The Adjustment Bureau

Maybe the mind is the last thing to heal.

I’ve found myself unexpectedly slipping these last couple days; at least, mentally, for brief intervals losing what I would call the essence of “me.” I’ve snapped at Heidi for making fun of my driving directions; at Brody for spilling two sodas at a baseball game.

I’ve had to drive myself to the gym and crank, really crank – or yesterday, hit the pavement and run – to reconnect the pieces.

Because what’s left is all the little unseen things. It’s about trying to slip back into the normal pace after 3 weeks away from it. It’s about realizing that your son looks fine on the outside, but that he still can’t walk up a ramp, or sit on my shoulders, without getting exhausted. It’s that my 3-year-old daughter is stronger than my 6-year-old son.

It’s about all those little fears: What if the healing stops here?

That’s not the way it’s going to be; but those are the things that nag at you.

***

I climbed 175 stories of stairs today in 30 minutes. That’s not a typo.

And after I did it, I felt better.

From there, the day just kind of fell into place.

I took my mom and the family out to dinner. We went out for Indian food which, our kids, surprisingly, love. Beckett chowed down. Brody ate well, too.

Then we went to the press screening of Rango; the new animated Johnny Depp western. Totally awesome; and funny.

The day ended with some reading and hugs and kisses. And now this.

I don’t want to go on tonight. I spend too long at computer screens as it is throughout the week. I like to try to stay in the real world on weekends.

Cheers,

Ed, Heidi, Beckett and Brody

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Of Mice and Men

Beckett and Brody - December 2010

Last night, after cuddling on the couch and watching some TV; after brushing and flossing; mid-way through the four of us lying together in our master bedroom, reading books, the dam finally burst.

That tough-as-nails exterior that Beckett wore through his fall into the depths of Guillain Barre and the strange, miraculous rise out of it, shattered to pieces.

He lay in bed, trying to fight back tears in front of his mother, his sister and I. We could watch as he finally gave in to the bizarre flood of experiences and emotion and what – what did his body and mind just experience? Whatever that is, whatever that was, he gave into it.

Heidi and I can’t even begin to appreciate what it is that we’ve just gone through. I don’t mean to belittle Beckett – because he is intelligent, and brave and strong – but I can’t even begin to comprehend how a 6-year-old mind makes sense of what just happened.

“What is it?” we asked Beckett.

He covered his eyes. Then: “Nothing.”

“You can tell us,” Heidi said.

“I want to go back to the hospital,” Beckett replied.

***

Needless to say. That was not the response we were expecting.

In a way, though, it makes sense. The constant attention; the gifts; mom and dad sleeping with you; the sense of security that close space and the family enveloped around you can bring.

Later that night, when Beckett and I were alone; and laying in his bed together, he later explained that he was afraid of the dark and, more precisely, afraid of sleeping alone, in his bed, where he started to get sick.

“What if it happens again?” he asked.

“It won’t,” I assured him.

“I want to sleep with you and Mom,” he said.

“You can’t,” Beckett. “But we’ll be right outside the door, in our room, if you need us,” I said.

“But what if you’re asleep?” he asked.

I laid with him until he fell asleep. His body started the gentle tremors that begin with the first stage of sleep before 8 p.m.; by 8:15 p.m., he was out cold.

He didn’t wake up until 7 this morning.

For what it’s worth, I slept until 5:30 a.m. – then got up for work. It was, hands down, the best night of sleep I’ve had in 18 days.

***

Beckett had his first day of school today. He got an 11 out of 10 on his spelling test (the 10 main words right, plus a bonus word). He had to rest some; from 9 a.m. to 9:30 a.m., he rested in the nurses office, but all-in-all, it sounds like today was a good first day back, albeit a half-day.

He starts his outpatient occupational therapy tomorrow back at Cardon Children’s Medical Center.

Heidi tells me he was tired when he got home from school; though upbeat.

When I got home from work at 5:30 p.m., it was like a normal day. Beck and Brody bust out the door screaming “Daddy!” at the top of their lungs.

