If I could, I'd preserve the light in his eyes forever, grant his vision the pristine clarity of fitted spectacles. I'd stop time, everything around him so that he could savor the world at his own tempo. I want to cherish him, my son Raphael, give him everything I know and more, bless him with all the riches and fineries, with glory and cut-out crowns, with remote-controlled racecars and gameboards. When beside him, I'm colossal, large, and broad enough that I could swallow him, cast my body over his, and dome him like a pearl. I scoot over, so close that I wonder if he can register the sound of my heartbeats, but my son's spellbound by the sky, by the shifting rounded edges of the flocculent cumuli.
"What are you thinking about, Raph?"
"They're just so big," he shrugs. "It must be pretty cool to be inside one."
I let out a chuckle, but the thought of my son trapped in the daze of a never-ending fog makes me feel uncomfortable. "Yeah? And where's this coming from?"
"I don't know. I just think it'd be kind of fun," Raphael says without taking his eyes off the clouds.
I want to ask him what he sees, but the thought of what he'll respond if I do still frightens me. Does he notice how one of the clouds looks like a rabbit, with its nose pinching out and an ear drooping to the side? Can he see the whisps, how parts of the white masses tear away in thin strands? He can't; I'm sure he can't —specific details like these are no longer perceived by him. All my son can really see at this point is the blue above us, the whiteness that spreads out in scattered tufts of cotton, and if he turns his head, he'll see the blanket of grass, green splashes on the tops of the trees, and me, his Dad. How clearly can he see me?
I'm running out of time —I know this. Soon my son will have lost it all, his sight, and in every second that passes when I'm not working, not researching, another child, just like Raphael, has succumbed to darkness, to a place devoid of stars, forms, or shapes, cast out, wandering in an open, black space. But what should I do, lock him in his room or preserve him like a framed moth? He's still my son, and I'm still his Dad, and on sunny days like these, should I really deprive him of the world? I feel guilty for being here, enjoying him, watching time pass us by while the clouds break away in beach foam, but I would feel worse if I left, and in my absence, he never saw me again.
It's hospital protocol that every child be tested upon birth. They poked my son's toes, plucked a strand of his thin hair, and peered into his soul through the dense, reflective lens of an ocular monocle. His eyes were haunting and beautiful, the size of gumdrops and bright like silicon. I remember looking at him inside the incubator, his podgy body, how his thighs and arms were so plump that I joked to his mother that he was wearing floaters. He was pale, but not abnormally so, and he energetically jostled his limbs while stuck on his back like a sea turtle.
Hours later, the doctors had returned, and our fears were confirmed.
In the beginning, I thought it could have been a mistake, an error in testing. Raph learned to walk with such ease and started reading at the age of three; his motor skills were sharp, so quick, and reactive that I couldn't believe there was any chance of him going through any hardships or difficulties. I thought —and sometimes I still do— that Raphael could be the exception, the golden rule, that he'd display the miraculous and unexplained magical resistance to such a curse, that he'd grow, live, and thrive unaffected by anything. My son's gone through so much: he's been poked and prodded, he's had to accept that he eventually won't be able to read a comic book or watch a movie, that his world will change from lurid to blurred, from acute angles, elaborate layers, and textured hues to messy, unrecognizable brushstrokes, from light, to grainy and then finally dark.
Oculocutaneaous Melanin Mutation, also known as Seraph Syndrome to the general public, was discovered only fifteen years ago. Thousands of genetic variables can cause vision loss, but this condition was different, enigmatic, alien even to the most gifted of scientists and researchers. Specialists around the world —myself included— studied the OCA2 and HERC2 genes, which to us seemed like the most obvious path to take. The cause of such widespread blindness had something to do with the P protein, with melanin, and how children born with scant amounts of it had an overabundance of ocular blood vessels, a pathway of veiny branches that would grow, eventually obscuring the light in their eyes.
About three percent of the global child population has been diagnosed with Seraph Syndrome, with new technology being able to detect genetic traces of the disorder and confirm its existence in newborns within the first hours of birth. Scientists, doctors, medical practitioners, and specialists in blindness from around the globe have come together to form the Aspectum Initiative, a group whose goal is identical to my own, to find the cure for the vision loss of those plagued with Seraph Syndrome.
