There are fewer than twelve hours until my son goes into surgery. And still words are failing me.
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I've spent all that time filling my head with information, my mind swimming with everything from medical terms to first-hand accounts of parents halfway around the world who went through the same thing. After our consult with the neurosurgeon, after the pre-op appointment with the plastic surgeon, I would come home and dutifully process everything I'd been told, reporting out to my parents, Jen's parents, coworkers, friends. I researched craniosynostosis to the ends of the web, and traded notes with families, even former sufferers, halfway around the world. I could answer any question I was asked.
Except, "How are you feeling?"
"Surviving," I'd always answer. But I really don't know how I feel.
Jen recently described me as the well-informed, calm, together one, but I know I don't feel like that. "Helpless" would be a good answer, at least for the moment. I don't know if it's my inborn maleness, or accursed Type-A-ness, but my strong — frantic, frankly — desire for information is only partly practical. Deep down, I think, I feel obligated, I feel it's my job to fix this. To make things better. That somehow, if I knew all there was to know, I'd have all the answers, and make things right.
He's so beautiful. So wonderful. He smiles so big when I come home, I'm half afraid his cheeks will pop. He laughs and coos, he can flip and he just started sitting up. And he loves me and trusts me, so completely, so innocently. And it literally, truly hurts, like a jagged fist of hard ice lodged low in my throat, when I think I'm failing him.
I can't make it right, and tomorrow we're going to put his life in the hands of strangers in the hopes that they can.
Yet, "ridiculous" and "silly" fit sometimes, too. I've read heartbreaking stories, seen awful pictures, of kids whose conditions are much, much worse. So strong is my sense of... insecurity? Triviality? That my interaction with assorted online support groups has all been anonymous. I'm afraid they'll see pictures of my son and laugh and tell me I've got it easy. Intellectually, I know that wouldn't happen — even in the short time I've been around, everyone has been wonderful and helpful and shamelessly loving of all comers, of complete strangers. Intellectually, I know they'd understand. So the fact that the intellectual still fails to win over... shame? It upsets me.
Our surgeons, our pediatrician, and all the nurses and medical staff we've seen in the last few months are almost cult-like in their recitation of the mantra, "It's going to hurt you parents more than it hurts him," and "Try not to worry, he'll be just fine." And I know firsthand, having volunteered summers in high school in the ICU at Queen's Hospital, that more energy is often expended on managing overexcited family members than on care of the patient.
Dr. Michon Morita, the neurosurgeon whose letterhead reassuringly cites the American Board of Neurologcal Surgery, does three or four of these operations a month, many of them making Zac's planned procedure look like a walk in the park. Dr. James H. Penoff, plastic and reconstructive surgeon, is so calm and matter of fact, you'd think you were in a dentist's office (were it not for the graphic brochures on breast implants). He described the procedure — "Saggital Synostectomy and Bilateral Canthal Advancement" — so matter-of-factly, I briefly imagined that I could do it (Jen, however, turned sheet white).
I'm pulling back from other things, but sometimes I think I shouldn't have to. I'm taking time off from work, just as we're hitting the red zone in planning our semi-annual conference, this year taking place in Los Cabos in Mexico. And for the first time since I started this job four years ago — with our office incredibly short staffed — I'm not going. And as of the start of October, I resigned as chair of my friend's bid for a State Senate seat — just as the most crucial weeks of election season were upon us. Even though everyone has been understanding, I still feel guilty.
Babies are amazing, surprisingly durable, quickly healing things. And Zac, unlike his big sister, is the very definition of "sturdy," or "robust," already able to kick me over and seemingly on the road to early walking. Two weeks from now, the only difference in our lives might very well be the number of cute little hats. I shouldn't worry.
But of course I do. And Jen certainly does, a lot, as is, perhaps, her job. And a big part of worrying is, sadly, an unhealthy obsession with the worst-case scenario.
"Scared" works. And "terrified." What if he has an adverse reaction to the anesthesia? What if he loses too much blood? What if he gets a bad batch in an otherwise routine transfusion? What if he develops a serious infection, or has seizures, or goes blind, or is paralyzed?
What if he dies?
And that's really the question that matters, I guess. And the risks are so low, the math so improbable, that a guy like me should really know better than to actually ask. But I do.
