"I Am Not My Face"

We weren't sure which special needs we were ready to accommodate. But when we met a little girl with facial burns, she stole our heart.

Anastasia, after her surgery to repair her facial burns, with her mother

A tiny girl in a fragile cotton dress and worn tights leaned against the door to the orphanage corridor. “Nyet! Mya Mama!” she screamed at a half-dozen 12-year-old boys, who were desperate to see what it was that she was getting that they would probably never have. But Anastasia prevailed. The boys drifted away, leaving the two of us alone again.

The good side of her face, I noticed, was pretty, barely brushed with freckles. She seemed bright, alert. Catching me staring at her, she flashed a wide grin, pointed at the dilapidated piano, and commanded something in Russian. Not knowing how to say, “I can’t play the piano,” I shook my head and pulled a ball from my backpack. She stomped her feet and her grin turned into a do-it-now look that panicked me. She stomped again and began to wail.

Luckily, at that moment, I was rescued by a translator, returning with Anastasia’s primary caregiver. My future daughter, she cautioned, is the most everything: the most bright, the most outgoing, the most helpful, the most bossy. When the adults have to leave the room for a moment, they put her in charge. When a new child enters the group and needs to learn the rules, they put Anastasia on the watch. But, sensing my fear, the caregiver assured me that Anastasia likes to please.

Redefining our Limits

We can accept nearly any moderate special need, my husband and I had told our social worker nine months before. Hepatitis or learning delays are OK. We can probably handle missing digits or club feet — but nothing disfiguring to the face. Two days later, our agency e-mailed us a file, filled with photos of a little girl with facial burns. I didn’t open the file that day. In fact, I never intended to. I was afraid to see the images it might contain.

But my curiosity couldn’t be restrained. One morning, I opened the file and met the gaze of a bubbly five-year-old girl with resolute hazel eyes, the left side of her face distorted. I was surprised that I did not feel revulsion or even pity. Instead, I felt tenderness: This child needed to be in my arms.

No Shrinking Violet

After months of discussions with specialists and the orphanage directors, I headed halfway across the world to meet Anastasia, leaving my husband at home with our children. I remember thinking, Will my life ever be the same? What will people think when they see me with her? and then, How will she cope with the world staring at her? Will she leave the house and make friends? How will I teach her to be confident instead of embarrassed by her face? But this little girl, who could single-handedly hold back a tide of boys at the door, was no shrinking violet.

After we brought her home, Anastasia showed little shyness about her face. She charmed new friends quickly with her personality. On the occasion when a child would stare, she would whisper, “Mom, can I stand behind you?” In minutes, she would forget and be back at play. She loved to dress up and wear play makeup, smearing shadow on her misshapen eyelid and admiring herself in the mirror.

Soon we developed our routine: After some primping, she’d ask if she looked pretty, and we’d say, “Are you smiling? If you’re smiling, then you’re pretty.” She would groan, because that was not what she meant, but then she’d reward us with a smile and we’d acknowledge that she was gorgeous.

Maybe, we thought, the crisis would finally come with the big surgery. After consulting several doctors, we decided to implant tissue expanders that would help reconstruct the damaged skin on Anastasia’s face. We knew the expanders would get huge as the new skin grew in. How would our vain little girl tolerate more changes to her face?

I discussed my concerns with her doctors and sought a therapist for advice. I could counsel Anastasia and help her through this. I’d buy her scarves and hats, and help her respond to questioning children. I felt armed. Ready.

Life Goes On

The surgery happened and life went on. I imagined shyness would set in as soon as the expanders began to grow. But Anastasia was not about to sit out any family activities. She’d leave the house with a scarf wrapped loosely around her most obvious balloon, the one on her neck. Later, I would pick up the scarf from where she had discarded it — a bench at McDonald’s, the sandbox at the park, the floor of the car.

After two months the balloons reached their maximum sizes: an egg on her forehead and softballs on her neck and chest. Still, Anastasia was eager to go out. “Mom, everyone is always so nice!” Yes, I had marveled at that, too.

A few days before the procedure to replace her scarred skin with new tissue, it was Anastasia’s birthday. After toying with several ideas, she came to a decision. “I want a monster party,” she insisted. “Wouldn’t it be funny if we used face paint and made the balloon on my forehead look like a big eyeball, and the one on my neck like a snakes head?” The effect was monster-like. But our confident girl just laughed, eager to show her friends how horrid she looked.

After the surgery, there were new, seamed scars circling the side of her face — and more stares and questions. For my husband and me, the scars were minor details on our beautiful child, forgotten in the rush of her inquisitive chatter, her spirit and determination. But, if onlookers were curious, Anastasia would usually answer, “I got burned when I was a baby, and the doctor fixed it. I like your hair. I’m going to get mine cut like that someday.” Then she would run off to play again, and I would wonder how we could ever have questioned our decision to raise this child.

We brought our daughter home wondering what we could teach her, how we could help her live with a disfigured face in a beauty-obsessed world. In the end, it was Anastasia who taught us, I am not my face.

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