It’s taken me a while to write this. Until very recently, I wasn’t sure why.
Last month, I returned home from Children’s Hospital of Philadelphia with Jack in tow, deposited him behind the living room baby gate (on his feet — he walks!), and ventured into the kitchen to debrief Mommy on Monsieur Munch’s cardiology visit.
“How’d it go?” she asked.
“Horrendous,” I replied. “Per the usual, his behavior was deplorable, except when I let him wander up and down the hallway during the quarter-century we waited for Dr. Rychik.”
“Oh boy,” she said.
She called out to Ryan that dinner was ready. He ignored her. My job would be to track the Woog down in five minutes and growl at him.
“Actually,” I said, “on a hunch, I tried something new during the procedures.”
I held up my phone. “I played an episode of Modern Family for him.”
She laughed. Every Friday Mommy, Jack, and Ryan watch one of Mommy’s sitcoms during dinner. Ryan’s fav is Blackish. I’m too much of an asshole to enjoy television, so I quietly read the Lee Valley catalog while the three of them stare slack-jawed at Mommy’s iPad, or I finish dinner early and repoint the deteriorating chimney mortar in the attic.
“Didn’t work during the upper echo or the blood-pressure monitoring, though,” I said. “He was righteously awful for those.”
“Well,” Mommy said, “He has a rep to maintain.”
“True. Anyway,” I continued, “his intramural VSD was barely detectable.”
Mommy’s face widened into a happy expanse of astonishment. She strolled into the dining room and ducked her head around the corner at the Munch.
“Way to go, Munchie Scruncher!”
Jack ignored her. He was wailing and pounding furiously on the baby gate, demanding to be let out of the living room so he could wander through the hallway and plunge down the basement steps to his death.
God help me, I do love that frigging hooligan baby.
“Anything else?” she asked above Jack’s outraged shrieking.
“Yeah, well, Dr. Rychik said the Munch might have some scar tissue at the far end of his aortic arch, which might be causing some narrowing.”
“He said he wasn’t sure, because Jack was so putrid during the upper echo and because he couldn’t get a calm blood-pressure reading.”
She looked at me. Her face was flat.
I explained that Dr. Rychik wanted to bring the Munch in earlier than normal to look more closely at the arch. If his blood pressure was variable over a certain amount from left to right, they might recommend another cath.
“Shit,” Mommy said.
“Dr. Rychik said he wasn’t sure,” I offered.
She was staring out the window. She shook her head. “That’s what they say when they’re trying to prep you. It’s just like the conduit.”
I assured her that it wasn’t a done deal, and offered some other nugget of hand-wavey blather before I left the kitchen to extract the Woog.
As I descended into the basement to grab Ryan, however, I felt a whisper of unease. I’d left the hospital relatively chipper, if hollowed out from the slog of it. But Mommy knows her stuff. Maybe I’m a dupe.
Sure enough, Dr. Rychik’s letter to Jack’s pediatrician popped up in the inbox the following day. The letter concludes (emphasis added):
Today’s echocardiogram does reveal the emergence of some scar tissue at the distal aspect of his arch … If we do find that there is a question of some progression of narrowing, then a cardiac catheterization may be indicated in order to assess this and to treat it with a balloon dilation if confirmed.
I explained this to Jack’s dad. This little boy has been through so much in his first few months of life, but I am confident that we will be able to keep an eye on this particular finding and track it and act upon if it does become of significance.
We will see Jack back in about three months with a repeat echocardiogram and ECG. Thanks for allowing me to share in the care of this very special little boy and delightful family.
Jack Rychik, MD
Division of Cardiology
Professor of Pediatrics
Children’s Hospital of Philadelphia
In the weeks since that visit, I’ve been struck down on a few occasions. When I watch Jack walk up and down the sidewalk in front of our home, giggling and picking up flowers, I imagine this moment flashing in my mind if he’s gone. I wonder if I stuffed him like a Christmas goose and caused his heart to grow too fast. I wonder what the world could possibly be like without him in it.
In those moments I feel the incomprehensible weight of everything it’s taken to underwrite this perfect little life: the work, the expertise, the technology, the infrastructure, the money, the love and the pain. And I’m staggered by the certainty that all of it — multiplied by a thousand, even — is worth it.
Then he turns back toward me and his smile bursts wide and beautiful and he toddles up to where I’m standing and he offers me one of his handful of words — “Hi!” — and the immensity of the world’s sorrow and joy breaks over me like a rainstorm and I feel like I don’t know how to get out from under it. I’m standing there in front of him, mute, locked up and unable to cry or laugh and yet he’s still staring at me, probing my face for clues, trusting in some preformed way that I’m not lost.
That’s when I recover myself, and I kneel down in front of him and I smile back at him and say the only thing I can manage to get out: “Hi, Jack.”