Thursday, March 21st, 2013
To help honor World Down Syndrome Day, we asked Colette Cosky, a mother of two and a marketing executive in San Diego, to share her thoughts. After her son was born with Down syndrome, she founded the organization Down Right Awesome and helps raise awareness and support for Down syndrome research.
For me, World Down Syndrome Day is an opportunity to broaden everyone’s perception of Down syndrome by seeing it through the eyes of the families who live it. I’m one of those families; my 2-year-old son, Dexter, has Down syndrome. (There we are, in the collage.) While we all have some things in common, no experience is the same and not everyone shares the same passions or beliefs. My passion is my commitment to cognitive preservation because Dexter, like all children with Down syndrome, is predisposed to early-onset Alzheimer’s disease. Here’s what I want other families to understand.
As I live my life, the pages of my mental scrapbook are filled with really big moments, with scents that take me to specific places in time, and with faces of those who’ve left my life in one way or another. It’s here I can visit my 4-year-old Eloise back when she was 2, or my Nana, who passed just a year ago. I can go to those memories at any time to rewind, re-live, and re-love.
In the early days of my experience with Down syndrome, I was consumed with all the things I thought Dexter couldn’t or wouldn’t do. Now that’s not the case. I think the only time I get anxious or sad is when society pulls out its standardized ruler and judges my son. Like now, as we search for a preschool, the experience is not the same as when we looked for our daughter. Without even meeting my son, people give us gentle letdowns explaining how the school can’t handle Down syndrome. But if they’d only put the person first, we know they’d see a kid who loves to be with others, who is fascinated by books, and who is eager to learn new things.
But when that standardized ruler is away, the family will play. Our kids are a crackup and seeing them together gives us great joy. Though Dexter is not walking yet, he certainly gets around. In fact, he and his big sis have devised a new game called “toss the fruit and get it.” Then they both go off in a mad-dash army crawl to get the faux fruit they’ve flung across the living room. Their giggles are infectious. I’m certain I’ll have the same smile on my face when I recollect this a long time from now.
I am also positive that I’ll keep with me the memories of our Buddy Walk teams and how I cried tears of joy (and release) the first time our team stepped out to the sweet sounds of a New Orleans-style second line band. Surrounded by our amazing friends, both old and new, we’ve made a tradition of parading in style through San Diego’s Balboa Park, waving signs and twirling hankies – this year we even added parasols!
With these grand memories will also be simpler moments, like when Dexter strings words and signs together to say “Mama, I want more hugs.” This one currently melts me.
Even the bitter memories have a place and purpose. Two years later, recalling the time surrounding the birth of Dexter is painful. I was caught off-guard by the words Down syndrome, given a false sense of security by 55,000-in-1 odds against it, and I had a less-than-desirable hospital experience. Though I often feel guilty for feeling great sadness at his birth, I know I can’t change it. But I can use it as a marker to see how much things have improved–something I never thought possible at the time.
To lose this scrapbook of memories, to lose the ability to go back in my mind and pick a page, would be unimaginable. I wouldn’t wish it on anyone and I certainly don’t want it to happen later in life to Dexter. I believe he’ll always want to look back on moments that made an impact on his life. I just can’t let them be taken from him, and it’s why I care so deeply about cognitive research.
So I started an organization with my husband and friends called Down Right Awesome®. We use our forum to share and advocate for cognitive research, and to also promote inclusion for individuals with Down syndrome on our blog, Facebook, and Twitter. If you’d like to learn more about the early onset of Alzheimer’s in individuals with Down syndrome please visit Down Syndrome Research and Treatment Foundation. In addition to Alzheimer’s research, DSRTF is also exploring ways to improve the overall cognitive ability of individuals with Down syndrome. And to help support DSRTF’s research you can donate directly on the site, or by purchasing a Down Right Awesome t-shirt on our site. All proceeds from shirt sales go to support DSRTF research.
By supporting research now, I hope that I can help Dexter in the future. His mind and thoughts hold no less value than yours or mine. They’re his to keep and, as his Mama, they’re mine to protect.