Jack recently taught himself to read — he claims so that he could see for himself what I’ve been writing about him.
The results of his research were unpleasing. This website of yours is horrible, he told me, closing the lid to the iPad case with a firm slap. You make me sound like some gargoyle, some gremlin, some enfant terrible.
I peered at him. Was that a sprinkling of French? “I don’t think you’re a gargoyle, Munchie. You can be a bit temperamental. Especially during our hospital visits.”
That place is a medieval torture chamber! he exploded. I need activity! Stimulation! Lebensraum!
Lebensraum? German now. I cleared my throat, ignoring the politically fraught context of that term (WTF, was the kid reading Mein Kampf when I wasn’t looking?)
And my god you write long, he hectored me. You realize 95% of Americans view social media on their phones, don’t you?
I’d like to report that such provocation on Jack’s part isn’t indicative, but that would be untrue. The kid is smallish, but he packs a whole lotta scrap.
I keep trying to warn Ryan that once Jack starts walking, he’s not going to get less ornery. And, well, one day when the Woog takes one of his brother’s toys, he might get a knuckle sandwich in return.
Exhibiting the motivated reasoning of the blissfully ignorant, Ryan dismisses such talk. Jack is my baby brother. Jack appreciates it when I snatch things out of his hands in order to show him how they “really” work.
Fine, Woogie. Just because your parents are always right doesn’t mean you’re always wrong. You do you.
Anyway, Jack’s emerging temperament makes the following things unbearable a lot more challenging for his parents:
- Eating
- Sleeping
- Hospital visits
Speaking of hospitals, headline news from Jack’s latest visit to CHOP:
- The velocity of the Munch’s growth has transferred to his height, where he’s gone from Oompa Loompa stature to the entirely respectable 25th percentile
- Correspondingly, although Jack’s weight has continued to increase, the trajectory has lowered somewhat from Pluto to Saturn.
- Jack hates Children’s Hospital of Philadelphia like the Cleveland Browns hate the playoffs
The echocardiogram in particular was hideous. Jack simply will not lay through the procedure anymore without a blow dart to the neck. My interventions only serve to make things worse/make the procedure possible in the first place.
When the disgusting ordeal was over, I apologized profusely to the sonographer, a very nice woman named Annie. “I don’t get it,” I said. “He’s never been enthusiastic about the echo, exactly, but lately it’s gotten out of hand.”
“It’s okay,” she said. “It’s very hard for children as they get older to sit through the procedure.”
I nodded as I put the sweaty, tear-stained Jack back into his stroller. “Well, if it makes you feel any better, Yin is the only sonographer he’s been a perfect angel for.”
I stopped myself. I was trying to let Annie know it wasn’t her fault that Jack was absolutely awful during the echo, but then it occurred to me that perhaps this remark might make her feel inadequate.
Annie didn’t notice. “Oh, Yin’s working today,” she said cheerfully. She bent over and asked Jack, “Would you like to say ‘hi’ to Yin?”
Jack wasn’t paying attention to her. He was rolling his head along the back of the stroller seat like he was trying to make himself dizzy.
“We would love to,” I said.
The three of us rounded the corner, and there she was, working at a computer station: the Munch Whisperer.
“Yin,” Annie said, “I have a special visitor for you.”
Yin turned around and looked down at Jack. “Well, hello, sweetheart! I remember you! You’re such a beautiful boy!”
Jack squealed in reply and grabbed his stroller tray to pull himself forward.
The woman probably makes six figures, I thought. Babysitting would be a big step down. Damn.
Yin and Jack did the goo-goo gaa-gaa, caught up on old times. As we prepared to move on, I told Yin, “Like I said to Annie, you’re the only one he’s been perfect for.”
Yin laughed. “He’s my buddy.” Then she shrugged. “If I did his next echo, though, he’d probably act up for me too.”
By this point, readers, I’m more than willing to take the chance.
Either Dr. Rychik read my Jack update a while back about the supereon he made us wait, or the Cardiac Center now has the Munch on a kind of Babies Behaving Badly watch list, because the good doctor almost beat us to the exam room.
“Hello, hello!” Dr. Rychik said, beaming. He gestured to the lab-coated woman who accompanied him. She wore rimless glasses and an intriguing expression of professional bemusement. “This is Dr. Fuller.”
We shook hands. “Welcome aboard,” I said.
She smiled. “Glad to be here.”
Had you been in on it a little earlier, I thought as we entered the exam room, you might’ve changed your mind about that.
Once inside, Dr. Rychik turned to Dr. Fuller and gestured to Jack, who was slouched in his stroller watching the doctors with vaguely skeptical irritation.
“And this is the patient, my namesake,” he said. “Jack, meet Dr. Fuller.”
Dr. Fuller bent over a little at the waist and addressed Jack with a sweet, fawning voice. “Hello, Jack. It’s so nice to meet you.”
The Munch turned his head to the side and looked back at her with his trademarked coy smile.
“Oh, brother,” I said. “Knock it off, Munchie. You’re a little young for her.”
The doctors laughed. Jack sat up straight in his stroller and gave me a single, short, declarative bark. I looked at the doctors and shrugged. The kid is too smart for my own good.
I picked Jack up and placed him on the exam table. As the doctors performed their examination, Jack was the apogee of intense meditative calm — as he always is during these exams.
