Monday, June 25, 2018

Sofie: The Miraculous Transformation of a Child With Down Syndrome

Copyright © Kim Roberts

Life is what you make of it. Miracle of life does not just happen—it takes hope, inspiration, motivation, and hard work to overcome challenges and to perform a miraculous transformation of a child’s life. Happiness is a state of mind. There is no better happiness than one that comes from a strong and determined heart to win against obstacles and conquer the impossible.

I had a surgery on June 11, 2018, two weeks ago. Due to my heart’s conditions, my recovery process is slow and tedious. However, for me, being well means nothing unless I can be productive. It is in productivity, I find the right stimulation to get well and lift my spirit. With my surgeon’s approval, I went back to work as soon as I could for 1 or 2 hours per day. The joy of using the gift I have to help others makes me strong enough to fight against my still persistent discomfort. My biggest pleasure among various assignments I have is seeing my client Sofie, a child born with Down syndrome.
Sofie and me on June 20, 2018
On Wednesday, June 20, the moment I arrived, Sofie gave me a “high five,” blew me a kiss, and winked at me repeatedly. She is 2 ½ years old and she can stand tall, walk straight, with head held high. She showed off by saying to me in a clear voice, “One, two, free” while counting her fingers. Her Dad, Ton, said she just learned new vocabulary from TV shows. As I clapped my hands, she did some sign language to indicate she could do more. Later she went to the radio, turned on the music and began to shake her body to the rhythm. She demonstrated perfect physical conditions of a normal child who has the ability to act, react, and interact. And her capability in climbing and walking through obstacles was amazing. That day, she could walk through a raised ladder on the floor with her head up instead of resting her chin on her chest as she did two months earlier. With my language ability to communicate with her parents and my background in social work, namely, Protective Services for Children, I could see the improvement although I was not hired to analyze and do assessments.
A rose from the public Rose Garden taken 6/25/18
It was a treat to see Sofie after my surgery. I still remember January 2016 when I was hired by The Early Learning Institute to be in a team working along with a physical therapist and an early learning therapist. The goal, as stated by the nicest Director I’d ever met, was making a difference in the way a Down syndrome baby develops. Her parents, who arrived in the U.S. in 2015 with other 3 children, had lived in Japan for over ten years. They treated me as a Social Worker, if not a friend, as they needed so much information and referrals for practically everything. And they received so much mail that they, including two teenaged daughters, could not read as they had been in Japan so long. Being born as a baby with Down syndrome, Sofie received an immediate open-heart surgery at UCSF hospital to repair a hole in her heart vale. She could barely move, left alone rolling over. For a long time, she spread her legs as a T and had awkward neck bending back at a 45 degree. Her frequent impassive blank looks, as if she wasn’t there, concerned her parents most. Her mouth always opened with an oversized tongue sticking out as she drooled heavily. It was a difficult case of child development and a typical case of a child with Down syndrome.
Sofie on her rocking horse
I had no intention of continuing my work on her case because of the driving distance but I did not have a heart to leave her parents. They showed so much love and concerns for Sofie that they began to feel desperate. Other therapists began leaving and new ones were coming in every few weeks. Sofie’s parents were attached to me as I gave them a sense of consistency and trust. My contract called for 1 ½ to 2 hours per week and Sofie’s parents literally had a ton of questions for me each week I was there.

“Will her head stop bending backward?” “Will her tongue stay that large?” “Will her drooling ever stop?” “Will she exhibit her blank looks forever?” “Will her legs ever be kept closed together as a normal baby?” “Will she…?” “Will her…” Those are questions they frequently had. I began to learn from the therapists and find the answers for them. But I always reminded them that love would change everything if only they could believe in the magic of love. As time went by, the baby grew stronger and could be taken outside the home. Then her parents had to deal with different concerns. Coming from Vietnam where handicaps and disables are ostracized and ridiculed, their idiotic Vietnamese neighbors treated Sofie as an outcast with her exhibition of Down syndrome. I worked delicately to teach Sofia’s parents love, acceptance, and courage to ignore the snickering. In time, they reluctantly took Sofie to the mall. After awhile, they no longer felt sensitive toward the way others reacted to Sofie.

