When Ellie was in the NICU, I reached out to our local Down Syndrome Association. I remember typing that message in the comment section of their website, Ellie was in the NICU and we were scared and confused, and I wrote our tiny story, a story that had only just begun. Within hours I received a response and within days I had been contacted by two wonderful families. Their voices over the phone felt like hugs and I began to see, from the beginning, how welcoming this Down Syndrome family is.
When Ellie was about a month old, we attended our first Christmas party with our local Down Syndrome Association. I was tired, so tired, living in a daze of little sleep and so many appointments. I was actually really worried about bringing Ellie to a place with so many people, pre heart surgery I was afraid she’d get sick. The party felt like a blur, people wanting to talk to us and me not being ready. Not ready to tell our story and talk about a diagnosis with strangers.
As these years have gone by, and I’ve grown so much, we haven’t missed a holiday party with our local association. We are members and unfortunately can’t attend a lot of events, but the holiday party is an event that I will always attend. There are families from every part of our community and we are all different. Yet we all have one tiny part of us that we share, we love someone with Down Syndrome.
This past Sunday was the annual Christmas party. We sat at a table with a 20 year old woman with Down Syndrome and her parents. We talked about school and how things can be hard, and we discussed the battles you sometimes have to fight. And the parents who had been through it before looked at the parents who had only just begun and they smiled, a little bit of a nervous smile. And we both acknowledged that there are battles you have to fight and those fights are hard but worth it. But then they told us about their daughter’s life and they listed off all of her activities and how she’s been playing hockey since age 8, and how she’s going to be on the news next week. And I saw her smile and the glow from it surrounded her. And we all laughed and the parents who had been through it before looked at the parents who had only just begun and they smiled, a bit of an excited smile, as if to tell us how lucky we truly were.
As the party was coming to a close, Santa arrived, and I felt like I was 5 years old again, and I sort of started to believe in his presence, in the magic of this season, for it was tangible in that room. There was a feeling of love and pride in that room, I could feel it when we went to our first holiday party but I didn’t quite understand it yet. As we were about to leave, a boy, maybe 10 or 11, who had Down Syndrome stopped us to say hello. He had that full body smile that fills your heart and he looked at Ellie and said, “you, I love.”
No matter how involved I am with our local Down syndrome association, I will never miss this party, it’s my favourite day all year.