I wrote this entry early on the morning of Monday April 13. When I wrote this, Pablo had been in CHLA for 12 days. He got out of the hospital around noon that day.
It's the only post I've never finished or published. My rule is that I don't edit my writing, and I write straight through, publish and walk away. If I did it any other way, I'd still be writing a post from July. On April 13, there was a computer glitch when I went to upload what I'd written. I thought the entire post was lost, so I never published it. Turns out half the writing was lost. But some of the good stuff re-appeared in my drafts folder.
This evening, when I sat down to write about the day's events, I saw went back and re-read this post, much of which is about faith. It jumped out at me. We talked a LOT today about faith. So, for the first time, I'm serving up leftovers on the Pablog.
And here they are:
This may not be the most uplifting post. But it does involve hope. Like, we hope that this is Pablo's final hospitalization. We hope that we can get our lives back to normal, with our home as the center of the family. We hope that Grady no longer has to go away to his dad's house for long periods of time, like he has for the past two weeks. We hope that our family home can become a place of nurturing, quiet and fun once again.
Most significantly, we hope that Pablo's cancer does not recur. There it is. I haven't written those words up to now. Or maybe I have and it just feels real today? There it is: the scary, woolly, blazing truth: we have a single, deep, real hope for Pablo in this life.
We hope that his cancer does not come back. Baseball? Grades? Punctuality? Observant of household rules? Sure. But our greatest hope is the other, greater, thing. Jo Ann and Grady and I, and our family, and you, our worldwide family of friends, have a giant hurdle ahead: We have to let go—soon—and let Pablo gravitate back to his spot in life. He has missed what would have been his year of kindergarten. So what? He's gained so much more. He has blossomed and he has become our best friend. And what a best friend he is. He wakes up happy and keeps us laughing, he's always hungry, and he loves all our favorite songs.
Pablo's life, and our lives, have taken an unexpected path. But we'd never call it a diversion, or a wrong turn. It's just the cards that the universe dealt us. We can bitch about it and spit in the eye of God. Or we can inhale, exhale, inhale and get with the rhythm of life and abandon the false notion that we are the actors, director and stage technician in the play of life.
In my acceptance of where we are, I am visualizing Pablo's sixth birthday party on June 21. I am visualizing Pablo asking me to go out and ride bikes. I am visualizing Pablo being an angst-addled teenager. I am visualizing Pablo arguing with me about which Fitzgerald short story is the best, and which ones he simply phoned in for the paycheck. In my mind's eye, I can see Pablo pushing me away and pulling me back in as his heart and his volatile young emotions surge and swing within. And I can see the smile on his mother's face as he illustrates the art of Being.
I am visualizing Pablo carrying me to my grave. Damn, that's a nice iCoffin. And—oh!—is that a digital headstone?
This visualization is one sliver of faith in action. Faith is what you fall back on when you run out of moves. That sentence came into my head and out of my mouth at my brother Scott's memorial in 2004. At that time I did not anticipate my life carrying me to a situation more appropriate for that statement than the one that lead me to standing next to my brother's open casket. But my life has brought me back to that question. And here we are.
So whether you believe in a religious God (Jo Ann does), or the general concept of a universal God (I do), or you are agnostic, or you choose not to make a choice, today is a day when faith comes into play. For us it does. As Pablo leaves CHLA for what we hope will be his final long-term stay, we will give up the certainty of facts (there are none) and we will jump headlong into a place where grace and balance play the central roles in life. Insistence and control are outlawed in the place we're heading to.
At dinner on Sunday (April 12), Jo Ann and I began to share our feelings about the current in-patient stint. We don't actually have a lot of time to connect and speak because we are either changing shifts at CHLA, the off-duty person eagerly exiting, or I am breezing into P's room to say good morning on my way to the office or good night on my way to bed.
Our conversation veered into how much we cannot stand being at CHLA anymore. Everything about it is grating on us. The 800 mile walk from the parking lot to the elevators. The guy at the front desk who never remembers who anybody is, even though even other person who does his job is on a first name basis with us. Having roommates. The TVs are botched and the audio monitors crackle like AM radios. It's not CHLA's fault. We're just ready to be done. 11 months is a long time. At least when you live in a college dorm and have no personal boundaries, you get to go home for the holidays and spring break. We haven't had a break. Or a kegger. Or—OK, I better stop there.
...and that's where the lost post ended...