what calvin sees

Our fifteen-year-old son, Calvin, has ocular and cerebral visual impairments. His eyeballs are quite elongated, causing his blurred vision, and the lack of white matter in his brain likely may affect the speed and manner in which images received by his retina are sent to his brain. People with 20/200 vision are considered legally blind; Calvin's vision without glasses is 20/1000. With glasses, Calvin's vision is estimated to be somewhere between 20/100 and 20/130, though it is difficult to know for sure.

Yesterday, I saw these gorgeous oil paintings made by Philip Barlow, depicting how visually impaired people might see their surroundings. Of course, I thought about Calvin, and wondered if this is how he sees the world.

click any image to enlarge.

Oil paintings by Philip Barlow

regarding calvin

As my boy sleeps in my lap, in his bed, in our bed, on the couch, I hear the birds chirping outside. I feel the rumble of passing motorcycles and cars, see students strolling down the sidewalk. A week of school has come and gone, yet my boy remains sick at home. In my arms, we rest and pass the hours.

Yesterday, while on the couch together, Calvin looked right at me. This gift is rarely granted, and I found myself luxuriating in his pool-blue and yellow-flecked eyes. I did not take his gaze for granted; it's so rare that I see him look at me—almost never, it seems. But sometimes, when I put my face smack-dab in front of his, he does regard me. As a baby, if memory serves, he used to do it more often. I remember the day he got his glasses when he was a tiny eleven-month-old. It was like I could see the world flooding into his eyes—eyes which before had likely seen only shapes and colors.

Now, for whatever reason (autism, visual fields, seizures, drug side effects) Calvin usually disregards or looks at me peripherally. His eyes jerk and rove from his nystagmus. One eye often turns in, a phenomenon that, vexingly, his former ophthalmologist regularly denied, explaining it away as an optical illusion. No matter how confident I was of my son's eye-drifting or tugging-in (I'm the resident expert in observing Calvin closely) the doctor still rebuffed me.

Tomorrow, hopefully, Calvin will attend his first day of high school. He'll be greeted, fed, diapered, and escorted by a teacher and a staff who have rarely, if ever, worked closely with him. My anxiety is high, afraid he'll choke on food he doesn't chew well, fearful he'll fall off balance on the stairs or run into a door jam like he did this morning. Michael and I understand that Calvin, due to his poor vision (which glasses don't fully correct), his lack of coordination, and caregiver overconfidence or undervigilance, is a walking disaster, an accident waiting to happen. My hope is that the folks at school will regard him closely, will see what he sees and what he doesn't.

Calvin's first day with glasses when he was eleven months old.

doctor strominger

Yesterday, we took a day trip to visit one of Boston's top doctors, a man we've been taking Calvin to see since before he was a year old. His name is Mitchell Strominger, and he is a neuro-ophthalmologist. We came upon him after deciding to ditch a local ophthalmologist, one with a notoriously bad bedside manner, who said that Calvin's vision wasn't bad enough to warrant glasses, though everything Calvin did and didn't do told us differently.

Besides zeroing in on Calvin's vision, not only to help him see better but to improve his development, Doctor Strominger was instrumental in discovering Calvin's hypothyroidism, telling us that the enlarged ventricles in Calvin's brain might be affecting his pituitary gland, which could result in problems with his thyroid functions. He recommended that we bring Calvin to see an endocrinologist. There, we learned that Doctor Strominger had been right, and we started Calvin on a synthetic thyroid replacement.

Doctor Strominger, having confirmed that Calvin's vision was 20/1000—ostensibly five times worse than legally blind—wrote Calvin a prescription for glasses when he was only eleven months old. A year or two later the doc added prisms to the prescription since Calvin had developed a habit of looking over the glasses instead of through them. When Calvin was just five years old Doc Strom performed a flawless surgery, delicately cutting and reattaching the muscles of the eyeballs to correct Calvin's esotropia.

When we told Doctor Strominger that Calvin was taking cannabis oil for his seizures he didn't bat an eye, and agreed with me that the low pressure in Calvin's eye might be due to the oil (one of Calvin's anticonvulsant medications, clobazam, can cause glaucoma, which can be treated successfully with cannabis use.)

Doctor Strominger is gentle and kind, funny and smart and patient. He listens well and explains things clearly. He has cute toys and makes a convincing duck quack. He's one of the good ones, the kind you want on your side, the kind you trust with your kid, the kind you don't mind too much driving three hours to see, the kind who has a great staff, the kind you thank your lucky stars that you ever met.

