A Loving Tribute to Carla Gene Shankle
A message from GLOBAL’s President & CEO, Michelle Sie Whitten
Cable Baby & Role Model
Growing up in the cable TV industry in Colorado (as I remember it) there were several friendly “camps” – the Bob Magness/John Malone camp, the Bill Daniels camp, the Glenn Jones camp, and the Gene Schneider camp to name a few. Being a self-described “cable baby” in the Magness/Malone camp, I was vaguely aware of other families my parents were friends with including Gene Schneider and his kids – Mark, Tina and Carla. Carla especially had the reputation of being one of the nicest people ever, but I didn’t get a chance to really get to know her until I moved back to Colorado with my husband Tom around 2000.
Carla and her equally wonderful and sweet husband Matt visited Tom and me after we told people publicly that our first-born child would have Down syndrome, and again several times after our Sophia was born.
They proudly introduced us to Alexandra who was about five years old at the time and was born with Shprintzen-Goldberg syndrome. There are less than 50 people with the syndrome worldwide – an extremely rare connective-tissue and cranial disorder characterized by craniofacial and skeletal anomalies and intellectual disability that affects developmental motor and communication skills, vision and hearing from birth.
It was clear to Tom and me that despite the multitude of surgeries and challenges Alexandra was facing, she was thoroughly loved and doted on by Carla and Matt and through that love she was able to communicate, be heard, and enjoy what she wanted to do.
While Tom and I may have already made the decision “to keep” Sophia (so embarrassing to think of it that way now), meeting Carla and Matt with Alex helped to confirm we were making the right decision. After all Tom and I loved each other to the moon and back, and our child would be a literal and figurative combination of the best of both of us. Just like our role models Carla and Matt.
Years later, after I started the Global Down Syndrome Foundation, we had 16 people audition for the first Be Beautiful Be Yourself Fashion Show, and we were delighted that Alex was one of the models. Though we had intended to only have 10 we accepted all 16 models who had intellectual and developmental disabilities (IDD).
The original plan was to always have a mix of models with various IDD but by the third year of the fashion show we would have 50 names, all with Down syndrome, sign up within the first 20 minutes. Turns out being a model in our fashion show was one of MANY things Alex loved to do so she became the singular reminder each year that our children and adults with Down syndrome are part of a bigger community of fabulous people who happen to be differently-abled.
A Family & Community Legacy
When Alex’s siblings, Geno and the twins Holly & Kelsey were born, the number of people who adored Alex and also understood the value of diversity in the world grew exponentially. It was clear that Carla and Matt were beyond wonderful parents. Carla and the kids sadly lost Matt to cancer in 2011 but Carla somehow soldiered through with the amazing support of her sister Tina and family locally, her wonderful kids who were growing up to be as kind and giving as her and Matt, and a network of many, many friends from all walks of life.
While Carla was no intellectual slack (she received her BA from Colorado College and her JD from DU Law School), she had a definite love for enjoying life – playing sports, watching sports (especially the Broncos), international travel, colorful clothes, and cocktails were some enjoyments at the top the list! She instilled the love for life and actively participating in all her children, and the fact that Alex was a Girl Scout Brownie, and continues to enjoy Right Step Horseback riding, Dare to Cheer, Dance Athletics Denver, National Sports Center for the Disabled (NSDC) and Adam’s camps, basketball, and baseball is a testament to how Carla ensured her family’s lives are filled with activity and happiness.
One thing that was always striking to me was that Carla always had people helping Alex who genuinely cared about Alex and who understood that she had desires – what color her nail polish was, what outfits to buy or wear, what activities to participate in. And her mischievous nature, which included the act of “stealing” your nose and then throwing it away while giggling, was always encouraged.
In addition, Geno, Holly and Kelsey were always there for Alex and volunteering in many of Alex’s activities. It was clear they felt infinitely comfortable with our Sophia and anyone who was differently-abled. Their gregarious natures meant loads of friends in and out of the Shankle household who also became friends with Alex and expanded their circles of diversity. Watching Carla and her family thrive was inspiring and sometimes unbelievable as she always made it look so seamless.
Tragically, Carla passed away last month at the age of 62 with her loving family by her side. It was no surprise that it was standing room only at Carla’s funeral or that everyone was asked to wear bright colors or that her preferred photo was with a drink and at a Broncos game! The speeches had us laughing more than crying and left us feeling that Carla had left a legacy for her four beautiful children and extended family as well as for our disability community where she was a fierce advocate for special needs rights, health and education.
Our hearts go out to Carla’s children. It is hard to understand how the world keeps going after someone as vibrant as Carla leaves us. At her funeral we were given consolation in that Carla, Matt, her parents and other loved ones will be united, but we will miss her deeply.
We are very moved that Carla and her family listed the Global Down Syndrome Foundation as one of the non-profit organizations that friends and families can donate to in honor of Carla’s life. We will work hard to honor the memory and legacy of Carla Gene Shankle and to make sure that Alex will always be a part of our GLOBAL family.
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