She was born that way. They all are — these babies who come out covered — covered in red splotches. Butterfly skin disease. Only one in 40,000. Short life-expectancy. A parent has no warning, like a parent has no warning her newborn might emerge with a wandering eye or a cleft palate.
Mother and father cried. Grieved. Prayed for answers.
It was their only chance for a child, and here she was, with raw feet — no covering. The skin on the back of her hands would shed like a snake might shed its outer shell. The rawness of the
skin was so expansive that the baby was put on Methadone. There was fear of addiction, so the pediatricians, lacking hope or real solutions, went to pain killers and antibiotics, rotating them so Clara wouldn’t become resistant.
There was no formal schooling, no real life for the girl, now almost 7. When her mother begged, Clara would agree to go to the park, but only if she was shrouded in softness and could take her Barbies.
On an overcast Sunday morning, Clara knew it was coming, so she dressed in a cozy pink one-piece, one with a hood.
There was little talk on the walk to the park at the end of the their block. The splotchy girl was focused on keeping Barbie and Ken together in their camper.
No one was there. At least that was what Clara thought until she saw a slender man with jet-black hair and a gray goatee. He had rows of yellow heart tattoos decorating his boney arms.
“Please don’t bother my daughter,” Mother said, settling herself on the edge of a frigid gray metal bench.
Clara ran to hide behind the large blue plastic play structure so she could set up her Barbie village without being bothered.
“Maybe I can help … help your little one,” the man with a broad smile, highlighted by a jagged incisor, said to Mother.
“Help how?”
“See me? See these tattoos? I have a friend … we could try covering her … something like roses and butterflies and ladybugs.”
The girl heard the man. Her voice came out like a strangled frog’s, coated in giddiness.
“Please, please, Mom, please!”
Mother had never liked tattoos. She sometimes felt ill when she saw women plastered with dragons or phrases like “My spirit lives here.”
“Thank you, but no thank you,” Mother said, pulling on the loose fabric of her daughter’s terrycloth sleeve.
“Get Barbie’s things. Time to go.”
The man reached out his hand, which was decorated with silver rings bearing crosses and hearts, and placed a small piece of paper in the side of Barbie’s camper van.
“You can let me know,” the man said.
Through the short walk home, Clara yanked on mother’s arm.
“Please, Mommy. Please ask Daddy,”
Mother’s mind flashed to images of her daughter’s now crimson and cardinal dotted with chartreuse, decorated instead with roses and ladybugs.
It wouldn’t be easy. Of course, there was the risk of an extensive infection and would it really make any difference? An 6-year-old girl with tattoos — almost verged on child abuse.
* *
“Guess what, Daddy? We met this guy at the park and he said he can fix me.”
Clara’s father, an architect who designed mostly kitchens, scrunched his lips together and looked to Mommy for answers.
“There was a guy there, maybe like 25 or 30, and he was sweet and had some tattoos and said maybe he could help us by putting some tattoos on Clara, you know, make her look less unusual. Maybe she could even go to school.”
“But I love you the way you are,” Daddy said to Clara.
“Yeah, but I don’t love me.”
“It’s worth a try,” Mommy said. “What if I call Dr. Collins tomorrow?”
“You and Clara do whatever. Just make sure you know what you are doing.”
Monday morning, Mommy didn’t call Dr. Collins. But she did call the tattoo man.
He was certain his friend could help. He gave Mommy an address and told her to be there around 2 that afternoon.
When Clara heard the news, she squawked: “Thank you, Mommy, thank you.”
Mother gave Clara a small squeeze — “but no bringing Barbie, OK?”
* *
Clara and her mother arrived right at 2. Phew, this place looks normal enough, Mommy thought.
The girl grabbed her mother’s hand as they went up red brick steps. The man from the park opened the wooden front door, invited the pair inside, introduced Clyde, the tattoo artist, and told Clara to look at the assortment of tattoos in the binder on the table.