Before his sixth birthday, Raphael asked for a scooter, and his mother and I shriveled when we had to tell him no. The word was only two letters, but it anchored and obstructed my throat like a noose and made him cry in his room for hours.
"But why, Dad?" he asked. "I'll be super careful. I'll wear a helmet, and knee pads, and everything."
His mother hugged him close, rocked him on her lap. My wife used the B-word —blindness— and the D-word —disability— and tossed around several reasons, explaining the dangers and the possible consequences that could surge from something as simple as our son riding around the block on a scooter. "We just want you to stay safe," she said.
At that time, Raphael's blindness was not as advanced; he could still register lights and read bold, big letters on signs, he could still tell the difference between Milo, our dog, and the couch cushions. Raphael still played outside, knew how to swim, and enjoyed seeing the dinosaurs on display at the museum. My son had monthly visits to the Aspectum Initiative's ophthalmologists, performance exams, and blood tests done every year, followed by trips to his favorite pizza place with as much ice cream as he wanted for dessert. The initiative had financed a small at-home lab for me in our house's basement, where I recorded the pressure of his optic nerve religiously while running my own set of tests thinking and hoping that all of the resources would make a difference.
I remember the party-goers, the parents with their children, all students from Raphael's school. Some of the kids were just as angelic as my son, and a few of them seemed even worse off, walking around with canes and wearing dark glasses. But then the music came on, and the backyard was flooded with noise, with children dancing and laughing and parents standing around, drinking out of solo cups, acting quite normal and carefree —as if they were all just at a regular kids party.
We all sang happy birthday, and Raphael zoomed in close to the candles, enough that I thought the flames would burn the tip of his nose, took a deep breath, and put them all out.
"What did you wish for?" one of the kids asked, and I thought of how I would have wished for a cure, for a message from Aspectum Initiative saying that they had found it and that it was simple and easy and required nothing but a needle or a pill.
"A scooter!" he gushed, "even though Mom and Dad said I can't have one."
"Actually," I cut in, calling his attention, "Mom and I did some talking," and as I was stalling my son and the guests with my ramble, my wife walked around the party table, guiding the two scooters by their handles.
Raphael smiled and hurrahed while the other parents with their kids clapped as if they were witnessing an award ceremony. "B—But, I thought you guys said —"
"Your father and I talked about it," my wife said, "and he's promised that whenever he can, he'll ride with you."
"Really! Do you mean it, Dad?"
"Of course, Raph. Anything for you."
Sometimes I'll look at him and notice how he's still, idle like a monk. Raphael will be sitting on the sofa, petting Milo, and he won't notice it, but I'll observe him, see him closing his eyes while his hand runs across the dog's fur. We'll be walking to the grocery store, and I'll hear him mumbling the number of steps he's taking. At home, I'll watch him from the window, sitting in the backyard, feeling the grass on his bare feet and the roughness of the bark of the trees, memorizing the colors, the numbers, the symmetry, the sensations imbued in the world.
When it's dark, my son moves cautiously. He'll hover in a ghostly manner, barely making a sound while leaving his room, walking heel-toe, heel-toe down the corridor that connects the living room to the kitchen, patting the walls, feeling his way through the dark.
"What were you doing up so late, Raph?" I once asked him.
"Practicing, Dad," he responded.
I've talked to my wife about this, about the possibility of getting him a walking stick, a seeing-eye dog, or putting Milo into a training program. I know it would be good for him, that it would give my son more independence, and at the same time, I also know that it's an admission; that I'd be claiming the fact that I don't have a cure, that things won't simply get better.
"Maybe we should consider surgery? Isn't that a viable option?" My wife asked when he was seven.
"It could be, but the waiting list is long, and we'd need to find Raph a perfect match. Plus, there's a high risk of rejection. There's even a chance that it wouldn't even work."
"So we're just giving up? Just like that?"
"I'm not giving up," I answered. "But. . . But science just isn't there yet."
My wife sobbed —she had cried frequently since our son's birth— not because she was mad at me, "I know you're trying," she said, "I'm just angry."
