Today marks the 10th anniversary of World Down Syndrome Day, a global awareness day celebrated on the 21st of March every year. The date, which represents the three copies of chromosome 21 that are unique to people with Down syndrome, has been officially observed by the United Nations for the past 3 years. Today, activities and events will be taking place all around the world to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities. The theme for 2015 – My Opportunities, My Choice – promotes equality and empowerment for people with Down syndrome through assistance, protection and support.
Ben is my big brother. Born 3 years after him, I wasn’t there for his birth or the early years of heart surgeries and ICU. I didn’t understand that he was in any way different from me until I began to learn at a faster rate than him. And over the years I started taking care of him instead of him taking care of me.
I knew the person before I knew the condition. I knew the person before I even knew how to pronounce Down syndrome, or could remember that that’s what he has. He’s like any brother. Yeah he bugs me sometimes. I bug him! That’s what siblings are for.
Ben has grown up to be a charming, sensitive man with incredible depth of character and a ridiculous sense of humour. Like any person he has his bad days too. He can be stubborn beyond belief, grumpy, and downright annoying.
Through all the good times and the bad, Ben has taught me tolerance, compassion and unconditional love, and has brought my family together in a fundamental and harmonious way. But this unit requires hard work and determination. The transition to adulthood has certainly been a bumpy ride. For Ben, communicating his feelings and expressing himself emotionally seem particularly difficult.