Screen Shot 2015-03-22 at 2.11.21 PMOne minute we’re skipping through the sunshine, and the next we’re lodged in the belly of the diagnostic beast. It’s the x-rays that happen first—only we’re not actually thinking first because we don’t understand yet what’s ahead of us. We’re in the radiology department that’s just down the hall from our pediatrician’s office, which is the comforting medical equivalent of the girl next door: How bad can it be if they don’t even make you leave the neighborhood?

Still, I sit in the waiting room beneath the warm weight of Birdy, breathing in the summer smell of seven-year-old scalp between her braids, and I wonder if our lives are about to change. Is there going to be a before this moment and an after? The radiology order is sweaty in my fingers. “? mass in chest wall” it says, in busy-doctor scrawl. Four words and one dislocated punctuation mark: That’s what I have to go on, and so I go on it. The aggressively preemptive question mark followed by the word mass, which I hate: its evocation of neoplastic malignancy on the one hand, and of the Pope chanting through an incense-scented funeral on the other. Or that mystifying physics property that’s like weight, only different: The mass of the mass is equal to something squared divided by the extent to which we can spare Birdy, which is not at all. Q.E.D. The alliterative “malignant mass” I’ve heard a million times, but “benign mass” is suddenly not ringing any bells. Also, chest wall. “Fortress Around Your Heart,” that Sting song, plays in my head like a soundtrack: Is the fortress around your heart a good or a bad thing? I can’t remember. But your heart is kind of counting on your chest wall to protect it, I’m guessing; it’s not really supposed to have a mass in it. I’d be happier with “mass in kneecap” or “mass in big toe.” “The further away it is from your brain, the better,” my son, Ben, once consoled his grandmother, who was having a squamous-cell something removed from her shin. Indeed. But also the further away it is from your heart. My heart.

So far, approximately four minutes have elapsed, and I’m already deranged. It will be another two and a half months before they figure out what’s going on.

“Abigail Newman.” The radiology technician is holding the door open, and the use of Birdy’s given name, which nobody ever uses, makes me feel like she’s in trouble. Abigail Newman, you get in here this second! Did you leave this mass in your chest wall? I help Birdy off with her clothes while the technician clucks over the order. “You just don’t like to see stuff that’s unilateral like this,” she muses grimly, shaking her head. No? I concentrate on not bursting into tears by teasing Birdy about her outfit: a floor-length, floral-sprigged johnny with a little lead apron tied around her waist. “All you need is a bonnet and you’d look just like Ma Ingalls!” I say, and Birdy laughs, twirls, and curtsies, before sitting dead still for ten minutes so the buzzing machine can spy on her bones. Have we all heard the same urban legends? About spider eggs in Bubble Yum and how the lead apron is, radioactively speaking, like trying to stop a bullet with a piece of paper? I hate having heard that.

“Wow,” I say, looking over the tech’s shoulder as a series of images appears on her computer screen. “Look at all your strong ribs! I really see why they call it a ribcage! It really does look like a cage! Doesn’t it look like a cage? How fascinating!”

The optimistic patter of the worried parent! It is very exclamatory! And it continues further down the hall, where we’ve now been sent for an ultrasound after the x-ray has illuminated exactly nothing.

“I thought it was going to be bone,” the tech said, “but it’s not—which means it’s got to be soft tissue.” She tried to grimace at me sympathetically, but I looked away to better thwart her pessimistic contamination. Soft tissue. Oh, Birdy of the softest tissue! Soft tissue is the Kleenex nest she made for her tiniest bear in an old walnut-shaped nut bowl. Soft tissue is the Don’t squeeze the Charmin! meatiness of her luscious thighs.

“Wow!” I say instead. “We get to see all your insides working! That’s a lucky thing!” You see their innards before they’re born—that strange prenatal introduction to your baby via her black-and-white internal organs—and then, if you’re lucky, never again. “So, so lucky!” I say again.

And we are—we are lucky. The ultra-sound tech shows us her beating heart, the galloping wild horse of her life. But my Pollyanna muscle is strained and spent by the labor of good cheer. You know the tech can’t and won’t answer your questions, but still you can’t help yourself. “What do you think?” I say, trying to trick her with my chummy casualness. “See anything?”

“We’ll let the radiologist take a look,” she answers, all pleasant poker face.

