Levi's Genes

I look out over another sprawling green lawn in front of another palatial estate. Bursts of wisteria obstruct the view of the second-floor window in a way that is meant to look natural; as if the vines crept up the terrace slowly, secretly. A nuisance of nature that just happened to be beautiful and therefore allowed to stay. But it was clear that every inch of this venue was chosen with care. These vines were guided over time to make the perfect patterns and create beautiful purple filters for the east-facing window.

Dutifully, I stack the bride’s rings one on top of the other on the windowsill in a beam of light so perfect both me and the gardener dream about it. I angle my body just so, crouching too fast for my knees, still stiff from the ten-hour drive. I point my camera at the rings.

*Click*

Not quite right. I fiddle with the settings a little bit, bend my back at an angle that it doesn’t appreciate, and hold my breath.

*Click*

There it is. Rings. Windowsill. Sunshine. Green grass, blue sky, and a hint of lilac softly out of focus in the background. Damn, I’m good.

I go through my mental checklist for the bridal party photos. We got some candids as the bridesmaids arrived (making sure to avoid capturing the sister of the bride/matron of honor’s eye rolls every time the bride opened her mouth), every possible angle of the hug the bride gave her mom after she received her late grandmother’s necklace as her “something old” (pretending not to hear when the mother told her sister, “I hope that was a good idea.”) and even some playful shots of the bride’s college roommate twerking with a head full of rollers while pouring champagne for the delighted future mother-in-law.

Now I wandered the venue taking shots of things like the wedding dress and programs while my assistant continued to snap the ladies getting ready. It was a good time to scope out locations for intimate newlywed photos taken while guests did the Cupid Shuffle.

I pulled my phone out of my pocket. Still nothing.

I’ve never been to this venue before, but I’ve been to this venue before. Strategically beautiful. As the event manager walked me to the bridal suite, she told me about all the things that made this place more special than the other venues I’ve shot: The former country home of a robber baron. Taft or Roosevelt or Eisenhower liked to vacation here and roam the grounds. The first home in the area to have electricity. She walks me through the kitchen and up the “second staircase”, the only area not meticulously maintained. I’m sure Taft never saw these stairs. Or the former owner, for that matter.

It's not that I’m jaded about this place or this wedding. But after all these years, the lines start to blur. One garden labyrinth in Upstate New York blends into another on Martha’s Vineyard.

I take a seat on a creaky wooden bench in the hallway under the portrait of a woman with gleaming white skin. A former resident of the estate, no doubt. “Any news?” I text Cassie. Three dots flicker on the screen and my eyes are glued. My stomach drops, but I try not to panic. She would’ve texted if it was bad. She wouldn’t keep this from you.

“Nothing yet.” She texts back. I relax my shoulders. “But someone is all smiles!” She sends me a photo of Levi laying on the bed with a wide smile revealing the holes where his two front teeth should be. I smile at his face, trying not to notice how pale he looks. It takes him a while to get his color back after a morning of testing. I know that, but it doesn’t make it less hard to see.

I had never described a Black person as pale before Levi got sick. I called him “ashy” every day. After showering and brushing his teeth, his skin would soak up moisture in the winter months. A white cast would cover his skin even before we got back to his room. “Put some lotion on those knees before you start a fire!” I would joke with him every day after a shower. He let out a huge laugh and said, “then I’ll put it out because I’m a fireman!” He loved firemen. Firetrucks, dalmatians, hoses. We had to run to the window whenever a siren drove by. At his 5^th birthday party just a month before his first surgery, we made the mistake of buying a firetruck-shaped cake that he didn’t allow us to cut.

It's how I first knew something was wrong. “Put some lotion on those knees before you start a fire!” I said as we walked to his dresser. “Then I’ll put it out because I’m a policeman!” I laughed, thinking he was being silly.

6 days later, Cassie asked him to bring her a fork and he brought her a spoon. “Thanks, buddy!” she said, wrapping him in a hug and showering him with kisses. Levi ran off giggling, but her eyes were glassy and wet. We both sat and stared at each other completely understanding. This was real now.