Thanks, Doctor Strominger. Put simply, you rock.

perfect day?

Yesterday was a perfect day in Maine: sventy-five degrees, blue skies, a few wispy clouds floating by on a warm breeze. Perfect. So I took Calvin outside to enjoy it with him but he was a wreck. Since the multiple and lengthy seizures on Tuesday, and the subsequent antiepileptic medicine increase, he’s a cooked noodle, not even an al dente noodle—a veritable wet blanket.

So yesterday he couldn’t—or wouldn’t—walk by himself (as I hold his harness) or by holding my hand. I had to pretty much support his entire flaccid weight myself. He’d take a few wobbly steps then put his hands out to sit, or he just all together fell. Then I tried holding both of his hands as I shuffled wide-stepped behind him but he just planted his feet firmly and leaned forward. He was only content lying on the grass attempting to eat it and trying to stare at the sun, in which case (which is always) I must cast the shadow of my body over him or he’ll burn his retinas out like the dude with the milky-white eyes on Kung Fu.

Calvin tries anything and everything to catch a glimpse of the precious rays ... through the dappled cover of leafy trees, reflections off of windshields and chrome in the grocer parking lot, even the point of light refracting through the back of his eyeglass lens when the sun is behind him. You name it, he finds a way.

Hats don’t work because he simply lifts his head. When I carry him—which I try to do as little as possible—I prop him on my hip facing away from the burning orb, but he cranes his neck and leans way back to catch a glimpse. He’s mesmerized by that yellow ball of fire. When I take him for walks in the stroller, if the sun is low and shining under his canopy, I have to push him backwards so he doesn’t fixate on the white light.

All this beam-gazing hinders Calvin’s walking. If he’s trying to get his sun-fix he doesn’t look where he is going. And as if his balance wasn’t already sucky enough, good old Mr. Sunshine throws a monkey wrench square into my son’s wandering eyes every time.

Perfect day? On second thought maybe not.

Halloween sun 2007

a part of everything

As a girl I spent hours by myself. On long, hot summer days, after my yard work was finished, I stepped into my navy and white hibiscus print swimsuit and grabbed a large citrus-colored towel edged with orange pompoms. In the freezer were trays of frozen grape Kool-Aid cubes. With a single paper towel folded twice lengthwise I wrapped the bottom of the cube so I could lick it like a Popsicle, staining my tongue and lips dark purple.

Out on the short grass I spread my towel in a spot of full sun between a tangled flowering cherry with a shiny, striped trunk and a few of my favorite gigantic maples, each sporting leaves the size of dinner plates. Being the sun goddess I was, I squeezed aromatic oil from a burnt sienna Hawaiian Tropic bottle and smoothed the thick liquid over my bronze limbs. I lay on my back gazing up at the flawless sky. Often, a pencil thin white line trailing from a tiny speck streamed diagonally across my sky, then widened into a billowy cotton swath eventually dissolving into a sugary haze, scattered into scalloped waves by the wind. Other times I heard only the familiar drone of a small aircraft buzzing low behind the trees.

When Calvin was about two and a half, shortly after he had started having to take drugs for his epilepsy, we used to lie on that same orange, yellow and green flowered towel from my youth. As planes passed by I’d remark about their sound and point into the sky, “there’s an airplane up in the sky, do you hear it?” I wondered if he understood what I was saying; it was clear he couldn’t see them.

I think back fondly of my time alone outside with the world, the oneness I felt with the universe, even at a young age, and I know—and grieve—that Calvin will never appreciate that same independent solitude that I enjoyed as a girl in my own backyard. But still, Calvin and I, like that jet stream, began with a burst of energy—in sharp focus—making a deliberate mark, and as time has gone by we've morphed and changed and become softer, more beautiful, by shifting winds—sometimes harsh—that have shaped and sculpted us until finally we'll dissolve and, most sublimely, become a part of everything.

indigo eyes

A friend of ours was telling us about his poor vision as a kid. One thing he recalled about the day he got glasses was, for the first time, seeing the incredible detail of individual leaves on the trees. He had held leaves before, seen them on the ground and knew they came from the trees, but before he got glasses the trees’ canopies appeared simply as a mass of color—green in summer and golden or scarlet in fall.