We are sent back up the hall to wait, and our pediatrician finally calls us in and shrugs over the radiology reports. “They didn’t see anything,” she says—and I imagine for a moment that our collective hallucination has been swatted away by the empirical hand of science, like the finale of a Scooby-Doo mystery: Turns out those pirates had projected a hologram of a mass onto this chest wall here, which had us all fooled! “Which is good,” she continues, “but weird, because it’s not like there’s not something here.” Right.

The doctor and I take turns feeling Birdy up, and she giggles. I love this doctor. I love that two hours ago, when she was first checking out the bump, she’d been openly baffled. I love that she called in a couple of colleagues, and the tiny exam room turned into a kind of jovial chest-wall-mass party, everybody pressing on Birdy’s ribcage and expressing more curiosity than fear. I am already nostalgic for that time. “How long has she had it?” they wanted to know, and suddenly I wasn’t sure. Had it been in my peripheral awareness for a while? Maybe. But then I’d been smearing Birdy with sunscreen, and there it was for sure, the lumpy, insistent fact of it, like something pushed under her skin: a donut hole; a bottle cap; a clot of abnormally dividing cells. SPF fucking 45! My creamy ho-hum cancer precaution seemed, suddenly, malevolently, like a red herring.

“I don’t know,” I said.

Now, the doctor says the first thing that scares Birdy: “I think I’m going to send you guys to the surgeon.”

“Surgery?” Birdy’s alarm-wide eyes fill with tears, and the doctor is quick to reassure her.

“Just because they know more about this stuff,” she says. “Not because they’re going to operate on you.”

One cherry-dip cone later, good cheer has returned to Birdyland. “Dumb lump,” she says, and pats her chest affectionately with a sticky, pink hand.

Our appointment is scheduled for three weeks from now. In the endless interim, we see my brother and his wife, brilliant physicians both, who examine Birdy at my request. They are heartbreakingly gentle with her, and she shows off a little under the bright light of their attention. “I call him Lumpy,” she says, all casual-like, puffing out her little bare chest. “Because he’s so lumpy!” They are both dismissive—they agree that it’s likely some kind of a benignly anomalous growth spurt—and afterwards my relief coincides with a cooling and lightening of the summer’s hot, heavy skies.

We also see my parents. “Whatever you do, don’t mention it to them,” I badger Michael in the car. “We’ll tell them about it later, after it all turns out to be fine.” We are in their apartment maybe fifteen seconds before I blurt out, “Birdy has a lump in her chest. They don’t know what it is. I’m sure it’s fine.

We’re seeing a specialist. I don’t want you to worry.” I can’t help it. Their concern is the psychic equivalent of someone holding my hand during the scary parts of The Wizard of Oz. I feel like an asshole to worry them, but I’m glad for their company.

The surgeon, when we finally see him, has a kind of blustery masculine confidence that doubtless makes him a terrible person to date, but he is an excellent one to talk to about a mass in your daughter’s chest wall. We leave his office with an order for an MRI and a holistic sense of Birdy’s fineness: He is not overly concerned, he has told us, and I believe him. Only here’s what happens: Waiting, which we must do more of now, is the diagnostic equivalent of solitary confinement, corrosive of both spirit and sanity. The relief starts out vast and gleaming, like a serene expanse of turquoise sea. But then all the what-ifs—the troubling turns of phrase and outside chances—rise to the surface, until the likelihood of Birdy’s okayness is fully circled by sharks. The picture of health jigsaws apart into pieces—fragments that, held up one at a time, are impossible to interpret. “‘It’s probably cartilage,'” I quote the surgeon back to Michael, in the middle of the night. “‘But we just want to make sure there’s nothing inside the cartilage that’s making it grow like that.'”

Michael, who’s floating calmly at the surface of what’s most likely, which is that Birdy’s fine, says, “They just need to make sure.”

Right. “I’ll be shocked,” the surgeon has said, “if there turns out to be a malignancy.” This seemed good enough at the time—great, even!—but now I hate that he said the word aloud, even for the purpose of dismissing it. And the more time passes, the more I want to ask him approximately how often he’s shocked. For all we know, a dozen things a day shock him: “I’m shocked that nobody filled the ice trays!” “I’m shocked that we’re out of Special K!” “There turned out to be a malignancy? Well, color me shocked!”

There is also the fact that our MRI is not even scheduled yet. “You’ll get a letter in the mail with the date and time of your scan,” the surgeon’s receptionist had explained.

“Wait. What?” I had literally not understood. “Do you want to give me the number and I’ll just call and make an appointment?”

