World Down Syndrome Day feels good this year

Written by Sarah Koehn

This year, World Down Syndrome Day feels more meaningful for me personally, as Daphne’s Mom, and I’m not sure why. I’m using this blog post to ponder that question.

Maybe it’s because this past year has witnessed such tremendous growth in her, and several of the questions I explored for years such as, “will she talk?”, “will she have friends?” “will she get herself to the bathroom?” “will she have a full life?” have been answered.  The answer to all, happily, is YES. Not that she has mastered any of these skills by any stretch, but I’m certain she will. This has allowed me to relax a little and enjoy the uniqueness of Daphne’s personality. She simply touches people in such a special way despite the fact that she doesn’t talk much. She speaks the language of smiles, sincere and penetrating eye contact, hair stroking, and of course … hugs. In the past year, she has become “full”. She is fully a student, a camper, a sister, and a friend. Her life is full of all of the things I hoped for.

Maybe it’s because we are moving out of the house where she was born, and it’s making me emotional. Bringing her home, creating our family, making her feel loved and helping her succeed was my focus for several years in that house. Watching her scoot around the wood floors , climb the long staircases, and ride her ride-on bus through the halls are such happy memories. It was in that house that I realized Down syndrome was far from the end of the world, that in fact it was this strange, unexpected blessing.  It was our desire for a better education for Daphne that ultimately drove our family out of that house, as well.

Maybe it’s because as I see my typical kids grow up, I realize that Daphne having Down syndrome will make us a stronger family. I watch them react to her and reconcile their feelings of “what is she saying/doing?” with “who cares? she’s my sister”.  They are smart 4 year olds, and still have no clue what Down syndrome is, or that she has what is considered by most as a “disability”.  Isn’t that how we want everyone to react to our kids with any special need? Their character and personality are being shaped by so many things, including the luck of having a sister with Down syndrome.

Maybe because this World Down Syndrome Day is also GiGi’s Playhouse 2nd birthday, and I’m so incredibly proud of what we have accomplished since our opening, and optimistic about what we the next 2 years will bring. And because in this leadership role at GiGi’s Playhouse, I see amazing generosity and spirit every day. I meet parents who face their fears after receiving a prenatal diagnosis. I see strangers tear up when they see what goes on at GiGi’s. I greet volunteers who love love love their work there. And, the best part, is to meet all ages of people with Down syndrome, and appreciate that my daughter is in this wonderful “club” of individuals who share the most common genetic defect.

Either way, World Down Syndrome Day feels awesome this year. I still wonder what Daphne’s future will be like. I still look at older kids and adults and wonder if Daphne will sound like them, act like them, read like them, or even look like them.  Check back in another seven years … and I will happily let you know