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Nisrina Zahra Putri
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The bond is so strong that when big sister is not feeling well, little sister is also not feeling well. At first I thought it was so sweet, but then doubts set in….. what is wrong with my Orlin? I began to notice that Orlin is becoming weak?.. Why did her legs turn dark red when I carry her? So many questions but no answers.
When Orlin was 7 months, she was hospitalized from a long bouts of cough and fever
It was while in the hospital that her doctor mentioned the word mongoloid, a word so strange that I asked what kind of illness was that?. Apparently my husband knew but didn’t say a word. I was busy holding my sweet Orlin trying to keep her calm. The next day my husband told me the worst news a mother could ever imagine…that my sweet Orlin was a special child, a Mongol child. My heart stopped!!!.” My baby was an idiot…. Why… dear God did you give me this child? But somehow I could functioned and my main concern was for my Orlin to get well…I could not care less whether she was normal or Mongoloid.
Orlin was hospitalized for 5 days at home I just looked at her, thinking how could I give birth to such a child? What have I done? Am I being punished? Or is God testing my faith and patience in my journey of life?
I asked her doctor how could my baby be like this?..I was not happy with his answers. He advised me that Orlin took the chromosome test to be sure. But I didn’t heed his advice, I leave it to my God to take care of my family.
I felt empty, lost all interests, lost all desire to know and to be as if there is no life left in me but what of my two daughters? who is going to take care of them? could my husband do it? Will my extended family accept my special daughter?.During this time, I kept things to myself, I could not open my heart to anyone even to my family. I felt all alone and the burden was heavy. It was strange that I turned to technology for comfort when I couldn’t rely on anybody to share my thoughts and open up my heart..I tried to find information on Down syndrome, and found ISDI….and it was in ISDI that I found Mrs. Aryanti and my peace. She was very patient with me and understood my needs and what I went through, she answered all my letters with so much compassion that I felt elated and found my zest for living again…which was so important for Orlin. My baby must be loved and must feel my love.Thank you ISDI, thank you mom Aryanti…..hugs with love from Zaza.
When my baby was 8 months old, we had a small ceremony of changing her nick name from Orlin to Zaza, our Javanese relatives thought that the name Orlin carried such a heavy burden. Zaza sounds nicer and she florished in health. Zaza had weekly message therapy to improve her motor skills and overall health, this I did for her with love and pride.
As time passed Zaza grew but not as well as other children. I grew worried, my baby still could not sit..though she responded to some stimulation. I’m at my wits end, what more was needed for my Zaza ...Dear God Almighty, please give me the strength and perseverance in this journey of my life. All I could do was pray, pray and pray for HIS guidance and HIS love. But will pray makes my Zaza be normal without me doing something to help her?. Finally I attended a seminar on child and parenting and found knowledge important enough for my Zaza. They were occupational and speech therapies.
At age one, Zaza began her occupational therapy but she always cried at this session. Nothing would make her  happy, if anything it made her more upset with everyone trying to calm her down. My Zaza hated the hospital. Our solution was that I learned what to do and how to do it and applied it to Zaza at home and in a fun and relax manner.  She responded well and improved.  She could sit and slowly crawling.  I was elated and proud of my achievements and in the process I made Zaza strong and more active.
Serious health issues never stopped for Zaza. This time it was pneumonia, treatment was for 6 months long. So many medication she must take. It made me worried that her kidneys maybe affected. When she passed motion she always cried due to her sensitive indigestion. All foods must be blundered for Zaza to enable her to swallow and ease her passing motion. Dear God…please give me the strength and endurance to care for my beautiful Zaza.
On May 2012 God enlightened me and gave me an answer I met a herbalist who could help Zaza with alternative medication for her health and problems. Zaza was given special brew for her spleen, bones and other vital organs. Praised God Zaza improved and she could consumed soft food, passing motion improved, Zaza was learning how to walk. She could even master a few words that made me so proud….yaya (for daddy) and meme (for drink milk). The key to being a special parent to a special child is: Patience, Faith, Sincere and Pray.
November 2012 Zaza is 2 years and 7 months old. Her overall health and growth has slowly improved, now she is learning to feed herself. She manages to make baby steps towards something that attracts her, in her baby ways, she can relate to me what she wanted.
That is my special story about my beautiful special lady called Zaza. With special hugs and love, I hope my story will be beneficial to a special mother. Beauty will come in it’s own time.

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