You sit up straight in the hard plastic chairs in the cold conference room waiting to meet your potential new foster daughter, absently rubbing your knuckles raw with your thumb. A dusty chalkboard boasts inspirational messages for the girls in this residential treatment center:
Be true to who you are!
Remember you are beautiful!
You have been Janine’s pediatrician since she was seven. You diagnosed her with the eating disorder that landed her here nine months ago. You find it hard to reconcile the curly headed smiling blue-eyed child you met in your office with the hollow remnant she has become. You watched her father die. You listened to details of the sexual abuse she suffered at the hands of her mother’s boyfriend. You watched her being taken away from her home by the Department of Children and Families. How could you havethought her alcoholic mother was just eccentric? You hope you will be a better foster mother than you were a doctor.
There is a steep learning curve. You climb it. You learn about the bio-psycho-social model for the development of eating disorders. You learn that eating disorder is, above all, a coping skill. An attempt by Janine to exert control over her rapidly crumbling world. She comes from mental illness. There is suicide in her family. Alcoholism. Bipolar. She has OCD, a perfectionist by nature. An overweight aunt used to drag her to Weight Watchers meetings when she was just eight years old. Her father died young. She was made a ward of the state. Her last foster mother took diet pills and thought it would be fun for them to lose weight together. Janine is not just a perfect storm of causality. She is a fucking tsunami.
Janine starts coming home on trial passes from the treatment program. You learn to count exchanges of proteins, carbohydrates and fats. You learn to replace unfinished meals with Ensure. She cuts her food into tiny fragments and pushes the bits around on her plate. She shakes. She does not cry. She re-measures the milk you pour, standing at the kitchen sink drip-drip-dripping it bead by bead down the drain until the meniscus of fluid meets the 240-ml line on the measuring cup perfectly. You try to tell her that her perceptions are distorted by her disease. “Then why don’t you just gouge my eyes out?” she yells at you. You learn to listen to music during meals and keep the conversation light. You learn to play games to distract her from the awful task of eating. Sometimes this works. Sometimes she throws her food on the floor.
You work with Janine in family therapy for ten more months. You learn to separate the eating disorder from the child. You learn that her disease has hijacked her. Inhabits her like an un-exorcised demon, sapping not just her weight, her fat, her muscle, but also her personality, her very essence. You learn to name it. Edie. As in E.D. As in Eating Disorder. You learn that Edie can be quite ugly. Edie calls you a psycho-bitch and throws forks at your head just for calling Janine to the table for breakfast. Edie tears off her fingernails and sprinkles them in her oatmeal so you can’t make Janine eat it. You serve her a new bowl of cereal, fingernail-free. Edie calls you a cunt. Janine picks up her fork and eats one bite. You exhale, relieved, knowing this means she will finish her meal.
Janine is finally discharged from the program after nineteen months of treatment. Her eating disorder is not cured, but her weight has been restored to a safe level. As part of her therapy she has written a trauma narrative listing all the obstacles she has overcome in her young life. She reads it aloud to you. Solemnly. “Losing my father. Having an alcoholic mother. Being separated from my sister.” Your eyes well up. Janine is just getting started. “Having foster families be ‘not nice’ to me.” You wonder what that means. She will later tell you it means not feeding her. “Being scared to make a mistake because DCF can make you go live somewhere else.” Your heart cracks. You vow this will never happen to Janine. After her reading, she cuts her trauma narrative into tiny pieces of paper then stuffs them into helium balloons. She lets the balloons soar off into a clear June sky in a ritual called a destruction ceremony. Most kids at the program choose to either set their narratives on fire or drown them in a pond, weighted down with rocks. You hope Janine’s choice of method of destruction indicates a basic optimism in her. You wish it were that easy to leave the past behind.
Janine changes into a hospital gown to be weighed. As she lifts one leg out of her jeans, she wobbles. You reach to steady her, her spine rosary beads beneath your fingers. Her back is covered with the downy fur her body has grown to keep itself warm. You are afraid for this fragile child. You wonder how much more weight she will have to lose before her doctors recommend in-patient treatment. You learn that it will take more than weight loss.
She bangs her head against the passenger side door. Over and over again. “Don’t, Janine,” you implore, your eyes on the road. “It’s okay.” She sobs and strikes her head again. Hard. “You did a good job eating,” you tell her. She shrieks louder. “It’s your eating disorder that’s unhappy you ate, but you did the right thing.” You are holding her gelid hand, limp in yours. Then, the dome light snaps on. The door alarm sounds. Her seat belt clicks open. You veer off the highway, braking hard. You stop, half on, half off the exit ramp. Horns blare around you. Someone yells. You dial 911 with shaking hands. You scream. Or think you do. You wrap your arms around Janine’s thin shoulders. She surprises you with her strength. One foot out the door. Two feet. Her jacket is ripping. Your arms ache. Cars whiz by honking. A driver gives you the finger. Where are the police you called? You think about her mother, asleep somewhere in an alcoholic haze. You picture having to tell her: this is how I lost your daughter. You hear sirens in the distance. Her clothing tears. She is gone.
