YOUR unique journey starts from the moment you hear the words, ‘your child has Down syndrome’. Down syndrome (DS) is a genetic chromosomal disorder, which leads to developmental and intellectual delays. Motherhood was not new to me when I had Shreya, who was diagnosed with Down syndrome. I already had a son, who was suffering from severe eczema, asthma and multiply life- threatening food allergies.
I believe I was being programmed to look after the daughter, who would become my life-long commitment. So, maybe there was a bigger plan after all. When we moved back to India in 2011 from the UK, we felt so lost in terms of therapies and support groups for Shreya. I was desperately searching for other parents like myself. That experience was so overwhelming for me because as a mother, I was fighting to survive each day. I believe until you have a child with special needs you have no idea of the depth of your strength, tenacity and resourcefulness.
I started leaving my number with every doctor I visited in the hope of meeting another mother like me and eventually, I made my first such friend. Her son is Shreya’s best friend.
I decided to start my own page on Facebook -Down Syndrome Support Group India. It started out as a platform to give out information regarding the disorder and lend support to parents of such patients. This page is now a growing family with families across the country connecting with one another on the page to share information and even become friends. I have had parents contact me on the page after a few hours of their child being diagnosed, which is the most crucial and delicate
time for them as they need maximum support.
Yes, support comes from fellow travellers, people who are already on the journey. But it also comes from the society you live in. We need support as much as we need acceptance. I want Shreya to be accepted by society, for children her age may not be able to find the patience and time to slow down for her, understand her and be her friend.
I want everyone to believe that Shreya can live a purposeful and fulfilling life and that she is capable of contributing in terms of what she can teach about acceptance, love and joy. While I advocate for her, I don’t want people to forget that we as a family face challenges every day. While she is more like them than different, she does face her set of obstacles and I want people to understand that.
Every year, World Down Syndrome Day (WDSD) is observed on March 21. It reminds us that while nothing can erase the challenges we face, Shreya has become our finest teacher and she continues to fill our lives with joy and that makes this journey worth the while.
(The writer is the founder of Down Syndrome Support Group India )