Sunday, August 24, 2008

Everybody Knows This Is Nowhere

The other night Pablo and I went for a walk. The shiny tile hallway in 4 West was our path. Pablo's hands held the black halo of metal that serves as the handle of his IV pole. He was determined to push his gangly IV rig without help from his Papa. This was the best option from a physical perspective–the drainage tube that's connecting the his insides to a white plastic bag is awfully short.

As we made it to the end of the hall, we turned around. I had been wanting to ask Pablo his thoughts about his bumps, the hospital, cancer–something. There's an appropriate way to ask a little kid a question so simple that you'll find out what they are thinking without having to spill the beans. So, I gave it a try.

'What do you make of all this hospital stuff?' I asked.

He stared ahead. 'The movie selection here is great.'

That was his response! I swear–an exact quote! I got my whats-going-on-inside-his-head answer and I got to freak out a little. His answer was a total eureka moment to me. I thought to myself, he knows everything that's going on, he's not missing a thing, and none of this is bothering him.

¶ For a week, Pablo has been connected to tubes, wires, drains, direct-to-spine dope infusers. Each day the doctors have allowed something to come off. Since Friday, he's had only an IV line connected to his chest port, and a drainage tube that runs from inside his guts out through his back. Tomorrow in surgery, he'll get back the whole array.

¶ Today, Jo Ann and I sat in his bed and played Sorry! with him. I was playing, laughing, moving my pawns around the board. So were they. But they had no idea that inside my head I was disconnecting the cords and cables and putting Pablo on my shoulders, walking him out the front door of that f***ing place.

¶ A few days a week I ride past the field of green grass in Griffith Park where Pablo and I took the training wheels off his little blue bike. That was a few weeks before his diagnosis. The field where he took the step that connects him to the inner joy generator of children all over the world; that connects him to the connection of connecting; the feeling of utter freedom: moving atop two spinning hoops without the aid of mommy, papa, teachers, babysitters, anyone. You should have seen the smile on his face that day. He couldn't get enough. I was sure that what we were doing wasn't in the instruction manual of parenting. Pablo was pedaling his way across this giant green field, but had no idea how to stop. Without any input from me, he invented his own way: as the bike was angling toward earth, he'd jump off. A bunch of times he landed on his feet. I was p**sing myself with laughter. So was he. That was as much fun as we've ever had together. Major joy and minor dumb on Papa's part. Although he didn't get hurt, he could have. The relationship between danger and fun is well known to all. Next time we go back, we'll drill bike handling and stopping before letting loose.

I ride by that field, and I get fucking hurt and f***ing angry. It happened this morning. A piece of me floats away (hope). A piece of me drops to the ground and tumbles (anger, hate). A piece of me looks right at that field and knows we'll be back there soon (passion). Another piece of me can't look (denial). A final piece of me refuses to feel anything (the trauma survivor's parlor trick).

¶ When Pablo gets released from the hospital, we will take him home. The tumors will stay at CHLA. We will rest him up. We will help him heal. And the minute he is able I am taking him back to that field. I want our life back. I want our summer back. Pablo is five years old. All the five-year-old summer stuff has passed us by. Still his bones have grown into longer, leaner limbs. His mouth has more clearly defined its structure; his words are clearer. His eye/hand coordination is getting sharper by the day. All the tools of youth have become Pablo, and we will have some catching up to do to put these tools to use. With no danger of rupturing the tumors in his abdomen, we can do what we want. When will we get our lives back?

Yes, all of this stuff constitutes the path we are on. It's not a diversion from life. For us, it IS life. But everybody knows this is nowhere. But this is no place to hang around. This is a place to be in, get though, and get out of. Take the experience and run. Plug it into life at the next clear moment.

¶ I think about the people in the park that green grass bike day. Our fellow grass inhabitors. Funny how I remember all of them. The Mexican lovers on a blanket, looking over at us, watching Pablo ride, laughing at all the right moments, shooting concern our way when he fell. I assumed they were both thinking–separately–they'd keep falling in love, falling right off their blanket with the Von's lunch and fall into having a baby and one day bring him to the grass to learn how to ride a bike. Then there was a giant family eating watermelon. The men all wore cowboy hats, the women wore dresses and cut melon and fed everyone. Pablo and I walked by them on our way to the dirt horse trail. We wanted to climb the mountain that had protected us from the sun while riding. We saw an official park ranger sign that warned us of bobcats (or was it mountain lions?) and rattlesnakes. We stood there for a while and looked at the sign, talking about how cool it'd be to see either of those.

But all those people–I keep thinking about them. I can see them looking at us. Were they all in on it? Were they all angels sent to look at Pablo, to make sure he was ready for the wild card of cancer?

'Let's let him have some fun before we bring him in,' God said. 'You angels go down there and let me know when he's ready.'

¶ I'm tired. I can't sleep, which is the body's normal antidote to fatigue. I am tired in places and ways I have no words for. Jo Ann is too.

We are storing energy for things like sitting in a chair for endless hours. I'm storing emotion for times when I need to pour everything I've got into the passion hopper, or ladle some sadness over an entire day. I get happy about things like Pablo cutting a giant fart, or (today) a juicy dump. We both laughed. The corners of his mouth were touching the hinges of his jaw. He was sitting on the toilet, I was sitting on the ground in front of him. We were laughing like a couple of monkeys. It was the kind of scene you'd see in a dream and wake up thinking you might be going insane.

¶ I gotta try to go to sleep. With any luck, I will have a good dream I can tell Pablo about before surgery in the morning.

Remember: magic hour is 7:30 a.m. LA time. The surgery is supposed to take at least three hours.

Please direct all your good thoughts/energy/intentions/love/light to this


Anonymous said...

we are with you so very strongly pablo and family.
beaming divine light straight to you.
love, light, science, faith.
desi, lauren, chris and milo

Anonymous said...

1030a my time...cruisin the internet waiting for a telephone orientation meeting...730a your time. best of with you in thought.

Anonymous said...

We're all thinking about you guys and sending you lots of love!

Anonymous said...

Pablo knows what he has got to do; in the innocence of childhood, his connection to the universe is undeniable and he gets to live in the moment, we seem to spend our adulthood trying to get back to that beautiful space. Thank you for sharing this last entry with us, you anger is perfect, your and Jo Ann's strength is overwhelming and your gratitude for the abundance of your life amazing given the journey of today. Here is to the power of healing light and thoughts of love and support emanating from all around the world.
Love Susan and the gang

Jackson said...

Sending positive energy your way!! (lots of prayer, too)
These children are so amazing to know a child with cancer is like seeing an angel. Their simply amazing, their will. They can be sick as a dog one minute and the next racing a bike down the halls of the hospital, like I said simply amazing!!!

Anonymous said...

Thinking of you all & sending all our love to you. Asa is looking forward to when he and Pablo can play again.

B,L,A, & E

Anonymous said...

Thinking of Pablo and you all and sending positive energy and love your way all the way from Virginia Beach. Pablo is an amazing little boy and will conquer this beast.

Travis said...

Pablo and Family,

Our son also has wilms tumor and we go to CHLA. You are in the best hands... w/ Dr. Stein. Also Dr. Malogolowkin (at CHLA as well)is one of the best Wilms specialist and very active on all studies. Do not hesitate to contact me for anything. Our son Corey's web site is noted below. Keeping you all in our prayers.


Jules said...

Happy, positive, caring thoughts coming Pablo's way from Austin!

~Julie & James

Unknown said...

Ray, Stacey, and Ruby all agree that:


We all just did a family prayer for a speedy recovery. Love to Pablo and the whole family!

The Santamarias