It has been 2 ½ years. And Sofie is 2 ½ years old. The progress Sofie has made, with her parents’ and siblings’ participation and aid, is slow but incredibly impressive. She has been physically and mentally transformed month by month. Gradually, I became attached to Sofie. Sofie fascinated me more than any other client I have had. Every week, I couldn’t wait to see her and find out what else is new with her. The Director, who visited her every six months, has been pleased with her progress and the other two therapists also acknowledged the positive changes. Two months ago Sofie still showed a lack of focus and an inability to coordinate her faculty. Then suddenly she exhibited a marvelous sense of wonder as everything seemed new and fascinating to her. She would not stop saying, “wow,” “wow,” or asking, “what?” Sofie could now sit for more than 20 minutes to play party as she would pour drinks for herself and another and make a toast before drinking. Magically, she seems to have turned into a normal child with a normal physique and intelligence. And she even shows so much wit and charm as she would pretend to fall on the floor only to make everyone laugh.
Ballena Isle Rose Garden taken 6/25/18
On Friday, I saw a play, “The Miracle Worker,” the story of Annie Sullivan who transformed Helen Keller, a blind-deaf incorrigible child into a famous lady of letters. I was in tears. What a joy and a blessing to work with disable children and witness such transformation. Today, I witnessed another beautiful transformation as I went by the little mini-rose garden in Ballena Bay Isle. In a previous blog, in “Home Is Where The Heart Is,” I mentioned that in the late 1980s, Beau Rivage Restaurant, situating a long block from my house, was on fire and was destroyed. From the ashes, some volunteers planted a few rose bushes. Over time, the area was transformed into a beautiful rose garden. Now with more donations of nice chairs and tables, the garden has become a lovely mini-park for the public to enjoy. What a change! It happened because some people wanted to do something to fix a bad situation. I often say, “Time changes everything.” However, there’s no “Time” and Time does not bring about changes, people do. People make the days, months, and years to be accounted for by performing deeds.

I am blessed to have a freelance job that allows me to do what I love to do. The Director of Early Learning Institute has such a vision in directing this program. Different therapists Sofie has had also have done good jobs in supporting and training her. This is not an official account of Sofie’s medical or progress reports. This is what I do, what I observe, and how devoted I am to my work. My work makes me happy. Still, there is much more that goes behind the scene. Sofie has shown her unique character in her determination to explore, learn, and be herself. That would not have happened without her parents’ tremendous love and effort in molding, encouraging, and supporting her every step of the way. Her progress has proven that humans can perform miracles in a child’s development, wellbeing, and happiness. Perhaps Sofie’s transformation once again reassures me that children are precious and nothing is impossible.
The Ballena Isle Rose Garden

END.   Copyright © Kim Roberts

Sunday, June 10, 2018

Remembering My Father: A Philosophical Gardener

© Kim Roberts

I was going to write something about my father on Father’s Day, June 17. But today, June 10, 2018, I thought, “Why wait? What if tomorrow will never come? What if my surgery will go wrong and I won't be here the day after Monday or other days?” So I am writing although anxiety does not help with clarity in writing.

Who was he? A tall, handsome, reserved, and intelligent young man, he married my mother in an arranged marriage at the age of 17, during his last year in high school. Metaphorically, in the perplexity of life among others yet not with them, a private person like him lives life just as a sailor of a tiny boat drifting in a dark, mysterious, and vast ocean. That sailor has an existence with or without recognition by others. Who would care about such a man—an unknown topiary horticulturalist who was no one to others although he was someone dear and special to me? And there was something about him—a ray of sunshine in a delicate human soul that illuminates and flickers a signal enough for others to notice but not enough to hold their attention—except one observer who saw it and held it dear in her heart.
Our former garden with Mother's Grave
My father passed away in 1965 on an autumn day when I turned 15 and he was 52. I was glad that he no longer suffered the excruciating pain generated by a cancer that tortured him day by day for near two years. My cousin De Ngo also told us about the days they fought together and the tortures he took that made my blood curdle. The impact of beating and jail made his body even more fragile. When I was old enough to inquire further into Father’s life, the VC had brutally executed cousin De, a CI at the time. De was selling out information about the Viet Minh for cash so the VC terminated him just like other informants.

When you truly love someone, everything you shared with him became memories but there are certain memories about Father that stand out more than others. Interestingly, what stood out most was a book he read to me when I was perhaps 3 or 4. It was a translation of a booklet about Abraham Lincoln. Naturally, I only recognized the drawings and the one I remember most was Lincoln as a young boy walking home with his fingers hooked onto a string that tied around a stack of books. And Dad said, not at that time but a year later when I asked him why Lincoln carried the books that way. He said, “That’s how hard it was for him to get books. Why books? The value of a book is not on the cover or in the stories that make you laugh or cry.” “Then what is?” I asked. He answered, “It only means something if you read critically, analyze the reading, think beyond, imagine all the unseen wonders, and apply that to the daily activities then ask the question if that is all there is or perhaps there’s more. Because, then and only then you have made your independent choices and let your mind grow.”

