About a year before Syona was born, my husband Dilip and I visited India. Our trip included a week-long stay at a centre called Amar Seva Sangam in rural south India. The centre supports children with special needs by providing education, therapy, residential and day programs. It also serves as a school for local kids who may not otherwise have access to education. Dilip’s uncle and late aunt (who were both diagnosed with muscular dystrophy) help run the organization, which is what brought us there in the first place.
It was my very first experience with a large number of kids with special needs. I expected to be saddened by the kids' disabilities. Instead, that week was one of the happiest of my life. The memory of their smiles continues to be one of my favourite moments.
I often think back to that trip and wonder if that was the universe’s way of preparing me for the adventure that was to come with Syona and her diagnosis of cerebral palsy. That experience of staying at Amar Seva Sangam was the exact moment where I learned how rich and rewarding life can be, even if you have a physical disability. Dilip and I often talk about how much of a difference it made in our lives—not just in that moment, but on a daily basis.
Fast forward to five years later: I feel so blessed that Syona is doing well. Does she have some extra challenges? Absolutely. But the truth is that she was born into an environment that provides her with lots of support—equipment, specialists, therapies, etc. Sure, sometimes we have to advocate and these interventions add-up in terms of cost and paperwork. But they are available and we try our very best to access whatever can help her.
As Syona gets older, I often wonder if she'll realize she's one of the lucky ones. I want her to have gratitude for the support she receives. This year, when we were discussing what to do for Father’s Day, we decided we’d like to spend the day at a fundraising walkathon supporting Amar Seva Sangam. Funds raised from the event will go towards helping the very same kids we met on that trip five years ago, along with thousands of others who have come through their doors since.
It seemed like the perfect way to celebrate—we get to spend the day together and feel good about how we’ve spent our time. Syona’s got her new set of wheels and we know she loves practicing her wheeling and walking when we are out and about. On Sunday, June 21st I'll be telling her, by wheeling/walking around the course, she’s actually helping another kid like her in a country on the other side of the world. I'll tell her, one day, I hope to take her there in person to see the difference she’s made.
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