Excerpt from A Ribbon for Your Hair
Revelation
An excerpt from A Ribbon for Your Hair: Loss. More Loss. And How We (Sort of) Went On
(2026) By Stephen Policoff
On Memorial Day when Anna was 4, we came back late from Phoenicia, as we often did, snarled in hideous traffic on the Thruway. We always dressed Anna in her pajamas for these long journeys, and she instantly fell asleep in the backseat of the car, and when we at last pulled into the driveway of our apartment building, I would carry her upstairs, and lay her down on her bed, while Kate parked the car.
That night, though, Anna was unusually fussy, woke up after I tiptoed out of her room, demanding that one of us stay with her in the soft darkness of her pink bedroom. Eventually, she fell asleep, but woke in the middle of the night, and I fetched her out of her toddler bed and brought her to our bed, where she tossed and turned and could not get comfortable. Kate and I both fell asleep at some point, and suddenly, Anna was not there beside me, was on the hard floor of our bedroom, crying quietly. I lifted her up; she seemed dazed but fell back to sleep, woke up in the morning, threw up, looked a little glassy eyed, was more subdued than usual.
We tried not to panic.
Kate called our pediatrician. We barely knew this well-thought-of physician because Anna's previous, much-beloved doctor had recently moved out of the city. This doctor said, Oh it's probably just a mild stomach upset, nothing to worry about, that kind of fall couldn't give her a concussion.
Except it did.
We kept Anna out of preschool that day; Maria came and took her for a walk but muttered to me, "She not look good," and I could see this was true, and in the afternoon, when she seemed worse—more woozy, deathly pale—I suddenly scooped her up and ran to St. Vincent's hospital, and the Pediatric ICU doctors looked at me sternly and said, "Another hour and she might have died."
She needed an emergency craniotomy, and in this pre-cellphone era, I could not reach Kate and I panicked and called everyone I knew at Kate's office and said, "Tell her Anna is very sick, tell her she has to come to St. Vincent's, Anna could die!"
I shakily gave my consent to the emergency operation, yet each doctor, each nurse who approached me, scowled, uttering a variation of the following: "We do not believe your story. Was someone hitting her? Did she fall from a great height? Did the babysitter push her from a swing? This kind of massive intracranial bleed could not come from a fall to the floor!"
I was frightened, then enraged. I scowled back. "I don't care what you think," I snarled at one doctor. "That is what happened."
When Kate reeled into the hospital, they immediately began questioning her, and my stoic, strong-willed wife, who hated to show any kind of weakness, especially to men, burst into tears, and I threatened to call our lawyer (though we didn't have a lawyer).
We were both so shaken, we barely spoke. We found ourselves in the little chapel on the first floor of the hospital and Kate, a semi-lapsed Catholic, prayed and prayed, and I sat there thinking of the old adage that there are no atheists in foxholes, and I murmured to myself, to no one, Please please don't let her die, if there is anyone out there, please please please…
She didn't die. The operation was a success, though the doctors continued to harass us about how this all could have happened. One doctor barked, in passing, We do not believe this happened as you say it did but by the way, she has an enlarged liver and spleen, and when she is better you ought to look into that.
Later, a friend told us that St. Vincent's was the hospital where, in 1987, the tabloid shocker of Lisa Steinberg played out—a toddler repeatedly battered till death by her adoptive father, whose violence no one at the hospital had noted—and that ever since this ghastly event, the hospital was obsessed with abused children.
But Anna was a happy, much-loved child who had merely bumped her head in the night. Why then was there such a hideous outcome?
Eventually, we discovered that one of the barely-understood symptoms of Anna's underlying illness was intermittent, unusual bleeding: a passing bop on the arm might cause a tiny blue mark one day or a huge engulfing purple bruise another day.
But this revelation was months away.
That summer began the furious round of doctor visits—seven in seven months—trying to ascertain the truth about her strange, flawed physical development and inexplicable health issues.
We saw gastroenterologists, hematologists, hepatologists, neurologists, an expert in Asian parasites. She had MRIs, CT-Scans, a zillion blood tests. Each time, she would murmur, Just want to go home, want to go home.
