After my younger brother, Adam, was born three months prematurely in May of 2002, my mother, father, and I spent most of our time in the hospital. He weighed less than one pound and spent every moment under the care of a loving team of doctors and nurses.
I remember waving to him through the glass of his incubator, observing him like a guppy in a fish tank. “I love you, little brother,” I would whisper after overhearing an adult say we should talk to him because the sound of our voices would comfort him if he was in pain.
Unfortunately, pain was part of Adam’s daily life. After being born prematurely, Adam had very little vision or hearing. He would never be able to talk, and if he lived past infancy, would never be able to walk. His condition was caused by a long list of complicated medical explanations, none of which ultimately mattered. His doctors did not think he would survive for long after his birth, but he simply did.
Despite my young age, my parents chose to be honest, but gentle, about my brother’s condition. I knew that he was very sick and that he always would be. I became deeply attached to the idea of being a big sister, a caretaker, and a protector. While some siblings of sick children may feel invisible, that was never the case for me—I wanted to make things better for him.
When he eventually came home, my parents were delighted at the natural excitement I had to take care of Adam, just as I saw the nurses do. We gave his life color in a way that hadn’t been possible inside the muted pastel walls of the hospital. Our on-paper perfect family—two parents with a boy and a girl—appeared complete. But in reality, my dad taught me, age 5, how to adjust his baby-size oxygen mask when it slipped down his face. My mom dressed him in Oshkosh overalls and checkered bucket hats like other babies his age—a sweetly stylish uniform for weekly house visits from physical therapists.
More than anything, we wanted Adam to have a chance at being happy–even though he was unhealthy. It was unspoken that he d never be able to tell us if he was, but we hoped that he knew we tried.
My mother says I was a happy child, intentionally busied with the activities of a wonderful start to childhood: amusement parks, museums, movie theaters, piano lessons. The endless time and attention that was given to Adam by my parents was somehow also given to me. I do remember us being joyful—but underneath, I was also aware of how unfair the circumstances really were—that I was here, healthy, at home with our mom and dad, next to my brother, who never would be.
Years later, Adam doesn’t come up that often. But when my mind wanders, I find myself thinking of him. One day, while wandering around Goodwill, I thought of an old photo of us and texted it to my mom. When she sent back a heart emoji with prayer hands, I realized that I should call her if I wanted to actually talk about him.
“I don’t think he ever cried,” I told her, while distractedly picking through other people’s abandoned belongings.“He didn’t, really,” she confirmed, almost with pride. An image of his little face, scrunched in discomfort, but no sound coming from his little mouth, was instantly clear. I steeled myself in the blankets aisle, determined to not cry, myself. “I miss him, beautiful little baby,” she said quietly, to herself and maybe to me. And then we hung up.
On a December morning in 2004, when I was six, Adam stopped breathing. My mom and I were on either side of him, asleep in my parents’ bed. My dad often slept on the couch to allow room for me and my fear of the dark.
The local news was usually on at a soft hum through the night, and it was a small house, so it was easy to hear everyone from one room to the next. This morning, though, the television was off. Everything was so quiet. Then my dad, on the couch, somewhere between sleep and consciousness, realized that it was too quiet.
I was awakened by my parents’ frantic whispers telling me to stay put. Peering over the edge of their king-sized bed, my throat closed with fear at the scene unfolding too quickly for anyone to explain.
My brother was lying on the floor, his brown skin already turning ashen under the light of the nightstand lamp. My dad had the phone cradled to his ear, terrified and receiving instructions from paramedics on how to give CPR to a toddler. The air left his body as soon as my dad blew it into him.
While watching my parents ride away in the ambulance with my brother, I was almost certain that he wouldn’t be coming home.
After my brother’s death, my parents continued giving me the most normal childhood they possibly could. My mom went back to teaching, my dad went back to work, and we kept on living. They explained, simply, that it was better this way. Adam wasn’t suffering anymore, and God knows what s best, and he was here for as long as he should’ve been. This was maybe too simple a way of understanding what happened, though, I know now.
So small, so sweet, so soon, his epitaph reads. I was there when my dad picked it out in the cemetery office, my mom only speaking when necessary. These six words felt like a language only the three of us understood. I sat between them, trying to absorb their pain, aware of my newest responsibility: to comfort them by being there. As an adult, this duty has transformed–I keep my memories close enough that we never forget him.
How can someone who was with us for just a moment still be such a part of me?
One of my favorite photos of our little family of four is from October of the first year of his life. At six months old, he had finally begun to adjust to breathing with the assistance of an incubator. On Halloween, happy for any reason to celebrate, our parents dressed him as a baby pumpkin. My dad handed a Kodak camera to the nurse and asked her to snap a picture.
We were so proud of our tiny little boy. At only four, I was smiling but reserved, dressed as a princess in pink. Many moments from Adam’s months-long stay in the hospital were documented on disposable cameras. I was used to always being right there with him, in every photo. In the sterile yellow light, my mom and dad were happy to be holding him, finally, for more than a few minutes. Now, we hold onto that photo forever.