For days, doctors and nurses poked and prodded my son. They never lost their ability to put him at ease. He turned it into a game for himself. “I bet I have more blood than anyone in the hospital!” His smile was broad, but his skin color was off. We rubbed lotion into his arms and legs trying to coax the melanin back. How could he be so dry? As Levi slept, a nurse watched me methodically rubbing lotion into his skin. Partially to bring his skin back to life and partially to give my hands something to do. “He’ll get his color back soon,” she said. She was standing right next to me, but her words seemed to float to me from another room.

“Excuse me?” My voice croaked. I hadn’t used it in hours. Cassie had gone home to shower and answer some emails, and Levi couldn’t keep his eyes open.

“His color seems different, doesn’t it?” She said as if she was reading my mind. “He’s just a little pale from all the blood we’ve drawn this week. But he’ll look more like himself tomorrow.” She pressed her hand onto my shoulder firmly. It felt certain.

I was up all night, so I’m not sure when it happened, but it did. The sun rose and moved slowly across the room, and as it crept over his toes under the blanket, he opened his eyes and looked at me. His skin was back to a rich caramel. His eyes were sleepy but bright and full of life. “Good morning, my love,” I said.

“Where’s mom?” Levi croaked.

“Excuse me?” The mother of the bride was stomping toward me. I closed the photo on my phone and sat up straight.

“Hi, Vera. Everything ok in there?” Vera was no-nonsense and never afraid to say what was on her mind, but she didn’t scare me. I’d worked with a hundred mothers like her, and I’d work with a hundred more. By the end of the night, we’d be dancing like old friends. But right now, she needed to take control.

“I’m paying you a lot of money, Antoine. I need you to get off Twitter and take some photos!” Vera wrung her hands nervously. This wasn’t about me, but I take the heat for a moment.

I stand up and turn my camera towards her. “I can definitely do that. Mind if I show you what I’ve been working on?”

Her eyes lock in on mine, jaw set preparing for a fight that doesn’t seem to be coming. She softens but still seems on guard. “I’ll have a look.”

I scroll back in the camera and find some shots I took of the gown in the study. The white fabric gleamed against the dark furniture. A photo of the white Rolls Royce parked in front of the estate, ready to drive the couple to the hotel after the reception. And of course, the rings. Vera stifles an audible gasp. She turns to look at me, her anger now completely melted. “This is probably just another day for you, isn’t it? I’m sorry if I came off harsh.”

“I photograph a lot of weddings, but each one is special,” I tell her. It’s the truth. Each has its magic. Just because it’s easy for me to find doesn’t mean I am blind to it.

“We’re spending so much. You don’t think about it when you’re planning it…but it all adds up.” She wrings her hands harder. She’s talking to me but staring at an invisible calculator just past my face.

“The kids said they would help, but Zach…I think he has a problem.” She looks at me to assess my face for judgment, but there is none. “He’s a good man, a great man…I think he can get it under control someday. My daughter said there is no problem, but my father… My father liked horses and Zach looks at football the way he looked at those horses. You don’t forget that look.” She turns to the window. Wisteria drooping just past her shoulder. If it was the right time, it would make a beautiful photo.

“Are you a father?” She asks. My stomach drops again. I know what’s coming.

“Yes; I have an 8-year-old son.”

“I’m sure you’ll handle this way better than I am when he ties the knot!” She turns with a smile and walks back to the bridal suite, fears subsided.

“God, I hope,” I say to no one.

A brain tumor, we learned. Developing slowly over time and pressing on the part of his brain that affects his speech. The surgery was swift and successful, though they still incorporated speech therapy into his recovery plan.

We set about getting our lives back to normal when six months later, Levi fell while walking. He said his legs felt like spaghetti. Another round of tests revealed another tumor, this time on his spine. This surgery would be trickier, and as good as our doctors in Connecticut were, Levi’s doctor wanted us to pay a visit to his friend, a specialist in Baltimore.

