A mom post tonight…
We’re very lucky to have some incredible role models for Lily within our Down Syndrome family and sometimes I need those role models as much, if not more, than she does. There are times when we’re hitting a milestone roadblock or we’re up to our ears in non-stop vomiting that I find an unmeasurable amount of solace in looking at Lily’s counterparts and enveloping myself in their amazing lives.
In 2012, the UN General Assembly declared March 21st as World Down Syndrome Day, “to reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.” (Ban Ki-moon).
Last year was our first year celebrating World Day Syndrome Day as Lily’s parents and we celebrated it quietly and with just the three of us. This year we chose to spend the day embracing our lives in this amazing community we are surrounded with. We were honoured to start our day with the Canadian Down Syndrome Society in opening the market at the Toronto Stock Exchange. Though it began a little rough, with an unintentional sleep-in causing us to rush to try and get out the door and then getting thoroughly turned around between the Exchange Tower and First Canadian Place, once we stepped into the broadcast studio we were quickly reminded why we were there. If you looked beyond the “official” types who were there representing different Down Syndrome affiliate groups, you would find yourself immersed in a group of parents and supporters watching, with so much pride, these individuals displaying the best parts of human nature – engaging, kindness, laughter and so incredibly supportive of one another. We had time to speak with a few of the self-advocates and I was filled with so much joy listening to them speak about their ambitions, their careers, their passions – so many of them echoing similar sentiments: that they simply want to educate people about what it’s like to live with Down Syndrome; to show people, who aren’t as lucky as we are, that having Down Syndrome doesn’t detract from you life, it enhances it.
On this day last year I spent my time reflecting on what Lily’s life was like at the moment – what her diagnosis was bringing to our lives right then. This year I find myself picturing where her life will take her and how I really and truly believe that her life is going to be amazing. There are so many people our there right now- self-advocates standing up to be heard, parents demanding their children not be dismissed – paving the way for the next generation of kids with Down Syndrome. As time passes and each March 21st brings more awareness, I hold on to the hope that inclusion and integration will no longer be catch phrases but will actually be the norm; the hope that when Lily is ready to take the world by storm – as I know she will – the world will be ready for her and truly see her abilities.
* Special thanks to Trina Hoadley for the amazing photos of Lily, as part of Toronto’s Circle 21 World Down Syndrome Day celebrations. You can see more of her beautiful work here.