The Life and Times of Pragnya

Pragnya Mishra is an M.Phil. in Anthropology from Utkal University. She also has a post graduation diploma in Rural Management from Xavier Insitute of Management (XIM), Bhubaneswar. Pragnya worked for two years as Research Associate with XIM. She later joined the Agricultural Finance Corporation but quit her job to raise her children.

Pragnya spent 12 wonderful years in South Africa and one year in Dubai. At present Pragnya is a full time homemaker having shifted to India five years ago. She is parenting her three children, a daughter and twin boys, by herself as her husband continues to work in South Africa.

Pragnya is active on social media and is highly respected by her friends and well-wishers.

It was a perfect sunny day in Johannesburg, South Africa. I could feel the warmth of the sunrays through my kitchen. I was in a hurry to finish my cooking before my twins arrived from school. After all, my two 2½ year old tiny tots needed loads of attention.

I usually fed them lunch and put them to sleep before my daughter returned from school. She had not grown up enough to take care of herself all on her own.

Suddenly my phone rang. It was from the school that my twins attended. The lady on the other side very politely informed me that I should meet the principal at once. They had something important to share about my son, Raj.

Raj!

I could sense something bad, something really awful. I probably knew it in my heart. But…

“Oh Mrs. Jena! Good morning. How are you? Please have a seat. Would you like to have something?” asked the principal.

“Oh c’mon. Don’t be so formal. Just tell me what you want to share about Raj.” It was all in my thoughts but all I could whisper was, “No, thanks.”

“Mrs. Jena! Something is terribly wrong with Raj all of a sudden. You know he used to be the smartest kid in our school? I used to call him Raja, the King. But…” She paused in grief.

“But he is no longer the same Raj. He is not playing with anyone. He gets tired very easily and lies down on the floor for hours. Please take him to the doctor. He needs help.”

“He needs help.” That particular sentence continued to echo in my ears for years. It’s not that I had not noticed these changes in Raj but I was not ready to accept them.

“It can’t be. He is fine. He will be fine. After all he is just two. God won’t be that cruel to me. I have never harmed anyone. Why should my child suffer?” I was consoling myself, pretending to be strong and courageous.

The next moment I was pleading before the almighty. “No, God, please don’t do this to me. You can’t. Have mercy on me.”

Till then I had no idea how sick Raj was and how much time was required to cure him. I didn’t even know what exactly was wrong with my Raj.

All I could think was about me. I had given birth to a defective child. Oh God! How was I going to face my friends, my relatives, my people? No, I wouldn’t allow it to happen. I would prove them wrong.

“Did you vaccinate him? MMR particularly?” asked the doctor after going through his report.

“Yes,” I nodded. After all, I am a responsible mother. What a question! “He took MMR, Hepatitis B and Polio booster in a single shot,” I clarified.

“So the damage is already done,” said the doctor. “MMR is the most controversial vaccine. Although there’s no direct link between the two, sometimes MMR is known to damage the brain. Your son is now a patient of silent seizure. He is developing autism. Currently there is no medication available. All you have to do is keep him in therapy. It might take years and years to get some positive result. Have patience. You need to have lots of patience.”

Everything changed before me. My world, my people, my friends, everything. I started avoiding people. I started to put Raj to sleep before any of my guests arrived.

I left Jo'burg. I changed my life style. I changed my age-old habits. All I couldn’t change was his destiny.

Destiny! How dare my child was hit with it! What a joke it played on me. I was devastated.

“I will hide this from everyone. I won’t share it with any of my friends. I will cure him. I will behave as if everything is normal in my family.” With these promises I started my journey into a different world. A world that was so new to me. A world I never thought would be part of my life.

I met and was greeted by many new friends. We were all in the same boat. Some were in better condition than Raj, some bad, some even worse. But then this was world where I had nothing to hide. I was myself.

The parents looked so happy. Their kids were affected but none looked sad to me. Maybe they were pretending like me. But I was happy in their company. Life again looked promising and I felt I could come out from my depression. Life was still beautiful. All I didn’t know was, this was the beginning of my struggle and I had not even taken the first step.

Every day I had to face new challenges. His unsocial behavior, tantrums, his aggression, headaches, seizure. And I had two more children to look after. Life appeared like a living hell.

I read almost all articles related to autism. I even tried all the medicines on trial-and-error basis. I went door to door, doc to doc with a hope that someday, somehow I would get the sanjivani booti for my sick child. Yet things went from bad to worse. I started neglecting my other two children, though not intentionally.

Traveling, going to parties, or to market places looked impossible with Raj. I was humiliated by relatives and even by strangers.

Still I fought for my Raj. I justified all his unjustified acts. I ignored those curious eyes in the gatherings, ignored the sarcasm.

He was not accepted by schools. I was advised by many who were half-educated and almost half my age about how to raise a child.

My motherhood was a big question mark. So was my efficiency.

“You have to handle his sexual orientation when he grows up.”
“It must be your pervious birth sins”.
“No matter how much effort you do they can’t learn beyond A B C D”.
“It’s a total waste of time, money and energy.”

Many people, innumerable advice. I got used to it slowly.

But I also met some very sensitive and compassionate people during these years. Some were good to me because of their profession; some were very good to me because they could understand what I was going through.

My life now totally revolved around Raj, his therapy, his school, his medication etc. It was an unknown world which eventually become my world, my people, my friends. I learned a lot through research, discussion, experiment, experiences of others. Raj improved with medication, massage and therapy. Days started looking promising again.

Alas! All my efforts went waste when Raj fell sick again, this time with typhoid. The typhoid medications didn’t do him any good. Raj was hospitalized with a major break- through seizure. He spent 7 days in the ICU. Though he was discharged from the hospital with major doses of medication, he was still not free of his headaches. They used to be so severe that he often banged his head on the bed. He was under observation 24x7. All I thought then was it’s just the matter of time; Raj was not going to survive. I stopped his schooling. He was impossible to handle.

With or without medication Raj was all the same. I took a major decision and stopped all his medication. I didn’t even consult the doctors. If there was a risk to his life, I was ready to face it.

Slowly his headache vanished. I kept him on Ayurveda. Raj started to show signs of development. He started eating, started talking, this time with all meaningful words.

Raj is 8 years old now. He sings, he plays with his brother, he has started writing and obeys instructions. Raj is even learning how to ride a bike. In short, Raj is much better now.

But in the process I lost 6 precious years of my life. I hadn’t even noticed that my daughter had grown up into a beautiful teenager and that Raj’s twin brother, Rahul, was a handsome boy now. All I know is that they are still waiting for their share of love and attention.

I don’t know when I become a Supermom from being just Mom. Those who were questioning my motherhood are in need of my guidance now. People want me to share my experiences. They invite me to give lectures on how to bring up special children. I have been offered the position of principal in Special schools.

People praise my patience, perseverance, attitude, efficiency and I have become Somebody from a Nobody to an Icon. From a cursed life to a blessed life. Raj made me popular.

What a turn of events.

I don’t wait for miracles anymore. I don’t hide my pain and journey from anyone. I don’t wait for others to accept him, but I have accepted the imperfections in my perfect life. I know it’s a never ending journey. But I won’t give up.

Raj is special and I will make sure that all his days remain very special.