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February 28, 2015

Down Syndrome: Blessing or Burden?

Note: This is an excerpt from my book “Embracing God’s Purpose for my Special Child”

Years ago, children with special needs were hardly seen in public places. Even now, we don’t see them in TV commercials (except last year at a McDonald’s commercial). Perhaps this is because some parents feel they might be judged a failure because their child is “disabled”. Some parents may also be ashamed of their child’s looks or embarrassed by their behavior. Because of lack of education about Down Syndrome, some people see our children as weird or freaks. To this day, both adults and children stare at my daughter when I bring her to the mall, to the park, or any public place. I was driving one day along Julia Vargas Avenue in Pasig City and when we stopped at a traffic light, a young girl came up to the window on the passenger side, where Clarissa was seated, to beg for money. When she saw my daughter, she called another young girl over and brought her to look at my daughter. They stared at Clarissa the whole time we were waiting for the light to turn green.

iSpeak, Malu Tiongson-Ortiz, book cover, Feb28This is one of the reasons I wrote a book. I wanted to help make people more aware about Down Syndrome, and to help them understand that children with special needs have feelings too.

At first, I would get upset when people stared at my daughter. I realize that it is because they do not understand. People may not know much about Down Syndrome unless they have personal contact with them. And without exposure, they don’t know how to react. I’m praying my book will serve as a tool for family members and their friends to help spread awareness and understanding.

When Clarisse was born in 1987, I didn’t know how to tell my family and friends about her. Pride was getting in the way for I didn’t want them to feel sorry for me. Or worse, would I be blamed for her condition? Another problem was that if they would ask me what Down Syndrome was, I didn’t know what to say back then. Some of the widely held beliefs mentioned earlier led to some family members feeling that I was at least partly to blame. After all, I was taking birth-control pills when my daughter was conceived. Some concluded that her medical condition was the result of my heartaches from marital problems. Others blamed my husband.

It was on a hot day in April of 1987 when my daughter first arrived in Manila. At the Manila International Airport, I saw a young tanned boy in a striped orange and blue T-shirt waving at me and calling me “Mommy!”. Carlo, my eldest son, was so excited to see me again, and to greet his small sister for the first time. Claro was behind my son and was eager to embrace his baby girl. Because Clarisse was so fragile, Claro refused to carry her. But to my surprise, they showed no disappointment at all. They instantly loved and adored her.

At that time, my parents didn’t know we were coming home. When I tried to recall why I hadn’t told them, I realized it was because I was not ready to talk about Down Syndrome, or to explain why Clarissa was in that condition. I felt that I needed to process my thoughts and try to get more information about Down syndrome so I would know how to answer their questions. And I was still partly in denial.

“It is not your fault that your child was born with Down syndrome.” This is the first thing we say to new parents with Down Syndrome children in the Early Intervention Program of Down Syndrome Association of the Philippines, Inc. (DSAPI). Second, “No one is to blame. No one should feel guilty or even be ashamed of their special child. Remember that you are not alone. Many other parents have shared your shock, disappointment and bewilderment.”

(John 9:3 states that people born with a disability is not the fault of the person or his parents.  This happened so that the mighty works of God may be displayed in their lives)

iSpeak, Malu Tiongson-Ortiz, Clarissa painting, Feb28

I thank the Lord for opening my mind and heart to understand that Clarissa was born for a special reason. Just a few weeks after she was born, I believed I had totally accepted my child’s condition. In fact, it challenged me to make a difference in the life of my daughter and to help other parents see their special child as a blessing.

Clarissa is also a lifetime scholar of Silab Artreach by Teacher Nick Calma

Clarissa is also a lifetime scholar of Silab Artreach by Teacher Nick Calma

Ten months after Clarissa was born, I guested in a TV show with Senator Loren Legarda as the host where I publicly announced that I have a child with Down Syndrome. It was liberating! I received a lot of calls that day from friends and relatives telling me that they were sorry to hear about my child. It was not the response that I might have chosen. Nevertheless, their concern for my child was very much appreciated.

iSpeak, Malu Tiongson-Ortiz, with Clarissa at the park, Feb28

Not long after, in fact a year after my daughter’s birth, I decided to write an open letter to my daughter to express the joy I felt in having her. I wrote with the intention of reaching out to other parents with special children, and it was published in the “Panorama Magazine” of The Manila Bulletin. Since then, the Lord has given me contact with other parents in need of encouragement and, as God has continued to teach me through Clarissa, I have been able to share with them the work that God is doing in my life through my daughter.

iSpeak, Malu Tiongson-Ortiz, with Clarissa at the park2, Feb28

Jane, Gelo’s Mom, was the first parent I met as a result of my letter being published. Jane was depressed, struggling with the fact that her son had a congenital heart condition and that he was due for an open heart surgery. I felt her pain and fear of losing her child. My cousin Ellyn, who took care of me when I gave birth to Clarissa in San Francisco, finally opened up to me that her son Adrian (born after Clarissa) had Down syndrome. And I met Mrs. Nenita Davadilla, mother of Ninette who is also a child with Down syndrome. Mrs. Davadilla taught me the basic things I needed to learn in caring for Clarissa. In her special school, I met Emy, mother of John. Emy and I have been special friends since then. When we have questions or problems about our children, we rely on each other. Through this circle of contacts I came to meet the founding members of DSAPI, with whom I am proud to work to this day.

iSpeak, Malu Tiongson-Ortiz, card made by Clarissa and mommy Malu, Feb28

With hindsight, I can see how it was God who arranged that I should get to know my friend, and now sister in Christ, Betty, mother of Kayla, whom I also met in DSAPI. It was Betty who invited me to the Purpose Driven Life study group, through which I came to understand that I needed to know God in a more personal and intimate way.

