Grace is enough for me
【Family with special children】1
Oral narration/Ye Qingwen
"Cerebral palsy cannot be cured in life. Your child will never get better in her life. There is no need to bring her here again!" The doctor's cruel and ruthless words were like a knife piercing my heart, and then pushing me in. Bottomless abyss.
rescue yien
In 1974, Yi En was born in Brazil. The twin sisters died of acute pneumonia on the fifth day. I cried and begged God not to take both children away. I prayed to God to keep the premature baby Yi En. of.
Why do you get cerebral palsy? Thirty years ago, Brazil had very little medical knowledge in this field. My husband, Zhan Chenxi, and I were young and inexperienced. We just wanted to cure our daughter’s disease as soon as possible. As long as there was a glimmer of hope, no matter what the cost, we would not hesitate. Run away. I tried Qigong, traditional Chinese medicine, and physical therapy, but every time I went there, I spent half a month's living expenses. We really couldn't afford the expensive medical expenses, so we had to put an end to our search for medical treatment for the time being.
Later I learned that patients with cerebral palsy must receive intensive physical therapy in the first two to three years, preferably within one year of age, to have a greater chance of recovery. But at that time, our conditions were poor in all aspects and we failed to seize the best time. As a result, she was severely disabled. I felt very short-changed.
Yi En often suffered from acute bronchitis when she was a child, and her health gradually improved until she was seven or eight years old. After many years of exploration and a long and arduous journey, we as a couple finally learned that the cause of Yi En’s illness was premature birth and an underdeveloped liver, which could not rule out the accumulation of jaundice invading the cerebellum, causing her cerebral palsy. The cerebellum is responsible for the movement of the whole body. Once the cerebellum is injured and the nerves are paralyzed, the limbs will no longer obey their orders.
Yi En is 30 years old. He cannot speak or move his hands. However, his brain is not injured. Only some of his memory is damaged. He cannot remember English pinyin. In other respects, his memory is the same as that of ordinary people.
▲For ordinary people, eating, bathing, sleeping, going to the toilet, walking and even spitting are easy, but for Yi En, these are big things. It is not easy for Yi En to live to be thirty years old today. Her many wonderful experiences have enhanced and inspired the confidence of those around her.
Special Education Benefits in the United States
When Yi En was nine years old, our family immigrated to the United States from Chile. Before enrolling, she must take a test to evaluate her learning ability. If she cannot learn, she will be assigned to a class for severe intellectual and physical disabilities. She miraculously passed that exam. She had only been in the United States for three months. She had never heard or studied English before, but she could get such good results. I can only be grateful. It was God's mercy and help.
Yi En's eyes, face, and body are full of expressions, and she can speak. In fact, she can understand everything, but her mouth can't speak. I negotiated with the medical insurance company for more than half a year to obtain a special small computer for Yi En. I could pre-enter the words according to her needs. Yi En touched a thin button with her left knee to control the message she wanted to convey. .
According to the California Welfare Law, generally disabled children must pass a test before the age of 18. If they meet the conditions, they will join the Disability Service Center (Regional Center). After the age of 22, the government will provide special job opportunities or professional training. If you are sick and need to see a doctor or live in a rented house, the government will pay for it. In other words, people with disabilities after the age of 22 are basically taken care of by the government. But Yi En’s situation is quite special. Our couple made a special case for her and asked the government for subsidies to hire a caregiver to take care of her.
Taking care of Yi En is not easy. The caregiver we hired is named Posilla. She is very patient and has a gentle personality. Over the past seven years, she and Yi En have established a good tacit understanding. Whenever Yi En expresses her emotions, she will Not bad at all, I know what Yi En means.
Posila accompanies Yi En from 9 am to 3 pm every day, reading the Bible, newspapers, and books to her; and helps Yi En do full-body exercises for twenty minutes. Many times, Bosilla would take Yi En out to look around and shop around. When he saw something he liked, Yi En would stamp his feet, and Bo Silla would know to stop the wheelchair and take a closer look!
Disability benefits in California are actually quite good. Over the years, Yi En has participated in almost every suitable course in the school district. For example, take a clay class with the elderly, or audit a community college. Going to the botanical garden to enjoy flowers and birds is also one of her favorite activities. She did not reduce her contact with the outside world because of her physical disability. In fact, she has been to more places than I have!
Accidental car accident, bolt from the blue
In 1992, I experienced the greatest pain in my life. During the first heavy rain of winter, my van tumbled off the highway onto the road one level below. Our only eight-year-old son, Yoshimitsu, was thrown out of the car because he was not wearing a seat belt and unfortunately died on the spot. This catastrophe of eternal farewell is really a bolt from the blue for our family!
Yi En was also sitting in a wheelchair in the middle of the car. When the car rolled, she was thrown out of the wheelchair. Miraculously, she landed safely on a bag of clothes in the car. It was a big miracle. How come the clothes in the back of the car end up in the front? How did Yi En sit on it? I believe it is no coincidence, this matter is in God's hands.
In an accidental car accident, I lost my only son. It felt like a piece of my heart had been ripped out and could not be healed. The heavy hurt in my heart just closed my mouth. If I accidentally touch it, I will slowly bleed again. I think only parents who have lost a child can understand this kind of pain.
intercessory angel
After the car accident, our whole family's mentality changed and we cherished the time together more. A few years after his son passed away, Yi En often told us excitedly that he went to heaven again last night and how it was... We can't ask clearly about the things in the sky because she expresses them through body language, so we can only guess. Every time an angel comes and her brother comes to see her or takes her to heaven, she will always be very excited and babbling to share with us the next morning. The special experience of Yi En caused our whole family to shift the focus of our lives to heaven and no longer think about things on earth.
