March 21 marks World Down Syndrome Day (WDSD). As a parent of two young children, I often lose track of the days. However, I am reminded of this significant occasion as my social media feeds fill up with calls to “rock our socks” and celebrate the inherent abilities of individuals with Down syndrome (DS).
Being part of the Down syndrome community is something I cherish deeply. I firmly believe that those with DS deserve recognition every single day. Yet, I have contemplated skipping this year’s celebration. There are moments when I wish I could take a break from the reality of DS. For instance, one day I entered my older daughter’s room to find her unzipping the pajamas of my younger daughter with DS. While it was a cute sight, it struck a nerve.
I couldn’t help but envision a future where my older daughter might face challenges due to Alzheimer’s, which is statistically more likely for individuals with DS. I hope that my younger daughter will be there, offering the same love and care she shows now. Or when I see my older daughter playing with her dolls and hear someone praise her as a “wonderful mommy.” In those moments, my heart aches as I recognize that this dream may not be attainable for her.
These concerns are common among parents, as we all grapple with the possibility of illness, unfulfilled aspirations, and financial pressures. However, our journey with DS has robbed us of the blissful ignorance that many parents enjoy. From the moment of my daughter’s birth, we have been acutely aware of the potential challenges her extra chromosome brings, giving our worries a context that many parents do not experience initially. DS is a constant presence in our lives; it is simply part of our reality.
Despite the difficulties associated with DS, I have developed a strong affection for this condition. When I see babies in public, I often feel a twinge of disappointment when they don’t exhibit the distinct features of DS. Conversely, encountering others with DS creates an instant connection, a shared understanding of the joys and hurdles that come with it. While DS is a facet of my daughter’s identity, it does not define her; rather, it enriches her vibrant personality.
The same thoughts that once kept me awake at night—fearing that she would only be seen through the lens of her DS—now empower her to leave a positive impression on those she meets. Given the societal trend toward prenatal termination of pregnancies diagnosed with DS, I take pride in knowing that my daughter challenges outdated perceptions simply by being herself. My life is undeniably enriched by the presence of Down syndrome, but that is not the sole reason I have chosen to celebrate WDSD this year.
Recently, I observed my daughters during playtime. The blocks were a gift intended for my older daughter, who has shown a keen interest in them. My younger daughter, however, struggles with fine motor skills, making it difficult for her to manipulate the blocks effectively. Despite this, she displayed incredible patience as she attempted to fit her blocks together. When I offered to help, she firmly replied, “Help, no!” asserting her independence.
While my older daughter quickly assembled multiple blocks into a perfect structure, my younger daughter’s creation was more haphazard and uneven. However, the moment she succeeded in clicking a block into place, she erupted with joy, seeking high-fives and hugs from me. This cycle of celebration continued with every small victory she achieved.
Isn’t it true that we could all benefit from more celebrations? Acknowledging every success—no matter how small—and learning from our mistakes can lead to a more joyful existence. My daughter’s approach to life teaches me the importance of resilience and finding fulfillment in personal achievements. She dances with abandon to her favorite songs, laughs at her own jokes, and constructs block towers that defy conventional expectations. Her happiness stems from her authentic self, blissfully unaware of limitations. Adversity may be woven into her very being, yet she perseveres and finds reasons to celebrate every day.
This WDSD, let us emulate the spirit of individuals like my daughter: embrace small victories, cherish differences, spread positivity, and craft our unique narratives without concern for others’ opinions.
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In summary, World Down Syndrome Day serves as a reminder of the importance of celebrating every moment, embracing differences, and fostering connections within our community. Through the experiences of my daughters, I am inspired to recognize the value of perseverance and joy in the face of challenges.