If you can read this whole short story without crying, I'll send you a dollar. Of course, you'll be admitting you have no heart. My e-mail is ebgb1022@cfl.rr.com

She Dances on Her Toes

By J. J. White

 

Emily was an imp. It took us a while to figure that out, about six months. Our first child, so naturally, we wanted as much documentation as possible; photographs, recordings, portraits and anything else proud parents could think of to show off their new child.

We probably did everything wrong: spoiled her, worried over her, but we were children ourselves, or at least we felt like children.

For some reason we thought we needed an oil portrait of the family. The artist gave up trying to pose us after Emily wormed out of Jennie's lap for the twelfth time, so we had a photo taken and the artist used it for the oil painting.

A week later, I received a call.

"Mr. Campbell," the artist said. "I've pretty much finished with the portrait if you want to come and take a look at it. I had some trouble with your daughter's face. It took me a while to capture her expression, but I think I've figured it out, finally."

I knew exactly what he meant. We had just figured it out ourselves a few weeks earlier. "Mischievous?" I asked.

"Yes - that's it. I hadn't thought of that exact word, but it fits. Mischievous. I think you have a handful there."

I chuckled. Didn't we know it. The child loved adventure. No ant, toy, pan, noise, smell, or person escaped her attention. All were provided by God to entertain her and only her. Or so she seemed to think.

I never knew what to expect when returning home from work. One memorable afternoon, I walked into the family room to an eerie quiet. Quiet was bad, or so I had learned as the owner of a one-year-old.

A faint squeak emitted from behind the sofa. Emily's feet greeted me as I peered in the space between the back of the sofa and the wall. She wasn't frightened. She seemed to be enjoying herself, though wriggling like a cat in a paper bag.

"What did she do now?" It was Jennie. My wife had stopped overreacting to Emily's adventures, a month, and two bottles of antacid ago.

"Your guess is as good as mine," I replied. "I'll hold her feet while you pull out the sofa." There were no extra scratches and no lasting psychological effects on the child, which could hardly be said for us. You get the idea of the child's personality, but I'll relate another incident to confirm the findings.

Another afternoon arrival, but not to a quiet room, just the opposite, an ear piercing clamour of metal on metal emanating from the upper cabinet over the oven. I opened the cupboard door to see Emily in mid-strike with two Revere Ware copper bottom pots. She glared at me. How dare I interrupt? I closed the cabinet door, shook my head, and called for the negligent mother, as if she could have prevented the din. The message was clear: don't turn your back on me or suffer the consequences.

Now imagine a large dog with an extremely wet mouth, licking your face one hundred times. As horrible as that sounds, our five-year-old believed it was her way of showing love.

Jennie lifted Emily onto her lap and kissed her forehead good morning.

"A hundred kisses!" Emily shouted and proceeded to do just that, each one on Jennie's face louder and wetter than the last. At the conclusion of the onslaught, Jennie excused herself and whispered, "I'm going to take a shower."

"Please," I replied, and kept my distance.

Seven should have been an exciting time in Emily's life. The wild whirligig slowed for no one, talking, dancing, running. She had the unusual habit of running on her toes. It didn't slow her down; if anything, it made her run faster.

"Isn't she adorable?" Jennie asked, as we watched Emily in dance class. She'd flit across the floor on her toes. Ms. Carew would always comment, "She dances so lovely on her toes. Pointe will come to her naturally - a future ballerina."

To be honest, that's probably why we enrolled her in dance, as well as soccer and swimming classes. I imagined her, the ingénue, stunning the Bolshoi, or the star striker, beating all the other girls to the soccer ball. Living the glory through the child, I guess. At least I admit it.

My selfish dreams ended that day in the park. We watched Emily running on her toes, like Mercury delivering an important communication to the gods. Her long blond hair slapped at her face as she alternated between bridges and castles, interrupted only by swing sets.

"Is that your daughter?" the woman seated next to me asked.

"Yes, that's our Emily." I said proudly, wanting to add, "The prettiest girl out here, don't you think?"

"She runs on her toes all the time," she said.

"She's always done that. It doesn't seem to hold her back. In fact we have trouble keeping up with her."

The woman sighed. "I work in the medical profession so I've seen this before," she said. "You might want to have a neurologist see Emily. Walking on her toes is usually an indication of a muscular disorder." She touched my arm.

I didn't know how to respond. I had just received a hammer blow to my chest. Emily sick? It wasn't possible.

The neurologist was a pragmatic man. In some ways, I appreciated that. In other ways, I wanted to choke him as he methodically spelled out his diagnosis and his goddamn options.

"Emily is suffering a loss of muscle mass, a wasting of the muscular structure with contractures."

"Contractures?" Jennie asked.

"A permanent tightening of a muscle that affects its shape. That's why she walks on her toes, to compensate for the weak muscles. It's common to patients with muscular dystrophy."

I'd never heard my wife gasp before. The neurologist said the words as if he were a mechanic discussing a bent tie-rod on an SUV.

Muscular dystrophy was a cliché that other children suffered to maintain telethons, not something that could afflict my daughter. We learned Emily had Duchenne Muscular Dystrophy. Extremely rare in girls and yet, genetically passed on from us to her. One defect among millions, but deadly just the same. The doctor, again dispassionately, said she could live to puberty, but it was unlikely.

There was no way for us to explain to Emily what was wrong with her. We never did. As the symptoms worsened and she adapted to her affliction, there wasn't any need to explain.

Emily fought the disease bravely, through the crutches, the wheelchairs, until eventually, her muscles could no longer support her body, and she progressed to a negative pressure ventilator, the technical name for an iron lung. It was an odd machine; a large plastic container that enclosed her torso, up to her neck. It breathed for her since her body no longer had the strength. Emily's head was exposed, but an oxygen mask covered her mouth and nose.

Defying the doctor's prediction, she turned thirteen - and so, I waited. I waited by her side. I waited all day; I waited all night - waited for her to die. Jennie couldn't stand to watch Emily suffer. I couldn't blame her. It's too much to ask of any parent. I'm not sure how I managed, but I did, fighting the inner conflict between wishing she'd live and hoping she'd die.

I brushed her hair often to show her I was still there and to break the monotony of the whoosh-whoosh of the beast preventing her escape.

Then - she opened her eyes and startled me. She must have realized it was close. I debated removing the oxygen mask, knowing if I left it off too long it would speed her death, but it was obvious she wanted to say something. Knowing my imp, she'd probably say something clever or maybe just "I love you," or "Thanks, Dad."

I removed the mask. Emily smiled and whispered - "A hundred kisses."

God, if only she had only said something else, anything else. My chest heaved as I gasped for air between sobs. Even as I cried, I worried about the oxygen mask and knew I needed to compose myself. I wiped my eyes with my sleeve and repositioned the mask on her.

"Okay, baby," I said, and kissed her the hundred times around and under the mask.

Then I thought back, to the imp twirling in her dance outfit with her long blond hair slashing the air as she danced on her toes.