And this is what it takes. Janine is hospitalized on the psychiatric ward for a suicide attempt. You beg them to transfer her to the eating disorder-specialized unit. They assure you they can manage her. You watch as she squirrels almonds in her cheeks, loads up on water for weigh-ins and stuffs burritos down her pants to avoid eating. The staff sees none of this, despite the one-on-one. She loses four pounds in two days. They agree to the transfer. Janine protests. Which is to say that Edie objects. They sit her in the hall in front of the nurse’s station in a geri-chair where they can watch her eat. Girls teeter by on legs thin as twine, feeding tubes taped to their faces. They twirl the ends of them around their fingers like strands of hair, flip them over their shoulders like necklaces. “You still don’t get it, do you?” Janine murmurs miserably. “My eating disorder makes me competitive.” You stare at the tubing-accessorized teens with their caved-in cheeks, their sallow dry skin, their sunken eyes. “You mean you want to be like them?” you whisper, horrified. Janine nods. Your stomach turns at the thought of your foster daughter striving for bones.
You get the call from her friends at one a.m. She is having a seizure. The ambulance is there. You meet them at the local hospital. You ask for a CAT scan of her head. A smug RN tells you that she probably just passed out and “got a little twitchy”. Her friends probably just panicked. You hold Janine’s cold hand. She tells you she doesn’t feel well then has a grand-mal seizure before going into V-tach. You get your CT.
DCF files a 51A on you—a charge of abuse and neglect—for letting her go to the party at which she OD’d. You have filed dozens of 51A’s in your twenty-five years as a pediatrician. But never for this. Never on the parents of a suicidal teenager. It will be six soul-crippling weeks before the allegations are screened out. You are completely demoralized.
You go to an Adolescent Medicine conference. You are most interested in the panel discussion on eating disorders. On the panel sit a doctor, a nurse, a social worker and a nutritionist. During the Q&A, a clinician in the audience tells the story of a patient of hers whose mother—also an MD—had to quit her job to care for her child. She was angry and resentful. “How do parents preserve their relationship with their child during treatment?” is her question. The panelists are stumped. They look from one to another, no one answering. You want to shove your hand in the air, wave it around like a third grader. You know the answer to this one.
You preserve the relationship by understanding that your child is not her eating disorder. That she is sick and scared and starving inside the monster that is Edie. That inside the spitting, screaming, swearing creature is the sweet child you remember from before Edie moved in. She is in there, just waiting to be pried free.
You preserve it by coming up with a sign—in Janine’s case a finger laid aside of her nose—that means I love you. That means I know I’m being a jerk right now but it’s me in here and I’m still your sweet girl. Janine will use this sign in the middle of many fierce arguments. She will curse and break dishes and wound with words, then lay her finger aside her nose before storming off, slamming doors.
You preserve it by saying I love you even when her therapist tells you not to. Tells you that you’re going too fast. That Janine will interpret your words as pressure to say it back. That this will increase her anxiety. That she will only know love by the structure and routine you provide. Not by the words you say.
You preserve it by hugging her even when you’re told you shouldn’t. That with her history of sexual molestation, any touch will be perceived as sexual. That you should treat her like she has a gaping wound and keep her at a distance. “You wouldn’t hug someone with a gaping wound, would you?” her therapist asks you. No, but isn’t it the person with the gaping wound who needs the hug the most? you think.
You preserve the relationship by fighting for your child at every fucking road block. By going up the chain of command at DCF when they try to stick her back in a program that had her for a year and a half and couldn’t fix her. You fight even when DCF tells you to give up. “We are the parents,” they tell you. “You are a mere custodian.” But you know that it is you who knows your child best. You know, in fact, that she is your child. Not theirs. That you are the parent. Or as close to one as she has right now.
You preserve it by fighting to keep her in your home even though DCF tells you that you can give her back at any time with just ten days’ notice. “No one would blame you if you did,” they say. But you are a family now. Committed as blood. You will see this through because you said you would. Not because you are a doctor and you know everything about eating disorders because clearly you do not. Edie has made that point time and time again. Edie has brought you to your knees more than once. But you get up because you will not let this disease defeat the girl you met when she was seven years old, her blue eyes shining with hope. The one you watched eat less, weigh less, be less. The one you brought into your home to raise as your own.
“I don’t know how much more of this I can take,” you hear the other parents in support group say. You feel the same way. But you preserve the relationship with your child by taking it and taking it and taking it. Because you must. Because there is no excuse for not. Because you have to believe that love is stronger than a disease. That love will win. That love is all you have to fight against the dark.
Carolyn Roy-Bornstein is a pediatrician and writer whose work has appeared in the New York Times, the Boston Globe, Poets & Writers, The Writer magazine and many other venues. She is at work on her second memoir titled Last Stop on the Struggle Bus about taking chances, making commitments and redefining love.
Abandonment and neglect. Substance abuse. Alcoholism. Suicide ideation. These are subjects which are prominent in child welfare and foster care; on average, foster children remain wards of the state for two years. I asked: Why are these stories uncommon despite its longstanding presence? Why is the adage “education out of the system” the emergent path to adulthood? Why have I not found a safe space for these stories from educators, administrators, foster parents, biological parents, kinship placements, adoptees, and the fostered and unfostered?
There has to be a way to make that happen. That is what I’m looking at for this foster care series. The writings I aim to publish will take a variety of forms, including creative nonfiction, hybrid writing, poetry, fiction, visual and text-based. More importantly, they will come from voices which are undeniably unafraid to speak. If language can do that, I think we can get closer to reinventing our experiences; we’re not so different or alone at the end of the day. Send your writings on foster care to firstname.lastname@example.org. And keep speaking.