“It doesn’t work that way.” Her pinched eyebrows suggested my recalcitrance. You’ll get a letter in the mail.” I was frayed and fraying. These were the same people in charge of the magnetic resonance imaging of my child—but the telephone eluded them?

“Maybe they could send it by carrier pigeon,” I said to Michael in the middle of the night. “Or singing telegram.” When I called after a week, it turned out that the appointment-scheduler was on vacation; after two weeks, the letter-mailer was. I am unraveling so profoundly that I’m surprised not to see limbs fallen off and strewn around the house. “Maybe I’ll just go ahead and go to medical school and specialize in radiology,” I say to Michael, in the middle of the night. “To save time.” I finally wrangle the appointment out of them. We have two more weeks to wait.

“I’m not going to Google it,” I say to Michael in the middle of the night. “Don’t you Google it, either.” I get up and Google it. And here is my conclusion: People don’t tend to log onto the Internet to tell nice, boring stories about everything turning out just fine. My new get-rich scheme is going to be a web-site called detailing people’s various diagnostic false alarms. “They thought it was a tumor, but it turned out to be just a piece of old Fiddle Faddle!”

Meanwhile, I can’t keep my hands off Birdy’s chest: I’m like a bad date, wrapping my arms around her and groping her on the sly. I daydream about Birdy’s illness and death, and experience an anticipation of grief that’s almost ecstatic in its clarity. I tell you this confessionally. In this twilight zone of waiting, I cannot stop imagining my own bereftness. So on top of everything else, there is my histrionic lameness to deal with.

Brave Birdy Bluebird is what they call my daughter at her karate class, and I think about this during the MRI. Have you had one? I haven’t, and so I have ill-prepared Birdy for it: the noisy, white and whirring tunnel that sucks her in and keeps her while she holds her breath for twenty-five courageous seconds at a time, fifteen times in forty-five minutes. Have you held your breath for twenty-five seconds? I haven’t, and I am doing it now, because I cannot stop trying to have this expe- rience for Birdy, and it is hard. This is your maternal empathy on crack. I am dizzy and smiling nonstop, like a crazy person. Birdy’s chin quivers at one point, and she says, near tears, “I think I might have breathed during that last one.” We are alone in the room, Birdy in the tunnel in a paper dress, me squat- ting to hold her hand, and the Muzak version of the Annie soundtrack stops long enough for a disembodied voice to buzz in: “That’s okay. We’ll try that one again.” Upon strict magnetic orders, I have removed my belt and earrings, but I keep picturing the metal fillings flying out of my molars into the tunnel, lodging in Birdy’s skull.

“At least nothing actually hurts!” I offer, lamely, moments before the tech comes back in with a dye-pumping, huge-needled IV.

“Whatever you do, don’t move while I inject you, or we’ll have to do all the pictures over again. Okay, sweetheart?” Across the way, they are wheeling in a tiny baby, pushing her into a different tunnel. It is not just us, I know.

On our way out, they give Birdy a coupon for a free ice-cream cone from the Friendly’s downstairs. “This is so lucky!” she says, thrilled, while they swirl her soft-serve, and I am so in love with her that I have to squeeze her and kiss the top of her head, even though it’s not enough. What I really want to do is shrink her down and stuff her into my mouth. I want to marry her. I want to buy her a present—I can see the gift shop across the hall—but then I wonder suddenly if we’re going to be coming here a lot, and if we’d better keep a trick or two up our sleeves just in case. I imagine wheeling Birdy down from the Pediatric Unit upstairs, watching her fondle the Beanies and choose one; I imagine her cheerful disbelief: “This is so lucky!” In the Friendly’s line behind us, a woman bursts into tears, and a man puts his arms around her. It is not just us. The MRI shows—wait for it—nothing. More precisely, either more or less than nothing. The radiologist, who has never once laid eyes on the flesh-and-blood fact of my daughter, actually thinks there may be more swelling on the other side of her chest—a suggestion that maddeningly defies empirical evidence. We are stuck in a world of robots making their robot pronouncements. Our surgeon, who is away on vacation, communicates to his reception staff that he wants us to do an ultrasound. Another ultrasound? Yes. We’ll get a letter in the mail with the date and time of our scan. It’s like one of those awful Escher drawings, and this one is called “The Moebius Strip of Medical Imaging.” We are driving around and around the diagnostic parking garage, looking for the exit sign, and we can never seem to leave the level we parked on.