At home, she was still the happy, giggling child everyone adored. But a cloud descended on our lives. I couldn't sleep, had recurring nightmares. Even at our house upstate—grilling the steaks Anna savored, crunching through the snow-filled yard to feed the birds she loved watching—we could not completely evade the anxiety which tinged even sunny days.
The next-to-last stop on our journey through medical hell was a genetic specialist at Mt. Sinai. She took a lot of blood from Anna, but barely looked at her. Sternly, she said, "We are looking at the possibility of lysosomal storage disorders, like Gauchers, or Niemann-Pick. I don't want you to look up these diseases. I don't want you to think about these diseases until we get information back."
But of course, I did. As I scanned through the descriptions of these horrifying genetic disorders, my eyes came to rest on the description of Niemann-Pick Type C. A chill ran down my back. I have often heard this expression but never experienced it until that moment—a wave of cold fear from my neck to my legs. I had to look away. I knew that Niemann-Pick C was what this doctor would tell us.
I could not bring myself to tell Kate.
Kate was always better at compartmentalizing emotions than I was. She was anxious, certainly, but we did not—could not—discuss our fears for most of that dreadful journey through diagnostic distress. But on New Year's Eve 1999, while we were waiting for the geneticist to return our calls, Kate fell into despair, and I had never seen her in despair, and I knew that she knew already what I knew, that this wasn't some fluke which could be fixed, that Anna's condition was bad, and that it would never be good again. I tried to cheer her up, but watching the ball drop on our ancient upstate TV, we both started to cry that night, and both tried to hide our tears from the other.
In early January 2000, back in the city, we finally got the dreaded phone call: "Looks like your daughter has Niemann-Pick Type C. Sorry about that," the geneticist said in a strangely cheerful voice. "You
might want to check out Dr. Marc Patterson at the Mayo Clinic. He's
the foremost expert on this condition. Good luck!"
And with that, our world imploded.
Of course, we went on anyway. This was our mantra: Everything has changed but nothing is different. We will figure this out. We will not tell the world our beautiful child is destined to die. We will not give up. We will do everything that can be done.
Kate buried herself in work, while I plunged into reading medical journals I could barely understand. Despite the fact that we were chronically broke, and that our health insurance was not especially helpful, we decided that we would seek out every shred of expert advice we could locate. Even if that location was the Mayo Clinic in Rochester, Minnesota.
In March, I called the Mayo Clinic to make an appointment with Dr. Patterson. There was nothing available until June, but I said yes immediately. One medical journal I had struggled through cited the discovery of a previously existing drug which might benefit NPC kids; Dr. Patterson was mentioned in this all-but-unreadable article on PubMed.
The more I read, the more important it seemed that we go wherever we needed to go to find out what could be done for Anna. Our health insurance declined at first to cover this long and expensive journey. I harangued, wept, wrote angry diatribes, threatened to sue, cajoled, begged. Eventually (literally the day we arrived at the Mayo Clinic), they agreed to cover much of it. We charged the rest.
We stayed at some drab motel near the clinic. It had a pool, which Anna loved. She had a grand time, splashing around in the pool with a bright yellow inner tube, sleeping on a little cot beside our lumpy bed, eating pancakes and sickening syrup for breakfast. She even enjoyed the bus ride to the Neurology Center, singing "O, Susanna" over and over, as if on a pre-school field trip. Even the ravaged patients on the bus could not help smiling at her unlikely enthusiasm.
Dr. Patterson, who had an Australian accent, a Winnie-the-Pooh necktie, and a sweet, calm manner with children, confirmed the ghastly diagnosis. He ordered more tests, gave us various print-outs, spoke solemnly yet encouragingly.
"There is never a good time to get a diagnosis like this," he said. "But there is more reason for hope now than there has ever been."
He spoke of the many experimental drugs in the pipeline. He said, "A cure will be found, though it will probably be by accident." He told us of his own hopes that a drug called OGT-918 might prove an
effective amelioration for NPC.
"Anna would be a good candidate for a clinical trial when there is one," he assured us. But he acknowledged that no one knew how useful it would be, or when it might be available. "Positive thinking is what we all need right now," he added.
I tried positive thinking.
I was not very good at it.
.