Pablo's second night of chemo went perfectly. He slept through the night again. And he had no gnarly reactions to the chemo. All day and into the night, P was commanding a playful presence that is more like the 'old' him than anything we've seen in a while. Telling that this layer of his personality showed itself while he is in-patient. For a start, it tells us that he doesn't care where he is—when he wants to have fun and be a kid, fun and kidstuff is gonna go down.
I went to the store to buy him a DVD of 'The Little Rascals' since he seemed to like it when I popped that VHS tape into the deck last week in the nuclear medicine lab. Lo and behold, the long tail wasn't working for me and le petit rascals, so I got him the next best thing, a show he'd never heard of called 'Leave It To Beaver.' On the short drive from the store to the hospital, I let myself win the debate over the question 'will he like the Beav?' Central to this argument was the relationship between an older brother and his precocious younger bro, a mom who likes to cook and a dad who pulls his pants up past his belly button. In short, the winning argument held that P might see the Cleavers as a black 'n white version of his own family. Most of this is a joke, of course—everything except the big/little bro part.
When I showed him the DVD set, he looked at is dismissively, saying something along the line of, 'I'm not going to like that. Where's "Wallace And Grommit?"' I was slightly crestfallen. But not about to miss my mark. After dinner, while P continued to protest, I popped in disc one, and let it rip. From the first note of that wonderful, familiar theme song, P locked his attention on the screen. As the show's simple plot arc played out, peppered with Wally and the Beav's pretty damn amazing old skool linguistics, P snuggled into my shoulder and relented. Three episodes later, he was a recounting to Mommy what was going on in the show. Then I started coughing, and had to go home.
By early this afternoon, it was clear and official: I'm sick. I loathe being sick, especially at this juncture in our lives. I want to be active, getting s**t done, present. Being sick means I can't be with Pablo in the hospital—the number one item on our agenda this week. Feeling like I was coming down with something last night meant I had to leave Pablo's room and go home. Many people I know have what I have—funky intestines, dry throat, coughing, feeling on the verge of sick, but not quite committing. Hopefully it will subside with a good afternoon and night of rest.
Jo Ann encouraged me to take a super hot bath, and get in bed. So that's what I'm doing. When I get sick, I get dumb (some people would argue it's not just when I'm illin'), and I need Jo Ann's direction cos I have no idea how to take care of myself. In fact (psychoanalyst alert: on), when I get sick, I crave all kinds of things that are not conducive to repairing the human body: chocolate, going to the movies, anything sugary, anything to check out. This is the first real sicky thing I've had since Pablo started treatment. Something two months ago was verging on a cold, but never took root. So this is new.
One thing that comes up for me is that the thing in me that wants to check out and makes me forget how to take care of myself—that thing—Pablo will not know that in his life. He knows how to accept peoples' help, and how to just be when needed. Me, I'm actually learning from Pablo. So, like so many aspects of parenting, we just have to stay out of the way, and observe, and the lessons come to us.
This afternoon, Jo Ann shared with me that one of our old CHLA roommates is not doing well. We've become good buddies with her mom, who we see all the time in the clinics, in the hallways, waiting for elevators. It seems like every time we are at CHLA for anything, they are too. Our old roomie (it wouldn't be appropriate to use her name on out blog) is a beautiful, amazing, sweet teenage girl, whose cancer was discovered—like so many people's—when she went to the doctor for something simple, like a back ache. We have been hangin around the cancer ward at CHLA just long enough to see that not everyone is winning the battle. It's easy to witness a fellow patient/family's tough day or a tough week when there's a rise of spirit, energy and prognosis at the end of it. Facing a sustained loss of ground affects us on a cellular level. Like most of you might think from time to time 'How would I feel if my child were diagnosed with cancer?' It's a common, healthy contemplation when you are orbiting around our universe as we go through this. For Jo Ann and I, we have a tangent of that thought when we hear of a fellow patient having a tough time, or the loss of a child's life—except the question for us is, 'How would I feel if that were Pablo.'
I am weeping as I write this. I f**cking hate that I have to confront that ugly question in my mind. As optimistic and positive as I am, and really work at being, I'd be a robot if those kinds of dark questions didn't pop up in my mind. Jo Ann and Polly have both experienced this as well. Maybe it's actually a healthy pressure relief mechanism for the human brain? Regardless, when we hear of or see another child losing the day's battle, or losing the ultimate battle—the battle for life—it hurts. Not in a theoretical way. In a very real way. And at those moments, I realize how short a distance my heart has to travel to hit the ground. These days, it's not far at all.
2 comments:
Jeff,
Your posts are so moving & eloquent. Thank you for sharing your family's experience with us. We have been moved, touched, and inspired by your journey.
Peace & Love,
Kastners
Today is my father's 65th birthday, or something like that. I am not one for dates, ages or anything like that. Kind of a shitty way to start something I am sure, but it is late and I am trying to close a restaurant. I generally sneak in a few websites and I keep this one handy to see how the little man is doing.
What I want to say is that my father had polio when he was a child and he has been kicking ass ever since. When I was younger I was amazed at the photos of him in the iron lung with Mickey Mantel at his side and other nostalgia. Something about him being one of the first fully recovered polio survivors. I need to ask him for some clarity on that one, time has a way of distorting childhood memories. Knowing how he has done in all of the years after polio I know in my heart Pablo will be kicking some ass 50 years from now.
night all
Matt
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