As Nicholas’s third birthday approached, and with nothing provoking us to sense anything outside the ordinary, my wife, Jana, happened to notice a small number of brown splotches on his skin. Their emergence had been subtle; vaguely circular or oval in shape, and not especially large, they had surfaced at seemingly random spots on his body. She showed them to our pediatrician who, to our surprise, told us to get him checked out by an ophthalmologist. Her counsel was driven by a concern that the splotches could be indicative of a disease called neurofibromatosis, its most common form referred to as “type 1” (NF1, for short).
It was January 2008 when, to the sheer delight of his new big brother, we brought Nicholas home from the adoption agency. He was all of eleven days old. Despite the lack of any prenatal care whatsoever, all signs pointed to a perfectly healthy baby.
But as Nicholas’s third birthday approached, and with nothing provoking us to sense anything outside the ordinary, my wife, Jana, happened to notice a small number of brown splotches on his skin. Their emergence had been subtle; vaguely circular or oval in shape, and not especially large, they had surfaced at seemingly random spots on his body. She showed them to our pediatrician who, to our surprise, told us to get him checked out by an ophthalmologist.
Her counsel was driven by a concern that the splotches could be indicative of a disease called neurofibromatosis, its most common form referred to as “type 1” (NF1, for short). When the condition is present, tiny bumps – imperceptible to unaided examination, and typically benign in and of themselves – eventually form on the irises of the patient’s eyes.
The visit to the eye doctor was uneventful; much to our relief, she found nothing, but she told us to come back in a year. At that second visit – Nicholas was four years old – she found them. In medical terminology, they are called Lisch nodules, named after the ophthalmologist who discovered their connection with NF1.
There is no formal test for NF1; rather, there is an established checklist of symptoms, with two or more positives taken as an indicator of its presence. Lisch nodules and the brown splotches are both on the list. One of the doctors gave us a brochure and links to a few websites. Collectively, these resources laid out for us a well-populated continuum – a range that runs from inconsequential to life threatening – of potential outcomes for NF1 patients. There are some who, over the course of a full lifespan, never knowingly experience a single symptom; they go to their graves happily unaware that the disease had ever taken up residence in their bodies. There’s another cohort that’s far less fortunate: the roughly five percent of patients for whom the condition results in cancerous tumors.
The extensive array of possibilities between those extremes was disquieting. By the time Nicholas was categorized as an NF1 patient, the bone deformities and enlarged skull that sometimes occur would have already been apparent, so we were able to cross those off the list. As he headed off to school, we would need to watch for learning disabilities – if they were going to happen, they would likely surface no later than the third grade. Blindness or loss of hearing could emerge before or after that point, and during adolescence he might develop scoliosis. When full grown, NF1 patients are sometimes small in stature.
There are no predictors for any of this. Specific manifestations, or the severity of those manifestations, might bear no similarity whatsoever between identical twins who inherit the condition from a parent. As a general rule, however, NF1 typically results in an indeterminate number of benign tumors which can form virtually anywhere in the body. That “anywhere” can mean inside the body where, although inconspicuous to the eyes, they might exert pressure on a vital organ. More frequently, they surface in plain sight, sometimes to the point of disfigurement.
Once the Lisch nodules surfaced and the doctors classified Nicholas as an NF1 patient, my wife and I coped in different ways. Jana, imbued with all the dispositions, sensibilities, and impulses that naturally accompany motherhood, found that the doctors’ conclusions filled her with a deep, abiding sadness and provoked a measure of angst that sat lurking in the background of her day-to-day existence. But she kept these things to herself. I did my best to push the matter off to the side. At a practical level, things changed very little for us on a day-to-day basis. There was little to do. Except pray.
Jana was not yet Catholic, and while I knew she had an active prayer life, it was largely hidden from me. But as Nicholas’s doctor’s appointments approached, she would quietly settle into a fasting routine, a subtle but sure sign that she was ramping things up. Not knowing exactly how this miracle business works, my own prayers progressed through a fairly comprehensive checklist. If God, in his divine wisdom, would not completely heal Nicholas, perhaps he might restrict things a bit, keep the really bad stuff like cancer and blindness off the table. I prayed my way down this path many times, usually making allusions to those instances in scripture where Jesus had healed a child. I’m not sure if I was reminding myself or God that he had done this before.
I think that if my silent prayers had somehow been audible to disinterested bystanders, they would have sensed a genuine belief on my part that God could heal Nicholas, as well as a conviction that sending up such a request wasn’t an entirely unreasonable thing to do. But if one of those imaginary bystanders had asked me what I expected would eventually happen, I don’t have any idea how I might have answered that question.
On March 8, 2016, I took Nicholas – now eight years old – in for his annual appointment with the ophthalmologist. These visits were never quick: there was a protocol that always entailed a few rounds of preliminaries with technicians and interns. But one look at the waiting area told me that we were in for a long afternoon.
When our name was finally called, we were escorted to an examination room where Nicholas climbed into the patient’s chair. I sat off to the side. Eventually, a woman walked in – maybe a technician, maybe an intern.