by Maria Eleanor E. Valeros, #newmedia specialist
Caption: Interior designer//special parent Malu Tiongson-Ortiz pens “Embracing God’s Purpose for My Special Child.”
CEBU CITY, PHILIPPINES — All her life, interior designer Maria Lorraine “Malu” Tiongson-Ortiz always wanted to have a baby girl.
Clarissa Lorraine, or Clarisse, came into her life in 1987. But she’s different!
The moment Malu learned that Clarisse has Down Syndrome, all kinds of emotions welled up at once. “I was happy and excited over her birth, but I also felt anxious, angry, despairing, guilt-ridden and ashamed. Perhaps, most of all, I experienced a terrible fear of the future,” she shared in her book “Embracing God’s Purpose for My Special Child” published by OMF Literature, Inc.
In the said book used as a reference tool in her “Special Parenting” talk in line with the culmination of PWD (Persons with Disability) Month end of July, at the Ayala Center Cebu The Gallery, Malu mentioned on how happy and excited she was over the birth of Clarisse, her third child. But she also wondered how she would cope for the rest of her life with such overwhelming burden. “I wondered if there would ever be laughter again or whether the happier side of life had been lost forever. I wished I could feel joy, but the pain was too strong,” she disclosed.
Down syndrome (DS) is named after the English doctor, John Langdon Down. In 1866, it was said, that he defined features of the condition. Down syndrome is the term used today in preference to older – degrading – labels such as Mongolism, Mongoloid, or Mongol. These are now unacceptable and misleading, Malu stressed.
In 1959, the French physician Jerome Lejeune identified DS as a chromosomal anomaly. Cells of individuals with DS, he observed, have 47 chromosomes present instead of the usual 46. It was later determined that an extra partial or complete 21st chromosome results in the characteristics associated with DS.
Clarisse was born multi-handicapped, Malu revealed. As a child with DS, she was diagnosed to have moderate to severe mental retardation due to her inability to hear. Her left ear is “severely to profoundly deaf” while her right ear is “moderately to severely deaf.” Because of this, she is unable to speak.
“My daughter was also born with a left leg that is two inches shorter than her right leg, so her hip hurts when walking for a long time,” Malu added. “In fact, her muscles and ligaments on her left foot have stiffened permanently in a tiptoe position. Clarissa’s mood swings and occasional bursts of rage were due to a mood disorder.”
Then Malu turned to the main topic of the talk: The Financial Challenge in raising a child with special needs. She understands very well that there is no way to avoid tests and future bills. “Giving birth in the US cost a lot of money to start with. I’m thankful to my husband Claro and my father-in-law. But I couldn’t help from worrying about the future bills we would have to pay for all our daughter’s tests. Having a special child is financially draining,” she pointed out.
While parents of ‘normal’ kids only need to pay the hospital bills, doctors’ fees, immunizations, etc., Clarisse had to regularly see her pediatrician, an endocrinologist, an orthopedic doctor, an eye/ear/nose/throat specialist, a dermatologist, a speech therapist, an occupational therapist, and a physical therapist. Malu and her husband Claro also needed to set aside a substantial amount for Clarisse’s yearly blood works, electrocardiogram test, hearing tests, thyroid test, corrective shoes, and weekly purchase of anti-seizure medicine for her mood disorder, as well as ointments for her allergies. Highly sophisticated hearing aids for both ears came later on.
Good thing that Malu and Claro are able to establish a deeper relationship with their Creator. They served the Lord at Christ’s Commission Fellowship. Malu’s doubts melted away in the process. She has learned to trust and rely heavily on the Lord for the family’s needs. “I believe God allows the conception of a special child for a special reason. He wants us to know that regardless of how difficult our situation is, He can give us the grace and provisions to meet their needs,” she shared in affirmation to what God has promised, through the Book of Matthew, when He commanded that we seek first His kingdom and His righteousness, so all things can be given to us as well.
Malu assured “special parents” and their caregivers/guardians that when God gave us our special child, He knew that it will entail a lot of medical expenses and personal sacrifices. “The Bible has 2,350 verses relating to money, for the Lord knows that money matters. I believe God allows difficult financial circumstances for us parents with special children for three basic reasons: to accomplish His purpose for our lives and the lives of our special child; to develop and mold our character that we may become the parents we were meant to be; to discipline us and to build our faith,” she accentuated, adding specific goals such as being able to help other parents, learn to have compassion for others, put order in our priorities, learn to count our blessings, and draw us ever closer to our merciful God.
Further, Malu writes confidently, anchoring on Biblical perspective, that no special child is an accident; that each young life is entrusted to parents by a loving God who has special purposes for each one. She enriches the pages of her book with powerful stories shared by parents of other special children, as well as encouragement, practical help, and solid facts for parents and friends of special families.
The insightful talk capped with the assurance that it is only through our Savior Jesus Christ that we can have the “strength to carry on even when we feel things are not happening the way they should.”
Malu’s talk also serves as a call to continue upholding dignity, respect and inclusiveness of PWDs. The 253-page book is now available in Cebu. It has contact numbers of the Down Syndrome Association of the Philippines, Inc. and other means to reach the author.(First published in The FREEMAN Lifestyle, 2014)