Looking back, I can remember how it suddenly dawned on me that surely the Lord has called me to be the Mom of Clarisse for a special mission. But if this mission was to be accomplished, a joint mission with Clarisse, I first had to accept my child and be able to face what the world has to say about her. Through my daughter’s life, the Lord continues to give me opportunities to share God’s purpose for my child.

iSpeak, Malu Tiongson-Ortiz, Clarissa, Feb28

I am also able to share with other parents that it is a blessing to have a special needs child, and that there is nothing to be ashamed of. It is my heart’s desire that you too will be able to come to terms with your child’s condition, trusting God with joy in your heart, so that you may be able to help provide the proper help and support your child needs, and also be an encourager to other parents. I am praying as you read these words, dear parents, that you will know your lives to be enriched by God’s precious gift of life to you.

Acceptance is the first step

iSpeak, Malu Tiongson-Ortiz, Malu and Clarissa, Feb28Acceptance is difficult to concisely define. In its most basic form, acceptance is achieved when an individual overcomes the feelings of profound grief, shock, anger, and denial over a loss or personal tragedy, and is able to view the event and its effects within the greater context of their entire existence. All parenting involves some degree of accepting situations and feelings not necessarily in line with earlier hopes and expectations. For the parents of a child with disability, these compromises are significantly magnified.

I remember Jessica, the social worker who visited me every day at the hospital in San Francisco. She comforted me with the story of her niece with Down Syndrome and told me how she grew up to manage so well. I regret that I did not make the most of my time with her. Jessica patiently demonstrated how I should breastfeed Clarissa. She was so kind.

But on her last visit, she told me that I should try taking care of Clarissa for six months and that if it didn’t work out, I had the option of placing her in an institution. “What? Send my baby girl to an institution? No way!” I couldn’t believe what I was hearing. For me this was never an option. I felt so sorry for my baby. I could never abandon her. The moment I held her in my arms, I instantly felt attached to my daughter. There was already a special bond between us.

I don’t pretend to fully understand, but I do believe God gave us our special needs child for a special task. Just as Moses was chosen to deliver the Israelites out of Egypt, God specifically chooses us for the different tasks He puts before us. In my case, I believe He has given me tasks to do for our child. Certainly, we feel inadequate, just as Moses did. When Moses reached the end of the road, his only option was to have faith that God would save them. God wanted Moses to believe first before He displayed His miracles. In obedience to God’s command, Moses stepped toward the sea and placed his staff in the water . . . and that’s when the miracle happened! The sea parted and the Israelites were able to cross on dry ground until they safely reached land on the other side. When Moses obeyed, God displayed His marvelous works through him. God will do the same, and work in our lives and in the lives of our special needs children, if we believe Him, obey, and accept His task for us.

What does God say about our God-given mission? In the Bible, we find an inspiring story about Jonah. He was instructed by the Lord to go to Nineveh to preach against the city, for the people had become wicked. Jonah ran away from God and headed in another direction. He rode a ship to flee from the Lord, but God sent a great wind and such a violent storm arose that the ship threatened to break up. Jonah confessed to the sailors that he was the cause of all the trouble, and the sailors threw him overboard. As a result, the raging sea grew calm. Jonah had to sacrifice his life to save the sailors’ lives (Jonah 1:1–15).

iSpeak, Malu Tiongson-Ortiz, teaching Clarissa, Feb28

Fleeing from our God-given task can bring us trouble also. When God calls us to be a parent of a special needs child, He wants us to respond. God wants us to grow as we learn to make sacrifices for the life of our special needs child. He grieves when, perhaps out of fear, a decision is made to abort the life of an unborn child. Besides, abortion in the Philippines is a major crime and is punishable by law. Let it not be an option.

In the story of Jonah, the Lord provided a great fish that would swallow Jonah, and he was inside the fish three days and three nights, praying. He prayed to God and God answered him. Jonah’s gratitude was heightened by his knowing that he deserved death but that God had shown him extraordinary mercy. The Lord had commanded the fish, and it vomited Jonah onto dry land (Jonah 1:17, 2:1, 10).

iSpeak, Malu Tiongson-Ortiz, Happy Walk photo, Feb28

In the same way we can be assured that when God calls us to do a task, He will provide a way for us to accomplish it. He will provide for the needs of our child. If we opt for the abortion of our special needs child, we will miss out on the blessings that God has in store for us. I believe that some- how, in ways it may still be difficult to accept and understand, our special needs child is God’s tool, His agent in our lives, to make us the person He wants us to be.

 

Photos from Malu Tiongson-Ortiz 


The Down Syndrome Association of the Philippines, Inc., was founded in late 1991 to offer support to families with Down syndrome and to initiate, develop, promote, encourage and support programs and projects concerning Down syndrome.

The founders of the Association include physicians in the fields of genetics and social development. The directors of the Association have a special and unique insight and dedication in this field because each director is the parent of a child with Down syndrome.

The Association, which is a non-profit, non-stock, private organization, maintains an office, and is manned by professional staff and volunteers. Services provided by the Association include: parent counseling, seminars and training, recommendation of medical specialists, recommendation of special schools and early intervention facilities, outings for children with Down syndrome and their families, parent support meetings, and library services.

MRCFI Building, Camia Street, Guadalupe Viejo, Rockwell Compound, Makati City

(02) 895-3606, or (02) 895-9642

Contact Person: Adette de la Paz

dsapi@hotmail.com

www.dsapi.org

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