The nightmares are becoming so real.
I snake a shaky hand over my face and wipe away the sweat. The events from yesterday drift into focus: the footsteps. The open door. The moved playpen. Last night, Jess worked hard to reassure me that my exhaustion is to blame, but I’m not so sure.
I gauge the empty space beside me and run a hand over the sheets. A sob catches in my throat. I squeeze my eyes shut until the outline of Chris’s face fires in my memory—the slightly crooked nose, broken twice from college rugby, the large amber eyes and impossibly thick lashes, the tiny cleft in his chin. I reach out as though I can still press a finger into the dimpled flesh. My hand fists around air, drops, resettles.
I roll back over. Nights and mornings are always the worst. I can keep myself busy during the day, but at night, when I settle into bed, his absence is the loudest thing in the room. That, coupled with all of these terrors about Jackson—Jackson crying, but I can’t find him; Jackson tumbling from my arms down the stairs; Jackson floating away in a river—it’s enough to make me want to boycott my bedroom entirely.
I press the button on my alarm clock to tell me the time. It’s only 4 A.M. I sit up, slip on my robe, and listen for Jackson at the top of the stairs. His white noise machine whooshes on low from his nursery down the hall.
It’s still odd that I live in my mother’s house, a dusty old relic on one of the best streets in Elmhurst, Illinois. Its drab interior, leaky windows, and outdated roof made me think about selling, but I was too tired to pack, sort, and figure out where to move again after her funeral. Plus, it had once been my home too. I was ready to make it that way again.
Now, I carefully navigate down the stairs, my fingers cruising over the worn banister. At the bottom, I pass the sitting room I never actually sit in—badly in need of paint and fresh curtains—the monstrous dining room, the open foyer, and the cozy living room with the sailboat wallpaper. I used to stare at that wallpaper for hours as a child, until my eyes grew blurry and the boats blended together into a deep ocean blue.
Later, as an adult, when I found out I was going to lose my vision, I’d walk to Lake Michigan, sit on the beach, and stare at the water. I’d let the calm wash over me and commit the exact hue to memory—the same blue as my childhood wallpaper—and focus on how the water glittered and churned. I’d close my eyes and get used to hearing, not seeing. When my vision worsened, Chris continued to bring me to the water every Sunday. He didn’t talk. He didn’t ask questions. He just let me be.
Since his death, I haven’t been back even once.
I turn the corner into the kitchen, fill the kettle, and flick on the burner. Updating my childhood home will be the very first renovation project I tackle with Crystal, an interior designer I met at a grief group. Six months after Chris died, I’d waddled into the group with my pregnant belly, instantly wanting to leave, and that was when Crystal helped me find a seat. She didn’t ask about my vision or why I was there, and I didn’t ask her either.
We talked about other things: our careers and living in Elmhurst, though we had both lost our husbands. It was over a month before I even knew she had a daughter. I quickly learned she didn’t like talking about her life—as if the mere mention of the people who composed it would somehow alert the universe to take them all away too. Not many people understood that, but I did. There, in that room full of Kleenex and anguish, was the most connected I’d felt to anyone in a really long time. We’d been on a steady incline to genuine friendship ever since.
Upstairs, the baby cries. My body tingles as he calls. I shake the electricity from my limbs and wait to see if he will settle back to sleep, but he continues to cry.
I walk the hall again and trek upstairs: fifty-five steps. From landing to nursery: thirty-five. It is amazing how important math has become in daily life. How angles and steps can mean the difference between a smooth transition from room to room or a smashed nose or stubbed toe. While all visually impaired people have their blindisms—some people rock back and forth, some people listen with their mouths open, intent on absorbing every word—mine is counting steps. I don’t need to count steps. I am oriented to our home and neighborhood and am blessed with a photographic memory, but it is my tic.
I crack the door and ease inside. My mother helped me decorate. She picked the Pinterest-worthy wallpaper. The elephant decals. The Crate and Kids dresser and changing table. I walk toward the large crib and stare into it.
The room is black. The shape of my son seizes my heart. His little body plumps beneath his onesie—a foggy halo—but a gaping hole appears where his head should be. I picture his exquisite gray eyes, like twin marbles bobbing beneath water. Where are they? My breathing intensifies. I place my hand gently on his belly. He jerks awake in the inky darkness.
There. There’s my baby.
I slap a hand to my heart. The air escapes in an audible whoosh. The ugly black hole recedes as his face hardens in my mind. My hands traverse his body—the creased palms, the wiggly legs, the warm belly. It takes a moment for him to register in my brain first, then spring to life in front of me. He is here. He is real. I step back.
My eyes are playing tricks again.
It’s an unwelcome side effect of Stargardt disease—besides losing my central vision, I also see shapes shift in the dark with what little sight I retain.
I scoop his pliable body out of the crib and find the rocking chair. He hunts for my breast. His tiny fist works against my chest as he drinks. I cast a map of his face in my mind and caress every feature. The fuzzy forehead. His thick lashes and squishy nose. His tiny scoop of a chin. Love fills my hand, my body, this chair, my world. I remember when he was placed into my arms at the hospital, I’d memorized every part of him. The wrinkled hands and impossibly compact feet. The down-turned lips. His crazy fingernails, which were so long, I had to cover his hands with socks to keep him from scratching himself. A surge of grief flattens me. Chris was supposed to be here. Chris was supposed to become a father. He and I spent so much time discussing our future, making plans for time we’d never have instead of just enjoying the moment.
What a waste.
I let the feelings come—now knowing that resisting grief only makes it worse—and wait until they pass. “Who’s a good boy?” I stroke Jackson’s cheek and mess with the bumpy skin close to his right ear. The pediatrician explained how to feel for rashes, how to differentiate between eczema, psoriasis, diaper rash, or even chicken pox. This is eczema.
I take inventory of the rest of his skin—all clear—and wind my fingers through his wispy hair. He drains my left breast, then my right. I resist the urge to fall asleep. So many times during the day, I try to nap and almost get there, but something happens: the phone rings. The baby cries. He’s wide awake and wants to be entertained. But the sleeplessness is worth it for moments like these.
I rock Jackson until he is milk drunk and lay him back in his crib. I leave his door cracked and pad back downstairs to the kitchen, not even realizing the kettle has been whistling. The angry steam hisses from the spout. I flick off the burner and pour myself a cup.
I sip my tea. The silence consumes me. I ask Google Home to play my Spotify symphony playlist and briefly conjure my younger, sighted self in the Chicago Symphony Orchestra, followed by vision symptoms I could no longer ignore, which inevitably led to a diagnosis of Stargardt disease and Charles Bonnet syndrome. As my vision went, it was like staring at a painting whose center had been wiped clean. It was manageable at first, like having really bad vision and forgetting your glasses. And then, everything finite slipped away.