Lessons about Life's Blind Spots

I attended a forum today at the local university. I will be honest, while it applies loosely to my educational training, the real reason for leaving the house this morning was not the topic of the forum. It was simply to get out of the house. The world of isolation and the cold of winter are both getting me down. That said, I am glad I went. The forum's topic was issues of the global church and, more broadly, issues of cross-cultural understanding. In short, we need each other. We need the perspectives that can be gained only through community.

As I listened, I knew two things:
1. These presenters had known the rawness of life. They have learned to walk when things are difficult and the weight seems too burdensome to bear.

While that is not surprising, I discovered that, because of our time in the NICU, I could relate to their stories in a new way. I learned these lessons in the NICU and they learned these lessons across the globe, but the way we responded -- the way God led us when things were bleakest and we had no more of our own strength -- were so similar. Their experiences resonated with one another, and with mine. I was nourished.

2. Jonathan's life can speak to our understanding of the world around us. Particularly, his vision helps me understand my own vision. So, in the "Lessons Learned through a Micro-Preemie" spirit of this blog, as I listened, I penned these thoughts.

As you, the blog reader, know, when my son was just a few months old, he was diagnosed with the worst form of retinopathy of prematurity, called Rush ROP, or Aggressive Posterior Retinopathy of Prematurity.  The vessels in his eyes were not growing correctly, and left untreated, his retina would become detached and he would become blind. The surgery to preserve his central vision would come with a cost, though. The scars the lasers left would limit or eliminate his periphery vision.

As you also know, the surgery worked. While he wears glasses, his central vision is preserved and (with the glasses) he can see even the smallest bead clearly.

At the last appointment with his eye doctor, I asked when Jonathan would be able to tell us what he couldn't see, so we could know how bad his tunnel vision was.

The doctor turned his head slightly and paused. "He will never be able to tell you what he cannot see," he said.

He further explained, "He will not see blind spots. He will not think he has tunnel vision. His brain will fill in everything." From memory or conjecture, my son's brain would make up for his visual failings, so things would always look normal to him.  Nothing is blocked out.

As I listened to the speakers at today's forum discuss our understanding of our world, it occurred to me -- we all have my son's vision. We all anchor our beings by focusing on things that make sense to us. We limit our own vision to bring greater focus to the world around us. It makes sense, but we must be aware that these blind spots exist. We will not see them as blank areas, because our brains will fill in those spots as best as possible.

This is why we should turn our heads from time to time and focus elsewhere. The blind spots must be acknowledged and questioned, even if we don't feel those spots exist.

Prior to getting his glasses, Jonathan spent a lot of time looking at his hands. It was the only bit of his world that he could see clearly. I wonder what we can do to think more broadly, to look beyond ourselves, to earn a new perspective.  I wonder how many of us, given the chance, would aim for that perspective. If we're going to be honest, we'll admit that it is easier and less painful to fill in the blind spots in our head than to turn that head and seek new clarity.

These are today's lessons learned from my micropreemie, and today's challenge.

The Vision of Trees - ROP

This post first appeared in Catapult Magazine and is a raw look at how I processed JAM's potential blindness when he was diagnosed with one of the worst versions of retinopathy of prematurity, "AP-ROP" or "Rush Disease," and I found myself coming to terms with the knowledge that, even with laser eye surgery, he would never have normal vision and may never see more than shadows. 

 

Emerald, orange and yellow flashed at crisp sunlight, shading my windshield of dead bugs. I arched my neck to look past the filth. Leaves had never been those colors before. I thought I knew what color was, but this display was different. Never in the history of the world have trees given such delicious colors. On this day the trees had decided to become deeper, more majestic, merged together to make the most beautiful bouquet, each at perfect peak.

 

Our crabapple tree, just days before his birth.

I knew why they’d done this. It was for me, in celebration and in mourning. They’d heard his news. He’d make it to his first birthday. That was almost certain. The worst was behind us. But his eyes may never take in an autumnal feast. They had called it one of the worst forms of retinopathy of prematurity. Fast progressing.  They showed me the pictures, thick veins twisting to and fro, pulling at the thin retinas, stuck beneath a protein cloud that prevented veins from growing into the sunlight. He may soon be blind.

 

So the trees chose that day, as I drove home from the hospital with this news, to give me their fruits — a gift and a sacrifice.

The wind blew hard in the weeks that came. I didn’t mind at first. It took away the stifling summer, with its long days and no answers. It threw aside the canopy of leaves, the curtain that hid the true frame of things, giving cool clarity.

 

The trees showed off their shape. Some grew straight and strong. Their roots were secure. Nearly each branch would gain another set of leaves to join in next year’s autumnal feast.

 

It was the crab apples that darkened my vision. They would pull at my eyes as I drove so that I could not look away. Gnarly, thick, with roots that yanked at the retina of the ground like the vessels in my son’s eyes, unable to reach further into the sky.  The branches on the bottom had died off, shaded by the new growth that would not grow high enough, would not let enough sunlight through.

 

I wanted his eyes to be maples, tall and thin, stable and continually reaching for the edge of their world. Maples could see. Apples were full of retinopathy of prematurity, and that made it impossible to stretch high enough.

 

Everywhere vessels called branches flashed to my retina images of his eyes. I wanted the canopy of colors back again. Why hadn’t I minded on the day when the leaf curtain left the sky? I wanted it back, to shield and clothe the tree frames, to help me forget blindness, darkness, to help me see light again. A tree is a tree, always. I tried to convince myself it didn’t matter its frame. Please, give me back light and color and beauty. Show me your leaves, not gnarly death. Leaves give hope.

 

I parked my car.  Time for footsteps, for movement forward even if this is not the road I’d have chosen. Push on, feet heavy, anticipating a long, dark winter. At that moment of cold reality, and without warning, the leaves beneath me gave way. With their final cry, they gave a gift.

 

Crunch.

 

Crunch — kick — crunch.

 

Sunlight hit my forehead, warming my face. Dark winter was not yet here.

 

I looked down again, with purpose, looking for the crunchiest leaves.

 

Crunch, crunch, crunch.

 

The oak trees might be brown and ugly, but they won every crunching competition. The feeling under my feet was satisfying, the heels on my shoes were best for crunching. I liked the small almond apple leaves for the kick, the way they gathered close and exploded into the air.

 

The texture of the world took shape. And the texture of the world was good.

 

The gift came from both the short and tall in the woods and on garden paths. The gift required no light, no color, yet it was still beautiful.

 

Without light, there is still beauty. In beauty, there is vision. My vision was made new.

 

I saw a child, healthy and four, crunching oak leaves in his fists, laughing and throwing them into the unreachable and unseeable sky, basking in warm sunlight, unaware that his eyes were like the crab apple tree that threw speckles of cool on his forehead.

 

He was going to live. And life would be good. I would make it so. I would pass to him the gifts of the trees.