Family Notes: The "New" Normal

Family Notes: The "New" Normal

I also clung to the idea that if things remained exactly the way they were, if we were careful not to take a step in any direction from the place where we were now, we would somehow get back to the way it was before she died. I knew that this was not a rational belief, but the alternative – that when people die they are really gone and I would never see her again – was more than I could manage then or for a long time afterward. -William Maxwell, So Long, See You Tomorrow

At 2:00 this Wednesday, as she does each week at the same time, Ronan's physical therapist came to our house. These were her observations of the hour: Roan seemed to enjoy our session. We played in the beanbag and turned on the vibrating seat. I played with different things to prop his hands where they would stay on toys or stay together so he gets feedback about where his body is in space (hand to knee, hand to mouth, hands to feet). I also worked on some tension on the left side of his neck.

Using her nickname for him – Roan – she wrote on a yellow slip of paper under the typed heading "Family Notes." The font is playful and festive, and reminds me of an advertisement for the preschool near my house: Small World Nursery School, Enrolling Now! We keep these single sheets of notes in a folder, although sometimes I wonder why. Wouldn't it be better to just pretend that time could stop as Maxwell's narrator longs for it to do in So Long, See You Tomorrow? Couldn't we just freeze this frame and not go forward (which for us means backward), and just leave the foot hovering in the air, let the ground spin away, just suspend deliciously forever? "Stop time in its tracks!" bellows one spam email in my inbox (an advertisement for wrinkle cream.) "Expect musical skills soon!" promises another from the child development website that I've unsubscribed to almost 100 times but without results. Couldn't this Wednesday be our last page of family notes? Couldn't we stop here, stop adding to the stack? Couldn't it be that easy? Someday, of course, the narratives will stop because Ronan's life will stop. I know this, I expect this, and I know that when that happens I will wish for the reverse; I will wish for more family notes, a thicker folder, more time. I will want the house covered in yellow sheets of paper, little scenes from Ronan's life, just another day, just one more skinny piece of paper to shimmy into the short stack. I'll be a hoarder of narrative.

Expectations feels as meaningless as words these days; all the little narratives that pepper our world but without adding the flavor of meaning, without adding anything at all. Walking through the grocery store I read "Meet our beans!" on the back of a soy milk carton; a chocolate wrapper practically promises that the bar inside the gold-flecked wrapper is health food; one cereal box claims to contain cereal grains "on a mission;" wine bottles, even the cheap ones with clip-art labels, have tiny stories about how the grapes were harvested. At the coffee bar is the eco-friendly directive to "re-use your coffee mugs." Words: so often undeserving of the emotional weight they want to carry. At the check out counter, among magazine headlines that promise to "build a better butt," and "avoid holiday weight gain with just three tricks" and the latest celebrity baby photo or pregnancy announcement or fashion flub, is a magazine advertising, simply, "health," that looks the least odious and that I attempt to page through while waiting to check out. A life coach offers the following advice to a woman who writes in to the monthly column, worried about being "fired up" all the time, constantly in fight or flight mode. Stating the very obvious that "being in stress mode impairs your judgment during everyday situations, because it narrows your perspective," this coach of life recommends that this frazzled letter writer schedule in daily fun and exercise, claiming that the implementation of such tactics will create a "new normal" that will feel so totally amazing. I numbly replace the magazine in the rack and remember that our new normal is so out of most people's vision or understanding that there is no magazine article to help make sense of our dangerously narrow perspective, like a snaky hiking trail etched into a Swiss mountain and without a guardrail. There is no parenting advice, no call-in radio show that might help us navigate these weekly family notes and what they mean, which is that our child is dying and there's nothing nothing nothing to do about it. There are no real strategies here, because the part of the body that must adjust to the new normal is the heart, which is a muscle, and therefore stubborn and strong and braced both to avoid and absorb loss. The heart, the heart – what to do with it?