In the early days, before Calvin’s epilepsy eclipsed everything in his realm, I used to think a lot more about his vision, or lack thereof. His world existed only within a few inches from his face. Even after getting glasses when he was eleven months old, it seemed that, although his acuity may have improved from 20/1000 to 20/130, his brain could only interpret that which was a few feet away and static or slow moving. It took years for Calvin’s visual tracking to develop the slightest bit, and the seizures and drugs haven't helped any. He still doesn’t appear to register passing cars or trucks or much of anything further than ten or fifteen feet away.

I remember one summer when my nephew was visiting. I had seen a northern flicker woodpecker in a tall backyard pine and had pointed it out. My nephew spotted it almost immediately, though its brownish-grey speckled body blended well with the tree’s bark. At that moment it struck me how amazing our eyesight is and how Calvin would likely never experience seeing this kind of fine detail in the visually intricate world that surrounds him.

Instead, we bring the world to Calvin. I walk him to the trees so he can see and feel the rough, ridged bark. I pick him up to touch and regard supple veiny spring leaves and brittle autumn ones. I hand him prickly pine cones to explore and he inevitably wants to eat them all. Through this narrative of life Calvin has learned to see as much through sound and touch as through his amazingly beautiful indigo eyes.

baby steps

I came across this video today while looking back on email correspondences. In it Calvin, who is two and a half, is walking to me from his nurse's husband while his nurse shoots the video. Seeing it again I am surprised at how small he is, but his skinny legs protruding from a gaping diaper make me smile.

Calvin loved to practice walking and would stumble back and forth between me and Michael time after time after time with the cutest little grin on his face. Sometimes he'd be so happy he'd breath excitedly, as if hyperventilating, then start to giggle.

Nearly every day these past four and a half years he has practiced his walking. Calvin has made some progress, though we must still keep a tight hold on his safety harness. We take care coming around corners to ensure he doesn't clip an ear or bonk his nose. As he approaches objects we take up the slack in the harness reins in the likely case he will misjudge the distance and crash. And though Calvin no longer sways quite like the drunken sailor in the video, his balance and coordination are still very much compromised. The problem with his balance could be his brain's lack of white matter, or it could be his vision, the uncontrolled seizures, the antiepileptic drug side effects or some wretched combination of all of the aforementioned.

But Calvin is a Superkid, a M-F Badass, as one friend most endearingly deemed him, and no matter the obstacle he tries to conquer it with great determination, even if just by taking baby steps. I can learn a lesson or two from him.

legally blind times five

My six year old son is legally blind—times five—and he suffers both ocular and cerebral visual impairments besides the epilepsy and other developmental delays.

As a preemie Calvin’s eyes appeared large and inky like a shark’s. It was clear that he really wasn’t seeing us until one day, when he was about four months old, I was cradling him in my arms as he was crying. That moment—looking down at him—was the first time he locked gaze with me as tears welled up and cascaded down our cheeks.

My husband, who is a professional photographer, had a theory. While crying, Calvin squinted which might, he said, produce the effect of a small aperture bringing objects into focus. He also thought it possible that Calvin’s tears acted as lenses, and it was his opinion that—under those circumstances—Calvin was seeing me.

Hastily, we took him to an ophthalmologist. Over the next several months at each of three checkups we expressed our great concern about Calvin’s vision and the impact that might have on his development. The doctor responded to us, each time with a hideous bedside manner, saying that while Calvin’s vision was poor it wasn’t bad enough to warrant glasses. We stopped seeing that doc.

Soon after, a neuro-ophthalmologist in Boston informed us that Calvin’s acuity was 20/1000 (legally blind is considered to be 20/200) and that he likely had a cerebral impairment. He also suffered nystagmus, which is the constant jerking and roving movement of his eyes, as well as intermittent esotropic strabismus, or crossed eyes. Glasses were prescribed immediately. Calvin was just eleven months old.

What remains unclear about Calvin’s vision is not his acuity but, because of his cerebral visual impairment, the way his brain interprets the images he sees. At six and a half he is just beginning to show an awareness for obstacles on the ground that he must step over or around. His depth perception never developed and he is in constant danger of running into corners, misjudging distances and falling over our sleeping dog. The antiepileptic drugs exacerbate the problem. So, I hold on tightly to his harness in case he falls, and we practice walking around the house in unison most of the day.

What is clear is that Calvin's vision, albeit still poor, is improving. A successful eye surgery to correct his esotropia has helped a lot, and for that we are very thankful. Now if he would just stop poking his eyes, but that is another story.