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BRAVE FOR THOSE WHO LOVE ME
By Wei Shu-zhen and Zhuang Shu-hui
Translated by Lin Sen-shou
Photographs by Yan Lin-zhao
Full recovery from spinal muscular atrophy is as impossible as attempting to grab a star from the sky. Zhang Jia-huan's mother, Li-jun, was once so full of despair about her daughter's illness that in her darkest moments, she even contemplated suicide. "But, I knew my child wouldn't be able to survive if I died, so I couldn't die either." Jia-huan also wanted to kill herself because of the terrible burden she felt her illness had placed upon her mother. "After I tried to kill myself, I realized that I wasn't just living for myself. I knew I had to stay strong whenever I ran into a problem."

Zhang now cherishes all that she has, and she sings to beautify the world. "I feel that I'm a lucky person."

 

Onstage, Zhang Jia-huan (張佳歡) is singing "Angel of Music" from the musical, Phantom of the Opera. She sings with an elegant voice which expresses her spirituality and sincere feeling. Baby-faced Jia-huan is still only 16, but spinal muscular atrophy has left her legs withered. Onstage, even in her wheelchair, she still strikes a petite yet pretty figure.

Her makeup artist, Li-jun (鐘麗君), who helps to push Jia-huan's wheelchair after the show, is also her mother--a glamorous, yet once anxious, woman who has devoted her life to her child's well-being.

When Jia-huan was 11 months old, her mother found out that her daughter's physical development was different from that of other children. Even though Li-jun took Jia-huan to a number of doctors, the dreadful diagnosis always remained the same. Over the years, the immense pressure which arose from trying to combine her work with the full-time care required to adequately look after her seriously sick child forced Li-jun towards the darkest corner of her being. Several times she found herself contemplating suicide.

She remembers on one occasion sobbing as she held Jia-huan in her arms. Her daughter's little hand reached up towards her face. "Mommy, don't cry," she said, but then she too broke into tears. Seeing Jia-huan's helpless tears, Li-jun knew that her daughter would never survive if she killed herself.

After five years of seeking medical help, Li-jun finally faced the truth that her daughter's illness could not be cured. She arranged for her daughter to undergo physical therapy, and Jia-huan tried to do her best. However, overwhelmed with the sadness of being such a tremendous burden to her mother, Jia-huan turned to desperate measures. Just before her ninth birthday, she tried to kill herself by forcing a gold necklace down her throat. Fortunately, her attempt failed.

After Jia-huan was discharged from the hospital, she simply stared out of the window and refused to talk to anyone. Li-jun was both devastated and furious at Jia-huan for attempting to end a life which she herself had fought so hard to raise. However, she withheld this anger and did not vent it out upon her fragile daughter.

"I blamed myself--perhaps the way I had brought her up was wrong." In the past, Li-jun had always commanded her daughter to do what she wanted by saying, "I'm your mother, and whatever I do for you is good for you, so just do as I say." Now she realized she was wrong, and she apologized to her daughter. "Mommy shouldn't have been so hard on you. I was too hasty, so I gave you too many responsibilities. It was wrong for you to try to take your life, because your life doesn't just belong to you, but also to all the people who love you." Li-jun, a single parent, still chokes on the horror of this past event whenever she recalls it.

Around this time, Li-jun discovered that music brought much pleasure to her daughter. Considering the severity of Jia-huan's physical disability--her hands were too weak to play the piano, and she did not have sufficient lung capacity to play any wind instrument--Li-jun bought a small electric piano for her daughter. She asked a teacher to teach Jia-huan how to sing, so that Jia-huan could begin to sing like her mother all of the time.

 

When Jia-huan was 13 years old, she started to take formal singing lessons. Her teacher soon discovered that because Jia-huan was wheelchair-bound for many hours at a time and got no proper exercise, she could not muster enough energy to sing properly. Li-jun then asked her brother to take his niece swimming so that Jia-huan could strengthen and increase her lung capacity.

No matter how busy she was, Li-jun always accompanied her daughter on Sundays. To prevent Jia-huan from feeling lonely, Li-jun would also invite her own friends or customers to her home to hear her daughter sing. When people praised Jia-huan for singing so well, it visibly cheered her up.

After some training, Jia-huan participated in the 14th International Schumann Piano and Vocal Music Competition in Germany in 2004. Even though she could not speak German, she still memorized 28 German songs in three months. She won a special award for being the youngest and also the only physically impaired person in the competition. In addition, she was also named "Envoy of the Schumann Competition." To a young girl who faced a certain future of confinement in a wheelchair, this praise and encouragement was indeed a great affirmation.

Last year, in 2005, Li-jun took Jia-huan to Beijing to participate in the entrance exam for the China Disabled People's Performing Art Troupe. Her beautiful voice greatly touched the examiners. When Li-jun heard that the troupe had decided to accept her daughter, she screamed with joy.

Before her debut performance, Jia-huan unexpectedly developed a high fever. Not wanting to miss out after she had worked so hard for it, she took some medicine and begged her mother to let her go ahead and perform.

However, her condition worsened and tragically she had to be hospitalized. She pleaded with her mother to take her to the performance. Clutching the doctor's hand, she tearfully begged him to reduce her fever. The doctor advised the young girl to drink a lot of water, and she drank until she could not possibly drink any more. These actions indicated just how desperately she wanted to sing.

"I'm very happy to perform each time, but I'm not in good shape. As a result, there are times when I cannot sing very well. However, I always force myself to do my best. When God closes one door for me, He also opens another. If I can't walk on this path, I can take another one. If I try hard, I'm sure I can reach my goal."

Jia-huan is very grateful for her mother's care. "My mom always carries me on her back to go up the stairs. Sometimes she slips and we fall down, but then some good person will always come to help us out." Having grown up in such a loving environment, Jia-huan hopes her songs can bring bliss to other people.

Li-jun now lives with Jia-huan in Beijing, and always goes with her daughter when she travels overseas. She is always by her daughter's side, a habit which started way back in those difficult days when she first accompanied Jia-huan to seek medical treatment, then to singing lessons, right up to the present. With a knowing look in her eyes, she comments, "When you overcome the difficulties ahead of you, all those hardships will become your greatest fortunes."