Inspired by author John Green’s show of vulnerability during an interview on Fresh Air, I’ve finally decided to share this very personal story with the hope that it might help other children and their parents.
“Mommy, look. The lights don’t work.”
My little boy, who had turned eight two weeks earlier, flicked the hall light switch—
The lights went on.
I’d already called the doctor the evening before, when my son complained he was having trouble reading. The doctor suggested his eyes were tired. Dry maybe, because of the winter weather.
“It’s probably nothing,” he said.
I said, “It’s not nothing.”
“Bring him to the office in the morning.”
That night, like nearly every other since my son was born, I read aloud to him. We were deep in the Harry Potter series, and in the bedtime hour, where darkness is the norm and dreams begin to beckon, the vivid imagery of Harry Potter and the Order of the Phoenix transported us both from my son’s room to Harry’s wizarding world, the story soothing us like a familiar song. We’d been to the real Wizarding World of Harry Potter in Orlando just six weeks earlier—although ‘real’ may not be the best word to describe the wonderful fantasy-fulfilling destination.
The next morning didn’t feel real either. By 9am when we arrived at the pediatrician’s office, my son couldn’t see the eye chart. By the time we got to the eye doctor, he couldn’t see the chair in the examination room.
We drove to the emergency room at Jersey Shore Hospital, the children’s wing. It was empty, yet the attention we received was minimal. I had a bad feeling. Check in, triage—both processes were completely chaotic. The seats in the waiting room were dirty. I wanted to leave.
The head of neurology was on vacation. When I asked to speak to the neurologist on call, someone on staff handed me a piece of paper. It was a bio, with a picture of the doctor.
“Your son will need to undergo a battery of tests.”
The list included a spinal tap, i.e., a lumbar puncture, but there was no pediatric team available to perform the delicate procedure, and pediatric specialists—I was told over and over—were definitely necessary.
We waited hours for a room. The staff in charge of assigning one wasn’t told that we were there. By this time, my son was blind, except for the ability to see shadows in front of his left eye.
There were serious questions to consider. Was there pressure on the brain? Would a lumbar puncture reduce it? Meanwhile, my son needed an MRI. A CAT scan. But since no one knew what was wrong, anesthesia for the MRI wasn’t an option. Nor was injecting my son with a substance that would allow them to see contrast if he did get an MRI. Was he the victim of a virus? Was there swelling? Antibiotics, anti-inflammatories—not options.
Except for the few horrific moments when the shunt was placed, (for a blood draw, with an eye toward an IV drip at some point), my son remained calm—calm, and fascinated. That was my boy during the MRI, (without contrast), which was finally given without anesthesia. An hour of stillness, of listening to the magnetic resonance imaging machine, the knocking sounds and whirring which, when aurally embraced, are musical.
I stood for that hour, and held my son’s foot. So he’d know I was there. So he’d know he wasn’t alone. I never left his side. Harry Potter and the Order of the Phoenix, the longest novel of the Harry Potter series and apparently my personal charm of protection, never left my side. All through the waiting—in the eye doctor’s office, in the hospital room that night, I read, and read, and read aloud. Call it mother’s intuition, or a woman’s way of knowing—or maybe it was just a bit of magic. Somehow, I knew to grab the book from my son’s bedside table, before we left the house that day.
Sunday morning. The world outside the hospital windows was white. Was frozen.
The neurologist came flying into the room, breathless and wild haired, shocking my son and myself out of a fitful sleep.
“There’s a team—they don’t normally do children, but they’re willing to do the spinal and—”
“Willing?” I gestured to the door, to the hallway where we should clearly be having this conversation. “Willing.” I repeated. She nodded enthusiastically and began speaking at high-speed about how I needed to sign consent forms, how she needed to let the team know, because it was Sunday, and they—
The doctor knew, I realized, that she should have come in the day before to see my son. She knew, that what was happening to him could be very, very serious.
“If it had been your child,” I pressed, “would you have been here yesterday?”
Her smile fell, finally. She admitted that she hadn’t realized how severe my son’s condition was.
“You spoke to me yesterday,” I said. “How the fuck did you not realize?”
The doctor looked shocked. More than that though she looked guilty.
“And now,” I continued, “Here you are, after telling me yesterday that nothing could be done because there wasn’t a pediatric team available—now you’re saying it’s okay to go ahead with a procedure that could leave my son paralyzed because you have a team that normally works on adults who is willing?”
That’s when she told me about another hospital. “Children’s Hospital of Philadelphia,” she said, “is one of the best hospitals for children in the country.”
I said, “I want to go.”
