A four-year-old boy died in our town.
The local newspaper described the father’s desperate attempts to save him: the cradling of the son’s frail frame as the father laid him on the porch, the thumping of frightened hands against the child’s chest, the breathing of an acrid stink of hope into withered lungs. The family had been struck by the flu and couldn’t stop the flow of fluids that kept draining out of the boy until his body was nothing but a sack of skin.
The police handcuffed the parents and dragged them away from the sheet-covered wrinkle that was their son. At four, he weighed only 24 pounds.
Just like my daughter.
I step on the scale holding Jessica, not looking at the red digital numbers that glare menacingly above us. Their announcement, in metric terms, means nothing to me; I wait as the nurse slowly runs her finger over the kilograms-to-pounds conversion table. Just a few more ounces, I think. An extra pound. Please.
“Twenty-four-point-two,” the nurse tells me with a forced smile, as if the affectation might smooth the deep creases in my forehead. She lays Jessica across a slab of wood marked in centimeters, and we try to shove the plastic end marker against her tightly pointed foot.
Jessica is screaming. Her skin pinches between the unforgiving board and the sharp ridges of her backbone. The nurse offers a piece of tissue paper, as if it might actually cushion Jessica’s head.
“Thirty-eight inches,” she says, struggling to read the faded black marks against Jess’s heel. I don’t care about my daughter’s length. I don’t want her to get longer. In two years, she has gained only one pound. But she keeps stretching, like a snip of candy on a boardwalk taffy pull. Any further, and her middle will twist into a wisp of thread and, eventually, melt away into nothingness.
We’re finished. I tuck Jess back into her stroller, a makeshift wheelchair, and we wait to meet with the gastroenterologist. Somehow, I must convince him to not put her on a feeding tube.
The court case caused quite a stir in our complacent Pennsylvanian community: a thriving suburb just outside of Philadelphia. Things like this don’t happen here. People don’t starve their children. There’s a McDonald’s, a Burger King, and a Wendy’s within a one-mile radius of each small town, as well as four or five grocery stores with overcrowded lines. There’s a pizza delivery shop on just about every block, proffering instant slabs of fried dough, smeared with sugared tomato sauce and clumps of greasy cheese. Potbellies abound. Thirteen percent of our privileged children are overweight. Teenage girls swarm the mall food court, sporting blobs of fat that wobble proudly between cropped t-shirts and low riders. My husband and I tag-team early morning walks before the kids wake up in the hopes of working off the Happy Meals, Tastykakes, and Spaghettios that should have entered only Jessica’s mouth but somehow slipped into ours.
“How could they?” asked the prosecutor. He pointed accusingly at the defendants’ protruding midriffs. “Their pantry was stocked with food. Their cats were fat.”
“Tsk, tsk.” The jury members rubbed their grumbling stomachs and pondered the Quiznos lunch menu.
“Have you seen a nutritionist?” and “Are you putting butter on everything?” and “Are you supplementing with Pediasure?” Jessica’s GI rapidly fires out.
“Yes,” I reply wearily. “And giving her whole milk mixed with heavy cream and Duocal. And snacks of bananas with peanut butter. And Cheetos. And pizza with extra cheese.”
He jots this down on her chart. “How many bites does she take at meal time?”
“Only two or three.” I sigh in Jessica’s direction. She scrunches her eyebrows into a long, stern line and gives the doctor an unforgiving scowl.
He finishes writing a prescription and hands me some papers. “Up the Duocal to 2 tablespoons per 8 ounces. See me in three months. If she hasn’t gained any weight, we’ll have to seriously consider a feeding tube.” His eyes follow the scars that cut across Jessica’s belly while I pull a yellow Funshine Care Bear shirt over her head. “As always, it’s nice seeing you.” He pulls the door shut, allowing us privacy for the struggle with Jessica’s plastic braces, whose Velcro straps always seem to get caught on her socks.
As we head out to the front desk, I glance at the papers in my hand. “Failure to Thrive,” they state as a reason for our visit. Failure to grow. Failure to nurture. The accusations swirl inside my chest and pound at my eyeballs until I can barely focus on the SpongeBob stickers Jessica chooses from before we leave the building. Failure to take care of your child. My footsteps stamp the condemnation against the pavement, echoed by the stroller’s rolling whispers. I settle my daughter into her car seat and slap the sticker on her jacket.
“Ba Bob!” she announces happily, patting the sticker.
Failure as a mother, assert the windshield wipers as we drive home.
“They kept to themselves,” was the unoriginal comment from the neighbors.
“They were educated,” stated the television newscaster. They knew better, her eyes said.
I, too, went to college and earned a perfectly useless degree in Broadcasting and Film. A medical degree would have been handier.
“They were overwhelmed,” explained the defense.
My husband is working late again, and I’m trying to finish cooking dinner. My six-year-old son bounces off the sofa and attempts cartwheels on a 4-by-6 space of floor scattered with piles of blocks and action figures.
In the living room, Jessica watches The Fairly OddParents from her foam-filled Elmo chair. “Mami, bubba!” she demands. I finish filling the pot with water and stick it on the burner to boil. All attempts to wean my daughter off bottles came to a halt when we received the feeding tube threat. She won’t drink as much Pediasure from a sippy cup. We don’t care if she sucks from a nipple until she’s twenty.
I fill up the bottle with the strawberry-flavored supplement, stir in the Duocal, and bring it out to her. Then I run back to the kitchen and start opening the cans of tomato sauce. The can opener keeps slipping off the lid. I cut a finger on the sharp edges and wrap a paper towel around it before I’m summoned again: “Falling!”
