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Mrs. Hui-ling Wu | Mrs. Mei-yuan Lin  | 
| Taiwan Disability-free Association 
|

|  Mrs. Chao-jin Wang  | Mrs. Li-ching Chen  |
| Doctor Chu of  Tzu Chi Hospital
|

 

Mrs. Hui-ling Wu

Time: 10.15.2006  9am~12pm
Location: Hongyeh Tribe (Mrs. Hui-ling Wu)

Reporter: Wei-jie Li

Topic: Intestinal nerve hypogenesis disease

 

Taking nutrients injection

 

In the living room

Q1: When did you start to care for En-ci?

Ans: En-ci began to have constipation since 3 years old. After seeing many doctors, she did not improve. The doctor said that she only had three months to live. I didn’t want to give up, so I took her to Hualien Tzu Chi Hospital in March 2004. At that time, she was bony with large abdomen, and could not eat normally. The result of diagnosis was Intestinal nerve hypogenesis disease.

It has been over 4 years since the onset of the disease.

Q2: Has En-ci had surgery? How did you feel at that time?

Ans: Last July, En-ci came to Tzu Chi Hospital for the first surgery, and that took five hours. My husband and I paced outside of the surgery room for 5 hours. We were very worried and anxious. However, both of us were calm this time. Even this surgery took over 6 hours, we were able to read newspaper while we waited.TOP

 

 

 

Photo with her brother

   

Q3: Would En-ci’s condition affect her study?

Ans: She cannot attend school like normal kids, she only goes to school when she is well. Of course, her study would be affected. Fortunately, we have a group of enthusiastic teachers (Ms. Jia-chi Li and Ms. Hsiang-lien Tan from Hualien County Mayuan Elementary School) volunteering to tutor En-ci at night, so that her progress is not too far behind.TOP

 

Ms. Tan is tutoring

 

Ms. Li is tutoring

 

Mrs. Mei-yuan Lin

Time: 10.22.2006 9-11am
Location: Hualien City(Mei-yuan Lin)
Reporter: Su-hua Huang
Topic: Slow-flying Angel

 

Wash up for her daughter

 

Move around

Q1: What is “sweet lemen”?

Ans: I encourage myself with the philosophy of “life is like a sweet lemon.” I have an inner force continuing to push me forward and devote to my work and life. I think this persistence is “sweet lemon” philosophy. When destiny gives your life a lemon, you could add some water, honey, and fragrance to make it into a cup of nice lemonade. This is my life attitude.

 

Q2: Why would you write the book “Slow-flying Angel”?

Ans: I just want to tell my own story, and through publication, I could convey my life philosophy and promote the early intervention program of mentally retarded children. My life motto is “Have an optimistic life to make your life optimistic.” As a parent of mentally retarded child, I still could live freely and with values; it depends on how we build ourselves. Maybe we could add some sweeteners to the sour lemon, and make it delicious sweet lemonade.

 

Q3: Did you move three times for Shu-an?

Ans: For Shu-an’s therapy, we began to move from Tainan to Taipei, then Hualien, to search for medical resources and friendly environment. To be able to care for Shu-an while working, I joined Hsin-ai Children’s Development Center as a caretaker. From there on, I became involved in early intervention program. To help other families in the same situation, I established the Early Intervention Foundation with Doctor Huang-chung Guo of Tzu Chi Hospital in 1996. We even visited Germany to gain a broader view on social welfare. For self-growth, I finally realized my dream to pursue education and became an university student at the age of 40. To promote free diagnosis for children’s development with “Health Train”, I went to Lanyu, Kimen, Matzu, Taitung, Nantou, even Mainland China to share my experience with the parents.

 

Q4: Is it a difficult experience to take care of Shu-an?

Ans: “This child will lie on bed for the rest of her life, and will encumber you for life, just give up,” said the doctor 19 years ago. After 7000 days of sleepless nights, turmoil, and wandering between life and death, I am still optimistic, enthusiastic, and bright. I feel that life is a sweet lemon, though with bitter juice, I can still feel the toughness and miracle of life. I believe that Shu-an is the angel who teaches me about life and death.TOP

 

Taiwan Disability-free Association (Kun-hua Lin)

Time: 10.29.2006  9am-12pm
Location: Hongyeh Elementary School(telephone interview)
Reporter: Feng-mei Lin
Topic: Mother of loving hearts

 

     

Q1: What is the origin of Taiwan Disability-free Association?