I have a lecture tomorrow, a presentation I'll be giving at an out-of-state university. Twelve scientists and I, all of us members of the Aspectum Initiative, have developed a way to transport melanocytes to six-month-old fetuses. The genetic testing would have to be done in the early stages of development with the child still in the womb, but the success rate of such a procedure is high, and if done successfully, the only drawback would be that the child would be born with brown or black eyes.
It'll be a complicated talk because I know that I'm not giving anyone in the world the answer they want, I'm not providing a cure, I'm offering a band-aid for a gaping wound. There will be curious and eager minds filled with questions. Students will ask about genome mapping, about catching the genetic marker early before embarking on the journey of parenthood. Other medical professionals will talk about the time, on the average length a child can remain with their sight before becoming completely blind. They'll be religious protestors outside the salon and by the front gates, holding up signs, claiming Seraph Syndrome is a divine act of God.
In these academic events, there's always somebody who knows a little too much about me, who knows about Raphael, about how I'm not only a scientist but a concerned father. Most of the time, during our moment of open questions, someone out of malice or genuine care will ask how my son is doing.
"He's doing fine," I answer. "He's nine years old. He loves playing the piano, and he's gotten really good at riding his scooter. My son, Raphael, is a great student, he has a lot of friends at school, he's taught our dog, Milo, a few tricks in his free time, and even though Raph can't see things as clearly anymore, my wife and I just can't seem to keep him inside the house." In these moments, I'll need to contain myself, to avoid tearing up, to keep myself under control. I could tell them all about his struggles, about how he was injected with serums and experimental drugs that stunted his growth, about the terrible headaches that make him dizzy, and in his words, feel like his eyes are going to burst.
In one of my presentations, I put up pictures of him, showed him to the world, swimming at the public pool, doing summersaults at the park, and sitting between my wife and me while riding a rollercoaster during his time off school. Whenever I talk about him at any event, I smile, and people will gawk and knit their brows and look at me like I'm a fool; they forget I'm a father too, and that sometimes I like to remind myself that my son is alive and well.
"Hey, Dad, look over there," Raphael says, pointing to a storm cloud. "Is it just me, or does that look like it's pretty close?"
"It's not just you," I answer, shocked he was able to catch such a detail. "I think we better get going, Raph. Your mom will have a fit if we get home even a little wet."
"Yeah, yeah, I know how she can get."
"Tell you what, I have a speech —"
"Hey, you said you weren't going to work today, Dad."
"Let me finish, Raph," I say. "I have a speech for tomorrow. How about I run it by you, and you tell me what you think?"
"Depends. Is it going to be boring?"
I laugh. "Geez, I hope not."
My son giggles at my remark. "Okay, but only because I'm a good listener, and I want to help."
He reaches out his hand, and I lock my fingers over his. "Get over here," I say, pulling him into my embrace before picking him up. I don't carry him out of pity or because I want to make the way back less of a hassle, and he doesn't let me because he's tired or wouldn't be able to make it back on his own walking, but because he's my son and I'm his father.
Most children with Seraph Syndrome lose their sight entirely before they're fourteen, and their vision loss becomes irreparable by the time they're ten. My wife and I know that our son's nearing the end, that eventually, he won't see anything.
"You know, Dad, I think I'll be okay," he's told me. "I've seen so many things, I'm pretty sure I can make it just fine with everything I remember."
I sometimes wonder what'll be the last thing he sees, and I've asked the world, to anything that's up there, that it be his mother and me smiling.
I know I'm running out of time, and he knows it too. He wants me to find a cure, "Not for me, but for the others, Dad, they need you."
I want him to know that no matter what happens next, whether he goes blind in the next couple of months or in a year, that I'll keep trying. I'll be the scientist looking for a cure and his father who takes him out for a good time. I love everything about him and everything we've shared and will continue to share together. I've already promised myself that no matter what, with or without a cure, I'll do my part to preserve the joy and brightness in his eyes.
"Hey Dad, why are you looking at me like that?"
"What?" I reply, baffled by his comment. "Nothing, you just look happy, Raph."
"Well, today was a good day," he says, resting the side of his head on my chest, his eyes shining not from their glass-like complexion but from delight.
I bask in our moment, in the sticky warmth of the air before the rain. "It really was," I answer, hugging my son, my world just a little bit tighter, watching his eyes close into crescent moons and his mouth arch into a beautiful smile.