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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."
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