Motherhood Exaggerated: Chapter 12
The doctors are very pleased with the operation, but to a medical novice like me, Nadia seems far removed from the girl she was this morning. If I look beyond all that was done to her, though, I can still see my beautiful baby.
—journal entry, January 31, 2001
Seven-year-old Nadia was the perfect age to be the flower girl at Margie’s wedding in the summer of 1. I didn’t see her fully adorned until she walked down the aisle, but it wasn’t hard for me to imagine what my dress-up queen would look like. She was competition for the bride, all in white, with full skirt and a big bow at her back, a sheer touch at the neck and shoulders, in white slippers with delicate pearl beading. She took her job seri- ously, with measured steps; her eyes, radiating pride and innocence, focused on her task, holding her basket as if it contained the actual wedding vows.
After the ceremony, Nadia did what I imagine all flower girls do. She tossed away her slippers and joined the other kids on the lawn in games of tag, hide-and-seek, and that age-old boys-chase-the-girls romp. Grass stains, a ripped lining, her dirty face—none of this could mar the picture of the perfect flower girl. I didn’t recognize the intensity with which I was watching Nadia until my premonition, that something terrible would befall her, stirred, as it often does when I become engrossed in Nadia’s force: I lost sight of the line separating us and had to turn my eyes away.
Halloween, eighteen months later. From flower girl to angel. White and silver wings, wand, and wispy gown. Nadia posed and pirouetted joyously before me while I sneaked peeks at her face. I had always associated its per- fection with vulnerability. Just one year earlier, she had been dressed as an M&M when she was bitten in the face by a dog. Now I searched for the barely visible scars. I had hoped that these tiny imperfections would give her a less defenseless beauty. If she were marred, somehow, I was sure she would be safe, that there would be no reason for her to be hurt anymore. But that October 31st was only a tease.
The incision to remove the tumor in her left jaw, the trick that my angel brought home with her treats on the fol- lowing Halloween, would begin at Nadia’s lower lip, proceed down, under the center of her chin, then across her throat to her ear. The doctors would remove however much bone they needed and reconstruct a new mandible from the fibula they would remove from Nadia’s leg. Then her mouth would be wired shut. A tracheostomy would keep her airways open as her head swelled up like a balloon. A feeding tube would be snaked through her nose down to her stomach. Drains would extend from her neck and leg, a peripheral IV in her hand would supplement the central line implanted in her chest. She would be catheterized. The release the hospital required us to sign told us everything that could go wrong during the ten-hour operation—from nerve damage to death.
The decision to choose surgery over radiation had been made two weeks earlier and would depend on how the tumor responded to the first three rounds of chemo. Following the initial round, the nurse practitioner looked at Nadia’s jaw and declared with great cheer, “Look! It’s already started to shrink.”
No similar declaration followed the next two cycles. I thought maybe I had just become accustomed to Nadia’s face. I no longer had perspective or an accurate memory of how large the tumor had looked at the start. Any lump would have been too big. But Nadia’s presurgical scans confirmed that there had been little additional reduction in the size of the tumor. Now it was time to choose be- tween surgery and radiation.
Dr. Wexler called John and me to a meeting with Dr. Kraus, the head and neck surgeon; a radiologist; a general pediatric surgeon; a nurse practitioner; and, at the sug- gestion of Dr. Wexler, who said we should have a less emotionally invested person with us, my sister-in-law Maureen. Absent was Dr. Cordeiro, the reconstructive surgeon who would remove Nadia’s fibula, attach it to Nadia’s remaining jawbone, and connect the minuscule veins and arteries to ensure that this bone would throb with life. We gathered in an exam room in the Pediatric Day Hospital (PDH). The radiologist, a young woman only days away from maternity leave, sat casually on the examination table. The rest of us were clustered toe to toe in a haphazard circle of chairs. The doctors sat with their bodies forward, seeking eye contact. I slumped, like a truant called to the principal’s office, and examined pictures of smiling patients pinned up on the bulletin board. In my memory, the room was dim, but there would have been no reason for the lights to be low.