March 21 marks World Down Syndrome Day (WDSD), a date that, amidst the chaos of motherhood with two young children, stands out in my mind. Although I often lose track of the days, my social media feed has been buzzing with invitations to “rock my socks” and celebrate the abilities of those with Down syndrome (DS).
As a proud member of the Down syndrome community, I believe that every individual with DS deserves recognition every day. However, I’ve contemplated the idea of stepping back this year. There are moments when I yearn for a reprieve from the realities of DS. For instance, I once walked into my older daughter’s room to find her unzipping the pajamas of my younger daughter, Lily, who has DS. While it was a charming sight, my mind quickly raced ahead to concerns about the future. What if Lily faces difficulties as she ages, such as Alzheimer’s, a concern heightened by her extra chromosome? Would her sister, Emma, be there to offer support and affection?
These are typical parental fears. Many of us have seen loved ones endure serious health issues, chase after unfulfilled dreams, or navigate financial burdens. But having a child with DS has stripped away the blissful ignorance that many parents enjoy; we are acutely aware of the potential challenges from the moment of diagnosis. Much like chronic pain or an ever-present nuisance, DS is woven into the fabric of our daily lives.
Despite the challenges, I have developed a deep affection for this condition. When I see children in public, I often feel a pang of disappointment if they don’t exhibit the unique traits associated with DS. Spotting someone with DS creates an immediate, unspoken connection with families who understand both the joy and the struggles that accompany a loved one with this condition. DS is an integral part of Lily’s identity; it shapes her into the vibrant, affectionate, and determined individual she is.
What once kept me awake at night—fearing she would be defined solely by her condition—has shifted to an understanding of how her uniqueness allows her to leave a positive impact on those around her. In a world where some are working to eliminate DS before birth, I take comfort in knowing that Lily can challenge outdated perceptions simply by being herself. My life is undeniably enriched by her presence.
However, this is not the sole reason I’ve chosen to participate in WDSD this year. Recently, I observed an enlightening moment while playing with blocks that were a gift for Emma. She easily stacked and arranged blocks into complex structures, whereas Lily struggled to align a single block due to her fine motor delays. Yet, with unwavering determination, Lily kept trying and, upon finally achieving her goal, erupted with joy, running to me for high-fives and hugs.
Perhaps we could all learn from such moments of celebration. Every small victory, every lesson learned from a misstep, deserves acknowledgment. Taking cues from Lily’s resilience, I’ve come to appreciate the importance of finding joy in life’s little moments. She shows me how to embrace challenges, dance freely to her favorite songs, and build her own narrative, regardless of external opinions.
This World Down Syndrome Day, let’s celebrate like Lily and countless others with DS: relish the small achievements, love others unconditionally, share joy, and build your own story authentically.
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In summary, this year I’ve chosen to celebrate WDSD to honor the small victories and the joy that comes from embracing our unique journeys.
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