People witnessed from Angel's Heart -- We are a different Angels!

BACK

We are a different Angels

"Why on earth there is the emergence of this little angel? Why this little angel has come upon us as the most amazing thing?"

Chloe, the little angel, arrived at the home of Joson and Joe, her parents in 2010. In addition to the completeness brought by her birth, Chloe also brought along a series of challenges, difficulties and learning which is hard to imagine. Through the expected gift of Chloe, God's promises make the ordinary family extraordinary.

An angel is always kind and gentle. There are always exceptions for you can sometimes find an angel who likes to kick up a row or unreasonable. Although she has a heart-warming smile, such angel will trouble your hearts.

"Before she comes to this world, we do not recognize this disease."

When Chloe diagnosed with "angelman syndrome (Angelman Syndrome)" (hereinafter referred to as “AS”), Joson and Joe have not heard of the disease. Let alone come into contact with the AS patients. Joe explained that AS is a rare genetic disease caused by section 15 chromosomes mutations. Globally it occurs at the rate of about 1:15,000.

When facing this single chance out of 15,000, Joson and Joe experienced different levels of pressure, action need and feelings, and the curtain is lift for more challenging tasks at the same time......


Deeply confused by the accidental struck

Almost all the little angels are assessed as severe developmental delay, severe to moderate levels of intellectual disabilities and equipped with very low language ability. They can only use their eyes, nods, smile or simple body movements to express themselves.

For Joson and Joe, the birth of Chloe was not psychologically unprepared, "We want to raise our daughter to become an independent adult and do not want her to become a typical “HK spoiled kid”. We want her to be happy and not to compete with the outside world for fame and fortune. We never expect our thoughts will bring to Chloe AS which is also known as "happy puppet syndrome" as she really hangs her smiling face every day with so different personality. "Joson also recalled that when Chloe was about eight to nine months’ old, she could not sit or crawl like the other toddlers and was growing more slowly compared with other children at the same age. Joe also described, "AS was unknown to us at the time. Therefore we took her to do all kinds of checks and training three to four times every week and visit five to six specialists covering ophthalmology, orthopedics, neurosurgery and conducting physical therapy and etc. Whilst the couple were busy both at work and child care, the disorder condition of Chloe gradually emerges. “We realize there was no cure for the disease until we did the gene check.”

In Hong Kong, there are probably more than fifty Angel Families. However, due to privacy and other reasons, no precedent cases are available and there are no ways for the Angel Families to share their experience. No response would be given even if you asked. Once he heard there exists an AS organization in Canada, Joson flew there to look for resources. "We were so anxious when we failed to obtain any precedent cases concerning Chloe’s sickness. We decided to visit the organization with the hope of knowing AS better and so the future development of Chloe”, Joson stated. Joson recalled with sadness the moment he first arrived at the organization, “When I first reached the door, I heard a lot of screaming voice, cry and shout. These sounds really made me uneasy, even less acceptable."

Chloe’s illness prevented her from using words or actions to express herself, but Joson managed to communicate with his daughter and know her needs through eye contact. He hopes that Chloe can through her own eyes reach the world. “When Chloe was two years old, we would try to take her to travel whenever time allowed. We want her to see the world instead of staying at home. We also took her to the streets for skating, skiing." Joe, who is sitting next to Joson, turned her head to grin and add: "Although it was difficult to put on the skating or skiing shoes for Chloe as she would just keep kicking her feet, the process was happy." “Everything is worth it,” Joson said, "we chose to take a positive attitude to learn, understand and face it. Therefore, when we know the future development of Chloe, we will use our very best to help her to make a breakthrough in her life. "


God is working in adversity

During her development process, Chloe has poor counterweight, and sometimes even fails to walk with big mood swings and sleeping disorders. Most troubled Joe and Joson is epilepsy. And 80 percent of the little angels will also suffer from different types of epilepsy which will occur at any time. It will be life-threatening!

Facing adversity, some people will be anxious all day long, and even keep complaining. Can they have the problem solved? Joe said, "I am so sad every day and will cry in my office. I will be cranky sometimes and even lose myself, in particular, when I know nothing can cure Chloe. " Joson, the father, not only bears responsibility to every single family decision, but shoulder most of the difficult times, “not only because she has a variety of symptoms, I need to face tremendous pressure during the time when I am looking after Chloe, both physically and mentally. It is really beyond what I can bear. At that time, we have no ability to control Chloe in terms of psychological quality and knowledge. "

However, God started His works at that particular moment. “But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’” (2 Corinthians 12:9)


Regain confidence in life

Human happiness is not dependent on the good things happened in life, but on an open heart to accept all good and bad things happened to oneself. At first, Joe did not have an open heart, "at the beginning I am not willing to share or explain Chloe’s illness, but when she’s growing older, I have plucked up my courage to face the truth and try to answer people's questions.” Such first step was triggered by her accepting an invitation made by Joson’s sister. “I do not go to church. But when I start going to the church at the request of Joson’s sister, I also start to realize that I have experienced a lot of grace in my life in the past two years. Looking back, I know God is with me at all times"

