They say that there are never any coincidences in life, and with that I am taken back to the moment I met Gulshan Kavarana at Mawaheb for Beautiful People when I was in the very early stages of this project.
During our interview she jokes "You were all over the place. You had no idea where you were going. I was trying to figure out what this girl was trying to achieve!"
Gulshan is right.
I turned up at Mawaheb to meet some of the students. I knew I wanted to tell their stories, but I was sitting in my own fears of self doubt and unworthiness, thinking I would not be able to tell such valuable stories and do them justice.
And so, we met, and I left, and the project was still a figment of my imagination until 6 months later when I finally took the leap.
I'm so glad we had that meeting, and have been so lucky to have had many other interactions with Gulshan since that time, although none have been quite as intimate and soul baring as this interview.
We share the common bond of caring for a child with special needs, and yet this is the first time I had heard Zara's full story.
Please sit down, grab a cup of tea and stay awhile. The images themselves tell one of the most honest stories I've captured yet.
1)Tell us a bit about your family.
Gulshan- We are a family of 4. I have 2 daughters aged 26 (Jenai) and 19 (Zara). I was pregnant with Zara when we moved to Dubai 19 years ago. Everyone said Zara would be my lucky child, and I really felt like that throughout the pregnancy. There was a nagging thought that she might have Down Syndrome and though I love being with children with DS, I didn't want one of my own. I prayed to God to give me a normal child and in return I will work with people with disabilities for the rest of my life. To stop my nagging thought I asked "please give me a Sick child over a child with Down Syndrome" and then the feeling went away.
Zara was born normal and healthy. I held up my end of the bargain and went to volunteer at Dubai centre for special needs. The first day I started a girl had a seizure, and I walked out thinking "How does her mother cope with something like this?".
Four months later it was our turn when Zara had her first seizure after getting her DPT shot. The seizures continued to this day. They started as 10 to 15 a day, some lasting an hour long. At the age of 6 mos, Zara was diagnosed with SMEI (severe myoclonus epilepsy in infancy), and at 12 she was confirmed to have Dravet Syndrome. There are 40 types of seizures, Dravet is the least common. Zara is severely affected by it. With each seizure her condition gets progressively worse. Seizures can cause SIDS as all of the seizures occur when she is asleep which means that she still sleeps in our room even though she is 19 years old. Zara also has sensitivity to heat. Zara has one to two full blown seizures per week.
Zeheer- in the beginning she had seizures but she was normal. She was hitting her milestones. She had a few words and a lot of understanding. I didn't realise the effect the seizures would have. Zara started out in s mainstream nursery and was doing well. She was on medication to control the seizures. At the age of 3 she had a lot of seizures, which we started to notice the regression of her development. In the beginning she would regain full function after seizures but after some time we realized the seizures were causing brain damage. Zara lost her speech and ability to walk. She walks now, but had to learn again with the help of an amazing therapist named Saif Bijliwala. She used to dance, run, and be very active.
With Dravet syndrome, her physical and mental condition regressed. The cocktail of medications caused her to be in a drugged state. I feel she is trapped in her body. She feels pain but it is difficult to communicate this to us.
2)What has been your biggest challenge with living with Dravet Syndrome?
Gulshan- Life is unpredictable. One moment she is fine, the next moment she can have a seizure and we have to change any plans we may have.
After a seizure Zara cannot sleep, even if we try to put her back to bed she will walk around the house delirious. This means one of us has to get up and walk with her so she doesn't hurt herself. This can continue for at least and hour if not more before she can go back to bed.
We have experienced thousands of seizures to date but no matter how many we go through, it is always frightening.
I have wished and prayed for her to release and "go" in the middle of a seizure.
There is no spontaneity in our lives. Zeheer changes Zara's nappies and showers her as she is too big for me to carry.
Zeheer- Wherever we go we have to take Zara's needs into consideration and adapt to her pace.
I always thought Zara would be like her sister Jenai but dreams are one thing and reality is another . You are always in the hope and seizures will stop and she would make some progress . It would be slow but at least you hope it would be steady. I always thought she would finish school and have an independent life. In reality all of her daily living activities have to be met.
3) What is Zara's biggest gift.
Gulshan- She has taught me unconditional love and resilience. I really found it hard to love her when she started to regress. I was not her mother, I was her nurse. I had an "aha" moment which changed this. It was one sentience. Someone said to me "You are in a difficult situation". I felt a weight lift off of me. It was the acknowledgement of my personal situation that made me accept the situation .
Zeheer- She has given me a deeper sense of connection.
4) You are both from India and were brought up as Zoro Astrians. How did your beliefs influence Zara's upbringing?
Gulshan- Before I accepted Zara for who she was I prayed out of fear. Now I don't pray in the same way. I have conversations with God.
My beliefs then shifted to everything happens for a reason. There is not much point asking questions because there are no answers.
5) Your eldest daughter Jenai lives and works in Mumbai. Tell us about the bond between your daughters.
Jenai has a boyfriend, Byram. They had a conversation a few years ago where he said that Zara would always live with them in case something happened to us. Jenai broke down and cried because she would never have asked him this but this was truly what she wished for. We've never suggested that Zara would be her responsibility. Last winter for 2 months, the girls were in India together without us. Jenai had full responsibility of her sisters care. Zara was included in everything they did together, not because they had to but because they wanted to.
6) You have run a support group called SFS (Special Families Support) for the past 16years. You are also a full time art mentor at Mawaheb For Beautiful People. What drives you to continue doing this?
There have been times when I have asked myself Why am I doing this? I take on a lot sometimes to benefit and support other people's children. I do what I do because I can't do it for my own child.
Through SFS and Mawaheb I connect dots.
7)What do you want the world about Zara?
Gulshan - I always say she is an angel with a broken wing. She has come to earth to rest and heal until she goes back.
Zaheer- Through Zara's silence she works through Gulshan .
Thank you for bearing your heart and soul Gulshan and Zeheer. You are both most extraordinary parents!