A Mother’s Story: Cerebral Palsy would not hold her back

Chandra Maharaj photographed in waiting area of the Faculty of Agriculture at the Frank Stockdale Building, UWI St Augustine. Make-up by Shenelle Escayg, photography by Mark Lyndersay.

Originally published in Express Woman, October 30, 2016

My name is Chandra and I am the mother of a beautiful and ambitious young woman who has Cerebral Palsy.

My life changed in an instant. My daughter Shamla, born on November 11th 1984, was diagnosed with Cerebral Palsy (CP) at six months. My husband Rajkumar was out of the country when I got the news and I spent sleepless nights and restless days thinking of how I was going to cope.

I knew nothing about disabilities and neither did Rajkumar, but we had the same dreams for her as we would have for any other child. Our motivation was fueled by Shamla’s determination to be a part of everything. Her mental and intellectual ability was on par with any child and we did not take that for granted.

My little girl could not sit up on her own. Her body would stiffen and any little object became a weapon, as she had no control over her body movement. When people stared or referred to my child as retarded or crippled, I felt disappointed but I hid it behind my verbally stern responses.

Our main concern was Shamla’s education. My husband was determined that his daughter would get into the school system and get an education. He was no educated man. He had to drop out of school in Standard Three, to toil in his family’s business as a full time cane labourer.

We were poor so he had to walk to find out information about schools for Shamla. It was in the deep rural village of Moruga he found out about the Princess Elizabeth Special School in Woodbrook, Port of Spain.

Shamla was admitted into the clinic at the Princess Elizabeth Centre (PEC) at four years of age. Dr. Toby said she could begin school in September of that year, 1990. I had to sum up the strength to leave my child in the hands of complete strangers. I put her down in the crib and walked away without turning back because I did not want her to see me crying.

Each time Shamla came home and had to go back to PEC I felt the stab of sadness all over again. I took comfort in knowing that it was for her own good.

Shamla passed all eight of her CXC subjects and I had no clue what was next, but I listened to her because I had confidence in her decisions. Shamla went on to do her A’ Levels and passed her eight CAPE A’ Level units. Although she wanted to do additional courses, we had never heard of someone with a disability going on to get a degree.

We discussed it continuously until she came home one afternoon and asked me to carry her to apply to the University of the West Indies (UWI), just to see what would happen. I never thought realistically, that any of my children especially my daughter, would attend such an esteemed institution. I did however, dream about it. I wanted at least one of my children to attend university.

In 2007 we found out that Shamla had been accepted by UWI to read for a BSc in Agribusiness Management. My sons and I toiled with her in getting everything together. There was a lack of experience in handling a disabled person on campus. Therefore, we had to do everything on our own. We met a few extremely helpful individuals who made the task somewhat easier. And then it was time for her to actually attend classes.

We stayed up at one of UWI’s dormitories. It was overwhelming for us as we both were headless chickens trying to find out information and settle down. When I reached home that weekend, as I pulled into the yard I broke down in tears. I missed my family.  She finished her bachelors’ degree in three years and then she set her sights on a Masters Degree in Marketing and Agribusiness. I was most proud of her. She is now about to start her Doctorate.

After she became highlighted in the media, I told her, “God is using you as a vessel to help others and to inspire people.” Shamla could not fathom why she deserved so much attention but I saw the bigger picture. My daughter, who cannot stand at all, nor control her body movements makes me proud everyday knowing she isn’t giving up and is always enthusiastic to do more and accept any challenges that come.

I do not think I would trade having a child with a disability for a next life. The experiences I got and the independence I gained, no amount of money could buy this.

Rajkumar’s sudden and shocking death in 2014 tore me apart. I felt that my life had ended after seeing him healthy and in a split-second lying dead. I remember Shamla came to me and said “Daddy no longer has to work hard. He is peaceful now. All we can do is make him proud and live in his name.” My daughter remained strong for all of us.

Shamla now encourages me to live my life and venture out to be independent and explore. Things I never dreamt of doing in this life I now do. I think about the places I have been and people I met because of Shamla’s will and encouragement.

She tells me to always look good for myself and people would know her dad chose well. I know this is my reward for my dedication. My daughter is my best friend. We are always together, we laugh, fight and stick with each other in every circumstance and until my last breath, I will continue to find the courage to do anything they ask. I love my family.

The production of the Lioness series, highlighting the experiences of 12 mothers, is supported by Cause an Effect, Angostura Limited, First Citizens Bank and A Very Special Disabilities Forum. Special thanks to the Marketing and Communications Department of UWI for facilitating the location photography of Chandra and Shamla.