Our first Christmas with Daniel was before he was even born. Unbeknownst to him, he made his first plane ride in utero: a trip to see my dad in Florida. We visited New Smyrna Beach which has been a special spot for my family for a long time, from the time of my paternal great-grandparents. I walked the water line and took pictures while Daniel’s two-year-old sister walked into the ocean for the very first time with her Pap-pap. My husband and I attended a performance of Cirque du Soleil at Downtown Disney in Orlando. I felt his first kick while watching Jeopardy on my grandparents’ couch.
We didn’t know if he was a girl or a boy yet, and we definitely didn’t know he had Down syndrome. I was 27 years old at the time, and Down syndrome was not on my radar. It was so long ago that I don’t remember what my hopes or expectations were for the baby I carried inside me, but I had a feeling, from the very beginning, that something would be different about him.
For Daniel’s first “earthside” Christmas, he was six months old, and I was just emerging from the fog of his birth diagnosis. I had decided that the best way to get through the tough emotions surrounding the diagnosis was to jump in with both feet. So, we did. We attended our first Buddy Walk when he was 4 months old, then we attended the DSA Christmas party. I still have the DSA newsletter in which his birth was announced, and our family was lovingly welcomed into the Down syndrome club.
I can’t express how helpful it was for us to see teens and adults with Down syndrome at both events. I still get the biggest thrill when I see a huge group of adults with DS tearing up the dance floor. Is there a person with Down syndrome who doesn’t love dancing? I haven’t met them yet, but they must exist!
When Daniel was born, I was so afraid that my vision of how Christmases, and further, my family’s whole lives, would be altered by Daniel’s diagnosis. But DSA events were my first glimpse into how our lives could look as Daniel grew into a toddler, child, (now) tween, teen, and adult. And there is so much joy there!
Now, at age 10, Daniel definitely has his favorite traditions. The Advent wreath. Leaving his shoes out for St. Nicholas’ Day. Decorating the tree while listening to Christmas music, sipping hot chocolate, and eating cookies. Leaving out cookies and milk for Santa and a carrot for his reindeer. The DSA Christmas party, of course (though some years we haven’t made it due to illness). Christmas Eve with Grandma and Grandpa. Matching Christmas pajamas! Reading ‘Twas the Night Before Christmas as well as the infancy narrative in the Bible on Christmas Eve. This year he is asking for a chocolate cake to eat on Christmas. He says it’s for Jesus’ birthday, but I think it’s just because Daniel really likes chocolate cake!
From the anticipation before Daniel’s birth, through the initial fear of his diagnosis, and into the present, Christmas has been a touchstone for us, a time to set aside some of the busyness of our everyday lives for faith, traditions, and family. I will forever be grateful to the DSA for being there for us from the time our family started our journey with Daniel to today and, hopefully, for many years to come.
