March 21 marks World Down Syndrome Day (WDSD). As a parent of two young children, I often lose track of the days, but I can feel the anticipation building for this meaningful occasion as my social media feeds fill up with posts encouraging people to “rock their socks” and “embrace the abilities.”
I cherish being part of the Down syndrome (DS) community and firmly believe that every individual with DS deserves recognition every day. However, I have contemplated opting out of this year’s celebrations. There are moments when I wish I could take a break from the realities of DS. For example, I once walked into my eldest daughter’s room and saw her unzipping the pajamas of my daughter with DS, Sophie. It struck me that while Sophie struggles with the physical skills that come easily to her younger sister, Lily, the tenderness in that moment was overshadowed by thoughts of the future. I wondered if, in forty or fifty years, Lily would show the same kindness to Sophie if she were to face health challenges, like Alzheimer’s, which is a real concern given the increased risks associated with DS.
Similarly, when I observe Lily nurturing her dolls and receiving praise for being a “wonderful mommy,” it tugs at my heart because, while that is a dream she may hold, the reality for Sophie may be different. I also grapple with guilt when planning family vacations, questioning whether we should invest in experiences or allocate funds for Sophie’s future care.
These parental concerns are universal. We all witness loved ones battling serious illnesses, yearning for dreams that may never materialize, or facing financial hardships. However, my experience with DS has stripped away the veil of ignorance that many parents enjoy. From the moment Sophie was born, we were acutely aware of the possible challenges her extra chromosome could bring, which amplifies our worries with a context that others may not grasp right away. DS is an ever-present part of our lives, and it shapes our experiences in profound ways.
Despite the challenges, I have grown fond of the DS community. When I see babies in stores, I often feel a pang of disappointment if they do not exhibit characteristics associated with DS. Encountering another person with DS creates an instant connection with families who share similar joys and struggles. DS is an integral part of Sophie’s identity; it does not define her, but it enriches her vibrant and loving personality.
What once kept me awake at night—worrying that Sophie would only be seen through the lens of her DS—has transformed into a realization that her uniqueness empowers her to leave a positive impact on those around her. In a world where some cultures actively seek to terminate pregnancies due to DS, I take pride in knowing that Sophie can challenge outdated perceptions simply by being herself. My life is enriched daily by her presence.
Ultimately, my decision to celebrate WDSD stems from a powerful experience. Recently, I observed Sophie play with a set of building blocks intended for Lily. While Lily effortlessly built impressive structures, Sophie faced difficulties due to her fine motor delays. Yet, with unwavering determination, Sophie persevered, reminding me with a firm “Help, no!” that she was capable. Each time she succeeded in placing a block, her joy was palpable—she would leap up, seeking high-fives and hugs.
Isn’t it true that we could all benefit from celebrating life’s small victories? Sophie’s approach teaches us to embrace gratitude and joy in everyday moments. She exemplifies how to live a life enriched by challenges through resilience and the pursuit of personal success. Through her laughter, her carefree dancing, and her unique block creations, Sophie embodies happiness in her authentic self. Adversity is woven into her very being, yet she continues to celebrate the little triumphs that many of us overlook.
This World Down Syndrome Day, let’s take a cue from Sophie and others with DS: revel in the small achievements, love unconditionally, spread joy, and embrace our unique narratives regardless of others’ opinions.
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Summary:
In this reflection on World Down Syndrome Day, the author shares personal experiences and insights as a parent of a daughter with Down syndrome. Emphasizing the importance of celebrating small victories and embracing the unique joys and challenges associated with DS, the piece encourages readers to appreciate life’s moments with gratitude and perspective.