My Sister and Cerebral Palsy

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Kupang and her magnificent sunset – how I miss home and my family

This is the story of my sister. Her story is unique not only because she is a special person to me, but because of her spirit of life despite all her conditions. This story is not about her but also about the two other special persons in my life, my mother and my wife. So here it goes.

My sister suffers from cerebral palsy (CP) since she was born. For those who don’t know about this disorder, CP refers to a group of disorder that affects a person’s ability to move or maintain balance and posture. I never understood her condition until my study in Australia that I understood a little bit better. My sister is just two years younger than I am, so she is getting to be a middle age woman very soon. Because of this sickness, she cannot speak and cannot walk either. Every move is jerky and quite a struggle for her. She basically requires a full-care for all her life. Despite her sickness, her brain and intelligence remain normal; therefore, she could think like an average person and read and write quite well. She is quite smart too. I will talk about her approach to learning how to read in another article but let me share a bit about her and how we grew up together.

Ever since I was a kid, I knew that my sister had been sick and that she couldn’t talk and walk. My mother said when my sister was a baby, they couldn’t feel her reacting or attempting to move her body. A healthy baby would start to roll over, sit, stand or walk by the age of 9 to 12 months. It didn’t happen to my sister. My mother said my sister’s body felt floppy until even two years old. My father then took her to a hospital in Bali to get treatment. I wonder what the doctor said to him. Did they know that it’s cerebral palsy already? Or the medical science at that time has yet to catch up with the knowledge about this type of disorder. She was treated for a few months at the hospital there. I remember even though I was still a kid, I missed her and my mother a lot for their absence from our home in Kupang. The doctors also suggested to my parents to let my sister undergoing an operation to fix her spinal cord.

It was a wise decision from my father to disagree with this suggestion. I’m sure that advice was basically still experimental because today’s science indicates that CP cannot be treated. CP is basically caused by abnormal brain development or damage to the developing of the brain that affects the person’s ability to control his or her muscle. CP comes in three kinds of disorder; stiff muscle (spasticity), uncontrolled movements (dyskinesia), and poor balance and coordination (ataxia). My sister has all of these kinds, and her speech ability is also affected.

When my sister was between seven to ten years old, they resorted to traditional treatment. They went to faith healers and even traditional chiropractors (for lack of a better term) who used to help people with broken bones. God bless my parents, they were just trying their best to help my sister. There was this healer who used hot water boiled with medicinal tree bark. Every morning we would drive to the village where my sister would be massaged with this medicinal hot water. I could hear her crying every time. It pained me to listen to her crying, but I understood then that it was for her well being so she could be healed and be walking one day. After going to too many faith healers, my father finally gave up and accepted the situation. He became withdrawn and even decided not to pursue his career in the military worrying that if he became a commander, he would be transferred to many places in Indonesia, and that would make my sister suffered.

My parents did not understand or were not ready to raise someone with CP, so they had my sister at home. Both of them were working full time, so my sister had someone taking care of her full time. The person would be relieved from her work when my mother came home from work. Both my parents have sacrificed in their own way to raise and take care of us. My father sacrificed his career and chose to provide for us making sure we have a house of our own as he entered his retirement. My mother had to settle of being a full-time caregiver for my sister. She basically does everything for her from feeding, bathing, cleaning and putting on clothes for her. It takes a strong dedication and love to be able to do it literally whole her life. She never complains even once. Now, as my mother ages, this role has been shifted to a caregiver who comes to our house and helps my sister. My sister has become more independent that she doesn’t need anyone to feed her anymore.

All these years my sister never really went out of the house. We were too scared to take her out worrying about judgmental stare from the people who see my sister’s condition. All this changed when I got married. My wife was the one changing my mindset, our mindset, making us realised that my sister could have a more fulfilled life if she could go out more.

Now, whenever we go out, we try to take her out as much as possible. It soon becomes natural for us to go to the mall and watch a movie. It hasn’t been very long, and we couldn’t’ go out as frequent as we like because I’m working far away from home, but the mental blocks have been taken away. My sister could basically go anywhere we would take her to. She enjoys going to the beach, feeling the sand on her feet, the warm sunshine and the breeze stroking her face.

So there, this is not only a story about my sister’s spirit to continue living despite all her difficulties, but also about the undying love and dedication of my mother and the bravery of my wife that helps open the world for my sister. I will forever feel at awe and indebted to them.

 

For more information about Cerebral Palsy:

https://www.cdc.gov/ncbddd/cp/facts.html

http://www.cerebralpalsyindonesia.com/tentang-cp/

 

One Reply to “My Sister and Cerebral Palsy”

  1. My eyes was tearing and my heart became so..so warm since I can feel tons of love in here, in mama’ heart ..in Ibu Edenn’ and of course in yours. Gbu all

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