A Very SPECIAL Story

I stumbled upon this article in Yahoo! News and cried buckets. Yes, in front of my officemates. My keyboard is soaking wet now and I can’t seem to stop. Because I can relate to Malu Tiongson, as I have a baby brother who’s suffering from Cerebral Palsy. Me too have a “A Very SPECIAL Story” to tell.

I was planning on creating a blog dedicated to the most important person in my life, but always, I end up staring at a blank white paper. I can’t write. Maybe it’s because I’m not sure of what to say.

Do I make the article sound like I’m thankful? Do I question God? Will I admit that there are times when I felt angry at my Mom because she did things that might cause this? Will I admit that I felt angry at myself for not knowing what to do? I do not know. I do not have the slightest idea. And I hate the fact that most would feel sorry for my brother. I hate seeing people looking at him and feeling sorry for him. I hate it. And I hate myself for feeling that way.

Every time I try to write about him, I felt like a bursting bubble. Like I have so much to say but I can’t find the right words. I cannot phantom. All I know is I am glad, God gave him to us. To me. To my family. And that I love him so much. More that I can ever love anybody.

I’ll write another entry especially for him some other time. Not now I guess. Coz again, I am a bursting bubble.


A Very ‘Special’ Story

Down Syndrome (DS). Any mother would dread hearing these words after she gives birth.

When my daughter Clarissa was born in 1987, I didn’t even know what this word meant. The pediatrician said, “Her low-set and deformed ears, slanted eyes, small nose low nasal bridge, and the straight crease in her palm all point to one conclusion - Down Syndrome.

I wished that the doctors were mistaken. I questioned God over and over. “Why me, Lord? What have I done to deserve this?” The truth feels like an endless burden and I could not feel joy. Why would God give us a special child? A child is supposed to be a cause for celebration, but can we honestly celebrate when He gives us a handicapped child?

Psalm 139:13-14 reminded me that when God created my child, He exactly knew what she would look like even before she was born. He knew the color of her hair and eyes, her gender, and yes...the number of her chromosomes. She was knitted together in my womb and was fearfully and wonderfully made. God is perfect and doesn’t make mistakes. He intended to create my daughter to be a child with Down Syndrome because He had a purpose for her in our lives.

When Jesus was asked whose fault it is that the man was born blind, he replied, “Neither this man or his parents sinned, but this happened so that the work of God might be displayed in his life.” (John 9:3-4) In God’s will, nothing happens as an accident. He created our child imperfectly and designed her the way she is. My husband Claro and I are the parents He chose and our child was made according to His plan.

Clarissa was born multi-handicapped. 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 therefore unable to speak. My daughter was also born with a left leg that is two inches shorter than her right leg causing her hip to hurt when walking for a long time. Her muscles and ligaments on her left foot have stiffened permanently in a tiptoe position.

Our latest discovery is that her psychiatrist says that her mood swings and occasional burst of rages are due to a condition called Bipolar (a mood disorder). Because of this, I had to totally trust God’s work in me for patience and perseverance. While normal kids could walk and speak at the age of one, Clarissa learned to walk at the age of two and every step she took and every sound that she uttered is God’s display of His miracles.

Parenting a child with special needs is a God-given privilege. When Clarissa was born, I had to release her to God’s hands. I cried numerous times, for I realized that our lives would never be the same. I was not equipped to raise a special child. I was at a loss and was clueless.

As Clarissa grew up, the Lord showed me many lessons through her. While I was focused on teaching her a-b-c’s and 1-2-3’s, she was teaching me the greater things in life - unconditional love, patience, perseverance, contentment and simplicity. Because of her, I was drawn closer to God. She is one of God’s greatest gifts to me and Claro.

In 2005, I decided to homeschool my daughter. In the area of academics, I realized that apart from having an interest in fostering reading and math, I should not exclude the importance of character. Homeschooling her was a well-thought out investment for her future. We surely do not want to spend the rest of our lives with an ill-mannered, selfish, skill-less, unhappy, disabled adult. I may not be with Clarissa all her life so I do not want her to become a burden to her siblings. Homeschooling Clarissa has made me realize that I am the best teacher for her.

There are numerous benefits for our home-educated children with special needs.

My daughter receives the one-on-one teaching that enables her to grow academically which cannot be matched in the private or public setting. She learned at her own pace and her needs were met properly. She also has the opportunity for successful learning experiences which motivates her to keep on trying when she encounters difficult concepts.

We can choose the children whom she can socialize with. We were able to instill our own personal/spiritual values into our teaching. Our time was flexible and there was no wasted learning time. Instruction was individualized. She had quality time with our family and much less time spent away from home.

More importantly, I realized that ultimately, my role as a parent is to lead my children to the Lord. His instruction is read in Deuteronomy 6:5-7, “And you shall love the Lord your God with all your heart and with all your soul and with all your might. And these words, which I am commanding you today, shall be on your heart; and you shall teach them diligently to your sons and shall talk of them when you sit in your house and when you walk by the way and when you lie down and when you rise up.”

Clarissa constantly prays every meal and when we forget to say grace, she taps my hand and reminds us to pray. When she used to go to school, I regularly prayed over her before she left the house.

This has been her routine. Whenever she is all dressed and ready to go, she comes to me and asks me to pray for her. She constantly reminds us to pray to God. I discovered this only when I first introduced her to Jesus. I led her to a prayer inviting Jesus to come into her heart and be her Lord and Savior. From then on, she always had the desire to pray. If children were created and designed to worship God, then it is our duty to help them discover what they were created for.

Special children are special gifts from the Lord. They are like angels sent by God to us for a special mission. Clarissa is God’s instrument to me and Claro to mold our character and make us better people. Through her, God taught me to be the Mom I never thought I could ever be.

(Note: Those who want to get a copy of Embracing God’s Purpose for My Special Child may contact Malu Tiongson-Ortiz at 0917-8966258.)


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