Need for Speed.
Around four months pregnant with Sandler, I was told he was high risk for Downs Syndrome and possible birth defects. Simultaneously, Bootsie was also being assessed for significant cognitive setbacks as well as delays in fine and gross motor skills. I was relieved when Sandler’s amnio came back with no alarming birth defects or Downs Syndrome. However, several weeks later the Genetics Counseling Committee Of Colorado called to tell me that Sandler had something they had never seen before—an unbalanced translocation of chromosomes two and eight. I felt like I had been blindsided by a “parental Mack truck” and struggled to process the overwhelming influx of information.
Naturally, Bootsie and I were tested as well. Though I do not share the chromosomal imbalance, they found that I am not only the carrier, but that Sandler and his sister have an identical breakdown of chromosomes. Upon asking what that meant for my kids, I was responded to with scratching heads. My children are the only two people in the world who have their particular diagnosis. We immediately started seeing a geneticist. They gave me a three page list of probable things that could affect both kids’ development that are common with chromosomal disorders. I could not read the list. The thought of anything being wrong with my children was painfully debilitating. As I stared blankly at this laundry list of potential problems, what hit me the hardest was understanding my children may never be able to enjoy, or even play, sports.
Growing up in a generation without cell phones, cultivated technology, or social media—my entertainment revolved stemmed from my imagination and playing sports. I was skiing by the time I was walking, I was related to Olympic athletes, and was a nationally ranked tennis player at twelve years old. Granted, my tennis career was over before it began, but it was my life nonetheless. I was an awkward kid at best, and sports inevitably gave me the confidence to get through childhood. I could not handle hearing my children would probably never be able to ride a bike, or even walk, due to their brains lack of communication with their muscles.
It was made abundantly clear they would suffer from a vast number of complications, however Sandler and Bootsie are the definition of an anomaly. They started walking, then climbing, and running—Both are now Special Olympians for track and field. Sandler continued to defy the odds, and added skateboarding to his repertoire. I did not have expectations of raising gold medalists, but I did always hope they would be able to experience the joy and benefits of sports. At ages eleven and fifteen, Sandler and Bootsie have won countless gold medals in the Special Olympics. Sandler also will happily spend eight consecutive hours on a skateboard, yet still beg for ‘five more minutes’ when it is time to leave. We may be labeled “special needs,” but we like to call it our “special need for speed.”
- Nikki