Two weeks later, the ultrasound tech leaves the room for a second, and Michael says, “I guess they gave her the day off from high school.”

Her ponytail bounces, her gum cracks, and she speaks so, so kindly to Birdy. “Are you doing okay, sweetie?”

“I am! I’m great!” I watch the screen and strain to interpret it. I see the gently sloping landscape of Birdy’s chest; I see the tech compare the two sides, type in the letters “R” and “L.” I am mustering every analytic skill I have, as if what’s in front of me is a poem full of complex symbolic imagery: What does it mean? I don’t know. I don’t see anything that looks like a tumor, but I’ve never seen an ultrasound of a tumor, so how would I know? I studied semiotics in grad school, and here it is again: Signs can be radically unmoored from their referents; nothing could be something, something could be nothing; a spiking fever could mean a healthy immune system or leukemia; an absence of pain could mean longevity or imminent death. Is luck finite—like a bottle of water guzzled all at once? I don’t know.

Another two weeks later, we watch Birdy from the kitchen window—she’s bent over a patch of chives in my mother’s herb garden while my father’s riding mower, running and riderless, careens down a hill towards her. We have just met with our surgeon who reviewed the radiology reports for us and concluded that it was, as he’d suspected, a benign overgrowth of cartilage. “I am very glad there’s no tumor,” he said to us, and then, to the medical resident who was shadowing him, “I was very worried there was a tumor.” What happened to I would be shocked? I felt faint from the combination of relief and retroactive fear. I hadn’t even worried enough, it turned out! I had not fully understood the danger. “Cartilaginous exostosis,” is the official diagnosis: i.e., a lump. It might get bigger when she gets bigger; it might require a brace or surgical intervention; blah blah. It is not life threatening, and so I am filled with fondness for it. Lumpy! Only now I am running outside, screaming, and the tractor has already veered away and stalled in a patch of vinca under the maple tree. Birdy is standing in the sunlight, whole and unharmed. My father had stepped away for just a minute, it turns out. This is not the other shoe dropping. It is not tragic irony or doom or punishment for our interpretive failures. It is life, with loss woven into its very fabric. That’s just what there is.

Author’s Note: Oddly, I’m writing this note on the day of Birdy’s eight-year pediatric appointment—what I still like to call her “well-baby check-up”—and our doctor and I were able to exchange a few subtle, relieved signals over Birdy’s head about the fact of Lumpy’s having turned into what we call in Yiddish a nisht geferlach—no big deal. As my father likes to say, “There are very few true geferlachs in life.” Amen.

Brain, Child (Summer 2011)




By Keaghan Turner, Ph.D.

Waiting ArtMaybe because I’m teaching a women’s studies course this semester and everything “personal [seems] political”; maybe because of the most recent recrudescence of the Mother v. feminist debate surrounding last spring’s publication of Elisabeth Badinter’s The Conflict: How Modern Motherhood Undermines the Status of Women (passages from which I will assign to my students), I’ve been thinking about waiting rooms as empowering female spaces lately. Then again, maybe it’s just because I spend time every week as a mother in a waiting room, waiting.

I think this is a safe generalization: When you have a kid with a special need, you spend a good amount of time in waiting rooms.

These waiting rooms are different from the typical pediatrician’s or dentist’s. The waiting rooms I’ve frequented over the past few years are the waiting rooms of specialists—play therapists, occupational therapists, pediatric psychiatrists. When we wait for the pediatrician or the dentist, the only sound—besides maybe some coughing, sneezing, and whining—might be mothers softly reading picture books aloud or kids playing on DSis. These are communal public spaces—we are all sitting there together—but we remain isolated, anonymous, private. As parents, we are not there to make friends or to socialize or to chitchat. We are there, waiting for our child’s name to be called. We are there to see the doctor or dentist. We are there to get results. We are there to have a professional make things better.

In the waiting room of my son’s occupational therapist, the waiting room where I spend the most time on a weekly basis, this is not the case. Here, the same group of mothers whose children have the same Wednesday morning appointment slot wait together. These women talk. A lot. To each other. About everything. What’s more, in this waiting room, none of us expects to get results any time soon and there’s no guarantee the professionals can make things better.

The diagnoses of their children vary; the struggles of their families vary. But two things do not vary in the OT waiting room: it is full of women and the children are all boys.