My mother, on the phone, counseled me to stay put—we all knew moving my son was a risk. But I knew—somehow I knew—that staying where we were was more of a risk.
“I want to go now,” I said.
They would have helicoptered us, but there was too much snow. So we went by ambulance.
The two EMTs had names I’ve forgotten, but together they sounded like a wine company. The two men also had kindness, raying out from their eyes, from their smiles, like light.
“Lumos!” demands Harry Potter, waving his wand, when he needs to spark a glow in the darkness.
I didn’t have a wand, or a light-giving spell, but those two men were there for me, and I had Harry Potter and the Order of the Phoenix. I read aloud to my son for the entire two-hour ride.
Halfway down to Philly, I told the EMTs my son was supposed to be hooked up to an IV drip.
The one sitting in the back with us, said, “Really? They didn’t tell us that.”
I said, “Really.”
He connected the bag.
Two hours. Lights flashing.
My son. Looking up at me. Though he couldn’t see me.
We arrived at CHOP. The doctors came in groups. They asked all kinds of questions. But they didn’t just ask me those questions. They asked my son. They treated him like the person he is.
We stayed four nights. The lumbar puncture—the only time my son had to be anesthetized, the only time I wasn’t allowed to be with him—was the hardest. I waited out in a large lounge. People nearby were crying. I was crying, but just a little. Because I had already decided, if my son remained blind, well, there were worse things. They were happening all around me.
Over the next few days, between Harry Potter reading marathons and cuddle sessions with his new stuffed animals, my son received intravenous steroids that began to restore his sight.
To me, the recovery of his vision was nothing short of miraculous, but my boy was still relegated to a hospital bed, so I was thankful that Harry Potter and the Order of the Phoenix is 870 pages long. It is also increasingly complex. Harry faces new challenges and there is a deepening of mysteries. I didn’t fail to see the parallel.
My father said, “I don’t know how you do it, how you can sit and read aloud for hours like that.”
I told him it was because I wanted to find out what happened next in the story and that was true, but also, it was because reading to my boy was something I could do in a time where I felt completely powerless. As if The Order of the Phoenix was a Sanskrit mantra or a prayer, I put my passion into reading for my son. I read as if it could save his sight. I read to save my sanity. That book was my wand.
The doctors came and went, their smiles growing every brighter. The kitchen sent up mac and cheese, and that was deeply comforting. But nothing gave us comfort like Harry Potter, who, although he is a wizard, is still in many ways a boy. An ordinary boy, just like my son.
Ten days at home, where I carefully measured ever decreasing doses of oral steroids with almost paranoid precision. Another trip to CHOP, where my son enjoyed another visit with Dr. Liu, the rock star ophthalmologist, and half the neurology department. Everyone was optimistic.
I lifted my head, and looked around.
Today, with the four-year anniversary of my son’s ‘adventure’ approaching, after dozens of trips to Philadelphia, and about 1200 days of vitamin D supplements, after countless blood draws, many MRIs, and as just as many neurological exams, my boy is fine. He was very lucky that the optic neuritis didn’t do any permanent damage—his vision is 20/20. Plus, he’s seen a tiger up close at the Philadelphia zoo, visited Maillardet’s automaton at the Franklin Institute, fallen in love with Philly cheesesteaks, and thinks maybe he’d like to go to Drexel—though that may be mostly because of their dragon. My son’s been partial to the fire-breathing beasts since he was introduced to Norbert, in the very first Harry Potter book, Harry Potter and the Philosopher’s Stone.
The Philosopher’s Stone has many properties. It’s sometimes called the ‘elixir of life’. It is useful for rejuvenation. I can vouch for that.
My son is now a participant in a study at CHOP, and I’m glad, because this means he will continue to see the neurologists at Children’s Hospital of Philadelphia yearly, until he is eighteen.
It’s been determined that my son’s optic neuritis episode was not related to MS—but we still don’t know what it was related to. And that we don’t know—is a good thing. The fact that we don’t know means that the doctors at CHOP have ruled out all serious illnesses.
Still, I will continue to swab the inside of my son’s cheek once a month for the next year. (Oversize Q-tips, tiny containers, fridge to freezer, DNA—you get the idea.) I will continue to make sure he takes 4,000 IUs of vitamin D daily. And although I will continue to take him to the excellent local eye doctor any time he’s at all concerned about his eyes—my son is extra sensitive now as far as his eyes go, and I am hyper vigilant—we recently saw the ophthalmologist at CHOP for the last time.
As he examined the pale scarring at the back of my son’s eyes, Dr. Liu said,
“Anyone who looks—will see this. For the rest of your son’s life, it will be there. He has his scar now.”
Did you hear that, Harry?