“My Life May be Full of Difficulties and Sacrifices But Her Smile Eradicates All My Pain”

This article is part of our series ‘A Special Kind of Mother’ on mothers who have had to face greater challenges than the rest.

By Priyanka Gupta (as told to Kaveri Jain)

My daughter Tarinni Gupta, whom we call Taru, was born in 2002, when there was less awareness and acceptance of disability. I was 24 years old at the time, and she was my first baby. Born 26 weeks premature with severe complications and low chances of survival, she began showing signs of disability early on in her life.

She has hydrocephalus, cerebral palsy, seizure disorder and acute scholiosis, which means her spine is bent to one side.

After her birth, I had to undergo multiple surgeries myself, and life unfolded with new challenges every day. Not being able to get my firstborn home, and instead spending months in hospital hallways, was something I had never imagined. Pain and denial overwhelmed me and I just didn’t know what to do.

Finally, after a long wait, we got her home and then began another battle, something I was totally unprepared for. Regular therapies, medication, countless doctor visits, all took a toll on me physically and spiritually. But I did not give up.

I had hope that she would get better.

Slowly, this life became the ‘new normal’ for me, and I was able to come to terms with her disability. Taru cannot use any part of her body. She remains confined to the bed and needs diapers. She needs to be assisted and taken care of throughout the day – starting with brushing her, feeding her milk, carrying her to the bathroom, giving her a bath and then medication and food. There is a lot of changing of diapers and someone needs to sleep with her as well.

I employed a full-time helper for her 11 years ago and trained her in caretaking, but I have to constantly watch and assist. We take Taru downstairs for a while on a wheelchair for an hour or so every day.

It was my own decision to go ahead and have a second child. It wasn’t an easy decision as I had to go through in-vitro fertilisation this time around. No one supported my choice, because they feared the outcome, but I was hopeful and confident.

My second child Prisha was born 10 years ago and is completely normal. I soon realised that bringing her up was a completely different process. Taru cannot articulate her thoughts; she is happy and satisfied in her routine and has no additional desires besides her daily needs. In contrast, Prisha is extremely vocal and demanding,. But she is definitely sensitive to Taru’s needs.

I feel lucky to have two girls.

My husband Vikram is a businessman and I have mostly been a homemaker due to Taru’s needs, though I try my hand at part-time jobs now and then. Taru’s condition does take an immense toll on my relationships, especially with my in-laws and my husband.

It is a human tendency to expect the same kind of involvement and effort from everyone around towards my daughter, but of course everyone has different ways of showing their care and concern.

Though my husband loves Taru dearly, the amount of support he provides on a daily basis is minimal. It is easier for him to keep himself buried in his work, maybe because it’s too tough for him to accept the reality. But even though there are differences in relationships, everyone puts them aside when it comes to Taru. She is honestly the one binding force between my husband and me.

She also has a special relationship with her paternal grandma, and talks to her on the phone every day after breakfast. It’s a ritual and her own language of love. On Diwali, her Daadi comes to stay with her.

Taru is as important as any other child to us, in fact, even more important, and I never compromise on her lifestyle. She wears the prettiest clothes, and we get a hairstylist to come and cut her hair every month.

Motherhood has been a challenging journey. I try to take each day as it comes, and stay happy. But seeing my child suffer for so long has left me with a helpless, painful feeling. Watching her cry without being able to understand what she needs is the worst.

I have followed Nichiren Buddhism for 14 years, and that has been a pillar of strength for me. At times, I go for counselling as well. Along with this, my mom and my friends have been my integral support system. A strong support structure is vital for my own sanity.

This July, Taru will turn 18.

On her birthday we all get together as a family and she loves it. She is a lovely child, always full of joy, with only love for the people around her and that keeps me satisfied as well. It helps me break barriers and talk about her freely with others. I am happy that society is changing and that people are more aware and understanding about people with disabilities.

My life may be full of difficulties and sacrifices, revolving wholly around my child, but her smile eradicates all my pain and I cannot imagine it any other way. She’s so special that only she understands when I am hurting, sad or unhappy. She is my only companion. And though we can’t have proper conversations and only sit together in silence, our hearts are always connected and she understands every feeling of mine.

Taru is a gift of God and has changed my life, teaching me patience, endurance, forbearance and love. It was difficult in the beginning but with time, she has become more precious than anyone else.

First published in eShe’s June 2020 issue