One of these facts should not be totally surprising if we keep in mind that the Centers for Disease Control report that ADHD alone, the most frequently diagnosed (and controversial) pediatric “invisible disability,” is diagnosed approximately three times as much in boys as in girls in our country. As of a 2011 National Health Interview Survey, 5.2 million American children ages 3-17 have been diagnosed with ADHD; that’s 8.2% of that population. Given the pervasiveness—some would say epidemic—of “invisible disabilities” (which is a catch-all for anything on the Autism spectrum, anything neurologically atypical, anything neurobehavioral, anything to do with mental health), it’s no wonder our behaviorist, when delivering our three-year-old son’s diagnosis (after his first couple years of successfully and dangerously baffling all attempts at discipline and smashing a couple flat-screen TVs), said it’s “only ADHD” with a comforting smile and a relieved shrug while we blinked at her, thunderstruck. (After a couple more years in several different waiting rooms, I get the “only” now).

I have attempted to bring reading and to prep for my women’s studies class in the OT waiting room, but it’s impossible to concentrate amid the lively discussions that inevitably ensue—about the desirability or otherwise of covering forehead lines with bangs, about relieving neck tension by sleeping one night on a hard floor, about the latest developments in an ongoing battle with school administrators over an IEP, about the appropriate time to become a mama grizzly. I mostly just smile and nod, but still I know an awful lot of very personal information about a small group of women whose names I’m not even sure of. I know about their family history with panic attacks, their oversized male first-grader’s problems with a petite girl bully last year, how sorry their sister with three kids is that they could only have one. Eventually, it hit me that while I was staring at the same sentence in my women’s studies anthology, I was failing to appreciate the genuinely feminist, personally political experience happening around me on Wednesday mornings.

The atmosphere in the OT waiting room, despite the circumstances—which are sometimes heartbreaking in the form of preschoolers with feeding tubes and second-graders who will never walk or talk no matter how many waiting rooms their mothers wait in—is surprisingly cheerful. In the face of what most of us would consider tragedy (even those of us whose sons “only” have mainstream neurobehavioral disorders), these mothers manage to smile, laugh, and remark on the progress they observe in each other’s sons, even if the progress is as slight as the straightening of an arm. Being in that waiting room is like being inside of a real-live blog—or an old-school support group. Here is a handful of strangers (essentially) brought together by some degree of common experience, sharing their ideas, telling their stories—talking frustrations, failures, strategies, triumphs—and receiving feedback, edification, suggestions, encouragement, sympathy. The communal waiting room remains somewhat anonymous and so is, like a blog, altogether publicly intimate. All of us in the room together are insiders, and there is palpable relief in not having to explain, justify, or define. There is relief in not being judged and in being simply, immediately understood. Because of this insider-ness, there is a level of honesty, candor, and trust in that waiting room that I have never witnessed in a group of female (or male) acquaintances before. The neighborhood you live in, what your husband does for a living, the car you drive, where your degree is from (or if you have one at all)—none of it matters like it might at the pool, at work, or on Facebook. Our larger cause is common enough among us to affect the dissolution of boundaries (socioeconomic, racial, generational) that usually divide us into a true community motivated by a sense of the common good.

Maybe we should announce our affiliation with our own magnetic car ribbons: OT Waiting Room Mothers Anonymous. Neuroatypical Boy-Moms Anonymous.

Sure, there’s a therapeutic element to these sessions in the waiting room that is valuable in itself, but in trading stories and tips from personal experience, I’ve come to recognize that this group—whether they know it or not—exercises a form of consciousness-raising and call to action that goes beyond traditional notions of therapy or support groups. This community of mothers translates their personal discussions into action that often becomes, at least locally, political as they advocate—tirelessly and perennially—for their underserved and/or vulnerable sons: to teachers, school administrators, school boards, lawyers, insurance companies, health care professionals, society at large. This advocacy on behalf of our special needs children, empowered by a community of women, including not only other mothers but also the doctors, teachers, and therapists we collaborate with, must certainly qualify as some of the most important and practical activism some of us will ever perform as women and in solidarity with other women.

My Wednesday mornings in the waiting room have done more than all of my academic reading and training to prove to me the link rather than the conflict between identifying as a mother and identifying as a feminist. Every week I see that being a feminist mother exists not only in teaching our daughters to reject hollow beauty standards but also in banding together to persevere—personally and politically—in raising typically atypical boys.

Want to read more thought-provoking essays? Subscribe to Brain, Child: The Magazine for Thinking Mothers and see why we’ve been receiving awards for literary excellence since 2000.