I rush to the living room and set Jessica upright. Her muscles are extra tight, hypertonal. Her hips don’t bend easily. Her knees don’t support her well. Her reflexes are weak. She can’t catch herself if she falls, though we’ve been trying to train her to do so. Besides her seven hours per week of physical, occupational, and speech therapy, she rides her horse, Rambo, during what’s called “hippotherapy.” Something about the positioning of her legs and the steady movement of the animal loosens up her hips for at least a day afterwards.
“Thank you, Mami,” she says. I head back out to the kitchen and toss the sauce into a pot. The water is, by now, boiling over and spitting onto the burner; the fire sizzles and sputters underneath. I slit open the cardboard pasta box and slice open another finger before I dump the noodles into the pot.
“Mom! I can’t catch Aphrodite!” Despite my admonitions, Daniel has released his guinea pigs into his bedroom: a rodent death trap of video game cords, leftover Blast O Butter popcorn, and some kind of green, crusted meat, shoved way under the bed. I make sure the stove isn’t about to explode and check on Jessica. When the phone rings, I grab the cordless receiver and answer as I run up the stairs.
The voice at the end of the line informs me that the end of the year is coming and Jessica’s Medical Access card needs to be renewed: Where is my paperwork? While crawling around on the rug, I assure the voice that I sent in the forms ages ago.
“To which department? The County of Mental Retardation or the Intermediate Unit of Early Intervention?” No one seems to know the whereabouts of the paperwork that will renew my daughter’s vital benefits card and ensure coverage of all her surgeries, doctor visits, and equipment. “That paperwork should have been sent to me,” the voice admonishes.
“Who are you?” I ask. The woman says she is a social worker. Luckily, I kept copies. I take down her information, reminding myself to send the papers out the next day. I also remind myself to follow up on the request for Jessica’s new SWASH brace, bath chair adjustment, and heart catheterization, which will probably wind up getting scheduled at Children’s Hospital right before Christmas. Ho, ho, ho.
I spot Aphrodite and snatch the chubby fur ball. She lets out a loud squeal. “I’m not beating my kids,” I joke into the phone. Unamused, the social worker hangs up. I hear my daughter calling me in a wavering tone that suggests she’s slid of of her chair and is now combat-crawling toward a teetering bookshelf or basement door carelessly left open. Aphrodite whistles as I shut her back inside her cage and dash downstairs to place Jessica in a safe position in her Kid Kart high chair.
“Just two bites, Jess. Then you can have some juice.”
“No!” She shoves her plate to the edge of the Kid Kart tray. Spaghetti is her favorite, but she’s only pulled out three meager strands and stuffed them into her mouth with awkward fists. Any fattening bits of butter or sauce that were on them now dribble from her hair and stubborn pout.
“That’s naughty, Jessica,” says my husband, who has just come in. “Do you want a time out?” Time outs entail rolling her chair around to face the wall for one long, tumultuous minute. She shakes her head emphatically. I wave her Dora The Explorer cup, full of grape juice and Duocal, in front of her face.
“Two more bites.”
She angrily stabs at the spaghetti, chews it, then shows me her empty mouth. “All gone. Aaahh.”
“Good girl!” I give her the juice. We wrestle through the rest of dinner, exhausting all bribes. Then I beg her to eat a bite of chocolate marshmallow ice cream, topped with whipped cream and caramel sauce. Daniel’s one-scoop cone is long gone, and he has resumed his pre-dinner bouncefest on the furniture.
A guilty verdict — manslaughter — is announced on the evening news. The family of seven — including developmentally delayed quadruplet boys and a mentally challenged older girl — who once lived in our town, shopped in our stores, and drove on our streets, has been divided and delivered to different parts of the state. The parents hid their faces from the cameras, but I didn’t need to see their expressions to know what they were feeling: Nothing.
The doctors are what did them in. The parents never took their starving children to the doctor. But they fed the cats. Their cats were fat.
I see it now: the nervous tapping of pens, tugging at hair, and scratching of noses that came from Jessica’s pediatricians, gastroenterologists, cardiologists, neurologists, orthopedists, orthotists, opthalmologists, audiologists, and nutritionists after they looked her over. This mother takes her daughter to the doctor, the specialists muttered at each other. Tap. Tap. If something happens. Yank. Scratch. The courts will blame us.
Yes, I take her to the doctors, to the therapists, to the preschool especially designed for children like Jessica — Jessica, who is developmentally delayed with a heart condition, cerebral palsy, and history of an ileostomy and a twin sister who died twenty hours after she was born. And still, still, Jess is not thriving, not growing, not weighing in above that dreaded, horrible figure of 24.2.
Jessica is not that boy, who is now dead and whose family has been divided by the winds of judgment. We are not them. Our cat is not fat. Still, we can never do enough. We can helplessly watch the taffy pull slowly turn, grind, and stretch, stretch, stretch until our little girl disappears. Or we can give in and let the doctors guarantee her survival via feeding tubes, wires, and fluid. I think if it was up to Jessica, she would hold up a hand with slightly bent fingers and tell the doctors, “No, thank you. I’m just not very hungry right now.”
For now, she sits contentedly in her Elmo chair, yelling at Dora to open her backpack and look at her map if she wants to know how to get where she’s going. And here I sit, writing, instead of filling that eager, open mouth with nourishment.
I’d better go give her a cookie.