And we go from feeling "silly" to "terrified" so quickly, so many times, in a matter of minutes, that it makes me dizzy. Last week, when I came home, Jen had two things to ask: what I wanted for dinner, and whether we'd eventually have another child if we lost Zac. And as ridiculous as it sounds now writing it, it felt at the time like a perfectly reasonable start to a conversation. It's on our minds. Why pretend it isn't?
We had our "elephant in the living room" phase, which was natural, but I was glad to move beyond it. Lately, Zac's surgery has been the only thing on our minds, and I think the most helpful thing has been the fact that Jen and I are talking openly and freely about it. At least, when Katie's not around.
What do we tell Katie?
I admit we haven't really fully come to a definite answer, and we'll have to, when Zachary isn't home when she returns from school tomorrow.
I have a tendency, and I admit it's in part deliberate, to interact with Katie on a more adult level than most folks would deem appropriate. And while I think it makes for a brilliant child, I occasionally overestimate her ability to process information. For example, when the first anniversary of the Sept. 11 attacks came around last month, and the imagery was impossible to avoid, I decided — contrary to Jen's decision last year to pretend nothing had happened at all — to explain the basics. While she swallowed everything eventually, I know I shook her up a little, and for a couple of days, planes in the sky were suddenly a potential menace. (She loves them again now, though.)
Almost, but not quite, learning my lession, I broached the subject of Zac's surgery last week. I said nothing at all about surgery, of course, and used all positive terms: fixing, healing, making things better, and doctors (all of whom, strangely, she loves). I reminded her about when Zac was born, when everyone had to live in the hospital for a while, but how things were still all happy and good. And, ultimately, I told her that Zac might have to stay at the hospital for a little while, perhaps like a sleepover at grandma's house but not.
But even with no details, Katie was too sharp not to figure some things out. She certainly knew something had been keeping tensions high within the family for a while now, and perhaps she connected the dots. She started to cry. A different, rarely seen, totally wrenching sob. Mournful, afraid, she clutched at Zac and said over and over that she loved him, that she didn't want him to go.
She was thinking, actually, that we were "returning" Zac, giving him back, like something bought at a store. Realizing this, we reassured her that Zac would come back home, and that calmed 90 percent of the storm. But now there are times where she won't let Zac out of her sight.
She knows now that something is going to happen, but not what. And soon Zac's absence will be a fact, as will his bandages and scars when he finally returns home. Adults can rationalize anything, explain away anything, so it's quite a wake-up call to have to grapple with things in the simple, honest, human view of a child.
Doctors are going to try and make Zachary better, but he will have to stay with them a little while. And it will hurt a little, and we will miss him, but soon he will come home and we will be a family again.
God willing.
I don't think I believe in god. But it meant a lot today to induct Zac into his family.
Zac was baptised this morning, as part of the usual 11 a.m. Mass at Sacred Heart Church near Punahou, along with five other children. My mom was on hand, as was friend Christy and coworker Steve, serving as Zac's godparents.
Before things got started, I warned everyone that Katie screamed through her entire baptism, and that Zac's lungs, if anything, contained much greater firepower. But, surprisingly, he did remarkably well. It wasn't until five minutes or so before the actual water-on-the-head ceremony that he started crying, and after the Father cracked, "He's not crying, he's just proclaiming his faith," his howls elicted more chuckles than mean looks.
He screamed loudest when he was the star, of course, as they smeared olive oil on his chest and scalp and poured water three times on his head (for the Father, Son, and the Holy Spirit). But all the other kids being baptised cried then (except for the six-year-old girl), and after Zac's turn, he fell asleep, leaving the other babies to make all the noise.
The regular readings for the day were a little dark — references to Israel and bloodshed and the murdered son of a vineyard owner — but all the proclaimations and reflections on the act of baptism were wonderful. I soaked up every word, bowed especially deep, and sang extra loud. When we were called on stage, and everyone in the church extended their hands to convey their blessing, I got a lump in my throat. And when we joined the procession at the end of Mass while everyone sang the hymn "How Great Thou Art" (coincidentally one of Jen's favorites), both Jen and I started crying.
Standing outside in the sun, I held Zac and drank in the smell of sweat and oil mixed into his hair, and was very glad we were able to have him baptised before his operation tomorrow.
I don't think I believe in god, but if he doesn't come home, be it tomorrow or a hundred years from now, I'd like to think he has someplace else to go.
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