Ans: On August 28, 1995, Mr. Jun-fu Lin and a group of disabled friends established the Taiwan Disability-free Association with the mission to create a disability-free living environment. This is the first organization in Taiwan with focus on “disability-free”. A “disability-free” society include establishing the disability-free environment and mentality, with the aim to help disabled people living independently, and educate others about the predicament of the disability.
 

Q2: What is the origin of the Mother with Loving Heart program?

Ans: In 1994, with gratitude for the greatness and painstaking of mothers of disabled children, the Taiwan Disability-free Association appealed to the disabled people and interested public to establish the 1st Ten Mothers with Loving Hearts Award. Over the past ten years, the Taiwan Disability-free Association has strived to promote the awareness of the whole society, and gained support and concerned from all circles. They have suggested to the government for improvement of social welfare, and provided assistance to some cases. Over the ten years, we have presented 100 moving stories of mothers, and moved many people. We expect that over 10,000 cases could benefit from this program directly, and even more to benefit indirectly.

 

Awarding ceremony

 

Received by the President

Q3: What is the meaning of Cihui Award?

Ans: Mother’s love is the primitive force for every life and the whole society. Mothers always sacrifice themselves selflessly to nurture their children. Every ordinary mother has great love, thus, we want to mothers of disabled children because they have to bear more courage, shed more tears, and endure more distress, and sacrifice more energy than other mothers in a way unimaginable. This program is not to select the most miserable mother, but to present the education meaning of different topics. This is not a competition, thus has no rating. We average out the type of disability and regional difference, and select the social models with educational significance for awards. It is a moderate movement originated by the Taiwan Disability-free Association, to educate the public about the mothers’ greatness and the hardship of the disabled people in every aspect of life. The public understanding of the disabled life is the best achievement of the Association. Now, the awarding of Ten Mothers with Loving Hearts has been a major issue in Taiwan, and the President sees those mothers for their suggestions as reference to social welfare policy.

Mother’s love is the power of all lives. The gentle and delicate can grow to the strong only in the cuddle of love. Mother’s love is selfless and asks for no returns. It seems to a basic instinct starting from the conception and it will never diminish because of the Child’s disability. Mother’s love is just like the sun shining across the earth, providing warmth and light to all and making it possible for lives to grow and reproduce endlessly. However, mother’s love is not the scorching sun in the summer noon but the gentle and warm sun in winter days. Day after day, Mother takes care of the child with love unchangeable by troubles, growingly crouched body and graying hairs. Let Cihui Award be an eyewitness to the great mother’s love!TOP

 

Mrs. Chao-jin wang

Time: 11.4.2006 9-10am
Location: Hongyeh Elementary School(phone interview)
Reporter: Hao-wei Hsu
Topic: Hemophilioid disease

 

 
     

Q1: What is Hemophilioid disease?

Ans: It is a congenital hemorrhagic disease found by Dr. Erik von Willebrand of  Finland on an island called Aland in 1926. Its symptoms are similar to that of hemophilia, so it is also called pseudohemophilia parahemophilia. Indeed, it is somehow related yet different from hemophilia.
 

Q2: Are you seriously ill yourself?

Ans: I have severe depression, a brain tumor, for which I underwent three surgeries, and amnesia, so that I have no sense of taste or smell. My children have Hemophilioid disease, and my son is in a vegetative state. However, I don’t want to give up, and I have established Yunyun’s Home to provide community service.

 

Q3: How has you been through this?

Ans: When my son was 8 years old, he fell from the bed, and barely made it at the hospital. That’s when we found that he has Hemophilioid disease, and the doctor said he might be in vegetative state. I never gave up on my son, I slowly taught him to speak and take care of himself. He’s now in middle school, and the doctor said it is a miracle. I hope that I could write a book about this experience to inspire others.TOP

 

Mrs. Li-ching Chen

Time: 11.5.2006, 2-4pm
Location: Hongyeh Elementary School(phone interview)
Reporter: Cai-hsia Hong
Topic: Bullous Congenital ichthyosiform erythoderma

 

Skin peeling off

 

Chap of furfur

Q1: What is Bullous Congenital ichthyosiform erythoderma?

Ans: Those suffer from Bullous Congenital ichthyosiform erythoderma, Psoriosis, and Cutaneous Disorders of Keratinisation are commonly known as the “Red Child”, “Pagnolin Man”, “Bubble Man”. It is a congenital disease. Because of the abnormal keratinisation of the skin cells, the skin surface appears as red spots, and the skin would chap due to dryness. The main pathological change is the metabolism of the surface skin. The skin of normal people decorticate once every 50-60 days, yet the patient’s skin growth few times faster, about once every 7 days. Thus, the keratinisation of the cuticle is incomplete. It not causes unpleasant appearance, but also leads to functional disorder. In Taiwan, there are few researches on these diseases. The patients are suffered from the disease and could not find proper treatment.
 