It’s been three years now. Test after test, surgery after surgery, treatment after treatment. It still hasn’t been narrowed down, but what we know is that Levi has a rare genetic condition that causes benign tumors to develop anywhere in his body. While he doesn’t need surgery to remove them all, the medicine he takes and the treatment he receives are a lot for his young body. And in recent years, some tumors have not been benign.

Some have come on or close to his spinal column, which affects his sense of balance and use of his legs. His doctors let us know that anything is possible, but we should make peace with the fact that he may eventually lose the ability to walk entirely.

“Make peace?” Cassie whispered outside of Levi’s bedroom. “With the worst thing I’ve ever heard in my life?”

I was frozen in place. Scared for my son but feeling the weight of my role as a man to take this burden off of my wife. “Mom?” I heard Levi’s small voice from behind the cracked door.

“Yes, sweetheart?” Cassie tried to put a smile on.

“You know the worst thing I’ve ever heard?” Levi sounded like he was crying. Cassie and I went white with fear, not knowing he could hear us.

“What’s that, baby?” Cassie said, wide-eyed and waiting for a bomb to drop. Just then, Levi tipped his head back and let out a blood-curdling scream. Cassie and I ran into the bedroom to rush to his side and Levi keeled over until a fit of laughter. He hadn’t been crying; he’d been giggling.

“You are the silliest person I’ve ever met!” I said.

After college, I got a job working for one of the major insurance companies. I climbed my way up the ladder quickly, making money to buy better and better grey suits to fit in that world. But each night, I’d take out my camera and throw myself into the color of the city. I’d shoot late into the night, eventually using the money to buy better and better cameras and lenses.

Along the way, I met Cassie. Much like me, she was climbing up the ladder of her field quickly, but her drive was much more severe and her talent so great that she made Vice President before I had even decided if I truly liked the company. On our first date, she told me that she never wanted to be married because she didn’t need some man slowing her down. Yet when she got back to the table after winning the last “40 Under 40” recognition in the region, she looked me in the eyes and said, “we can get married now.”

I couldn’t think of anything I wanted more.

Soon after, I left insurance at Cassie’s urging and threw myself into photography full time. With her support and her incredible business knowledge, I was able to soar. She even picked up the camera and used her talent and joined me on photoshoots. When she told me she was pregnant, life seemed perfect.

I left the gray suits and white walls of insurance. I had opened myself up to a world of color. And then God threw me into a world of sterile white sheets, crisp blue scrubs, and if he was feeling particularly angry, red blood.

Cassie and I yell at God, at family, at insurance companies, at passing cars, at each other. But Levi, who has it worst of all… smiles. He wakes up every day with a smile. Before he’s found out if his legs have the strength to walk. Before he’s found out if the radiation treatment worked. Before he’s had breakfast, he opens his eyes and gives us a big smile.

God’s got jokes.

I pick up my camera and the rings and keep my eyes peeled for any final opportunities before going back to the bridal suite when my phone buzzes in my pocket. My heart races. I’m living in fear of the day that smile goes away. Either because it’s taken or the will to smile is gone. I close my eyes and take a deep breath.

“Please.”

I open the text from Cassie. “You’re looking at the face of a little man that just got cleared to go back to school in September!” A picture comes through of Levi, no longer pale and weak, but sitting up with arms raised and that big smile.

We’ll have to arrange for a wheelchair and make sure the school has a para that can provide one-on-one attention. I’m not sure how we’ll handle any of this. I’m sure there’s more to handle that I’m not thinking of. But not right now. At this moment, my boy can smile. He can feel like himself. We have something to look forward to today.

I wipe the tears from my eyes and type, “I can’t wait to celebrate with you both! As soon as this is over, I’m headed straight back down there so we can have a pancake breakfast!”

Three dots. Cass types, “Levi wants bacon.”