Stanley on Thanksgiving Eve, Four Months Post-Transplant
There are these two young fish swimming along, and they happen to meet an older fish swimming the other way, who nods at them and says, “Morning, boys, how's the water?” And the two young fish swim on for a bit, and then eventually one of them looks over at the other and goes, “What the hell is water?”
—David Foster Wallace
One year ago, according to the Facebook forever machine, I was eating pizza with my wife and some work friends and retweeting Jim Gaffigan jokes. That was a normal day.
Today is a normal day, too, though it would be unrecognizable to the Jeb of November 24, 2015. Today, I woke up to the sounds of my son kicking in his portable crib. I got up and cleaned the poop out of his onesie and his little bouncer liner. I washed his bottles using the special soap we use for that purpose and checked that all his medications were properly refrigerated, then heated up his bottle so that it could be poured into his feeding machine.
It’s amazing how we can slip from one kind of life into another.
Stanley in April 2016, Three Months Pre-Transplant
Looking back at photos of Stanley pre-op, his comically large eyeglasses, his gaunt face and poisonously yellow skin—I cannot imagine how we got here, to today, Thanksgiving. For so long, today seemed somehow impossible.
I remember sitting in the hospital this past spring and summer during the first surgery (a failed Kasai that attempted to repair Stanley’s biliary ducts), the second and third (a pair of cataract removals), and fourth (the liver transplant) and trying to imagine this time year, to picture where Amber and Stanley and I would be, what our lives would be like, during the holidays. But I was never able to conjure even the faintest image of the future.
Somehow, day by day, one surgical procedure, medication draw-down, blood test and antibiotic regimen at a time, we got to this morning. And, along the way, I learned so many things that, one year ago, gnawing on pizza in my Midwest hometown, I could never have imagined:
How to make friends with phlebotomists.
How to measure a feeding tube (from the center of the belly to the tip of the nose and from the tip of the nose to the ear).
How to get in and out of scrubs without having to balance against a wall.
How to carry a baby, a car seat, a feeding machine and a diaper bag long distances.
How to distract a baby during a kidney scan.
Which floors of the hospital have the strongest wifi.
That hospital staff will only call you “Dad,” never by your name.
That no matter how scary your situation is, there are almost always others who are somehow facing something far worse, that in some scenarios you are the lucky one.
I don’t know what lessons I’ll learn between now and November 24, 2017, or what “normal” will look like, but I feel ready for it. Because today, aside from his feeding tube and slightly lagging physical strength, Stanley is indistinguishable from any “normal” baby. We made it this far, together. I am so thankful for that, and for so many other things:
Every noise Stanley makes in his sleep
Every filthy diaper, onesie, bouncer and toy
Every crying fit
Every slog to and from doctors’ appointments
Friendly Uber drivers
And, most of all, I am thankful to a family who is missing a loved one today. Their loss made this day with Stanley possible. I cannot imagine what Thanksgiving 2016 is like for them, what their new “normal” has become. So, because no thanks is large enough to encompass what they have given us, I will instead wish them peace.