When Yi En was fifteen years old, he underwent a major spinal surgery. For people with cerebral palsy, the brain will send out wrong signals, causing the muscles to develop unbalancedly and causing the spine to become S-shaped. As she got older, Yi En's back became more and more crooked. Without surgery, her entire body would twist together. One day she couldn't even sit.
The doctor made two large incisions on her back and installed two steel posts close to her spine. After the operation, the doctor prescribed analgesics for her. This analgesic was addictive, and I asked to stop taking it three days later. After stopping taking the medicine, she never groaned, and she would moan if she was in pain, but until the wound healed, she never did! This is really amazing, I know this is God's special favor to this special child!
Yi En’s greatest skill is to pray for others. I have taken her to church since she was born. I often tell her that you can pray about everything and the Lord Jesus will help you. Her heel had ulcerated and pus, and it had not healed for a long time. Yi En said to the Lord Jesus that she was in great pain and asked Him to heal her, and she was cured. Although she has severe physical disabilities, she has personally experienced God’s healing and has become our church’s intercessor angel. Brothers and sisters will come to her for help in praying for anything. She is dedicated to interceding for others. Her many wonderful experiences have enhanced and inspired the faith of those around her. This is really a beautiful thing!
All joy, anger, sorrow and joy
It is not easy to think that Yi En can live to be thirty years old today! For ordinary people, eating, bathing, sleeping, going to the toilet, walking and even spitting are easy, but for Yi En, it is a big deal. Yi En couldn't control how to exert effort or relax. Bathing her and changing diapers every day was like a war, which consumed a lot of energy. In addition to being unable to move her limbs, her forehead is deeply sunken, her teeth are misaligned, and she cannot chew, so food must be minced first. She also has problems with swallowing. She often chokes and coughs until her face turns black. Therefore, if she is not careful when feeding her, her life may be in danger.
There are times when Yi En is sad. Sometimes I say harsh words and she can't bear it, so she cries so sadly. Sometimes she would cry silently when she thought about something. Just like an ordinary adult, she also had her own needs, thoughts, and emotions.
Yi En has a problem, which is actually a problem for us as a couple. When she was in a special class, there was an American boy in the class who liked her very much. Sometimes the boy would come to the house and they would watch TV together. The boy would sit next to her and accompany her, which made her very happy. I don’t think anything will work out between the two of them, because she needs someone to take care of her even the most basic needs of life, and it is impossible for her to live a married life. I told her the truth, and she was very sad to hear it. She still hasn't recovered her balance.
Although some disability institutions in the United States are doing a good job, I still can't bear to send her out. Maybe one day I can't move anymore and I have no choice but to send her out to live with other disabled people.
Don’t dare to ask again: “Why?”
I have traveled through the valley of the shadow of death and experienced many vicissitudes in my life. The heavy blow of my son's car accident seemed to have given us a crash course in spiritual maturity. Going through these storms, I have a deeper understanding of human limitations and fragility. My husband underwent heart surgery in 1990, and I could lose him at any time, so I cherish every day and live it as if it were my last.
In the past, we paid a lot for not knowing how to obey the Lord. God has taught us a lot of lessons through His righteousness and grace. No matter what happens in the future, I dare not ask God again: "Why?" I only want to say, according to Your will Will be done. I know that my Lord is not wrong. He has no intention of bringing disaster, only the intention of granting peace. Everything He does is for our benefit.
I thank the Lord. He has given me a loving and patient husband. Chen Xi often says, "This is what God has specially given to us. It is my privilege to be able to serve Yi En!" After thirty years of marriage, Because of righteousness and grace, the edges of our relationship have been smoothed, and because of righteousness and grace, the hearts of our family of five are tightly connected.
Raising a child with a disability is a difficult and lonely road, but once you connect with the source of true love—God, who created all things, love will flow out and your life will gain momentum, full of warmth and hope. I would like to encourage more parents with disabled children to closely follow and rely on the Lord Jesus. He will give you grace and power to lead you through this difficult life, and make the paths you walk drip with fat.
Although Yi En is severely disabled physically, she is completely free spiritually. Thank you Yi En for allowing me to experience miracles that ordinary people cannot experience. Thank God for giving me this extraordinary angel, Yi En! You are a blessing from God!
(Ye Qingwen provides valuable information based on past experience: how to make a will to protect the lives of disabled children after their parents die; apply for various benefits; join the California Disability Services Center and other valuable information. The center has a summary, you are welcome to request it. Yi En’s story is also Collected in the book "Angels in My Home" published by Taipei Cosmic Light).
postscript
In July 2005, Yi En was hospitalized for four days in the emergency department. She underwent a tracheotomy, a hole was made in the throat cavity, and a tube was inserted directly to the top of the lungs. In order to solve the problem of her respiratory tract obstruction causing the chest cavity to accumulate carbon dioxide crisis. This time she was in danger and survived, thanks to the prayers of brothers and sisters in the church. The grace of the Lord Jesus is indeed sufficient for us, glory be to the name of the Lord. There is no need to guess about God’s good will, just obey and rest in the Lord.