So, June 14th came and went, the seventeenth anniversary of Sophie's diagnosis of infantile spasms. Sophie was three months old, and I was thirty-one. I used to believe in a sort of muscle memory, a growing dread that was nameless until the day came and I realized that that was what it was, oh, yes, and no.
I wrote a book about it all, a book that I found tiresome and put on a shelf a couple of years ago. I've pulled it down, though, and might even do something with it. Here's an excerpt, a piece from the end of the first chapter, titled Diagnosis.
Within a half hour of arrival, our 12-pound baby had what appeared to be dozens of electrodes attached to her head and to a small monitor that showed an alarming screen of black squiggles and waves. Told this was an EEG, a machine to register brain-wave activity, I stood beside Sophie and feebly patted her.
"How does it look?" I ventured.
The technician kept her eyes on the screen, twiddling with some dials.
"Oh, I'm not reading it. Your doctor will let you know."
She said nothing else for the next forty-five minutes. After that, I was led back to the original room, where I sat on a beige metal chair and nursed Sophie. In what seemed like hours, the two chipper Fellows returned, their earnest faces poking around the doorway. It didn't seem right that they were my age or younger.
"May we speak with you now, Mrs. Aquino?" They drew up chairs and cornered me. They each had clipboards and pens. I had Sophie. The Fellow spoke up first, abruptly and efficiently.
"All right. Your daughter appears to have what is called hypssarhythmia, indicated by sharp spikes and slow waves on her EEG. This is usually indicative of a rare type of seizure disorder called infantile spasms. We'll need to admit her to the hospital and start her on a course of high dose steroids. These will be administered by intra-muscular injection. We will, of course, train you so that when you take her home after a week, you'll feel confident giving her the shots yourself. We have some information here, and unless you have any question, we can begin the process of admitting your daughter, Dr. S. will see you up..."
"What are you talking about?" I hear myself say.
The Fellow's last few sentences were coming at me from the other end of a tunnel, an incomprehensible drone. The younger resident leaned forward and spoke firmly.
"Mrs. Aquino, your daughter will need further tests so that we can find out..."
"I don't know what you're talking about," I said, this time a little louder and I began to stand up, clutching Sophie. The two women stood up, also, simultaneously scraping their metal chairs along the beige floor.
"GET OUT OF HERE. I DON'T WANT YOU IN HERE." My voice, just below a shout, seemed to be emanating from somewhere different than my own mouth.
Who were these two women, bowing out the door, excusing themselves? Ten years later, I remember that day and that room and those women with a painful clarity. That they were quickly replaced by our new neurologist, a slightly daffy, bird-like woman with a head of wild, wiry gray hair, didn't erase them from my memory. Their attention to personal fashion and relative cheerfulness, even professionalism was an obscene contrast to the diagnosis they had loosed into that room. I’m not sure what could have made the situation better at that time, but I do know that those two women who diagnosed Sophie that afternoon became emblems for me of the medical world. I would meet them again and again over the next several years, their bland faces peering out at me in the guise of twenty-four year old hospital social workers, residents and interns. I would feel most comfortable, later, with their opposites: Dr. S, who flitted into and out of the examining room with an almost Tourette-like intensity and who stopped me one day as I strolled Sophie down the street outside of the hospital, “Pretty in pink, she is, she is, pretty in pink.” Dr. T, who carried a beat-up Thomas the Tank Engine briefcase had noticeable hygiene problems, rips in her hose, and tea-colored stains on her white blouse, yet she carried far more authority for me than the impeccably bow-tied senior physician who held Sophie up like a specimen and rotated her for his student’s inquisitive eyes.
I wonder if those first two women should have entered that beige room, wailing and cursing at the news they would have to deliver. They might have dropped their clipboards and notes and ripped their expensive clothing and tore at their glossy hair. They might have wrapped me in their arms and then we could have all held Sophie and wept for her.