Honestly, it looked like it did 3 weeks ago, like nothing had changed.

And today, it felt like that a little, too.

***

I continue to be amazed by the outpouring of support. And while I’m not fully prepared to delve into it yet, I’m a convert when it comes to belief in the power of prayer.

I’ve had, we’ve had, an exceptional number of people – friends, family and, perhaps, most importantly, medical professionals – tell us what has happened to Beckett, the speed of his recovery, is truly a miracle. I’ve had very analytical people whom I’ve never heard use the word “miracle” before, use that word.

I’ve had numerous people tell us they couldn’t do what we did; or imagine what we’ve gone through. And yet, the whole time we were doing it, in some ways, it felt easy(ish). It was like there was a wall of love, or support, always lifting us up, always giving us strength, always helping us find whatever it was that we needed to stay calm.

I used to get nervous about a misplaced comma in a story I edited; and sometimes lose sleep over it. Yet, except that one night, about mid-way through this whole thing when Heidi and I “discussed” for 10 minutes, our family unit, our bond was strong and thoughtful and calm.

I really believe that the love and prayers that each and every one of you sent played a big part in that.

Thank you.

– Ed, Heidi, Beckett and Brody

Into the Unknown

Beckett and Brody - San Pedro Riparian National Conservation Area - Cochise County, Arizona - Janaury 2011

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

T Minus 2 Days

Ed, Beck and Brody - October 2010

Nothing too dramatically new to report here. Beckett continues to make great progress.

He had no therapy today – there is none on Sunday. But he did have several visitors, including his friend Jack and his family.

We’re very ready for Beckett to come home. Today is his 15th day in the hospital. 15 days of limited outdoor time, crazy schedules, missed school and Brody being shuttled from one place to the next.

We’re actually going to see if we can get him out tomorrow. Beckett is ready; and save a few small things, it’d be tough for most people who saw Beckett today to know that just a week ago, he could barely support his own weight on his legs.

His only major issues are stamina and strength. You can notice it when he tries to jump or walk long distances. But something tells me before I know it, Beckett will be by my side again on my running excursions.

This hospital is full of inspiring children and adults. There is a girl in her early teens here recovering from a heart transplant; she is strong and kind. It’s amazing to see how resilient children are; how much more like “adults” they seem to handle their hospital care than actual adults.

It’s amazing to me that Beckett has never really complained the whole time he’s been here. How does he not have cabin fever? How is he not going stir crazy? I go insane after 24 hours in this place; he just crossed the 370-hour mark.

Heidi and I used the time we had at home this weekend to do housework . Our front year looked so bad it looked like nobody was living in our house. We have a jacaranda tree. Instead of losing their leaves – more like sticks with odd fern-ish growth on them – they lose them in the spring. They make a mess of the yard and the front patio and the driveway.

We mopped floors, cleaned out a couple rooms, tried to get things back to normal. Normal … routine. Some people complain about routine. I miss routine.

I can’t wait to have my babies all back under one roof; to cuddle up on the couch and read books or watch TV; to take a trip in the car – like to a movie, or something – together, as one unit, once again …

Good night,
Ed, Heidi, Beckett and Brody

Up and at ’em

They don’t waste time here; even on the weekends.

It’s 10:50 a.m. and Beckett has already had 3 therapy sessions. They woke us up at 6:30; we showered and ate and by 8 a.m., Beckett was strapped into his safety belt and walking down the hallway.

We played balloon volleyball; bean bag toss tic-tac-toe and stuffed animal basketball. And he did some fine motor/finger and hand skills the morning, as you can see in the video above.

Later in the day he walked a good portion of the St. Joseph’s campus (this place is huge, it’s almost a mile long). Then he went on a bike ride; cruising on a trike across one tunnel to another portion of the hospital, down the elevator, through the main lobby and out onto 3rd Avenue, then onto Thomas Road. He probably did a good mile on the bike. He kept his feet straight and upright through most of the ride.

More good signs of progress.

