Or the strain, helplessness and anxiety that parents feel when faced with this syndrome.
Yet they keep on persevering.
Actually, I still don't understand Down's syndrome.
But during this time I have learned how to "see people."
The longer I go, the less I understand Down's syndrome, because sometimes I actually think these little kids are angels,
That they are gifts sent by God to this society of ours that is increasingly cold and distant,
To tell us that we ought to accept people who are different from us,
And to remind the many people who have become preoccupied and blinded by the money game,
To slow down and reflect
On the definition of "a person."
After Chiu Li-fu was born, the doctor did not dare to directly tell Mrs. Chiu her child's condition. And given that most people don't understand very clearly what Down's syndrome is, the doctor just said that the baby's pinky fingers only had two joints, and his nose was broad and flat. At that time, Mrs. Chiu thought, "What difference does it make?" Only after they had taken a second sample of the the baby's blood did the doctor formally inform her that her child had Down's syndrome, or Mongolism. Only then did Mrs. Chiu know that her own offspring was a "Down's baby."
Looking back at that period, Mrs. Chiu explains, if she had not once happened across another Down's family on the train, perhaps to this day she would not have been able to come out from under the shadow of that event.
Because she was in very poor spirits that day, Mrs. Chiu went to the Peitou train station, got on the train by herself, and took a trip into downtown Taipei to put her mind at ease. After she got on the train, Mrs. Chiu noticed another mother and a daughter with Down's syndrome, who were returning to Taipei. When she saw this pair that were similar to her and her child, she asked many questions, and the other mother enthusiastically told her how she should take care of a Down's baby. On the train, she told her, "Be sure to dress your baby up very clean and very pretty, so that people won't feel an aversion to him," and "In the future, you're going to like this child more and more."
This serendipitous experience gave Mrs. Chiu confidence. After she got off the train in Taipei, she went to Chungking South Road to look for some books to help her understand what Down's syndrome was. In this way she began to learn as she went along, and she has been doing so to this day.
This year, Chiu Li-fu started fifth grade. In his school's special education class, his teacher and classmates call him "Yixiu," and he really can imitate the mannerisms of Ikkyu the Japanese cartoon monk (whose name is pronounced Yixiu in Chinese). Just like all the other kids, he likes Slam Dunk and the Golden Warriors. The teacher says that Yixiu draws pictures very well; his works can be seen on display both at his school and his afterschool activity class.
While I interacted with them during our interview, I could deeply sense the suffering which Mrs. Chiu had gone through on behalf of her child. From going through seven or eight nannies one after another, to searching for an afterschool activity class, Mrs. Chiu took care of three children all by herself. Now Chiu Li-fu, like all Down's children, is very affectionate and loyal to his parents and teachers. And he remembers my taking his picture, and the Batman toy I gave to him before his birthday. From that time on, that "uncle" of his who took his picture has himself become "Batman" on Chiu Li-fu's lips.
Chiu Li-fu is eleven years old this year. He lives in Peitou.
(photos and text by Lin Meng-san/tr. by Brent Heinrich)
Only in the last few years, after my son and daughter were born and started to grow up, have I for the first time experienced what it is like to be a parent and support a family. I believe that the problems that a family living in our crowded urban society must face in regards to the quality of living environment, educating children and economic pressures have already made us weary and incapable of patience when we must face situations within our families or in the outside world. What is more, jagged wounds have been left behind in our spirits and our bodies.
How can families with Down's children keep going, with a perseverance that ordinary people cannot attain? I am reminded that sometimes because I cannot calm my emotions, or because of outside disturbances, I direct harsh language toward my children, or even my relatives, and afterwards I can't help feeling ashamed and distressed.
Chen-yu is a kid who really likes music. In Chen-yu's home, I have listened to him spontaneously tapping out notes on his big sister's piano. He can really relish the happiness that music gives him. I have had a few chances on various different occasions to see Chen-yu's spirited motions as he has danced freely to music. That ability to naturally release one's own emotions has already been lost by most children who live under Taiwan's restrictive educational system. One time Chen-yu came to play at our house, and in our game he and I were on one team opposite the brother and sister team of Hung-yi and Hsin-yi. After we won the game, in his excitement, Chen-yu gave me a sweet kiss on my cheek, making me feel embarrassed. In our family, six-year-old Hung-yi and four-year-old Hsin-yi already refuse to express their love for me with a kiss. That is why I believe that Down's children are more able than the average person to reveal their true selves.
Every one of us, in our brief lives, must confront the uncertainties of the future. To one degree or another, our bodies and minds will be scathed. We must all lift up the burdens of real life. The ancient poet Tao Yuanming once described contentment as, "The body has a reserve of labor, the heart has frequent leisure." Today, people are too busy trying to maintain the minimum requirements for their physical existences to have that kind of relaxed, merry perspective on life. I'm afraid few people indeed are able to address the real world with a "heart of frequent leisure."
The families of Down's children silently support them, due to the incomparable power of parental love. Perhaps at the same time our society could provide practical support, whether it be in terms of education or employment, to help develop a path that they can take for themselves. Then, the pure, tranquil spirit of a Down's child perhaps will not need to follow the irreversible pattern of most modern people, and gradually wither away.
I hope that all Down's children will be able to keep a grasp on those hearts of theirs as innocent as a newborn baby's, and happily complete their days on this earth.