Today I left Ronan asleep in his crib to board several flights to Boston for the National Tay-Sachs and Allied Diseases Organization Family Conference. Waiting for the airport shuttle in the pre-dawn cold in the dorm room parking lot at the school where I teach, all the lights off, all the students asleep, I wanted to call the NTSAD and say, “I can’t do this. I don’t know how to do this.” Instead I waited, boarded, chatted with the driver as we drove past the shining windows of the closed up but well lit tourist-trap stores near the Plaza, let him take me to Starbucks (“I’ve got nothing else to do for the next hour,” he assured me), told the homeless man who asked if I’d broken my leg No, I’m just tired; it’s 6 a.m. and then fell asleep on the drive to Albuquerque while listening to two women complain about how their sons were not focused enough to get into a decent college, and if they did get accepted they’d be going on their own dime. There was some brief collective rubber necking along the highway where a motorcyclist had wiped out. “He’s up and talking to the medics,” the driver assured us, straining to look over his shoulder. Red emergency lights striped the smooth morning sky, a solid wall of blue. “That’s a good sign.” The three other passengers in the van all expressed their hopes that the man was not seriously hurt. “Will the traffic make me miss my flight?” one woman wondered. I ate my oatmeal in silence. I had the usual humiliating pat down in airport security, and presented my palms to be swabbed to be sure I hadn’t been building bombs hours before (careful not to run them first through my damp hair as I learned the hard way that shampoo residue can often be mistaken for explosive residue) and then sent joking text messages to Lisa and Said about this experience, two people I know who are often pulled aside, singled out.
Sitting on the plane to Dallas, a little girl asked, “Mommy, how high will we go?” I almost answered her. She was admiring my necklace as she asked this question. She looked at me and blinked. “We’re going to Newark,” she said. I smiled. “Newark is nice.” “No, it’s really not,” she said, and turned to look out the window.
I bought a sparkling butterfly necklace in the Albuquerque airport for Violet, Weber’s daughter. This weekend I will see my Boston friends, the women (and one man!) who knew me in the boozy, histrionic days of my early 20s, when couch-hopping was an acceptable way to avoid paying rent, and when Sundays were full of sports talk radio, bill paying (with actual paper checks), huge bowls of cheap, cheese-covered pasta, melodramatic complaints about relationships, money, and the world, usually in that order, bad beer and large doses of ibuprofen. I don’t miss those days, but I have missed my friends. I will see a former professor of mine from Harvard. I will walk through Harvard Square, buy a book at the Coop, have a cup of overpriced tea at TeaLuxe, and marvel at how young all the students look. I will walk around in the awkward shadow of my former self.
A few days ago a woman approached me in Santa Fe and asked, “Are you the mother on the cover of the Reporter?” “I am,” I responded, pleased to be identified as a mom, which surprised me, and we chatted back and forth about teaching and writing. I bragged about my students, whose essays I’d just read. She told me she liked my piece and I thanked her, thinking I wish I’d never had to write it.
This weekend I will also meet my NTSAD family (which is how they refer to themselves), a group of people I know will accept me fully because they already have, on the phone and in emails, and it will be a relief, I know it will, and I can already anticipate the feeling, to step into the arms of women who know what I’m going through, who’ve come out on the other end and survived, who bear reserves of peace and strength that I am still building. And I can already anticipate the feeling of dread as well: seeing children at later stages of the disease, learning about symptom management, scribbling information about research updates in a notebook, attending memorials for the children who died between last year’s conference and this one. Next year we’ll all go together, Rick and I assured one another last night, and then we said nothing, neither of us willing to ask aloud: Will Ronan be alive for next year’s conference? Will we be packing up his favorite book and toys, assembling favorite photos, writing a eulogy? The future is both too well known and too much a mystery.
These thoughts make me want, in the following order: 1) a personal, microwaveable cheese pizza like the kind we used to order from the Schwan’s truck in Nebraska, a concept my NYC born-and-bred husband still finds unbelievable (“A moveable truck of frozen food? That makes no sense!”); 2) a martini (9 am is too early); 3) a Xanax (packed in the checked bag); 4) to do pushups in the aisle (flight attendants would most likely not approve). Even if any of these coping mechanisms were available to me, those ways of numbing pain that were effective in the past are no bulwark against the present situation. So I sit here in my sadness and write.
“Are you going home?” the woman next to me asks sweetly. She is reading a mystery novel. On the other side of the aisle a woman in an unfortunate out-of-season holiday sweater is reading The You I Never Knew written by, as indicated on the very shiny cover, by a bestselling author I’ve never heard of.
“Oh, work,” I say, “just work,” not wanting to say aloud, sandwiched between these two readers, discerning or otherwise, that I am working on a blog post about my dying baby.
“Good one?” I ask, pointing at the cover. She shrugs. “I’ve already figured out who did it.” She opens a granola bar and tells me that she’s going to Tennessee to visit her grandmother. Her breath smells nutty.
“That sounds nice,” I say, and it does.
Now I want to write mysteries. I’d like to solve a crime, be presented with some solvable problem. Maybe I’ll buy a garden sculpture or pet water fountain or something else I don’t need from the SkyMall catalog. When we touch down the Dallas sky is a blue-gray blur. Sprinting to my connecting flight through the packed terminal are parents, parents everywhere, looking smug and underwhelmed by their children, ignoring them in the play area, a woman dragging her daughter by the hand as if she’s a wheelie bag. These assumptions are mean-spirited and probably incorrect, but I can’t help it. While those parents are thinking about day care and after school programs, I’m thinking about symptom management and end-of-life options. I’m angry and looking for someone to blame. These unsuspecting parents are easy targets, too easy.
I find a new one in the boarding area. A man with tiny Bandaids the size of ants straddling pieces of what must be a third-degree sunburn across his nose, neck and cheeks is wearing a shirt that reads: The Old Cayucos Tavern (Since 1906). Below this are four men on horseback, pistols raised. And then: Liquor in the Front! Poker in the Rear! It’s so offensive that I have to admire the stupidity or guts or both that it takes to wear such an item of clothing in public. I walk behind him as I board the plane to Boston, feeling massively cheered up by this ridiculous, horrible shirt. I love a well-placed exclamation point!
And then before me are the faces of first class, all white, middle-aged men, and I find myself trying to search their downcast eyes, staring at their receding hairlines, thinking I wonder what Ronan would have grown up to look like. I stop myself and hear Rick’s voice in my head: You can’t always look this grief in the face. You’ve got to think about other things. Literally. I put my head down and think about finding my seat. I think about the fact that first class is full of only men, only white men, and briefly try to get angry about that. As we lift off, someone pushes the wrong button somewhere and the refrain of an infamous Duran Duran song blares momentarily from the speakers – Please please tell me now – and is quickly switched off. A few beeps from the flight attendant area. A giggle. I could be on a rocket preparing for a life-threatening trip into the firmament and I would not care.
Boston. A “wintery mix” is promised, but a few trees may still be in bloom. Tomorrow snow might fall. In the next two years my son will die.
What kind of a mother will I be next year? Will I still be a parent when there is no child?