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.
A mom post tonight…
Just over a year ago, our adoption worker Jacquie, came to sit with us and go through our adoption preferences. Generally this is a long list of questions to help the workers decide what kind of child would make the best fit for your family. This list isn’t an easy one to get through and a lot of the questions really make you stop and think about what you’re willing to take on as a new parent: would you parent a child with mild motor delays? Would you parent a child who had been exposed to drugs or alcohol during pregnancy? Would you parent a child who was conceived out of rape? Jess and I had spent a lot of time prior to this meeting talking about the kind of child(ren) that we would be open to and to be honest, there wasn’t a lot that would scare us off. We had talked a little about adopting a child with special needs, and I was particularly open to children with medical needs. But it wasn’t until Jacquie asked the question, “would you parent a child with down syndrome,” that everything started to fall together.
Jess, in her previous line of work (previous to being the lucky mom who gets to hang with Lily all day), worked with adults with special needs and has always loved adults with down syndrome – they are her special favourites. So, when Jacquie brought up the possibility of a child with down syndrome, Jess actually got excited. It took me a little bit longer to come around to the idea. My hands-on experience with special needs until that point had been teaching a few integrated swimming lessons and spending two weeks working at the camp our friend Cathy’s (better known in Lily’s world as MeMa) respite company hosts for their clients every summer. I knew that I could handle it, but I didn’t know if it was a life that I wanted to fully embrace as my own. But I agreed, during that meeting, that I would be open to hearing about kids with down syndrome if there were any they thought might be a match for us.
And then we got the call. Less than a week after our meeting with Jacquie, she called us and told us that she was almost certain she had a wonderful match for us. She started to tell us about a tiny baby girl, only 3 months old, who was born with down syndrome and a heart condition. She knew that she had hooked us both: down syndrome AND a child with medical needs. We met a few days later in Jacquie’s office and we started to read this child’s file. Before we had even finished reading the entire thing, we were already smitten. We knew that she was just this tiny little fighter who needed some grown-up’s on her side to love her and nurture that already so brave self. Without even seeing her, we were already in love.
And that was how we ended up with our little girl with down syndrome and we couldn’t be happier with where we have ended up. There are certainly days that are tough; days when it feels like we’re never going to see the developmental gains that we want to; days when we worry about what life will be like for her in school; days where we worry that life will be cruel to her because of this extra chromosome. But those days are easily weighed out by the other days: they days when we watch her in amazement as she learns something new; days when we fall in love with her beautiful almond shaped eyes; days when we are shocked at how she just keeps rolling with the punches and still gets stronger and smarter, despite her setbacks. Lily wouldn’t be Lily without that 3×21 – it’s her cute chromosome, her dancing chromosome and her “I can make my tongue into a triangle” chromosome. In this house, it’s our favourite chromosome.