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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.\u00a0 \u201cBased on the markers,\u201d the doctor said, \u201cthere is a 1 in 40 chance of Down syndrome.\u201d Unfortunately, this news was followed up with various fear-inducing statements such as, \u201cShe won\u2019t drive\u201d and \u201cShe will never marry.\u201d<\/p>\n
Right from the start, doctors seemed to focus only on perceived negatives.\u00a0 Hanny\u2019s husband Steve, a neurologist at Robert Wood Johnson University Hospital, describes, \u201cDoctors 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.\u201d<\/p>\n
But Hanny and Steve decided against the amniocentesis because they were prepared to accept and love this baby no matter what.\u00a0 Flashforward 13 years later, and Steve and Hanny state with overwhelming love and pride that they cannot imagine life without Jacinta! \u00a0Caring for a child\u2014and now teenager\u2014with Down syndrome is challenging, but the good times far outnumber the hard times. Furthermore, this experience has opened an entire new community (GiGi\u2019s Playhouse) to the Busono family.<\/p>\n
\u201cJacinta loves being at GiGi\u2019s\u201d Hanny says. \u201cThe literacy tutoring has helped Jacinta with her poor articulation. She loves attending Cooking Club, and she also had a part in GiGi\u2019s production of Little Red Riding Hood.\u201d<\/p>\n
Steve adds, \u201cIt never ceases to amaze me how Liz (GiGi\u2019s Hillsborough Site Manager) interacts with the kids. She knows each and every one who walks through those doors.\u201d<\/p>\n
Equally inspired is Jacinta\u2019s brother Devin.\u00a0 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.<\/p>\n
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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.<\/p>\n
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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 \u201cweird-looking\u201d and \u201cretarded.\u201d 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 \u201cbeing normal\u201d and \u201cfitting in\u201d had caused me to not appreciate Jacinta for her differences. Instead, I rushed to conceal them.<\/p>\n
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.<\/p>\n
![\"\"](\"https:\/\/gigisplayhouse.org\/hillsborough\/files\/2018\/12\/Jacinta3-225x300.jpg\")
Seeing Jacinta quickly grow fond of the community prompted me to become more involved by volunteering as a literacy tutor at GiGi\u2019s Playhouse, an achievement center for the Down syndrome community. Plenty of individuals with Down syndrome and their families walked through the building\u2019s 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.<\/p>\n
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 \u201cdifferent\u201d individuals had on my life and mindset. These experiences helped me discover that my desire to lead a \u201cnormal\u201d 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\u2019s differences; rather, I should take pride in them.<\/p>\n","protected":false},"excerpt":{"rendered":"
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.\u00a0 \u201cBased on the markers,\u201d the doctor said, \u201cthere is a 1 in 40 chance of Down syndrome.\u201d Unfortunately, this news was followed up with various fear-inducing…<\/p>\n","protected":false},"author":72,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[4,6,77,41,36,78],"class_list":["post-129486","post","type-post","status-publish","format-standard","hentry","category-uncategorized","tag-central-new-jersey","tag-down-syndrome","tag-family","tag-generation-g","tag-gigis-playhouse","tag-prenatal-diagnosis"],"_links":{"self":[{"href":"https:\/\/gigisplayhouse.org\/hillsborough\/wp-json\/wp\/v2\/posts\/129486","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/gigisplayhouse.org\/hillsborough\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/gigisplayhouse.org\/hillsborough\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/gigisplayhouse.org\/hillsborough\/wp-json\/wp\/v2\/users\/72"}],"replies":[{"embeddable":true,"href":"https:\/\/gigisplayhouse.org\/hillsborough\/wp-json\/wp\/v2\/comments?post=129486"}],"version-history":[{"count":0,"href":"https:\/\/gigisplayhouse.org\/hillsborough\/wp-json\/wp\/v2\/posts\/129486\/revisions"}],"wp:attachment":[{"href":"https:\/\/gigisplayhouse.org\/hillsborough\/wp-json\/wp\/v2\/media?parent=129486"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/gigisplayhouse.org\/hillsborough\/wp-json\/wp\/v2\/categories?post=129486"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/gigisplayhouse.org\/hillsborough\/wp-json\/wp\/v2\/tags?post=129486"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}