Originally published in the Sunday Express Woman Magazine on October 23, 2016.
My name is Sofia and I have a 27 year-old daughter who is severely disabled, with my first husband. Stephanie and Tiffany were supposed to be healthy twins.
My journey started in September 1988 in Caracas, Venezuela. I was just married a year earlier, and was happy to get the news that we would soon be having not one baby but two, twins!! As a first time mom, it was exciting and scary all at the same time. The pregnancy progressed normally, but things went wrong three weeks before delivery.
I was rushed to the hospital in lots of pain. They did an ultrasound and rushed me into the operating room. When I awoke, I was told that one baby had strangled the other with the umbilical cord and the one that survived had to be closely monitored. I was discharged with Stephanie three days later.
Three months after, Stephanie was diagnosed with severe Cerebral Palsy, something that we had not heard of before. This was a terrible shock, as every new mother hopes to have a perfect baby at the end of nine months, in my case I was hoping for two, healthy, bouncing baby girls. My ex-husband’s job caused him to be away from home quite a lot because he was an airline pilot, so I had to manage mostly on my own. This was very challenging at times, but I soldiered through.
I didn’t have any problems finding assistance be it therapeutic, medical, guidance, counselling etc. regarding cerebral palsy, as it was available in the public and private medical sectors in Venezuela. As a parent and a first time parent, you go to the moon and back if necessary to help your child, having been to 3 different doctors in Caracas and Maracaibo, I was looking for a cure for my daughter.
Yes a cure! We then decided to go to the Houston Children’s Hospital in Texas, USA, there the Chief Pediatric Neurologist sat us down and asked us our age, asked if we would like to have other children, if we were working to build a future together, to which we responded yes to all. The good doctor recommended we place Stephanie in an institution or have two nurses on twelve hour shifts at home, to help care for Stephanie, as she would be bed ridden all her life. As you can imagine, I wanted to strangle the good doctor!
We traveled to Houston, NYC, Spain and India looking for answers. After our trip to India, my ex-husband even became a Sai Baba devotee and I too by extension. Stephanie was unable to sleep due to her condition and when she was about to turn two, our marriage began disintegrating.
I was blamed for Stephanie’s condition constantly. Before Stephanie turned three I was divorced, jobless and left to care for a disabled child on my own. What did I do? I decided to go back to University. But who would care for Stephanie? Me, so she came with me to University.
Then that day came. I had a nervous breakdown due to lack of sleep. I was unable to earn sufficient money for therapies and doctors, and my ex-husband took me to court. I had to hand over Stephanie to her dad. It was extremely painful having to part with my child. It was very hard.
I graduated from University, continued to study, married a Trinidadian and moved to Trinidad. After my experience and being in Trinidad for a couple of years I was elected to the Board of Hispanic Women in T & T, today known as Hope of a Miracle, this is an NGO that provides lifesaving surgeries for kids that need a second chance at life.
After a couple of years at HWTT, I received a call from a lady who wanted to speak to me, she said she had seen me via the media and liked what we did. We met up at West Mall, she told me that she had a son with developmental delays and asked me to join the board of CKFTO to assist with moving the organisation ahead as she and Sara Stephens, co-founder, wanted to provide Occupational Therapy services for Children with Special Needs. This lady was Laura Pierre-Escayg.
Today, eight years later, I am a true, fervent advocate for all people with disabilities in Trinidad and Tobago. Today, children have access to different types of therapies. It is still not readily accessible all over our twin islands, but with work and advocacy, more children have access than 8 years ago and more kids will have access in the future.
I have learnt a lot regarding acceptance, I’ve had lots of people tell me that parents of children with disabilities are epically strong, that they would not know what to do if they had a child with a disability, that they would run and hide if this happened to them.
The only reply I give them is that as a parent we WILL DO ANYTHING for our children regardless of their condition, the secret is to take it one day at a time. Stephanie still lives in Venezuela with her father, her condition is still severe, still bed ridden and has to be cared for around the clock.
My journey regarding awareness, respect, medical assistance, counseling, information for persons with disabilities continues. Their rights must be upheld, persons with disabilities too want to study, have access to buildings, sidewalks, stores, medical and much more, they wish to be respected and treated equally. After all, persons with disabilities are just like you and me, they just do things differently.
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.