That same morning, during my office hours at the university where I teach, I opened my Emily Dickinson book – the old school hardcover version with the glossy white cover and the silly pink flower bouquet that I remember cracking open on finally-cool summer nights after my grueling double shift at the mall, the first at Victoria's Secret, where I chirped and flirted merrily away selling bras and matching panties, and the second at Eddie Bauer, where I changed out of my skirt and hose into a flannel shirt and ripped jeans to stock the shelves, when I would recite some of Dickinson's poems to keep from going completely out of my mind – and found a to-do list written on a notecard in handwriting that was not mine but that was easily recognized as female, with curling, looping letters and one heart-dotted "i."

Cheetos

Bagels

Butter

Milk

Mac n cheese

Hot pockets

Something frozen and sweet

Lettuce (checked)

Dressing

Carrots (checked)

Bacon bits

Cheese

Lunch meat (checked)

Bread

And there I was, for just a moment, in somebody else's life, inside somebody else's normal errand, wandering through the cool aisles of the Whole Foods in Santa Fe, New Mexico with my shopping list, not wondering, for just a moment, how many more moments I have with my son, but wondering instead what sweet and frozen treat I might buy (Coconut milk ice cream? Sara Lee cream puffs?), and wondering about the maker of this list. Was she a mother, a graduate student, a grandma living on social security? Someone I worked with at Eddie Bauer who might have picked up my book in the break room more than 15 years ago and slipped the list of things she planned to pick up after her shift between one poem about death and another about the brain? Was this list maker planning to make a salad? Have a super cheap-o dinner party? Was it drunk food? I fell in love with the maker of this list because for just a moment my feet lifted from the ground, away from the hole I feel like I fall into each morning when I remember that someday very soon I will wake up and my son will be dead. Grief: a daily opportunity to wake up walking on air.

Wait! You're also on stage. People are watching, looking, wondering, and I notice these onlookers the way you sense an audience during a performance — a dark, tense and whispering blob of expectations – without seeing them. Being on stage for dopey high school musicals or swing choir or opera vocal juries or now, mothering Ronan, are some of the times in my life when I've felt watched ("How will she dance with the leg?" "Wow, she can sing!" and "That poor mother, how does she do it?") and also fearless. I can dance and I can sing and I can mother this beautiful child. Watch me. Watch me love him and live. Grief is a performance that the griever watches, too, nervous and sweaty, from the nosebleed seats. The encore is not the goal; the accolades are not of interest. I'm only trying to complete my lines without shattering like a big messy wet star all over the heads of the unsuspecting audience members. And I cling to time as much as I fear it, I welcome it as deeply as I long to stand solidly in its way. A version of fight or flight, I guess. A version of the new, spectacularly fucked up normal of parenting a terminally ill baby.

As I drove home the angle of the setting sun was just right, the Sangre de Cristo mountains were almost too perfectly outlined by the shadows of dusk, the dips and rises so clear it was as if you could reach out your hand and move them around. Pick off a few hikers. Pull out a few trees. A paint-by-number painting, a joke, a framed photograph with an "inspirational" saying written above, a mountain worthy of any Sound of Music nun to warble about. My normal day: a class, a trip to the store, a quick drive home. I wondered what would happen if those mountains fell, tumbled in a blaze of dust and dirt like the apocalyptic scene of a bad action film. I could actually imagine it, because nothing about this new normal surprises me anymore: not the joy of my son's sweet face, not the terror of losing him. The mountains looked that close, that malleable, that easily rearranged, spit upon, an uncaring audience, a reminder of the brutality of nature and biology, the tyranny of fact. I opened the window and let one hand hang out in the air as the light shifted, faded, and disappeared as it does every day, without fail, relentless and necessary.

The word normal is gone; there are only notes on this day and then the next in one baby's short life. There's only the place we are now and then that's gone, too, the show ending as quickly as light draining off the mountains, erasing shape and shadow, the audience gone, nothing more to see or judge, just that lone performer walking carefully through the aisles from the top row to the orchestra pit, inhaling the stuffy, mint-and-sour-breath air, fingering the backs of the oily, still-warm seats, sighs and claps still thunderous and real-time in her head, sweating and grateful and shimmering and strong, moving her fired-up limbs while her aching throat is quiet and no fight or flight but the heart beating two words in a tick-tock rhythm — watch me watch me watch me.

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