Being a mother to a child with disability: how I lost and found myself

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Monday, March 6, 2023
being a mother to a child with disability: how i lost and found myself
Preeti Singh

I had a perfect pregnancy—I was active throughout my pregnancy, all medical tests were fine, the baby was growing as expected. But in the ninth month, one day I felt that the baby was not making any movement. I checked with my mother and she suggested that we should see a doctor.

An ultrasound detected that my waterbag had leaked and the baby was struggling to survive. I was rushed to the operating room and the baby was brought out in a C-section delivery.

I faintly remember Angad’s ( that is what we decided to name him) first cry and his wrinkled body. The doctors assured me that the baby was fine and the wrinkles were due to lack of water.

Like any other Punjabi family, my family celebrated the news with ladoos. But a few hours later, my mother felt that something was not right with the baby. He didn’t ask for feed, and his cries were way too feeble.

By the next day, we were referred to Post Graduate Institute of Medical Research, Chandigarh. As we were waiting in the emergency ward for the doctor, we noticed Angad was twitching. He was having a convulsion. He was diagnosed with hypoglycaemia, leading to epilepsy, pneumonia and all this complicated it to conjugated jaundice which lasted for 6 months.

My life took an unprecedented turn. For almost three years from that day, we were running from one doctor to another. We tried many doctors, hospitals, and alternative medicines, but the convulsions just would not go. In fact, they were getting more frequent,  and every time, he would have one, I would put my little child on the left seat of the car and rush him to the hospital. 

Though I accompanied my husband, who was then an Indian Navy officer and on his various postings-- from Kochi, Vishakhapatnam, Chennai to Srilanka. But in all these places I would end up making regular visits to the nearest hospital. Angad’s every milestone was delayed. Even at 8 months, he could not sit. So, often I would spend the entire day teaching him how to sit. I even scolded him for not trying enough. When I look back, I feel I was too harsh on him at times.

Three years into my ordeal, one day  Angad’s doctor felt the deep pain and depression I was in. She asked me to sit and relax. She counselled me and suggested that I should try for a second child. Planning a second child was out of the question for me. How could I think about bringing another child into the world when my first one was struggling?

The doctor convinced me that Angad would need a sibling. I understood her point.  A year later Raveera, my daughter, came into our lives. She was medically fit. My parents allowed me to spend some time alone with Raveera and took Angad with them for a few weeks. Those few weeks helped me think rationally. I began to enjoy little moments with Raveera. I celebrated her milestones.

I realised that I had surrounded myself with countless insecurities. I needed to let go those insecurities and accept the reality of my life. To be able to take of care of my two children, I needed to first take care of myself.

Gradually, I realised that I had surrounded myself with countless insecurities. I needed to let go those insecurities and accept the reality of my life. To be able to take of care of my two children, I needed to first take care of myself. I needed some ‘me time’. So, I joined an aerobic- exercise class. I picked it up so well that my trainer encouraged me to become a trainer myself. By the time Angad and Raveera both were ready to go to school, I was a trained aerobics instructor. I started taking classes for the three hours when the  kids were in school.

I did not earn much money from those aerobic sessions, but I did develop a lot of confidence. Those three hours would recharge me for the day. And most importantly, I learnt to take life as it came.

I did not earn much money from those aerobic sessions, but I did develop a lot of confidence. Those three hours would recharge me for the day. And most importantly, I learnt to take life as it came.

So, the challenges were still the same. I had to work hard to get Angad inclusive schooling, help him deal with not-so-welcoming peers, and pass his examinations. We still needed to rush him to the hospital two-three times a month. But I was a new me. And my positivity had an impact on Angad’s development too. Angad, with all his medical limitations, wants to become independent. He is 24 now. He can do most of the daily chores himself. He has even learnt to button his shirt, a task he has tried hard to accomplish.

He cleared his class 12th, and now is doing an internship at a paint company, where he is learning how to mix colours to make a new shade. He spends his leisure time playing football and GTA on X-box where his virtual players don’t judge him for his flaws but compete with him an equal. Most importantly, Angad has not given up on life. He is as aspirational as any child his age is. He knows he has some limitations and he is constantly trying to overcome them.

I am doing a lot of things, trying new things every day at 50. Recently I became the face of State Bank of India and there were hoardings with my pics across the country. I am getting modelling assignments. I am a diversity and inclusion champion and a training consultant with many companies.

 

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