We used three languages at home. Mom and Dad read French and Grandpa was a scholar in Nom, an ancient Vietnamese language using Chinese characters. But I was learning in Quoc Ngu, a Roman alphabet based Vietnamese.

Father was known as a humbled, gentled, and private topiary horticulturalist. But there was a hidden part of him that not many people would know—the strength and perseverance of a soldier. He chatted with me often whenever we played chess around the time I was 6 or 7, “The worst fighting is not all about attacking, killing, and hurting your enemy. The hardest fight is being yourself and resisting the temptation of giving up, surrendering, and being like everyone else.”

Mother always complained that he never taught me anything. I disagreed. When I was a child whenever I wanted to stay up all night to finish a book or to do drawing, he said it was okay. Mom insisted that I must learn spelling and grammatical structure before reading but Dad said I was independent, creative, and original and that was nothing wrong with me. When I wanted to run races, swim in the canal, and climb trees like a boy, he again, said that was not a problem. When the boy across the canal serenaded me and sent me letters, Mother was horrified but he smiled that I was attractive enough to have boys following me everywhere even I was only 12. His rebuttal of Mom’s criticism was, “And you were married at 15.” He taught me the value of freedom, independent spirit, and love.
I painted this oil portrait of him after his death
I have written about Father’s philosophy behind his gardening passion. And I will quote from my Blog June 2, 2017: “Then in 1975, as I was reading my favorite book, "Zen and the Art of Motorcycle Maintenance" for my graduate works, it dawned on me the philosophy behind my father's words about gardening. It was more than digging dirt, planting trees, harvesting fruit, vegetable, and flowers, and turning it into a commercial business. Gardening is an understanding of system analysis and a mechanics of planting, monitoring, keeping the plants grow and produce. Gardening is a process and a tool for learning, innovation, inspiration, creativity, and pleasure. Gardening brings concentration and inner peace. It is also a feeling, a feeling about the delicate, totally integrated nurturing process and connection with the tree, with Father, and with my environment. Such invisible connection and our intangible love are so delicate, precious, and everlasting.”

In one of my early blogs I wrote about his most favorite flower in “The Queen of the Night Flower,” October 1, 2015, and I now quote: “…As the exquisite flowers slowly opened, they released a heady, aromatic scent.  The thick, waxy white petals, pure and untouched, first pulled away from the body of each bud one by one, like little wings, until they formed a circle to cradle the inner layers.  Finally, the stamens and pistil emerged dusted with pollen in delicate shades of beige and lavender.  Within half an hour, as soon as each flower opened wide enough to reach the maximum diameter, approximately 6 to 7 inches, flowers began to close.  All the petals slowly drooped, shielding the stamens and pistil from view, seemingly in sorrow. That was an enigmatic dream-like scene.

The men quietly reflected a deep melancholy and sense of loss while simply staring at the plant in a china pot in the middle of the table.  In the soft flickering kerosene light the rugged men revealed much of what was within their hearts.  Although I was only seven years old and I didn’t know exactly why, I sensed I was witnessing something very deep in each one’s life… I realize that it’s not only the beauty that makes the Queen of the Night flowers special. It’s how this flower could invoke feelings among those who ventured into the night, patiently waited, and then observed its brief, elegant, and mysterious performance. The Queen of the Night flowers had turned ordinary men into philosophers at heart…. That is the beauty of the mind. That is the magic that my late father and his friends discovered and enjoyed. That is the power of the spirit--so free that it can go beyond the daily routine into a realm that many don’t bother to enter.”
In our back garden
For over forty years, I have followed my father’s footsteps and always keep a small garden with a variety of plants and flowers for my enjoyment. Years after father’s death, I met and fell in love with a man who was not at all my age or a typical boy I was expected to date. I later married him. But I only knew he was the right man during the days we both had fun buying a large plot of land and tried to recreate the “Secret Garden.” Working in the garden that we loved passionately, there were times he would suddenly stopped and appeared mesmerized by some insignificant flowers left on puny stalks as he tenderly raised them up, I saw the image of my father, the passionate gardener, again. I knew then what Father meant when he said, “When you discover deep in the heart of a man, who looks different in the outside but inside, he’s a gardener waiting to be himself, then he’s your man.”

P.S. Yesterday, I wrote this piece as if I were chased by a ghost. I just now edited…

END. © Kim Roberts