I couldn’t let another World Down Syndrome Day go by without some sort of post. Looking back through, I realized that it’s been at least 2 years since I’ve spoken about this day at all, which is astonishing to me because it really is one of my favourite days of the year. Starting a few days before, my social media feed starts lighting up with all of these amazing articles, blog posts, news segments involving Down syndrome and I don’t think even a few hours can go by without me tearing up about something I’ve read or watched. One of the gifts of being part of the DS community is how quickly we all learn to appreciate the seemingly small things and to celebrate how much work and time and mastery comes with each step.
Our community’s ability to celebrate – and celebrate together – is something that has been on my mind quite a bit over the past couple of weeks. Each year the Down Syndrome Association of Toronto has a World Down Syndrome Day event. For quite a while it was held on March 21st to give our community a chance to come together, but there was the realization that while we may think it’s a day worth of a statutory holiday, the rest of Canada hasn’t caught up yet and we still have work and school and bedtimes that don’t always mesh well with a mid-week evening celebration, so it became a Pre-World Down Syndrome Day event and it’s held on the weekend prior. The day is filled with activities for all age groups and then some food and guest speakers, usually kicked off with a short talk from a parent from the community. This year, I was honoured that DSAT reached out to me to see if I was willing to speak. While I had no knew full well that I would probably make a fool of myself at some point, I jumped at the opportunity – I just didn’t know exactly what I wanted to say. The general guidelines were just to speak about our own lives with Down syndrome, but that was so incredibly vague. I didn’t want to give a history lesson of our journey, but knowing that it has been slightly different than most families we encounter, I didn’t want to ignore the role of adoption or Lily’s medical challenges, but I wanted to be able to bring some focus to the fact that even though we all start in different places, there is a reason that one of the strongest messages from our community is that “we’re more alike than different”; that even though our stories are never identical, we find a strength in our community that we have never known before. So, I sat and wrote the first draft by hand – with pen and paper. And after I stopped procrastinating by thinking about how bad my handwriting has become now that we live in the computer age, my words actually started to sound….good. At least they sounded good in my head. We’re always our own worst critics, so I can’t be confident that I was able to deliver it with the same passion that I felt, I am hopeful that at least one person heard my intent.
If, 15 years ago, you had told me that I would be standing here today, in front of all of you, celebrating Down syndrome – a disability – I would never have believed you. Like so many of us, this is not where I thought that life would take me. And yet, here we are, just before the World Down Syndrome Day and we ARE celebrating. We are the lucky ones who know, really truly know, how incredible our lives became when someone with Down syndrome entered in. We all started this journey at different times, under different circumstances and with different expectations and experiences, but we all have all ended up in this same place, this incredibly community of people who know that we are all more alike than different.
7 years ago, my wife Jessica and I got a phone call from our adoption worker. Out of her mouth came the most amazing words: “I think we have a baby for you.” And then, she began to tell us about Lily. She told us that there was this sweet, beautiful, strong 3 month old baby girl and Children’s Aid wanted a family in place for her before her next open heart surgery at 5 months old. And then she told us that this sweet, beautiful and strong baby girl had Down syndrome.
This is where we are sometimes a bit different. While we know that many of you experienced shock and disbelief with a diagnosis, we were ecstatic. It was as though we had presented fate with a wish list and fate came through on every front. You see, Jess and I knew Down syndrome: Jess has worked with children and adults with disabilities for as long as she can remember and when we started dating, it became my world too. We had said on our adoption profile that we were open to any child, but what we truly wanted was a child with Down syndrome. So when we got that phone call, it was as though our dreams had come true and 2 months later, Lily was home.
As we all know though, our journeys are never as simple as we want them to be. Jess and I had thought that we were being so smart: because this is what we had asked for we had time to plan. We knew about organizing PT and OT, we knew about Surrey Place and Centennial, we knew about SSAH and RDSP’s, and we knew Doris Power – the super woman herself. We were ready for that extra chromosome and all that it came with, and we knew that Lily’s heart condition was typical for babies with Down syndrome – that it was just the one hurdle we had to cross before our lives as a family could truly begin.
That’s when we were blindsided. For the first time, we could truly understand the shock and fear that new parents experience when faced with an unexpected diagnosis: how it can feel like the life you envisioned had just fallen through your fingers and you don’t know where to start. Lily’s heart condition was far more serious than the doctor’s had originally thought and we heard the words, “rare” and “fatal” and “heart-lung transplant”. It lead to a much longer hospital stay, followed by a short release before Lily had a cardiac arrest at home. We stood by, helpless, watching firefighters, then paramedics, and then doctors, try to resuscitate her. We stood by, helpless, as she started having seizures because of a brain injury. We stood by, helpless, when they told us she was blind. In the blink of an eye, we had more OT and PT then we ever expected and we were forced to learn an entirely new language overnight. We felt scared and overwhelmed and we felt alone.
And then we found you. We found this amazing community. We found you at Surrey Place. We found you at Halloween and Christmas parties. We found you on Facebook and riding the TTC and we found you at the Buddy Walk. And everyone’s story is a little different, and everyone’s journey has taken a different road, but we always find each other and we live and breathe the importance of this community. Some of us have been fighting for classroom integration while others are fighting for more funding for respite because we need a break, but we’re all fighting together. We fight when police bully one of our own, we fight the R-word, and we fight this crazy notion out of Iceland that the world would be better without Down syndrome in it.
We learned not to compare and not to judge each other, but to hold each other up when we’re struggling and to shout from the rooftops together when we are celebrating. And we are celebrating, because frankly, there is no group of people out there who know how to celebrate more than we do. We take great joy in knowing how lucky we are. To be able to celebrate all of the small steps that become huge victories; to be able to celebrate the love and the hugs and the beautiful hypotonia that means years of extra cuddling; to celebrate watching our loved ones exceed expectations and proving people wrong each day.
There is a phrase spreading through our Down Syndrome community, especially on social media: Omne Trim Perfectum, which means “everything that comes in three’s is perfect.” We’re here celebrating because we know that this is true. It’s true today, it’s true on March 21st and it’s true every single day of the year. Our children, our grandchildren, our brothers and sister and cousins and friends, anyone who rocks 3 copies of that 21st chromosome – they are perfect. And our lives, with them it in, have become perfect too.
So thank you for coming today. Thank you for being our community, our strength and our family. Thank you for fighting and for advocating. But most of all, thank you for celebrating, because we truly are the lucky ones.
