When Hanny Busono was 12 weeks along in her pregnancy, she and her husband were told that the baby girl they were expecting would very likely have Down syndrome. “Based on the markers,” the doctor said, “there is a 1 in 40 chance of Down syndrome.” Unfortunately, this news was followed up with various fear-inducing statements such as, “She won’t drive” and “She will never marry.”
Right from the start, doctors seemed to focus only on perceived negatives. Hanny’s husband Steve, a neurologist at Robert Wood Johnson University Hospital, describes, “Doctors and a few family members were encouraging us to get more invasive tests so that we could find out for sure and maybe get out of the pregnancy if we wanted to. Everybody seems to want perfection.”
But Hanny and Steve decided against the amniocentesis because they were prepared to accept and love this baby no matter what. Flashforward 13 years later, and Steve and Hanny state with overwhelming love and pride that they cannot imagine life without Jacinta! Caring for a child—and now teenager—with Down syndrome is challenging, but the good times far outnumber the hard times. Furthermore, this experience has opened an entire new community (GiGi’s Playhouse) to the Busono family.
“Jacinta loves being at GiGi’s” Hanny says. “The literacy tutoring has helped Jacinta with her poor articulation. She loves attending Cooking Club, and she also had a part in GiGi’s production of Little Red Riding Hood.”
Steve adds, “It never ceases to amaze me how Liz (GiGi’s Hillsborough Site Manager) interacts with the kids. She knows each and every one who walks through those doors.”
Equally inspired is Jacinta’s brother Devin. In fact, when it came time for Devin to pen his essay for his college application documents, he knew instantly what his topic would be: his experience as older brother to a sister with Down syndrome as well as his involvement with the Down syndrome community.
During this time of year when our thoughts turn to service, giving, and generosity, please enjoy this beautiful message and example of love, empathy, acceptance, and advocacy.
March 8, 2005: The day my sister Jacinta was born with Down syndrome. As a five-year-old boy, I had a very difficult time comprehending what Down syndrome was and what it meant for me and my family. Nevertheless, through my time spent with her, I came to know Jacinta by her love and kindness rather than her disability. However, other people in public did not see this side of her, casting strange glances towards Jacinta and calling her “weird-looking” and “retarded.” Initially furious at the gall these strangers had to make such callous remarks, I eventually became embarrassed to be with Jacinta in front of strangers. My preconceived notions of “being normal” and “fitting in” had caused me to not appreciate Jacinta for her differences. Instead, I rushed to conceal them.
I continued doing this for years until my family became involved in the Buddy Walk, a fundraising event to increase awareness and acceptance for individuals with Down syndrome. Because it was a public event, I feared that the families gathered there would be subject to the same embarrassment I felt from onlookers. As I walked into the park, however, I discovered an environment that filled me with a welcoming and unfamiliar sense of comfort: the smiles from the individuals with Down syndrome, the energizing music, and the cheers in the air celebrating our differences. Everyone was welcomed; no one was judged because of appearance or social ability. Unlike the times she fell victim to ignorant, derogatory comments, Jacinta had a wide grin on her face as she played with others. Knowing that she felt at home in this community made me glad that she could enjoy herself in public.
Seeing Jacinta quickly grow fond of the community prompted me to become more involved by volunteering as a literacy tutor at GiGi’s Playhouse, an achievement center for the Down syndrome community. Plenty of individuals with Down syndrome and their families walked through the building’s doors, and I had the opportunity to hear their stories, all of which were nothing short of inspirational. Other siblings in the same situation as myself revealed their experiences: from dealing with ignorant observers in public, to helping their brothers and sisters with Down syndrome complete their homework.
I realized though Jacinta was different, the Down syndrome community was a family where our differences unite us. I began to appreciate the diversity among those around me, and truly realized the profound positive impact these “different” individuals had on my life and mindset. These experiences helped me discover that my desire to lead a “normal” life was the result of social influence, not my own thoughts and feelings. By seeing the vast support of the Down syndrome community, I learned that I should not be ashamed of Jacinta’s differences; rather, I should take pride in them.