“Look, Mommy, look, we could do yellow butterflies, blue birds, and pink hearts.”
“I don’t know, Clara,” Mommy whispered.
“You know we’ll need to sedate her, give her some laughing gas,” Clyde said.
“What’s that, Mommy? Will it make me giggle?”
“No, it won’t. But that’s enough of this. We’re leaving.”
“Wait, I have an idea,” Clyde said. “We could put some of Marty’s special numbing gel on Clara and I bet she she’ll barely feel a twinge.”
“Please, thank you, please Mommy.”
“OK, but one butterfly and that is it!”
Marty rubbed some green florescent-looking gel on Clara’s right forearm.
“It’s all tingly, ew!”
“Now close your eyes precious one, keep your eyes closed and hold Mommy’s hand.
After an a precise outline of a Monarch, Marty filled in with some yellow and pink, with a tiny red heart in the middle.
Mommy let go of Clara’s hand, kissed her forehead and raised her thumbs in approval.
“I never thought I’d say I like a tattoo, especially on my daughter, but it’s kind of pretty.”
The girl, now with eyes wide open, hopped off the special green chair and twirled around like a feeble ballerina.
“More, more!”
“No, that’s enough for today,” Marty said, standing up and leading mother and daughter to the door.
“Wait, what do I owe you?”
“Nothing. Nothing at all. Just glad to see we could help. Now see how she does over the next few days. Put some ice on it later. You know how to reach Marty if you want to do more.”
Back in the car, Clara smiled in a way Mother had not seen in years … maybe never. She knew her poor damaged daughter had hope — hope of being something normal— for the first time since she discovered she wasn’t.
“Wait ‘till Daddy sees it.”
Clara and Mommy went in the back door into the kitchen, where Daddy was stirring an aromatic pot of split pea soup. Clara always liked how the green goo would slide down coating her blister-covered throat.
“Look, Daddy, look! It’s a butterfly!”
Daddy dropped the silver ladle to the linoleum floor.
“No, no, absolutely not. Go back and tell the man to take it off.”
“It’s too late for that,” Mommy said. “Anyway, I think it’s kind of interesting.”
“Well, I don’t and no more,” Daddy said, rinsing the ladle in the porcelain sink. “Clara, go play in your room.”
“Am I in trouble?”
“No, Sweetie, I just want to talk with Mommy.”
Clara put her left hand over the butterfly, covering it like it might fly away, and went down the hallway to her room.
“What are you doing to her? You know this has to stop. What if she get’s an infection?”
“She was so brave and grown-up and the men were actually pretty cool.”
“Cool, wow. Cool enough to con you into this? How much was it, anyway?”
“Nothing, nothing, They didn’t ask for money.”
“What next? A ladybug? A frog?
Mommy twisted open a bottle of Chardonnay, pouring herself a hearty glass.
“Want one?”
“I’ll get a beer.”
Mommy poured some shelled pistachios into a wooden bowl.
“Let’s go to the den. I want to see the news.”
There was a brief detente as Mommy and Daddy focused on news of an impending storm.
Thirty minutes later, Clara came out of her room, toting Barbie’s camper.
“See, she’s happy.”
Daddy got up from the sofa and went to get another beer.
After a long chug of his Heineken, Daddy said: “One tattoo was one too many. Nothing we can do now, but no more.”
The family had an almost silent dinner. Then Mommy helped Clara bathe and get into her flannel PJs.
The next morning, Clara yelled out: “Mommy, Mommy. I’m so hot.”
“Oh, goodness, Sweetie, you’re burning up. Dan, we gotta get Clara to the hospital.”
By the time the family got to Kaiser, Clara was shivering and could barely breathe — septic shock. She was immediately put on a ventilator and the doctors peppered Mommy and Daddy with questions.
“Who was this person who did the tattoo? When did this fever start? Other than this skin disease, anything else?”
While Mommy struggled to answer, Clara slipped into a coma.
Three days later, the tattooed girl was taken off life support, left to fly her way into heaven.