Her Perfect Baby

2024

August 8, 2015: The day my brother got hospitalized

After returning from a weeklong trip in Maine with his friend Luka at the end of June, Jamie was different: slower, clumsier, weaker. He would move about with laborious effort, as though the air around him was composed not of gas, but of viscous molasses. His legs would buckle like limp udon noodles when he tried to run. Yogurt would dribble down his chin when the spoon missed his mouth. Brown salty liquid would splash everywhere when he tried to transfer soy sauce from the half-gallon jug into the narrow glass dispenser. That was especially concerning – as the designated klutz of the family, I was the one who was supposed to spill the soy sauce.

My mom eventually took him to see his pediatrician, who sent him to the ER. The doctors there attributed his sudden loss of motor control to an inflamed spinal cord, which they attributed to some mysterious immunodeficiency condition — no explanation, no certainty, no answers.

Then came the steroid infusions and the lumbar punctures and the immunoglobulin therapy and the chemo and the MRIs and the weeks-long stays at Boston Children’s. It was awful watching him lay in that hospital bed, forearms blooming angry purple from all the prodding of the IVs, surrounded by so much sterile pale blue the color of robin’s eggs and dying. It was awful watching him miss so much school, the smartest kid in class now falling far behind, the three-sport athlete now bedridden. It was awful watching my thirteen-year-old brother, who was supposed to be on the cusp of explosive growth, crumple and wither away.

The year Jamie got sick was the great turning point – when BC became AD.

Before, we were a family. A family tinged with mild dysfunction, but a family nonetheless. We were even happy.

We played Canadian doubles on cracked tennis courts, Team J&J versus Mom, giggling as we yelled “Mine!” “Yours!” and groaning as we volleyed balls into the net or sent them careening past the baseline. 

We had sleepovers on the floor of my mom’s bedroom during power outages, where we would play-pretend that we were camping in the woods, burrowing into our thermal sleeping bags and conjuring shadow puppets on the walls with our battery-powered flashlights as the storm raged outside. 

We indulged in regular TV dinners, the three of us nestled into each other on the family room couch, slurping noodle soup or shoveling down golden-brown fried rice while we watched Modern Family or Forrest Gump or The Shawshank Redemption (my mom’s favorite).

We undertook collective culinary projects, dipping stale bread into beaten eggs for french toast, melting Toll House chips in the microwave for makeshift strawberry fondue, scooping pork-and-chive filling onto awaiting dumpling skins and gently wetting their edges and folding pleat after pleat, hour after hour, gathered together in communion around the kitchen table. 

We uprooted clover and crabgrass from the little plot of soil that was our backyard garden, perched on tiny plastic stools from Chinatown in our olive-green rain boots, eagerly waiting for the green tomatoes to blush crimson, for the nubby beans to stretch out their pods, for the finger-sized cucumbers to grow thick as arms.

We raised chickens in the backyard, Araucanas and Black Stars and Lohmann Browns, plump squawking creatures that had once been cheeping pom-poms fitting snugly into our tiny hands. Jamie and I eagerly collected eggs from our beloved pets, whom we christened with names like Midnight and Champion and Ganny, short for Ganondorf, the villainous demon character from Super Smash Bros who gave me the heebie-jeebies.

We skied on Wachusett Mountain, usually sticking to the Blue Squares but sometimes braving the Black Diamonds, always ending our day in the little stone cabin near the base of the slope that served warm cider donuts shimmering with cinnamon sugar. 

We ventured to Wingaersheek Beach, where we ate sandwiches of thickly sliced Spam on ciabatta rolls, and my mom lounged beneath the shade of our navy-blue beach umbrella while Jamie and I dug massive clams from the shore with our bare hands. 

We took day trips to Walden Pond, where I wielded my pink plastic Barbie fishing rod to extract trout and bass from the very same waters that sparkled for Henry David Thoreau, the transcendentalist who preached self-reliance from his isolated cabin in the woods, while still relying on his mother to do his laundry. Our mother, by contrast, had us doing our own laundry before we both turned ten. 

We embarked on six-hour road trips to Hershey, Pennsylvania, during which my brother read aloud directions that had been printed out from Google Maps prior to departure, and my mom played an audio cassette of Amy Chua’s Battle Hymn of the Tiger Mother, which she took to be not a cautionary tale, but an instruction manual. When we got to the park, however, extreme parenting philosophies were lost to the wind as we rode rollercoasters and toured the factory and designed our own chocolate bars.

And then there was After. 

After, my mother grew distraught, devastated over her golden child’s tarnished future. She left her job at a stem cell research institute to start her own small pharmaceutical company, giving her more flexibility to take care of her son, and more time to fight with his doctors when their decisions contravened her own judgment (especially stupid Dr. Gordon, who almost misdiagnosed Jamie with cancer). She was not that kind of doctor, but she did have a PhD in immunology from Harvard Medical School, and could hold her own in conversations about NK cell flow analyses.

After, my mother grew bitterly resentful that life had dealt her such a hand, that it had inflicted such suffering upon her son and herself. She needed somewhere to channel her anger. Luckily, that’s what daughters are for.

My mom never got mad at Jamie the way she did at me. My brother, seventeen months older, was always the smart one, the kind one, the rational one, the diplomatic one. He was outgoing, he was charming, he was brave, he was good at math. I was none of those things.

I was the anxious wimp who cried into my blankie every day at preschool and kindergarten, until my mom called the school to make them ask my brother to play with me at recess, while Jamie was the popular stud who had multiple four-year-old girls fighting to fake-marry him. I was the frivolous materialist who wanted silly bands and squishy toys and giant lollipops, while Jamie was the sage ascetic who never asked for anything on his birthdays. I was the stubborn brat who talked back and always wanted to be right, while Jamie was the wise pragmatist who knew the indisputable truth: Mother was always right, no matter the facts of the case, because that was just the way of the universe.

The five-year-old fool I was, I once paid Jamie all of my allowance savings – fifty dollars – to buy back the tiny silver hamster he had stolen from my collection of Japanese take-apart erasers. I had all the other colors: red, orange, yellow, green, blue, purple, pink, and gold, and I needed urgently for my rodent rainbow to be complete. My brother had snuck into my room and slipped the silver hamster from its blue tupperware home. With no conception of economic value, I paid the ransom money without hesitation. I didn’t realize I had been swindled until later, when my mom chastised my stupidity for paying fifty dollars for a tiny piece of rubber. As I wailed, my mom chuckled and praised her six-year-old son’s business savvy. 

How could I ever measure up to him?

“Jamie is the favorite child, you know,” my mother announced out of the blue one afternoon, years after Jamie’s first hospitalization, as I pushed our half-full shopping cart past the refrigerated produce room at Costco.

I laughed, startled. How random! I almost thanked her for finally speaking the obvious aloud, for finally confirming what I had long known to be true. But why here, why now? Maybe the sight of chopped kale had provoked the thought.

“But Jamie is handicapped,” she continued, placing her hands on my shoulders. 

I winced at the outmoded language and everything the word “but” implied. 

“I want nothing to happen to you. You’re my only perfect baby.” 

Her only perfect baby.