth, the inside of body – his nerves in particular – have had war waged against them. And when you see how fast he has made recovery, it’s hard to remember sometimes that the very system inside his body – his nervous system, the thing that tells us when we are in pain – has been shredded. Literally chewed up by his own immune system.

Every doctor and therapist has told us: this will have lingering effects that will last quite some time and with this disease, as opposed to others where therapy is needed, it is very important to respect that fact. Fatigue is real, and important to pay attention to. Overworking the body, in Beckett’s case, is the enemy.

I’m not good at going slow. I like to plow through to the goal (Ironman, anyone?), no matter what the physical – and sometimes mental – cost.

Like Beckett’s beloved Jedi’s, patience, I must learn.

***

While tonight these deeper, longer-term concerns plague my mind, it’s still very clear we’ve passed a significant hurdle, worthy of much celebration.

Tomorrow night, when I go to bed, the circle will be complete. All four of us, resting together under one roof.

I always knew, and yet I never knew, what a truly amazing blessing that is. To have your family, together, at home. It seems so simple, and yet, tonight, as I think about it, it seems like one of the greatest gifts a person could be given.

You can have your Lexus; I’ll take my children, sound asleep and happy under their covers, any night.

***

Something I’ve always thought about as a curious aside – something I haven’t been able to put my out of mind, rather – is the role of fate.

What if I had lost my job this past year? What if we didn’t have insurance? What if our insurance was bad?

Would Beckett have gotten the quality of care he did? What kind of choices – horrible choices, probably – would we have had to have made?

We live in a state – Arizona – that is notoriously callous towards it citizens. This state’s legislature and governor cut funding to people already in the queue for life-saving organ transplants. Even after the studies they based those cuts on were proved grossly inaccurate, they refused to reverse course. The amount lawmakers saved was minimal; with almost no impact on the state’s budget crisis.

Meanwhile, on the federal level, a battle rages over the future of nationally mandated health insurance.

Truth be told, my stance on those issues remains muddled, even after my own experience.

I don’t know the answers. But I know the current system isn’t fair. Beckett’s medical bills will easily top $100,000 – just think about 5 days in the P-ICU and those doses of that crazy blend of 200 individual donors’ white blood cells – and probably surpass that.

Life is a valuable thing. The greatest, singularly most valuable thing, any of us possess. And, somehow, I feel like it is our duty as a society to not only save a life of someone in need, but see to it that they’re given the tools to live the most productive, healthy life possible.

What would we have done? Sold the house? Yup. Sold everything we had? Yup. Begged for money? Yup.

And yet we had to do none of those things. All because I managed to ride out this part of the economic storm. The result of some hard work – and some luck – for sure.

My heart bleeds for parents and caregivers who aren’t so fortunate.

***

I’ve got a big weekend planned if Beckett is up to it.

Forgive me if I soak up as much family time as possible. I picked up four tickets to the L.A. Angels spring training season opener against the L.A. Dodgers this Saturday at Tempe Diablo Stadium. Me, Heidi, Beckett and Brody will be going.

Later that night, the four of us will be going to the press screening of Rango; that new animated movie with Johnny Depp as some lizard sheriff.

Spring (they call it spring in February here in PHX) is a ridiculous time in Phoenix. I assure you, there is no better place to be in the U.S. than in the Phoenix metro in late February and March.

Every Thursday through Sunday is filled with all kinds of festivals in parks from one side of the metro to the other – beer festivals, music festivals, and various ethnic festivals. Tourists descend upon this place from across the U.S. like some annual pilgrimage to soak up the 80 degree days and 50 degree nights. You can roast on some sun-soaked patio by afternoon; and sip on a cocktail by outdoor fireplace at night.

And within 40 miles of one another, 15 Major League Baseball teams kick off the season with 30 consecutive days of preseason baseball in stadiums that hold 8,000-14,000 people. They’re all packed and filled with the smell of peanuts, and hot dogs and beer. The locals build their basecoat tan in those seats in prep for the long, long, long days of summer ahead; and the tourists burn beet red.

Life is good. No, life is grand.

Spring, the season my son is coming home.

Spring, the season my family is reborn; given another chance to do our dance; to do our thing.

Time to get back to living.

With love,
Ed, Heidi, Beckett and Brody