Mothers have a tendency to want to alleviate our children's obstacles, and we struggle when we can't. Vicky Singh of Potomac, Maryland has taught me to look at this aspect of parenting differently. When Vicky Singh's son very suddenly lost his ability to walk because of Duchenne Muscular Dystrophy, she initially was angry at God. "Why would God take my son's ability to walk? We take it for granted that a child can walk. We don't pray for a child to walk, we just expect him to be able to do it." But the absence of walking was a huge life adjustment for the Singh Family. When Saij's wheelchair was delivered, Vicky wanted to throw it away in her anger and grief but was struck by her son's joy at how much opportunity this motorized wheelchair brought him. He could still wheel around and throw a football with his friends and the family slowly adjusted to their new state of normal. When Saij asked, "Would you love me more if I could walk?" his mother responded with, "No, if this is the way God gave you to me, then this is how I'll take you. I love you just the way you are."
Saij is one of the 1 in 3,500 boys diagnosed with Duchenne Muscular Dystrophy, a rare, fatal, genetic disorder diagnosed in childhood that put Saij in a wheelchair just before his eighth birthday. Duchenne affects larger muscles first (legs) and works its way to other muscles (arms and trunk) and spreads throughout the body until it eventually affects all organs, including the heart. Currently, there is no cure.
Vicky's devotion to her son is obvious. I've seen her repeatedly lift a heavy, motorized wheelchair and her now-12-year-old up and down stairs so he could attend his friend's birthday party. Recently, Saij's upper body muscles have begun to deteriorate. The day is soon coming where Saij will no longer able to eat on his own or brush his own teeth. While his peers are gaining independence, he is slowly losing his. As of today, there is nothing this mom can do to reverse this situation. But she doesn't want our pity. Instead of worrying about all the eventual certainties that this disease will bring to their lives, her attitude is, "We're going to have a great life even with Duchenne. Life is perfect just the way it is given to us." There is no doubt she truly means it. Her positive spirit can be traced to her Sikh faith and the concept of Chardi Kala, meaning eternal optimism even in the face of adversity. "Saij is God's child and in my safekeeping for as long as God chooses. I ask God to show me the path to care for him."
Nowadays, instead of being angry or filled with self- pity, she and her husband Gurpreet, focus on advocating for all children afflicted with Duchenne Muscular Dystrophy. Vicky says, "I am going to do every single thing in my power to change the predicted course of this disease." One can only imagine what our own reactions would be in such a life circumstance. Could you accept what life has given you with humility, grace, and gratitude, even if it was something you would never have chosen? Do we provide unconditional parental lovethrough all the chaos that life throws at us? It's easy to be frustrated by the small things, but Vicky and her family are challenged with big life issues that they handle with more gratitude and optimism than many of us do with much smaller problems. As Mother's Day approaches and we reflect on what it means to be a mother, with all its good days and bad days, this mother's attitude reminds us that life is perfect just the way it is given to us. Our reactions to the chaos that life brings determines the quality of our life.
Please join Team Saij for a 5K run and a family fun day to raise money for Duchenne Muscular Dystrophy research. May 16, 2015 at Seneca Creek Park in Gaithersburg, MD. Register here: http://www.eventbrite.com/e/dash-for-duchenne-5k-race-fun-run-tickets-14282989807. Team Saij is a registered non profit. 100% of proceeds fund medical research for Duchenne.
Jasbir (Jesse) Kaur Bawa is an Assistant Professor of Lawyering Skills at Howard University School of Law. She also serves on the Board of Directors for the Sikh American Legal Defense and Education Fund (SALDEF).