At this point in these visits, his change in demeanor is striking after the sustained hooliganism that precedes it, and naturally I’ve developed a theory about it:
Thing is, these exams are hands-on, personal, with no mediating gizmos or machines to prevent the doctors from channeling all of their attention in its obvious and rightful direction: on him.
We sat down in our usual spot, and I balanced the Munch on my knee. Dr. Rychik briefed Dr. Fuller on Jack’s medical history. The Munch absorbed their conversation with perfect stillness.
Dr. Rychik, who is renowned among hospital staff and parents alike for being “conservative” in his clinical appraisals, was ecstatic throughout this visit. During the entire exam he wore a grin so wide you could trip over it.
He waved a print-out of Jack’s growth chart. “Very robust growth in weight and height over the last several months. I am absolutely thrilled.”
He looked thrilled. I imagined him suddenly hollering, “EUREKA!” He thrust the print-out at me. “Here you go.”
“Thanks,” I said. “But I can pull it up on the website.”
“Well,” he replied, just shy of calling me a party-pooper, “if you don’t want it, I’m going to frame it.”
This made me feel like a tool. Actually, it didn’t make me feel like anything, which made me feel like a tool.
Dr. Rychik is a world-renowned pediatric cardiologist, after all, at one of the top pediatric hospitals in the world. And he was thrilled.
I, on the other hand, am a writer. I have the bearish outlook of an actuary without a shred of methodological competence to back it up. I’m also superstitious, which means I believe in things that I don’t understand. And I suffer.
So I took the print-out and thanked him. As he continued his optimistic assessment, Every party needs a pooper, that’s why we invited you was bouncing around in my head, and I continued to sit with polite grimness against his cheer.
When he finished, Dr. Rychik asked me if I had any questions.
I only had one question. Although I already knew his answer, I asked it anyway.
“So Jack’s mom and I were discussing his late night bottle,” I said. “And, uh, as you know, I’ve stayed up every night to get him an extra bottle and, uh —”
The doctors watched me intently, respectfully, as I meandered through my question. Dr. Fuller tilted her head at a barely perceptible angle and gave me a barely perceptible nod as I yammered around what I was getting at.
“— which has, you know, been kind of hard. Uh, anyway, obviously the point is to get Jack’s weight up, so …”
I paused. The doctors were still looking at me intently and respectfully. I gazed at the computer monitor sitting over on the desk. Suddenly, I remembered the Commodore 64 we had in the family room when I was a kid. It took 35 minutes and eight floppy disks to load a game.
“What I’m wondering,” I said, finally focusing my attention, “is if you think I should still be doing that. I mean, if I stopped giving him the bottle, do you think he’d pick up the extra calories during the daytime.”
As the Munch and I descended in the elevator down to the parking garage, I thought about Dr. Rychik’s answer. I appreciated the man for understanding my dilemma, appraising it compassionately, and still telling me the truth as he saw it.
I knew that regardless of his answer I wouldn’t stop giving Jack his nighttime bottle until:
- His weight was in the 97th percentile, or
- They said he didn’t have a hole in his heart anymore, or
- He wouldn’t take the bottle anymore, or
- I finally reached the point of physical collapse, or
- He was old enough to drive and he was like, “Dad, get the hell out of my room with that baby bottle. It’s two o’clock in the morning.”
I also know myself well enough to realize that if he were in the 97th percentile, I’d be thinking about that other 3 percent. Or trying to figure out how the test had been rigged.
As far as the hole in his heart, of course they wouldn’t be saying it was finito anytime soon.
The only way to know for sure would be to cath him again, and they’re not going to put him under just to satisfy his father’s restless desire for certainty. They’re pragmatists as far as that sort of thing is concerned — as well they should be, since they’re professionals.
So they rely on triangulating symptomatic evidence: physical presentation, data from medical exams, demeanor, and not least, growth.
Doctors are also actuaries, after all, in a real sense. The obvious difference in this area between them and me is that their actuarials do rely on methodological competence, whereas mine rely on belief in things that I don’t understand.
Anyway, based on their methodological competence, the professionals at this point in time were optimistic. So why not listen to the professionals?
I do, usually. The question for me is more: why not find peace in what the professionals tell you?
I don’t know. I guess because I’m a dad. Because I’m Jack’s dad. I’m not professional about the hole in his heart. I’m not pragmatic. I’m a zealot, a fascist, a totalitarian. I don’t want to live with it. I don’t want to manage it. I want it blotted out like the last unbeliever.
But somewhere in my mind I also imagine what if I stopped giving him his late-night bottle and his growth stalled? What if he went back to tracking the curve rather than blasting through it?
What if he got sick and his weight tanked?
What if he went back into the hospital and I sat for hours again staring at him through the matrix of tubes and wires they had him hooked up to and I went back to sleeping in the fluorescent parent pods and trekking eight blocks through the frigid, blinding wind to eat hot dogs at the burger shack in University City and when I came back into the CICU one night and looked at that beautiful insensate little baby I wondered:
Would we be here if I’d just heeded the Crash Davis Rule — never fuck with a winning streak — a rule I follow with monkish devotion in every other facet of my life?
I don’t know how I would live if that happened. To be clear, I would live. I just don’t know how. That’s me. Your mileage, etc.
Oh, Dr. Rychik’s answer to my question.
He smiled softly and thought about it for a moment. “Well, I can’t answer that, honestly. I’ll defer to Jack’s pediatrician on that one.”
Then he leaned in a little, and he fixed me with the trace of joy in his eyes. “The one thing I can say is: whatever you guys are doing, it’s working.”
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