Not without Prayer

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.

Photograph by Firefighter Montreal, stock.adobe.com

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. She shined a bright light across the surface of Nicholas’s eyes using a handheld device I had never seen before and matter-of-factly mentioned something about not seeing any Lisch nodules.

“Wait – no Lisch nodules? He’s had them for years!”

I actually don’t remember exactly what I said, but it was something like that. It had taken me a moment to react, and she was nearly out of the room by the time I spoke. She turned around, walked back over to Nicholas, and looked again. Still finding nothing, she acknowledged that maybe her flashlight wasn’t up to the task. A doctor would be in momentarily. Maybe he would find them.

In time, the doctor walked in and sat on one of those round cushioned rolling stools that seem to be standard issue in the medical community. Wheeling himself in Nicholas’s direction, he reached up and took hold of an instrument that sat suspended at the end of a mechanical arm – a significant technological upgrade over the handheld flashlight – and began his examination. After looking at both eyes, and without saying anything, he propelled himself over to a computer monitor, cradled a mouse in his hand, and began scrolling through Nicholas’s medical records.

I watched various forms of documentation roll past, including close-up photographs of Nicholas’s eyes that had been taken on previous visits. I remembered once being shown the Lisch nodules on those pictures – they were clearly visible, even to me. The doctor was silent as he scrolled, stopping periodically to read. He examined Nicholas’s eyes again. Then, with some suddenness, he said to a technician, “Let’s dilate!”

It was voiced as a command, issued with such authority that I didn’t think to question him. By the time I gathered myself, remembering that dilation is entirely unrelated to the detection and examination of Lisch nodules, the doctor was out the door and off to his next patient.

Retaining our cognitive grip on the very believability of miracles, C. S. Lewis tells us, won’t be easy. In fact, it is hard work.

We eventually found ourselves in the examination room of the ophthalmologist, the doctor who, at each of our four prior annual visits, had confirmed the presence of Lisch nodules on Nicholas’s irises. She greeted us with the same cheery comportment – helpful, I imagine, in putting her kid patients and their parents at ease – that had been a staple across all of our previous encounters. After dispensing with the requisite chit chat, and eschewing the round stool – she always had a preference for standing – she peered through the lens of her equipment, scrutinizing each of Nicholas’s eyes. Without saying anything, she turned to a computer screen, reached for a mouse, and started scrolling.

Having apparently seen enough to confirm that what she could not find on Nicholas’s eyes should, by all accounts, have been there, she turned and told me that the Lisch nodules appeared to be gone.

I cannot remember her exact words, partly because I was distracted by my own mental processing, but I think primarily because they were tinged with a vague and vacuous tenor that deprived them of any conviction. There was something in her voice inflection and body language that left me wondering whether she believed them herself. It turns out, she told me, that the Lisch nodules she had been seeing for the past four years, and that the ophthalmologist before her saw, were not – despite not a trace of uncertainty between the two of them up to this point – actually Lisch nodules after all. Just some manner of stubble that finally resolved itself over the course of the past year.

Huh.

Shortly after that visit, Jana met with our pediatrician for an unrelated consultation about allergies. Relaying to her what had happened, Jana asked if Lisch nodules could disappear. She responded with a “no.” But it was one of those drawn-out, three-syllable nos, like what you might get if, while packed into a crowded elevator, you asked an acquaintance whether she believes there’s an alien space craft tucked away in a secret hangar at Area 51.

But that wasn’t all. She quickly added, “Not without prayer.”

Although it would scarcely surprise me, I don’t know if she is a person of faith. Until now, there had been neither explicit affirmation nor subtle nod in that direction. No crucifix dangling from a chain around the neck, no casual mention of church services or God or Jesus or anything else. Whatever the case, the news of disappearing Lisch nodules was apparently enough to tease out that qualifier.

It’s a familiar story. It had been a few days since Jesus was crucified and buried, and Peter and six of the other disciples, likely wondering what to do next, decided to go fishing on the Sea of Tiberias. Given how things with Jesus had seemingly played out, perhaps they weren’t too surprised when a full night of rocking on the water yielded not a single fish. And then, out of nowhere, the resurrected Jesus appeared on the shore. They didn’t recognize him, but having nothing to lose, they followed along when he told them to cast their net off the right side of the boat. The resulting catch was more than they could handle. The disciples somehow worked their way to shore with their boats and their 153 fish in tow. Then John tells us this: “Now none of the disciples dared ask him, ‘Who are you?’ They knew it was the Lord.”

When it came to the resurrected Jesus, we see in all four Gospels that even Jesus’ closest followers struggled to arrive at a place of belief. Getting there – accepting that he had risen, even recognizing him – usually required a divine nudge of one sort or another.

They wanted to ask, “Who are you?” But the inexplicable, unwieldy haul of fish – his disciples had seen this miracle once before. They wanted to ask. But they didn’t dare. They knew it was the Lord.

It would, I think, have been the same if Jesus, his identity still cloaked, had, there before them on the shore, expelled a demon or cleansed a leper or calmed a storm on the sea or restored sight to a man who had been blind from birth.

Or told a royal official that his sick child would live.

Did God heal my child? Did Jesus tell him to pick up his mat and go home? It appears so. But my tenuous acceptance of that reality has settled upon me only slowly, over time. If I am to be truthful, I must admit that the nagging questions never disappear completely: Did this really happen?

In his book Miracles, C. S. Lewis takes a philosophical tack and builds, in workmanlike fashion, the case for the plausibility of miracles – the rational basis for expecting them and for acknowledging their occurrence when they happen, infrequent though they may be. In the epilogue to that book, addressing readers who have followed his argument to the end and find themselves compelled to give the miracle accounts of the New Testament a fair hearing, he commences with a warning:

And when you turn from the New Testament to modern scholars, remember that you go as a sheep among wolves. Naturalistic assumptions, beggings of the question … will meet you on every side – even from the pens of clergymen.… We all have Naturalism in our bones and even conversion does not at once work the infection out of our system. Its assumptions rush back upon the mind the moment vigilance is relaxed.

Retaining our cognitive grip on the very believability of miracles, Lewis is telling us, won’t be easy. In fact, it’s going to be hard work: “Your rational thinking,” he states, “has no foothold in your merely natural consciousness except what it wins and maintains by conquest.” Skepticism is in the water we drink. It’s in the air we breathe.

I know kids who are stricken with serious health issues, burdens that they will likely carry for the remainder of their lives. There are obviously others beyond counting, and some of them will never make it out of childhood. That reality has been no small source of angst in my composition of this piece; we are no different than other parents who pray for their ailing children. Scripture tells us that God’s ways are inscrutable.

I know that there are many who will doubt this entire affair, unconvinced not only by my account but also by the medical records. Science will explain this someday, they might think to themselves.

But none of this should deter me from telling about my son, about the gift that God has given to him and to us. Any attempt I might make at an adequate expression of our gratitude is destined to fail. This essay – a reminder that the compassionate Christ, crucified, buried, and risen from the dead, is still healing the sick – is the best that I can do. It’s also something I must do – you don’t hide a lamp under a bushel. And besides, it’s a good story, and good stories ought to be told.