Shira

This story is dedicated to Shira, a princess.

Shira was born at the turn of the year, with the special air and color of Israeli autumn. She arrived at 34 weeks and was delivered in an emergency procedure. For eight months, Shira cried and wrestled with the life she had been given until she finally calmed. “But then the epilepsy began,” her mother recalls. Seizures struck Shira again and again, and again, stealing her speech, movement, self-care, and potential to grow, rise, and fulfill every promise nature and nurture could hold.

But Shira was, as I said, a princess.

Her skin was velvet, her eyes almond-shaped, her face angelic, olive skin, and long, long fingers. Her dark brown hair reached the floor when let loose, and every morning, after a hundred and one brush strokes, it was woven into a thick, beautiful braid. Shira wore the most beautiful clothes and slept in a canopy bed. And because she was a gentle, fair princess, she wore her golden crown only twice a year, on special occasions.

Sitting in her wheelchair, Shira always listened to music. “She is completely immersed in the music,” her parents told me. Songs were played and sung to Shira every day, all the time. “Is she musical?” I asked. They did not think so at the time. “When you’re musical, you have a good ear,” her father thought. “You can read musical notes, and hear when the music is off,” her mother added. And yet, they told me, music was woven deeply into this family's life: Shira cried when there was no music, and she had a noticeable musical taste: upbeat songs calmed her when she was in distress. They made her smile and move. Her small world was filled with music: at home, in car rides, and they bought tickets to every concert with her favorite artists, traveling far and near with the epilepsy, the wheelchair, the medical equipment, Prema, her aide, and Noam, Shira's younger brother. At these concerts, Shira sat — just as a princess should — high on her mother’s lap, embraced, upright, wide awake, living the music: “She would tap the rhythm with her feet, just like this!"

For her birthdays, Shira’s favorite singers came and performed for her, often volunteering to sing and dance for her. On the Simchat Torah holiday, the large festival truck with music and lights arrived, and the whole community streamed into their small balcony to dance with Shira and bring her joy.

In my mind's eye, I see a simple, small wooden box with the lid closed. A mystery box. Suddenly, it is opened, and a lovely ballerina pops out - princess-ballerina, whirling in dance, filling the room with light as her soft music plays. With children like Shira, if you are innocent enough, attentive enough, and very, very calm, you may find yourself drawn into that thin bubble of music, motion, gentle life bursting forth from this plain-looking, closed, silent box.