Q2: What is Jun-wei’s biggest problem and wish?

Like children from all other patients’ families, Jun-wei did not know what sliding board, swing-boat and hide and see are as he was afraid of the curiosity of others at his appearance. When he walked out of his home, he had to wrap himself up as a “mummy”. However, words like “devil, monster” still haunting his ears and making his heart bleeding.

We just want to live like normal people, and Jun-wei could have the right to education and medical treatment. The disease is not contagious.

“I believe that crisis is the opportunity! “ Li-ching Chen said. She carried out in-sight study of Bullous Congenital Ichthyosiform Erythoderma for the sake of Jun-wei and gave great help to her career development. At present, the objective of the mom and son is to set up a “Comprehensive Bullous Congenital Ichthyosiform Erythoderma Welfare Center” for all the patients across the nation.TOP

 

Doctor Jia-hsiang Chu of the Pediatrician Department of Hualien Tzu Chi Hospital

Time: 11.10.2006 9-11am
Location: Hualien Tzu Chi Hospital(Doctor Chu)
Reporter: Wei-jie Li
Topic: Mrs. Hui-ling Wu

 

En-ci presents flowers to
Doctor Chu

 

En-ci presents flowers to
Doctor Peng

Q1: What do you think of Mrs. Wu and the treatment process.

Ans: When Mrs. Wu brought En-ci to our hospital, En-ci was bony and had a large abdomen. She cannot eat like normal children and looks as pitiful as “African refugees”. After the integrated diagnosis of doctors from departments of the hospital, En-ci was found to suffer from the incurable “Intestinal nerve hypogenesis disease”, which makes doctors helpless. However, Mrs. Wu did not give up. She followed the medical treatment plans and doctors’ advices in learning nursing, and took all the daily care. Her husband specifically learns acupuncture and sole massage to relive the pain when the disease takes on En-ci. Because the intestinal nerves of En-ci are not active like normal children, the peristalsis sometimes stops completely and sometimes slow. When it stops completely, it cause swelling and angina of the abdomen and unable to intake food.

I suggested to Mrs. Wu to accept TPN supportive therapy for En-ci. Mrs. Wu took care every detail of En-ci’s daily care. When En-ci was in pain, she would use acupuncture and foot massage to ease the pain. When it was serious, she wouldn’t sleep for the whole night. Over the two years, Mrs. Wu has persisted. A child who was announced to have only three months to live now has regained vitality and health. The mother’s sacrifice is incomparable to anything in the world.TOP

 

 

Presenting gratitude card to nurses

   
 

Q2: How did you treat her large abdomen last year?

Last July, Doctor Hai-chi Peng, the director of the Pediatric surgery department, took an operation on En-ci. During the operation, the medical team undiscovered the exciting fact that En-ci had not lost all her intestinal functions. Doctor Peng immediately decided to connect two openings to the large and small intestines of En-ci to test her intestinal function and help pass out her gas and defecation in the mean time.

After operation, En-ci’s once 50cm abdomen was gone with passing out the accumulated gas and defecation. Since operation, En-ci could go to school in lighted heart and her parents could enjoy the happiness of living a normal and casual life once again. En-ci is in a fairly good condition ever since the operation. Although, Hui-ling still has to help En-ci clean up the defecation at the openings, it is much easier than the once troubling days.

 

Q3: What was the condition at the second surgery?

Ans: The surgery at the end of this January was successfully. En-ci passed out the gas on the second day (1.26). Yet, Director Peng was worried that peristalsis was only the remote end of the intestine. Three days after the surgery (1.27), En-ci began to pass out excrement and the wound recovered well. Seven days later (2.1), the stitches were removed and she was discharged from the hospital.

Director Peng said, the first surgery was done to save her life because the doctors were not sure whether her large intestine still has functions. If it was removed, it could never be replaced. So we connected two openings to ease the gas the excrement. This surgery was the treatment after we were sure of the cause. Based on the observation of these few days, she received well and she will be like a normal like except that her excrement would be sparse and she needed to monitor her diet carefully.

Mrs. Wu said, “At the beginning, we didn’t really trust Doctor Peng, yet he spent so much time to communicate with us. When I saw all the words and diagrams he wrote down for us, I was very touched and felt confident to hand my child to him.” Yet she never expected the surgery to be so successful.TOP