Joe was baptized at the age of around 10 and was studied in a Christian school. Even though she was given ample opportunity to know God, faith has not taken root in her life but was just buried deep inside her heart, "I return to the church. I often cry and am often touched because I know I am really lost. "

Life always has its own fear. Such fear is usually brought by losing confidence in oneself. Such fear represents the dark side in life and may also be harmful. We need courage to overcome such fear. Since knowing each other on a friend’s wedding, Joson and Joe experienced tremendous changes in their family, daily chores and career until they got married. In Joson’s eyes, the birth of Chloe is a special gift. Through Chloe, Joson came to know and understand his own shortcomings which was then converted into his faith to follow God and to count on Him to lead every single step in life. "Joe and I have different ideas on anything. I had always disappointed others, always did or said something that would hurt my family, friends. Now I am learning to let go my self-centreness. "

Joson added: "to a certain extent, I have my own set of ideas and opinions. I always wanted to do things differently to make a personal breakthrough. Since the birth of Chloe, people started accepting me as now I really need to apply alternate ideas, ways and methods to look after Chloe. An ordinary person with ordinary thoughts will never know how to take care of Chloe. When we are suffering, confused, not knowing how to take care of her, I think God has given me confidence to overcome our anxiety and to use my own ways to take care of Chloe, just because she is special. I am no longer arrogant and my self-esteem is also suppressed"


Special gift

"She is a gift!"

These words when spoken to Joe by her brothers and sisters did not encourage her, but to sadden her heart. Joe thought, “How dare on earth you will say these words? Do you understand how sad I am and how hard I have worked to look after my daughter? "

There were times, usually at midnight, when cranky ideas would come to Joe’s mind, "I have tried to escape or to commit suicide, but these are simply wrong." She continued, "I remember a friend sent me a SMS regarding some “prophecies” concerning one’s past and present. I were frightened whilst I were reading such message. But I still kept reading it as the context was so attractive. Some time later, I heard a voice which said “I am the one true God. What do you want me to assure you? Do not worry. I will care for you." Such voice brought instant peace to Joe’s mind and from that particular moment, Joe decided to surrender herself to God wholly.

When we are facing temptations or irresistible tests, we do not know that God is there. “So he said to me, ‘This is the word of the LORD to Zerubbabel: ‘Not by might nor by power, but by my Spirit,’ says the LORD Almighty.” (Zechariah 4:6)

Today, Joe recalled with a grateful heart: "This is God’s will for Him to give Chloe the angel to me. There is always a purpose behind God’s will. Because Chloe is His possession, I am asked to take good care of her on behalf of God.”

There are no hard and fast rules as to how to nurture Chloe. Joson said that as long as he has used all his best efforts to take care of Chloe with love, "you do not complain. You do not regret it. Whether the outcome or reaction is good or bad, I would have accepted it. I love Chloe so much that I feel grateful in the course of taking care of her and will cherish every single moment with her. I'm grateful to have this opportunity to take care of her. "


Let’s hug and walk forward

A child's smile is the driving force for parents. With the birth of Cherry, Chloe’s sister, it has turned a new page for the family. Although it takes a lot of time, effort and strength to take care of both Chloe and Cherry, the Angel Family is filled with grace.

When Joson recalled the moment he searched for the information about AS on the English websites or social platform, the information and content located are not easy to understand. At that moment Joson started thinking of the needs of other Angel Families and proposed to a pastor his idea of setting up the Hong Kong Angelman Syndrome Foundation. "I remember the day I went to meet the pastor for advice. Instead of asking me to give it up, the pastor encouraged me to pursue my idea with confidence and trust and even agreed to be the advisory pastor of the foundation.”

Jesus did not pick great men with high ability to be his disciples. Instead he had chosen fishermen and tax collector. With the support from the pastor, Joson is confident that he can help other little angels. “But the Lord said to Samuel, ‘Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.’”(2 Samuel 16:7)
The Foundation has not located any other Angel Family at the beginning. But now all Angel families are able to meet and gather together and support each other. "We are confident as to our future! Now or in the future days, we will look for more Chinese information about AS to help the public to understand this disease. We just want to let the public know that we are here to help the little angels instead of giving them up." Joson also stated, "I want to tell you that AS does not exclude the little angels from the society. These little angels are also able to be integrated into and form part of our community."

There is always a quiet corner deeply rooted in each human’s heart (yet forgotten) which stays far away from the world of noise and turbidity, strife and evil. A verse was written in the bible – “Above all else, guard your heart, for everything you do flows from it.”(Proverbs 4:23) Let’s be reminded to use our most sincere hearts to overcome coldness in this broken world. Because God cares for us, He is always with us.

Angel's Heart | 01-04-2016

READ DETAILS & DOWNLOAD PDF