The Encounter That Reminds Me Why I Love Down Syndrome Awareness Month
I love October!
First, we get to celebrate the birth of my daughter KC and the incredible blessing she is to our family. Second, it’s Down Syndrome Awareness Month!
You may wonder why that’s a thing and why I’d be excited to spend a whole month spreading awareness, and to answer that I’d like to share a recent encounter we had.
A couple months ago we went on a quick grown-ups trip to Savannah with friends to celebrate my birthday. Our first day there we booked a nighttime ghost tour. We were about 20 minutes into our tour and the guide was telling us a story about someone born who was different. Story was the man was buried in the cemetery near us and still haunts the area. Our tour guide described this abnormal man by saying, “He didn’t have anything real serious. Not like Down syndrome. God forbid!”
Ugh! My heart sank when I heard those words. I wanted to give him a piece of my mind right then and there, but instead I made eyes at our group and we all agreed we were finished with the tour and so we walked off. We emailed the company later to let them know why we left. We didn’t send them an angry letter or ask for a refund. We truly just wanted to educate them on how “not serious” or “God forbidden” Down syndrome is. We wanted them to understand they can tell their story and make the same points with being offensive.
I spent the next few days stewing over the encounter. This man thought a Down syndrome diagnosis was the worst thing a person could have. Let that sink in for a moment. My thoughts next moved to the fact that KC’s heart defect was something I’d put the in the “real serious” category along with her very premature arrival into this world but not her extra chromosome. And as far as the “God forbidden” part goes, I actually believe God created her with 47 chromosomes. I believe she was “fearfully and wonderfully made.”
Even if you don’t share that belief with me, I feel that you couldn’t know KC and not accept that her life has meaning. She has defied all odds just to be where she is today, and I believe it is because she was created with purpose that she continues to soldier on.
I always like to share a little bit about KC just to make it apparent how much like any other little kid she is. She’s seriously smart, has an incredible memory, currently loves all things Olaf, can give the warmest embraces on the planet, loves to tell jokes and make people laugh, can sing potty language words to the tune of just about any song imaginable, is super picky about her shoes, loves all kinds of food, makes a game of sneaking my coffee and thinks the Cha Cha Slide was created just for her. Down syndrome is definitely a part of her, but it is not all of her. There is really no reason the words “God forbidden” should be used in connection to her diagnosis. Her diagnosis does not scare me. Her extra chromosome doesn’t keep me up at night or make me question her creator. It’s the fact that there are people who would describe her extra chromosome as the worst-case scenario in terms of diagnosis that terrifies and saddens me. Some days it even angers me, but I’ve found an angered response is least effective.
Although the company we emailed about the offensive remarks did not respond with care or remorse, this post isn’t about putting this man in his place or teaching him a lesson or boycotting his business. It doesn’t seem likely we’ve changed this tour guide’s opinion about Down syndrome, but I do appreciate how experiences like this always cause me to reflect and give me opportunity to inform. I read a quote one time that said, “Sometimes the things we can’t change end up changing us.”
This right here is the reason I write about our experience, and this is why this month means so much to me. My best defenses against these scenarios are love and education. There was a time when I was completely uneducated and surely made offensive comments about disabilities I didn’t understand. However, KC’s existence has taught me more than I ever imagined. The love she brings has changed our lives, and she has brought us into a community of chromosomally enhanced friends and their families that would all agree their lives have taken a turn they didn’t expect but all for the better.
Unfortunately these types of offensive comments in regards to Down syndrome are inevitable. But I think it’s important the world doesn’t see a community constantly offended and in uproar, spewing hateful remarks over ignorant words. I much prefer they see our Down syndrome community so tightly bound with the unconditional love we’ve been able to experience through our little blessings, that we can educate when possible and move on with the confidence that we have been given the perfect kid for us.
I’m so proud to be KC’s mom, and I’m thankful I get the opportunity to share what we’ve learned with the hopes that misconceptions will continue to be changed. Yes, she has an extra chromosome, but the thing that stands our most is that she’s a little girl, sometimes naughty, always full of personality and above all the most “real serious” things about her is that she is a worthy and capable enhancement to our world.