By Liu Xiao-fen
Translated by Wu Hsiao-ting
Photo by Zhan Da-wei
Despite all the challenges she has faced due to brittle bone disease, Xiao-zhen shines like a little sun, touching and warming the hearts of those around her.
Volunteers hold the hands of Xiao-zhen, a victim of brittle bone disease. They empathize with all that she has suffered, while wishing her the best.
On January 7, 2023, a small group of us from Tzu Chi visited Xiao-zhen, 11, and her family. We brought food, a gift card, drawing paper, and colored pens. The little girl warmly greeted us with polite manners as soon as she saw us.
Xiao-zhen loves drawing. Her art style is lively, characterized by vibrant colors. Her drawings on display in the living room exude a sense of joy and happiness.
We first met Xiao-zhen and her family two years ago. Xiao-zhen’s mother, Ci-rui, told us at that time that she began having regular monthly check-ups when she learned that she was pregnant with Xiao-Zhen, along with additional self-funded examinations. She said she and her husband faithfully followed the healthcare advice of medical professionals. They were filled with anticipation as they eagerly awaited the birth of their first child.
After the child was born, the couple stood by the glass window of the nursery, observing their baby’s pale lips and feeble cries. In comparison to the other newborns, their beloved appeared somewhat different. Following an examination, the doctor couldn’t hide his shock as he delivered a grim diagnosis: “Your child has been diagnosed with osteogenesis imperfecta and requires a referral for further treatment.”
Osteogenesis imperfecta, commonly known as brittle bone disease, has an incidence rate of one in 20,000. Instead of being able to fully embrace the joy brought by the arrival of their newborn, the couple’s lives became shrouded in a cloud of worry and despair.
They couldn’t understand why this was happening to them, especially since neither of them had a genetic history of this condition, and the monthly prenatal check-ups had been normal. Questions like “Why me? Why us?” reverberated in their minds. The mother, in particular, was overwhelmed with doubts and sadness. She didn’t want to believe it, causing her inner self to continuously scream. Despite the belief among the older generation that tears could have a negative impact on a new mother’s health, she found herself crying every day.
“However, as I gazed upon my child’s innocent face and sweet smile, I came to accept my fate,” the mother said. “Despite the many unknown challenges that I knew awaited us, she was still my precious daughter.”
Perhaps it was a small consolation from a higher power that the child was easy to care for right from birth. She seldom cried without reason and never threw tantrums. As the child’s peers grew, learned to stand and walk, and started playing with their neighbors and classmates, Xiao-zhen, confined to a wheelchair, could only look on with envy. Nevertheless, she made a wish: “One day, I will stand up too.”
In November 2022, the girl made a decision and told her mother, “I want to stand up.” Unable to resist her child’s request, Ci-rui arranged for her to undergo a surgical procedure after consultation and assessment by doctors. The surgery lasted over seven hours. It involved correcting her leg curvature and inserting bone screws, all with the hope of giving her a chance to stand up.
After the effects of the anesthesia wore off, the girl couldn’t bear the intense pain and cried out, “It hurts so much!” The side effects of the medications she had to take made her constantly nauseous, and if that wasn’t bad enough, her legs were encased in hard plaster casts, causing discomfort and itchiness. She was just an elementary school student, but in her strong determination to stand up, she bravely endured all of it.
Accompanied by her mother, Xiao-zhen went to live with her maternal grandmother for a while. The affectionate grandmother provided the girl with attentive care, and they became the closest of companions. Whenever the grandmother attended choir practice, she brought Xiao-zhen along. During our visit, the grandmother and granddaughter joyfully sang the first song they had learned together.
“Today, another child wanted to play with Xiao-zhen, but unfortunately, she ended up fracturing a bone again,” her mother said with a helpless tone. As I looked at Xiao-zhen, my heart filled with sorrow and heartache. The thoughtful little girl seemed to sense my thoughts. She reached out and held my hand to comfort me, saying reassuringly, “Don’t worry, I’m not in pain. I’ll be fine in a few days.”
I couldn’t help but wonder: “Could this girl be an angel descended from heaven, with a heart full of love and forgiveness despite the trials she’s had to endure?”
When I returned home, I started writing the visit report: “Xiao-zhen, at the age of 11, appeared incredibly thin and frail due to her illness. Despite weighing only 16 kilograms [35 pounds], her legs remained too weak to support her body’s weight after the surgery….” The echoes of laughter and the sweet melodies sung by the grandmother and granddaughter lingered in my ears, evoking the wisdom of an aphorism by Dharma Master Cheng Yen: “Happiness does not come from having more, but from having a big heart.”
As I wrote the report, I made a heartfelt wish for the little giant’s dream of standing up to be realized soon. I also hoped that her warmth and radiance, like that of the sun, could touch and warm the hearts of everyone around her.