Throughout each of these exercises, Beckett has to stop and rest. Extended exertion still exhausts him, but he seems to go a little farther with each day. He even did some balance work today.

Now he’s resting; watching Spongebob Squarepants.

In 10 minutes, we go to another therapy session. Good stuff.

– Ed, Heidi, Beckett and Brody

Weak With Progress

So long, St. Joe's?

Beckett’s recovery, 13 days into this ordeal, has been truly remarkable. A boy who was almost completely paralysed 9 days ago, now can walk, and jump, and use his hands to write, and poke and grab.

It’s truly incredible. And yet, despite all the progress, despite all the way he has come, he still has a very long road to hoe. His legs get tired in the time it takes to stand and brush his teeth. And running – that’s not quite in the cards yet.

These things, too, will come back in time.

To me it simply serves as a reminder how many aspects of our daily lives we take for granted. It’s not just that we can walk; or can stand, but that we can walk and stand for hours at a time. Each little step towards his old self is a new challenge, a new obstacle to overcome. In some ways, it really is like watching a baby learn to walk – they can take those few steps at first. With each day, their legs learn to support more weight, for a longer period of time. With each day they become stronger.

When Beckett does get out of here – Tuesday remains our target date – life won’t instantly return to normal. He may only be able to do half days to start when he returns to school. It’s amazing what the fatigue does to him. He’ll have to continue to receive physical therapy. But at least this constant cycle of one of us sleeping in hospital beds; of our family being broken and apart each night, will finally come to an end.

I know I can’t wait for the first day all of us will be in the house together. The last time was the morning of Friday, February 3.

I stupidly watched “The Crazies” last night before I went to bed. It’s another in a long line of “government experimental virus escapes – turns populace into zombies – starts the Apocalypse”- type films. Not bad, but not great, either.

Regardless, it made me have end-of-the-world zombie invasion dreams last night; which triggered some very early morning deep thinking about death and God and my comfort with both.

Needless to say; I’m not fully comfortable with either.

I believe in God, a higher power -very deeply – but I don’t know what I believe. I fear death, but I do little to confront that fear.

I realize this much: you can’t talk to God when you need God; and then turn your back when you don’t.

How many times can you get away with that stunt?

***

Beckett has had a really good couple days. As I said yesterday, he went to the Arizona Science Center yesterday – although they didn’t let the kids see BodyWorlds.

Today, he went to Starbucks or ice cream or both. His therapy has consisted of him climbing stairs, riding bikes and taking walks outside. Tomorrow, I get to do my first full day of physical therapy with him.

We did a repeat of last Friday night. First some school work, then movie night in the hospital bed. Tonight we cuddled and watched Star Wars I – the one with Jar Jar Binks. I remember disliking it when I saw it 7 or 8 years ago; but I quite liked it tonight. Maybe it was the company …

St. Joe’s, in case you hadn’t guessed, is a Catholic hospital. That means fish on Friday. Let’s just say: Hospital cafeteria fish? No thanks.

Luckily, our friends Scott and Traci made dinner for us tonight. It was some super awesome taco salad. WOW. Beckett and I chowed; and there was desert, too. Chocolate chip cookies.

This kid’s sickness is gonna’ cost me 10 pounds in the belly.

***

Spring training starts a week from today. 15 Major League Baseball teams call the Phoenix metro their spring training home, which pretty much means my home city is the coolest place to be in the whole country in March. On just about every day in March, there are 7 or 8 MLB preseason games being played all within 30 miles of my house; and a few just a bike ride away.

It’s sunny, typically in the 80s, and it calls you to play hooky – a lot – to sit in the sun, sip a soda or beer, and take in a perfect spring time day.

When all this went down, I thought to myself, man, I just want to be able to take Beckett to a spring training game – sit in the bleachers with him – and enjoy his company.

I can say with a fair degree of certainty, it looks like that’s gonna happen. Time to snag some tickets for opening day.

In fact, I think I’m going to do that right now.

– Ed, Heidi, Beckett and Brody